tag:blogger.com,1999:blog-79757951431417600532024-02-18T23:44:50.372-08:00Our mini Cooper's bumpy road...Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-7975795143141760053.post-60204701395390604442014-01-27T03:19:00.001-08:002014-01-27T03:19:30.569-08:00Everything is Connected<a href='http://dy.si/iqWG' target='_blank'><img src='https://25f2cf0769ef5eb904ff-3ee98e57c0458511db69239ac1ed3dcb.ssl.cf2.rackcdn.com/114501/article/408a476d-acdd-4908-8c78-2bb1f5460e06_B320'></a><h2><a href='http://dy.si/iqWG' target='_blank'>Everything is Connected</a></h2> Did you know that every organ in your body is connected to the brain via nerves and many of these nerves arise from the spinal cord? If you are subluxated, these organs may not be receiving adequate communication from the brain and disease and disorder may follow <hr /><a href='http://www.amplifeied.com' target='_blank'>Amplifeied</a>Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-15831250679323475502014-01-26T05:51:00.001-08:002014-01-26T05:51:09.064-08:00How Will Chiropractic Change Your Life? <p>See how a holistic chiropractic approach changed this life.</p><a href='http://dy.si/Z8j6' target='_blank'><img src='https://25f2cf0769ef5eb904ff-3ee98e57c0458511db69239ac1ed3dcb.ssl.cf2.rackcdn.com/114501/article/f6941f9f-c3e5-4cd3-b423-6a0bcd592567_B320'></a><h2><a href='http://dy.si/Z8j6' target='_blank'>How Will Chiropractic Change Your Life? </a></h2><hr /><a href='http://www.amplifeied.com' target='_blank'>Amplifeied</a>Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-79662626304017241852013-07-11T10:50:00.005-07:002013-07-11T10:50:45.943-07:00Welcome backIt seems that writing has taken a back seat to life since this is my first post in almost a full 6 months! Life is certainly warmer now that it's July but it's also much brighter...and not just from the sunshine. Our mini Cooper's road no longer seems so bumpy, and he isn't quite so mini these days either. Our little fighter boy is a whopping 15lbs and the happiest baby boy you'll ever meet. Not a day passes that I don't shake my head in disbelief that this is the same boy I met attached to so many tubes, wires, and beeping monitors. Now he's lively and overflowing with joy. He's always (well, almost always) smiling and giggling. He's rolling and squirming his way around rooms and doing an amazing job of sitting up on his own as well. He's come so far and I couldn't be more proud!<br />
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Our sassy girl<br />
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Floor time<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO0J6OxhqS0uB3pJBs0o64iu67BwnBvIKZw-hw7-HunOrHLcB42kpCmM7hZdr79vCMzyI_K3gqAQ877IZusdgKFvYQcyxJOmEjB6TrNA4GwBbrHOLqyHq2ufZcGysRgQ-A6xSNbA774aWo/s1600/1044762_399829313471523_1226480203_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO0J6OxhqS0uB3pJBs0o64iu67BwnBvIKZw-hw7-HunOrHLcB42kpCmM7hZdr79vCMzyI_K3gqAQ877IZusdgKFvYQcyxJOmEjB6TrNA4GwBbrHOLqyHq2ufZcGysRgQ-A6xSNbA774aWo/s320/1044762_399829313471523_1226480203_n.jpg" width="320" /></a>He knows his momma and longs to be in my arms. He is the polar opposite of his sister who wanted nothing to do with being held or snuggled. He's perfectly content riding on my hip or snuggling up in my arms all the live long day (and night). I work hard to make sure he's getting time away from me as well but it's not as easy as it sounds...he's just so sqeezeable! He stares at his daddy with such love too! He lights up when Neil gets home from work and just looks at him with a HUGE smile until he's acknowledged, then he BURSTS into giggles! He adores his sister and is constantly watching her and trying to keep up as she flutters from toy to toy and all around the house. He is always aware of her and the look in his eyes when she plays with him melts me. His eyes are just screaming "YOU ARE AMAZING BIG SISTER, PLAY WITH ME!" I just stare in wonder and amazement most of the time at the deep loving bond these two tiny people already have. God certainly knows what he's doing and this deep untouchable love of family is such a display of the almighty to me. I just think about it and find myself overwhelmed. I feel like seeing my children play or spending joyful times together as a family are little slices of heaven. It just doesn't get better than those moments.<br />
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There are challenging moments as well...shocking I know! Who would have guessed that having 2 children under the age of 3, just 20 months apart would come with challenges?! There are days when the 2 year old is truly 2 in every way...and a girl to boot so some mornings I really have my work cut out for me. Some mornings no clothing seems to be right, hair brushing is torcherous, and teeth <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxKa19MD-9ZOPkNNnhDjsFvIJAAMH2iAIFPHQ6VrtoCzFoDjxKCDXLXYNPD4Yy1Qqa4fmtpuWejpYMIWGnCp_W4iZr12uOVKwCKPA_np7AKbKPNVbaTahPz7-OgpN009ZfPgOx2-URb-Dc/s1600/1010050_399828570138264_1494320772_n.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxKa19MD-9ZOPkNNnhDjsFvIJAAMH2iAIFPHQ6VrtoCzFoDjxKCDXLXYNPD4Yy1Qqa4fmtpuWejpYMIWGnCp_W4iZr12uOVKwCKPA_np7AKbKPNVbaTahPz7-OgpN009ZfPgOx2-URb-Dc/s320/1010050_399828570138264_1494320772_n.jpg" width="320" /></a>brushing is like wrestling an angry alligator; but we make it through. Sometimes little Cooper decides that being out of mommy's arms is just the worst thing in the entire world, and heaven forbid he can't see mom for a few minutes. Those are the times I try to remember that the peaceful moments are coming and these moments are fleeting. There will be a time when I will miss the chaos of these little beasts I call children on rough mornings. I will long for my son needing me at his side. I will ache for my daughter to be so oblivious to her appearance and so unaffected by the pressures of this world. I will hold tight to the madness while it's mine...with lots of prayers to carry us through!<br />
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Prayers have taken us so far and I have never felt closer to God than I do now...and I pray (again) that I continue to grow closer every day. Now that the darkness of Cooper's bumpy road is behind us (not that there aren't plenty of bumps ahead, because I'm sure there are) I can say I'm thankful for it. It was the worst thing I've gone through thus far in life, and it in NO WAY was easy but I'm still thankful. The darkness brought light and my weakness brought God's strength and then strength of so many that held us up. The aches of this mom's heart were similar to the pains of child birth...the hurt was so deep and so painful that at times it felt as if it couldn't be right...something MUST be wrong, I shouldn't do going through this...but long behold the result of that pain (just like in labor) was new life! Not only the new life of Cooper but new life in my soul. God renewed me and restored me. He carried me into a new life as a new woman and I'm ever grateful. I hate to admit it but I struggle so deeply with letting go of control (not a shock to anyone that knows me) and this experience forced me to do just that. I let go and I learned that my faith is stronger than I ever thought. And that faith has become even stronger because through this I have learned that my faith is well placed. God will always provide! Not always the way we want...the answer isn't always yes...but the good news in that is that HIS plan is even better than ours. I can tell you that if God would have said "Tracie you're going to have a son that isn't moving, isn't breathing, isn't responding, and is bleeding interally. Then you'll sit by his side while he rests in seclusion and fights of his life." I would have said, "NOPE! I'll take a healthy baby please. No problems, no challenges, I can't handle that. Thank you!" I hated the road He had me walk (with Him by my side, and carrying me at times) but I look back on it with an overflowing, thankful heart. I'm so happy I didn't get to decide. I'm so happy I am the person He changed me into through that valley. And none of that would have happened if I got my way. So, THANK YOU GOD FOR KNOWING BETTER THAN ME!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4w7MT-2EiiLEzVZwXjxLQ3dbSpwljK-2Yr7HTFztDdIR7XmISK9PwcQ7BB2P2SMYEDrsJC31R32Lul3QTMYZruKTALxROPq_RSTcLHMjsJp42NjS9ZJJ6RkIAgZyRjqEB0i2PnWRrC1fj/s1600/600509_399832220137899_1041435691_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4w7MT-2EiiLEzVZwXjxLQ3dbSpwljK-2Yr7HTFztDdIR7XmISK9PwcQ7BB2P2SMYEDrsJC31R32Lul3QTMYZruKTALxROPq_RSTcLHMjsJp42NjS9ZJJ6RkIAgZyRjqEB0i2PnWRrC1fj/s320/600509_399832220137899_1041435691_n.jpg" width="320" />Our boy being loved on by Aunt Jamie</a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSwwhu8eFWrq28YkjYlMnEulgbax54BHQu-to80MAGWYoklFNRnVQxdqKIK_CsUwsH9nt5kIr4WETUW0cAaO55cnOEI4lhAc1qQdYyrZrx4wmmfBq1OFnNw6Ds_WWulNZhA_vm70FSDDLe/s1600/581664_399827650138356_1902297199_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSwwhu8eFWrq28YkjYlMnEulgbax54BHQu-to80MAGWYoklFNRnVQxdqKIK_CsUwsH9nt5kIr4WETUW0cAaO55cnOEI4lhAc1qQdYyrZrx4wmmfBq1OFnNw6Ds_WWulNZhA_vm70FSDDLe/s320/581664_399827650138356_1902297199_n.jpg" width="320" />Squeezes and drooly kisses for Aunt Amie</a><br />
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Of course I still don't know what the future holds for myself or my family. I don't know if Cooper will have long term issues due to all of this, but I do know that whatever is brought out way God will carry us through. As of now Cooper is doing amazing. His development is looking perfect and his growth is moving along nicely. For now there are no worries and I'm going to revel in that. So at the moment I'm living in the bliss of health and happiness and will use this blog as a little journal to my kids about who they are and what they're like each month. If any other news/challenges come our way that I think would be important to share I'll make sure to post them. For now goodbye to medical updates and hello to joyous silly God filled posts! Blessings and love to you all for following!Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-75228411361820196402012-12-23T10:50:00.000-08:002012-12-23T10:50:28.855-08:00Christmas baby?December 23rd. A day that I've thought of with joy and excitement since the moment I saw that faith pink plus sign on the pregnancy test. I knew there was no guarantee of Cooper making his arrival on his actual due date--after all Ellie came a week late--but as any expecting mother knows, you associate your first peek at your precious baby with that very exciting estimated due date, and I was no different. I thought of being big and jolly during the Christmas season, thoroughly delighting in sweets and holiday fare without a worry about my figure or fitting into my clothes (praise God for stretch bands and maternity pants). I day dreamed about going into labor on Christmas Eve and all the hubbub that would ensue. I worried and tried to over plan our holiday season knowing full well that travel wouldn't be advised so late in pregnancy. All that planning, dreaming, and wishing was washed away in an instant in October..."Your baby hasn't moved." The words echoed in my head and heart and still do to this day. God was directing me and His words literally saved my baby boy's life. He spoke truth as He always does. Along with the truth of Cooper being in trouble He also spoke much truth into my heart through the past 10 weeks. The truth is that planning and worry does nothing, God has us. Each morning I would wake up and worry about my boy yet I had no control over what was going to happen next. God was holding us in His hands and I find peace in that now. There are days when I still struggle to let go, to loose my grip on my future and my family but God is oh so patient with me. Cooper has come so far and God has changed my heart through this journey as well. It wasn't an easy change that's for sure!<br />
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In the beginning I wasn't only overwhelmed with Cooper's health issues and prematurity but I was also bitter and angry about missing out on 10 more weeks of pregnancy. Ten more weeks of having my baby all to myself without the trials and pressures of this world impeding on us. Ten more weeks of a round belly and sleepless nights. Yes that sounds very silly to be upset about missing but trust me, when it's gone you miss it. I remember those last 10 weeks of pregnancy with Ellie vividly and just how long they truly seemed but believe me when I say they seem even longer when your baby is outside of your body. The past 10 weeks have seemed like an eternity. I look back and wonder who those people are. Who was that woman that looks like me? How did she get through all of it and make it out alive when her heart felt as if it were breaking everyday? I'm shocked back to reality when it sinks in that it was really me. Well, a shell of myself anyways. God was carrying me through each moment with grace, love, and strength and without him I wouldn't have made it to his very special date...December 23rd.<br />
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When the dream of this date evaporated on October 19th with the traumatic birth of our son our world was flipped upside down and I've been waiting for it to right itself ever since. I'm beginning to realize right-side up will never again be our reality. Just when I decide Cooper is like all other newborns something comes up. He sleeps a whole day through, he refuses to eat, he develops a cold (which requires MUCH more attention than usual), or he has what seems to be a seizure. I'm starting to let go of right-side up and "normal." This is our world now and it's a beautiful one in so many ways. Cooper is the most special and amazing little boy and I'm honored to be his mommy no matter what his future looks like. We may have a long road ahead of us or possibly just a few more hurdles then smooth sailing, only time will tell. All I know for certain is that God has changed us and we can put faith in His love and care.<br />
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Cooper has some hurdles in front of him and we're exploring some possible complications/symptoms. The first is his continued elevation in direct bilirubin counts. Cooper underwent a HIDA scan a few weeks back to rule out a pretty serious complication. Thankfully that scan came back normal and we avoided one issue. Now we're just waiting for those numbers to drop and if they don't fall on their own we will then begin a search for a possible metabolic complication. Along with the jaundice we're now consulting a Neurologist because it seems that Cooper may be having seizures. I don't know for sure if that's what is happening but I do know that what I'm seeing doesn't seem natural and has led me to believe he may be seizing. Neil and I are the only ones that have seen it so we don't have any "medical" confirmation but my mommy instincts are screaming. I was able to catch a small episode of it on video the other day so hopefully that will help get to the bottom of things. We have an EEG scheduled for December 27th, prayers for clear and conclusive results are much appreciated.<br />
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Despite those issues Cooper is doing amazing. He's such a strong boy! He came down with an upper respiratory virus last week and we feared it may knock him out a bit and cause some lung issues but he fought right through it and is back to being healthy! What an amazing little man we have been blessed with!<br />
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We may not have gotten the Christmas baby I envisioned but December 23rd is here and we have our boy in our arms...that's all that matters! Praise God!<br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-31541550270497858582012-12-02T10:23:00.004-08:002012-12-02T11:20:31.902-08:00Let the adventures beginWell we're finally home! I guess I shouldn't say finally given that we were discharged 4 weeks before we expected to be. None-the-less 6 weeks in the NICU feels like an eternity and therefore prompts the "finally."<br />
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The first 6 weeks of Cooper's life was quite a journey and as that comes to an end a new adventure is beginning. I had such grand illusions of what our new world under one roof would be like. Christmas memories, snuggled up pj time for entire days, and cozy family nights. Boy have I gotten a rude awakening! Don't get me wrong, our new "new normal"is full of joy, smiles, and laughter, but it's also full of concern, confusion, panic, sleeplessness, and oh so many doctor's appointments!<br />
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I knew I'd be a bit of a nervous wreck without all those monitors telling me with certainty that our boy was breathing and functioning optimally, but I didn't expect to be so absolutely overwhelmed with worry and fear. I do my best to "worry about nothing and pray about everything," but I'm only human and every day is a struggle. Just eating without staring at him is a challenge. I would say that he spends about 95% of his day in mine or daddy's arms. It is delightful to be the one in charge of our son. The one's that set his schedule and decide when he eats. It's wonderful to choose on our own how much food to offer him eat each feeding instead of waiting for a doctor to tell us his "plan" for the day. But with those responsibilities and freedoms comes LOTS of questioning and fear. "Are we feeding him enough?" "Is he too lethargic?" "Does his poop look funny?" "Is his tummy soft?" "Does he look extra yellow today? So many worries come with a newborn in general, but with our little guy that's due date is still 3 weeks away those worries seem to be consuming me at times. I remember being a wreck when we brought Ellie home...I believe I woke her up every few minutes in fear she wasn't breathing...this is even worse. This time around I barely allow Cooper to sleep anywhere but in my arms in fear that I'll drift off and miss a spell that he can't get out of. Having him against my body makes me feel as if he's safe. I know in reality if something is going to happen it will but with his tiny body resting in my hands I feel comfort. I'm working very hard to let my worry and fear go and I'd say I'm doing a fine job for the most part. I know I'll put him in his bed more often as time passes and my anxiety subsides, but for now I will rest as peacefully as possible for as many hours as my heart will allow with my sweet boy wrapped in my embrace.<br />
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Besides the lack of sleep and worry, we're also faced with the challenge of keeping Cooper as healthy as possible which has led to endless doctors appointments. I knew we had quite a bit of follow-up when we left the hospital but I had no idea just how much there would be! We were aware that we had an eye appointment in 2 weeks, a cardio follow up in 3 months, and the routine pediatric follow ups that come with all newborns. Not so bad right? Well, the day after we got home we received a phone call from the NICU saying we needed to get into our pediatrician as soon as possible for a blood draw to check Cooper's bilirubin which was still high upon discharge. No big deal I thought. We made an appointment for that Monday and were met with the news that we had to also set up home health care which will allow a nurse to come to our home twice a week. They then did a bili test I had never seen before in which she didn't have to poke Coop but instead used an instrument on his forehead that gave a reading of 6.6, not bad at all. We headed home just to receive another phone call saying we needed to come back the next day for a poke since they needed different information. Oh boy. So the next day we headed back to the doctor...which freaks me out because of all the germs lingering there this time of year. But what has to be done has to be done I guess. Coop's little foot got yet another poke and we headed home. The results were back very quickly with a result of 11.9...not so good. We were told we then needed an appointment with a GI. After facing that fact we got yet another phone call informing us that the last bilirubin test wasn't sufficient information either and Cooper needed to come in YET AGAIN! That night I was getting a bit frustrated but reminded myself that he was here and seemingly healthy so there was no reason to be upset. Then came our first scare. Cooper became quite lethargic and had lots of trouble eating through the night. He looked stressed out and oh so tired. Instead of waiting a few days to go back for his foot poke we were instructed to head in right away. We made our 3rd appearance at the peds office to find out the same news we're so used to hearing, "We'll have to wait and see." Cooper was appearing a bit strained in his breathing and quite sleepy and yellow.<br />
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I was knocked right off of cloud nine and shoved back into my dark pit of worry. I knew we'd have challenges upon bringing Cooper home but I didn't realize how hard they would be. I was lured into a false sense of security upon leaving the hospital...as if being discharged meant all was well. In my head I knew better but my heart took over once I had both of my precious babies together with mommy and daddy. I knew it wasn't over and that we have a long road ahead of us but for some reason I was so consumed with getting out of the hospital that I was blinded to those hurdles. Those blinders are gone and those hurdles are all too real. We'll jump each one as they come and get through it just fine. The joy and happiness is still there but at times it's veiled by fear of the unknown. But don't fret...Cooper perked up after a while and began eating again and very well I might add. We've even up'd his feeds. He's now eating about 60ml (about 2oz) every 3 hours!<br />
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Apart from dealing with Cooper's issues we also have our darling Ellie bug to attend to and boy has that job become more difficult. She is amazingly brilliant and so loving but lately I find myself asking, "Where did our sweet girl go and who is this terror in our house?!" She seems to love her brother and be very concerned for him when he fusses but she has become such a challenge. Not sleeping, screaming and whining all the time, throwing toys out of anger, and hitting mommy and daddy when we don't give in to her fits. What in the world has happened?! Our poor girl had her world rocked when her everyday 24 hour playmate was yanked away for hours at the hospital with her new brother which she didn't even get to meet for 6 weeks. After all that we then bring home this tiny little boy that consumes so much time, attention, and energy; and although mommy and daddy are both HERE they aren't actually HERE. We can't focus on her in the same manner that we used to and the tone of her world has changed. I feel so incredibly guilty that she is going through so much that she doesn't understand, but I'm also beyond appalled by her actions and very frustrated with her behavior. It is so difficult to find a balance between discipline and understanding. I want her to know her feelings are valid and that she's allowed to be upset but to also know that making bad choices because of those feeling is not acceptable. It's so hard to convey just how much I love her but dislike her naughty behavior. Oh the joys of parenthood!<br />
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Parenthood is full of challenges but also overwhelmingly filled with joy, therefore becoming a mom will always be my most amazing accomplishment. Giving birth to Ellie changed my soul in a way that is indescribable and I'm so grateful for that! Becoming a mom of 2 with the birth of Cooper has done the same. I was expecting to feel a bit different once he arrived but I had no idea just how much I would change. Granted it's likely more of a change due to the circumstances, but none-the-less it's a HUGE change that I simply wasn't ready for! I feel as if I'm a new person and I'm not sure how to navigate these new waters. I still can't exactly explain the change or what has happened but there has been a shift in my heart and it's going to take some time to sort it all out. Right now I'm so consumed with each moment that digging into my emotions and feelings isn't a priority...we'll get there. For now I pray for peace and for strength. I pray that my husband be filled with patience with me because I'm even confused by my actions and feelings...he must be overwhelmed! Bless his heart! Again we have a "new normal" to learn and we're doing it without even realizing it. Like most things in life these moments have passed by in the blink of an eye and it's hard to grab a hold of those fleeting memories to really soak them. We're so wrapped up in the "to do's" that we don't even realize that we're adjusting to something so challenging and drastic. It's so surreal when I think on it. Just last night I found myself staring at my loving husband and tiny miracle baby snoozing next to me on the couch and couldn't help becoming overwhelmed by it all. I just kept thinking of the first time I met Neil...the handsome, goofy, loud, and funny stranger I happened to stand next to at a concert...is this the same man?! We have come so far and faced so much. I'm so thankful for that meeting and for those memories. Everything between Neil and I has been so fast that it's a blur and taking the time to stop and really feel every moment we've lived together was so moving. I was captivated by the sight of this man that once was a stranger now snuggling our son, the creation God blessed us with; to care for together no matter what challenges that brings. I was overcome with feelings of blessedness. What a blessing to have this man as my husband. What a blessing to have our boy here and healing. What a blessed life God has given me. Whatever is to come we will get through it together with our God leading the way.<br />
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For now it's day by day and our days are looking quite full! Today we have a visit from the home health care nurse at 2:30. Tomorrow we have a ped appointment for another poke on our mini Coop followed by our chiropractor appointments in the afternoon (the only doctor appointment I actually look forward to). Tuesday is a visit from the early access nurse. Wednesday is the GI appointment along with another visit from the home nurse. Then Thursday I have my post delivery appointment. Busy busy! Thankfully nana and papa will be arriving in a few days to help out. Not sure how I'd get through without the help.<br />
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As promised...pictures of our boy heading home! All 4lbs 15oz of him strapped into his carseat and ready to roll! Boy was his sister excited! Mommy and daddy were pretty thrilled too! <br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-26517301517570619562012-11-23T06:11:00.005-08:002012-11-23T10:26:21.254-08:00ThanksgivingToday is Thanksgiving and typically I approach the holiday more focused on my stomach than my heart but this year is quite different. This year I'm flooded with thankfulness and my heart is shouting out songs of praise. This year brought many challenges, the toughest I've ever faced, and those challenges have brought triumph and a humbled and grateful presence to my soul. I started this Thanksgiving with hopes of bringing our Cooper home to celebrate the holiday with us under one roof, but quickly learned that today is not the day our boy will make his journey home. My heart sank a bit then I realized just because it's not today doesn't mean it's not tomorrow! As I reveled in that realization I was comforted by the words our nurse Dawn spoke on her way into our room..."Looks like tomorrow is the day!" TOMORROW! Sweet, sweet tomorrow! How appropriate that Dawn was the one to speak those lovely words. The words that brought the "dawning" of a new day, a new light, and a new hope...all beginning TOMORROW!<br />
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My emotions overflowed, just as I knew they would. I held onto my boy that almost wasn't and began my prayers of thanksgiving that my boy IS! He IS here. He IS breathing! He IS mine to keep for now...to take HOME! The thankfulness flooded my heart and shook my body with tears of joy. My mind began to wander down the road we just traveled and the tears flowed more freely. God carried us through so much and blessed us with miracle after miracle, answered prayer after answered prayer and here we are still standing by his grace. I allowed my mind to carry me through each incident, each trial, and each painful memory that these past weeks has brought to our reality. I allowed my soul to linger on the thankfulness for each one. Each obstacle representing yet another opportunity to praise the Lord. I was living my prayer of Thanksgiving to God. I had no words only lingering memories and tears. I allowed the Holy Spirit to speak the words I couldn't utter. Thank you dear Lord for all that you've done!<br />
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Not only am I thankful for Cooper's health but I'm also thankful for the impact his story has had on those around us. I know our boy is special and he was created for a unique and beautiful purpose and that purpose is already shining. All the support, kind words, food, hugs, prayers, gifts, care, and kindness we have received through this journey brings me to my knees. We are so humbled by the outpouring of love that we can't say thank you enough. We could feel the support and prayers surrounding us and carrying us through the dark times and we can see the light and joy now in the praising and healing times. We are beyond blessed to see Cooper's story affecting and touching so many and we thank you from the bottom of our hearts for sharing it with others and sharing in it with us.<br />
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I have oh so many thank yous to send and give that Cooper may be 5 before I get around to them all, but here are a few specific ones that are lingering on my heart right now.<br />
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Thank you to Dr. Johnson for being on-call and telling me to go straight to the hospital when I wasn't feeling my baby moving. He explained that typically he would advise a mother-to-be to relax, lay on her side and wait, but he heard something in my voice that made him do otherwise. I thank you for that doctor, and know that God worked through your direction.<br />
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Thank you to the triage nurses for your no-non-sense care and information. It would have been easy to sugar coat the situation but you offered advice and direct information to prepare us for what lay ahead.<br />
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To the ultrasound techs that handed me tissues when the tears began to flow at the sight of my limp and sick baby. Thank you for your kindness and promise of prayers for our situation.<br />
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Thank you to my dear mother. Your devotion, support, and love carried you out the door and down 5 hours of highway to our family's side at 1am without question. I can't thank you enough for that. You have never failed to be by my side and I know you never will. You are the rock I can always count on and your fierce love for me always comes through. I love you oh so much and always ALWAYS will!<br />
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To the many nameless faces I met on the way to and in surgery; your patient and loving words of encouragement, and soothing hugs brought as much comfort as possible as I shook with fear and confusion over what was happening.<br />
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To Dr. Gabel, thank you for getting my boy out in time. Thank you for knowing something was wrong and making the correct call to save his life. Thank you for comforting me through the stress and intensity of an emergency c-section. Thank you for allowing me to be afraid and being patient with that fear.<br />
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To the recovery nurses that first delivered the news that I was a mommy of a little boy, THANK YOU! Thank you for taking the time to talk to me about my new son. Thank you for easing my pain and filling me in on what little you could.<br />
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Thank you to Dr. Murphy, Cooper's first Neonatologist. and the entire neonatal team at Mercy. Thank you for stabilizing my son and jumping into action upon his birth. Thank you for caring for him as his symptoms changed, worsened, then improved. Thank you for your knowledge and wisdom.<br />
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To the nurses in the NICU, thank you just doesn't cut it. You have cared for my boy when I couldn't. You have taken me and my family under your wings and supported us through this challenge. I am humbled by all that you do and am in awe of your ability to do these things day in and day out for countless families.<br />
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I have a few nurses I'd like to thank specifically...Stephanie, you will always be my no-non-sense stabilizer. Your unshakable demeanor always gave me something to cling to, thank you for that. Kim, you were by my boy's side in the toughest of times and I can't thank you enough for fiercely fighting on his behalf. You bring such an air of protection and love with you as you work and I'm grateful for that. Melissa, where to begin...you have become a part of our family through these past few weeks and when I see your face I feel relief. You know our boy and he knows you. His eyes open when he hears you and I can tell he takes just as much comfort in your presence as I do. Thank you for being with him in his first minutes and for providing the most loving care I could imagine throughout his time in the NICU. You are so very special and your spirit shines light into the darkest of places. We love you and hope to see you outside of these hospital walls.<br />
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I have deeply appreciated every one of my friends through this journey. Your support has meant the world to me in ways I can't put into words. Thank you for every kind word, laugh, tear, and prayer. You are all a blessing in so many ways and this situation has just made me realize that I have the best friends in the whole world!<br />
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To our neighbor and friend Melissa for asking a simple, God-led question which has led to an eye-opening journey. It feels as if we're viewing medicine and health with new eyes and we're so grateful for that vision.<br />
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Thank you to Dr. Scott who has went above and beyond to educated, support, and bring healing and health to our family. Your kind heart and outright generosity is noticed and deeply appreciated. It's pretty astounding to see the strides both Cooper and Ellie have made since you turned their power on through your healing hands. The fact that Cooper was needing assistance to have bowel movements just a day before you got your hands on him and is now no longer needing assistance in, well...just about anything, speaks for itself. Our boy is healing the way God created him to, and your touch is allowing that! <br />
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To my dad, thank you for picking me up (literally) and giving me the strength to walk the path before me. Your gruff exterior has never been much of a front to me for I always saw the soft gentle love behind your eyes, but this situation brought that love to the forefront and I've never been prouder to be your daughter. You were there when I needed you and for that I will forever be grateful. You are so loved by me and our family. Thank you dad for holding me when I cried and telling me I could do this. Also for working so hard to keep up with our Ellie girl...she's a handful.<br />
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To Dan and Roxanne, thank you for loving and caring for our Ellie as well. She is so blessed to have grandparents that adore her and take on the challenge of keeping up with her! Your ability to be here on weekends and offer food, help, love, and support will forever be remembered and we are tremendously grateful. Cooper and Ellie are blessed to have such a loving grandpa, and gran. Love you guys.<br />
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Thank you to our entire church family. I have to say that I've never been more proud of my church home. You are truly the body of Christ and we could feel your hands lifting us up out of this darkness. Not one day passed without a visit from someone to pray with us or offer an ear to this overwhelmed mother. Every visit brought peace and joy, thank you.<br />
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Thank you to my siblings and their families. The long distances you traveled just to sit in a hospital, cook, clean, and babysit, are so greatly appreciated. You came simply to offer your shoulders to lean on and I can tell you those arms were just the crutch I needed to get through this. I think it's no coincidence that Cooper began his upswing after your visit. I am so proud to be your sister. I love you all more than I can explain. Thank you for being there when I needed you most!<br />
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To my sweet Ellie girl. Thank you for sacrificing time with mommy and daddy so your brother could feel our love. Thank you for adapting so well to the new schedule (if you can call it that) and accepting your new role as big sister to a sick baby. You have been such a bright shining spot through this darkness! God created you for something so very special and I can just see your purpose behind your eyes. You are one amazing little girl that will set this world on fire. I'm so proud to be your mommy and am honored to have your love.<br />
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Finally, to my dear husband...the one person that can understand my pain through this trial. You are my rock, my love, my friend, and my partner, I wouldn't have made it a single day without you. When we got married I was so deeply in love with you and I had no idea how much that love could grow. Today as I look back at the challenges we have faced I've never felt more strongly for you. It looks like we certainly picked the perfect song for our first dance 3 years ago at our wedding.<br />
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I adore you in every way and am so blessed to call you husband. I always knew you were kind, loving, generous, and selfless but going through Cooper's birth and struggles has given me new eyes to see you with and you astound me! You have picked me up. You have taken the steps when I couldn't, and you have carried this family through the flames. The night I arrived at the hospital God told me I was about to walk through a dark valley and I agreed to it knowing you'd be right by my side. You bring me peace and comfort in the middle of so much pain, for that I'm forever grateful. God has refined us through the flames and we are bright, shiny, and new! I am so happy to be yours for all the years to come! <br />
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***I wrote all the above yesterday morning and my hopes were so high I could almost feel my body lift off the ground, then came a rush of disappointment when Cooper struggled through a few feedings. After fighting for my boy to stay awake and keep sucking at his bottle his nurse informed me that she didn't think today should be the day any longer. She explained that if he was struggling to eat now it may get worse at home and then we worry about him dehydrating and us having to return to the hospital. I agreed with her that if he's not ready he's simply not ready but I couldn't stop the tears. I am well aware that he'll be coming home one day soon but for some reason the thought of it not being today after I had allowed that thought to sink into my heart just broke me. I spent the next hour or so holding my mini Cooper and crying until it was time for us to leave and join our dear and beloved friends for Thanksgiving.<br />
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The Mitchells opened their home, hearts, and family to us this year for the holiday and we are beyond grateful! They are the most kind, loving, and generous people I know and we are blessed beyond measure by them over and over again. How loved you are my friends! Thank you yet again for welcoming us into your arms and sharing a special time, we had so much fun! It was wonderful to have a break to smile, laugh, eat, drink, and be merry!<br />
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So today...today may be the day and it may not. Time will tell and I promise you a big picture of Cooper in his car seat will grace this page soon enough. Love and blessings to you all, we'll keep you posted!Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-45589098729696585412012-11-20T12:41:00.002-08:002012-11-20T12:41:23.502-08:00So close...Today is one of those sad and dreaded days in which I'm unable to see my sweet Cooper until after Neil gets home from work. The hours always tick by slowly and the only thing keeping me sane inside the walls of our home is my lovely daughter Ellie. She is such a bright light in this dark time. She is the glue that holds me together. Most of the time when I'm finally at home I want to fall apart but she keeps me going. I'm so thankful for that sweet, spunky girl. This morning she said, "Coopie come home mommy!?" I'm still not quite sure if it was a statement or a question but either way it melted my heart. She know so much yet so little. I told her he'd come home someday and that we could call his nurse and check on him. She didn't love that answer but didn't put up much of a fight so I dialed the phone. I was met by a familiar voice and name and I breathed a sigh of relief. Helen had our boy today and she knew him. She is so kind and sweet to him and I'm thankful that on a day in which I have to be absent from his side that his nurse knows him and that I know her. She began the conversation by telling me that he's doing great, she then informed me that he had eaten all of his feedings from bottles since 9pm last night!!!!! AMAZING! She also told me that the doctor gave the go ahead for Coopie to eat a set amount through the day instead of at each feeding allowing him to have a little wiggle room during each feeding. That basically means that he will most likely not be in need of gavage feedings any longer! Granted he's young and may get too tired to eat at all in the next few hours so he may need to gavage but if he keeps this up we may get home in just a few days! If he can take all his feedings from bottles and not spell for 48 hours we're looking at discharge!!!!!! We're on hour 17 right now and he's due to eat at 3pm...keep your fingers crossed! I just can't believe this is so close. I can't explain the emotions just yet (I'm sure a longer blog post will be following this one up when I have time) but I will say that the Lord is good ...OH SO GOOD!<br />
<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-21189471814291477082012-11-18T12:05:00.000-08:002012-11-18T12:05:03.492-08:00valleys and mountaintops Lately our path has brighten and our load has lightened. Our mornings aren't filled with fear and questions while awaiting the daily orders from the doctor. Instead our mornings now are filled with excitement. How much does our mini Cooper weigh today? Is he awake and active? Will he nurse well? So much has changed in such a short amount of time...well short relative to what I was expecting.<br />
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Tomorrow will be our miracle boy's one month birthday. One month of breathing the outside air and moving freely outside of my womb. Can this really be possible? Has a full month already come and gone? Neil and I had a talk about it last night and we both agreed...it was the longest yet fasted month we've ever experienced. Words can't describe the depth of emotion that floods us when we think back on the trials we faced and have been so blessed to say we conquered. With this one month milestone lingering over us I can't help but look back. I have been replaying events in my head and re-reading my words those very first days of our boy's journey. I can't seem to get through any of it with a dry eye. So much has built up inside of me and I have already foreseen it all flooding over when we hear the sweet words, "You're discharged. Take your baby home!" I guess I just haven't had the time to reflect and allow myself to process everything that has happened. I know I went through it and even worked through much of the emotions but unpacking it all and allowing it to sink in is a different story. I look forward to that. I look forward to this all being a distant memory. A harsh yet joyful memory because our boy made it. We survived!<br />
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I was telling a friend this morning that as much as I've hated this dark valley that God led our family through I'm also thankful for it. That may not make sense to most but I can't help but feel that way. I know God held our hands as we walked in the darkest places and carried me when I was too scared to take another step, and we made it. God has taught me so much through this walk and for that I'll be forever changed and forever grateful. Yes the valley is full of pain, tears, and outright misery but walking out of it and up onto the mountain is full of a joy that can't be expressed in words. I'll allow the pictures to speak to your own heart and I think you'll grasp what I mean.<br />
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<b>VALLEY</b><br />
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<b>MOUNTAIN</b></div>
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Our Coopie weighed in at 4lbs 10oz last night and has been cleared to eat as many bottles and nurse as often as tolerated. He's still quite young (35 weeks gestation) so he will likely not be able to handle a full day of bottle feeding/nursing but we're going to keep working at it at his pace. Cooper runs the show here and it's up to him how this goes and how long it takes. Once he's eating all his feedings from breast/bottle for at least 48 hours and having no spells (along with keeping up everything else he's being doing) we'll be released to go home! It could still be weeks so I'm trying not to get too worked up but it feels so within reach now. We're getting there.<br />
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On the agenda for the week we have an eye exam tomorrow, a follow up echo for his pulmonary valve stenosis (the nurses don't even hear the murmur anymore so that's a great sign), and a follow up head ultrasound. Busy week but all precautionary. Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-42473171971845556552012-11-14T09:44:00.005-08:002012-11-14T09:44:41.966-08:00Feeder and Grower<div class="separator" style="clear: both; text-align: center;">
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The term I longed to hear associated with our boy has finally been attached to his name! Our Cooper is official "healthy" enough to be labeled as a "feeder and grower!!!" Neil quietly crept into the house last night from visiting Cooper and woke me with the news that our boy is officially just working on getting bigger and strong enough to come home with us!!!! The nurse told him last night that we need to bring our carseat in within the next 2 weeks to test it out! I can't even explain the excitement of hearing that news. I have been looking at the carseat for weeks and it always saddened me, but now, now, it brings joy and new light! My heart swelled with happiness at the great news...our boy is taking steps toward coming home and each day is a little closer to our family being together as one unit under ONE roof!<br />
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Since he's working on eating and growing I get the honor of giving weight and length updates now instead of tests and results updates. Another small yet tremendous joy of our new place in our new world. Cooper was born at 3lbs 9oz, gained a TON of water weight with all of his edema but I'm thrilled to say that is gone and his new weight gain is the good kind! The kind we long for and pray continues rapidly! Our boy is weighing in at 4lbs 8oz now and we couldn't be prouder! He gained an entire 3oz yesterday alone! He is amazing and we can't say it enough. Our boy is such a gift! A gift we can't wait to bring home for the world to enjoy!<br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-71740148558664986432012-11-13T20:05:00.000-08:002012-11-13T20:05:01.806-08:00Not as controversial as I had thought...After much debate within myself I have decided to open up a tiny bit about some things that have been plaguing me lately. I had mentioned in a previous post that the thought of the flu shot being linked to Coop's early arrival and illness/adverse symptoms had been brought to my attention. After as much reading as my sleepy eyes would allow, advice and guidance from medical professionals, and eye opening discussions with experts on the subject, I have come to some very scary, very real conclusions. I won't share everything because I'm not sure where this unraveling thread will lead us but I did want to share a few things.<br />
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I began this process thinking I was walking into something extremely controversial and I'd never get straight answers. WRONG! It took a total of 5 minutes maximum to get a direct answer from the horse's mouth. Let me explain...<br />
I walked into my OB's office and asked for the receptionist to write down the exact name and dose of the flu vaccine I received. She went to the back for a moment and, upon her return, handed me a piece of paper with the words "Fluvirin, single dose" written on it. I then walked to my car and right there from my phone goggled "Fluvirin 2012 package insert." I quickly found the FDA sight that led me directly to the insert that I should have been handed in the first place upon receiving my flu shot. Despite that fact, I now had the information. That's where I found this.<br /><b> </b><br />
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<span style="color: red;">8 USE IN SPECIFIC POPULATIONS<br />8.1 Pregnancy<br /><b>Pregnancy Category C</b>: Animal reproduction studies have not been conducted with FLUVIRIN®. <b>It is also not known whether FLUVIRIN® can cause fetal harm when administered to a pregnant woman</b> or can affect reproduction capacity. FLUVIRIN® should be given to a pregnant woman <b>only if clearly needed</b>.</span><br />
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I was shocked and appalled to say the least. Go back and read my first blog post about this to see exactly what my OB said in response to my question, "What are the possible side effects to my baby if I get the flu shot?"...How dare she! How dare anyone not give the facts! I may never know if this is what happened to my sweet boy. I may never know if he almost lost his life because of a shot. But I do know this. I was NOT informed enough to make a proper decision. I was having a delightful, healthy, and perfectly normal pregnancy and nothing changed except this one vaccine. Maybe it was something else but every blood test that Cooper and I have had, every path the doctors have headed down has lead to a dead end. No signs of infection and no signs pointing to ANYTHING diagnostic of what happened. Yet the flu shot sticks out like a sore thumb.<br />
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I don't know what any of this means to us just yet but I decided to post this because I have many dear and lovely friends that are pregnant right now or planning to become pregnant soon. I'm not saying getting a vaccine is right or wrong I'm simply saying check the facts and don't allow ANYONE to bully you. Just because he/she has Dr. before his/her name does NOT mean they know everything or that they can 100% be trusted. I'm also not saying that doctors are out to hurt you. I fully believe that was NOT my OB's intention and I'm extremely grateful for her and the practice as a whole, I just believe that none of us are informed. It's time to change that! <br />
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Here is a link to the Fluvirin insert and also another site that I found to be extremely helpful in researching this subject.<br />
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http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM123694.pdf<br />
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http://www.nvic.org/Vaccines-and-Diseases.aspx<br />
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I also want to say a huge thank you to that small question, "Did you get a flu shot?"...God is working through you and your heart for others and their health! Forever grateful!<br />
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<b> </b>Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-77086847884363547952012-11-13T19:37:00.000-08:002012-11-13T19:37:03.384-08:00ResilienceThe other night as I sat by Cooper's bedside chatting with a dear friend I was struck by the amazing resilience of my boy and our family as a unit. As I spoke of our journey and everything that Cooper has endured over these past 3 weeks I realized just how spectacular our bodies and systems are. I marveled at the fact that Cooper went from not breathing or being capable of such to breathing the room air without any support. He went from not being able to move to squirming out of his swaddle like a little ninja. He went from not being able to control his own blood pressure, platelets, or body temperature to being the master of them all. He now digests food, moves his bowels, regulates his breathing, sucks his pacifier, and moves freely and often. How did he get here? His little body is amazing and was perfectly made! The Lord created our boy for so much and this is just the beginning!<br />
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How wonderful to be able to voice that and truly KNOW it to be reality. For a while there I wouldn't have dared make such a statement with the alternatives lingering in the air. Lately though, I can see my son's future and often find myself day dreaming of that vision. Those glorious fantasies carry me through the times away from the hospital; those times in the quiet, still, and lonely moments when I feel the weight of the situation. Those moments can, at times, feel too heavy to bear on my own. That's when I allow myself to dream of my boy coming home. Meeting his spunky and anxious sister and all of us joyfully under one roof. I know there will be challenges and exhaustion once we're home but I have no doubt that the joy will outweigh it tremendously! I picture him crawling, walking, and bugging his sister. I even allow my thoughts to float to his adulthood when he is taller than his mommy and looks just like his daddy. Oh the joys to come!<br />
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I have been living in this beautiful cloud of happiness lately (much different than where I was living the weeks prior) because of all of our amazing Mini Cooper's strides. He is now in a crib, breathing room air, PICC free, clothed, and NURSING! I just can't believe this is happening. God is so good! Since our boy has been moved out of his isolete and into a crib we're free to pick him up whenever we choose and I have to admit that I hold him every possible second I get. The other day he was in my arms 6 out of 7 hours (the necessities of eating and pumping were the only reasons it wasn't 7 of 7) and it still wasn't enough. On the nights I stay at home instead of bunking with my boy I tend to bring home a blanket of his so I can smell that sweet scent he carries...I miss him so much it aches. That ache pulls me back, reminding me that this is still a challenge. This is our new normal but it still doesn't feel natural. Leaving your newborn baby isn't normal, yet it's a necessity. Despite all the glorious strides he is still tiny. He is still getting stronger. He is still working so very hard and our road is still a long one. The reality of that hit me today and I was back to my darker cloud of living. Not that I didn't have joy over how far we've come, but I couldn't help but focus on how far we have yet to go. I caught myself in tears the majority of the day. It was different than the prior weeks but none-the-less still so very overwhelming.<br />
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Overall Cooper is doing AMAZING! We've enlisted more healing hands into his care and have been blessed so much by them! Coop has been working on nursing and it's slow going thus far. I have to admit that I day dreamed a bit too much about getting to the nursing step because I just expected it to take off...I have had a rude awakening on that one. He is doing well it's just a process. His biggest struggle at the moment seems to be his bilirubin numbers still. They continue to decrease little by little but are still up there. He also seems to really be hurting from reflux. It's so sad to see him uncomfortable but there isn't much to do for it right now. Prayers are so dearly appreciated and again we can't thank you enough for lifting us up to the Lord through all of this! We love and are blessed by you all!Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-53084742084843308392012-11-07T20:15:00.000-08:002012-11-07T20:15:00.485-08:00Bursting with joy!Today was yet another rough day of sitting at home anxiously waiting to find out how Cooper was doing, but those hours of unease were washed away the second my boy was in my hands.<br />
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When I walked into his room he was laying behind his plastic walls wide eyed. I was able to pump and then make our first attempt at "nuzzling". I can't even explain the excitement! It was our first chance to bond through nursing...a sweet luxury I had with Ellie just 45 minutes after she was born. Things are oh so different this time around. Coop felt so tiny and delicate in my hands. He always had but I had never really tried to maneuver him the way I needed to tonight, and that made him all the more fragile to me. I got him in the right position and to my absolute delight he began to suck. He was so cozy and knew just what to do. I was in complete awe. After a short while his eyes began to droop and his mouth fell slack. My tiny boy had worn himself out. I laid him on my chest and stared at his precious dreaming face. How blessed am I?! It all rushed over me and I began to tear up. Tears of joy this time...what a beautiful moment. A pure and true vision of love in all it's glory. Thank you Lord for the unmatched joys of motherhood.<br />
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I held my boy in the silence of our room for 3 hours. We dozed off and on and just enjoyed each others warmth. Then the sad moment came to put him back into his isolation. I wasn't thrilled about it. Then our nurse Kristen (who we adore) said, "would you like to dress him?" The smile flashed back onto my face as I reached for the big bag of clothes I've been dying to use. We kept it simple...just a onesie to make sure he didn't over heat since he's still in his temperature controlled omnibed. Once he's in a crib we'll get to use the outfits and jammies that I can't wait to see him in. For now his cars onesie was the choice...what could be more perfect for our mini Cooper's first fashion photo shoot!? <br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com1tag:blogger.com,1999:blog-7975795143141760053.post-768629002760329172012-11-07T08:52:00.001-08:002012-11-07T17:13:10.684-08:00Grasping at StrawsLet me start this post with a broad statement that I'm not looking to start anything controversial here so please don't leave any hurtful, overly opinionated, or unkind comments. This blog is to keep all of you dear friends and family members up to date on EVERYTHING we're experiencing and also to help me get some of my feelings and emotions out during this trying time. Ok, the formalities are out of the way now...<br />
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Like I mentioned in the previous post, yesterday was the first entire day I've had to spend away from Cooper. Today is the second and it's feeling much the same thus far. Despite a very different kind of morning. Today instead of getting up at 3:30 and heading to the hospital it was the reversal. I woke up in my hospital home at 3am to do my boy's "cares" then headed home at 4am so Neil could sneak in a few hours with our little guy while I tried to get a bit of rest. Ellie seemed to have different plans for me. Right on cue she began whining through the monitor, "mooommmmmy! MOMMY!" (this girl can sense my presence). I went into her room to find her eyes still closed and whimpering. Usually I'm one that will let her cry a bit until she goes back to sleep but I'm a bit soft right now so I scooped her up and snuggled her in the rocker for a bit. Just long enough for her to fully wake up...great. : / I still attempted putting her back into bed and praying she'd go to sleep for a bit. She did get quiet but not for long. Before 6am I was back in her room after hearing her saying "OH NO! I POOKED!" (her version of telling me she puked). I walk in thinking, "Seriously you now have a stomach bug!" But instead of puke I find my girl standing pantless in the corned of her bed pointing at the empty diaper laying open in the middle of her crib. I then see that what she thought was "pook" was actually "pooP!" It smelled and was not the best thing in the world to have to clean up after 2 hours of sleep at the hospital but I had to laugh. What t sight. Welcome to motherhood indeed! It wasn't fun to have to bathe her, strip her bed, and clean EVERYTHING in her room but I couldn't help but kind of loving the moment of being able to care for my child and having a crazy toddler story under my belt. One of MANY I'm sure! That moment brought normalcy for me. Funny how much poop has brought me joy lately. haha<br />
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After the crazy morning I made my first phone call to the NICU and held my breath waiting for the nurse's voice hoping it was a familiar one. A loved and trusted one. To my dismay it was the same voice as yesterday. Yes it was familiar but not loved or trusted by me. She proceeded to tell me the doctors had yet to make rounds just to have a nurse near her correct her and fill her in on the fact that the doctor had already rounded on my son and just what he had said. I hate that she didn't know who had been in my son's room or what the orders for the day were. I then asked if he had experienced any dips in his heart rate since she had been there and she said no. Hard to believe since he seems to dip a lot when Neil and I are around yet he didn't dip even ONCE during her 12 hour shift yesterday and today her story is the same. My mommy radar is flashing like crazy and I can't stand it. I am well aware of the stress and strain these nurses are under and I do call often but I make it a point to be quick, I know they have a lot going on and more responsibility than I can imagine so I have a great deal of respect for that, but something here just isn't adding up. Needless to say I'm sitting very uneasily yet again today and can't wait to get to that hospital! There was one up from talking to our nurse this morning...when the other nurse filled her in on the doctor's plans for our boy we discovered that we are ok'd to begin "nuzzling" today!!! Yet another NICU term...nuzzling means that I'll pump then allow Cooper to root around at the empty breast (sorry if that's graphic) and figure out how to suck without getting overwhelmed by lots of milk. It's the first step in breast feeding. I just can't believe it's happening! I'm in heaven just thinking about that special bonding time and my boy needing me!<br />
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We have so much to look forward to and I'm so thankful! Our future is getting brighter by the day and I can't explain the joy that has come with that. Our days started out very dark and our boy wasn't promised to us for quite a while. His little life hung in the balance and now...now he is growing, learning, working, and getting stronger every day...he's doing it! I couldn't be prouder! Despite that pride and excitement I can't help but be caught up by the question, "Why are we here? How did this happen?" I have been told multiple times by Coop's doctors that I'll never know. That answer just doesn't sit well inside of me. I'm just not ready to give up without a fight. What if what happened will contribute toward future problems with Cooper, or with future pregnancies. We had planned on more children and now we're just not sure. If we never know we never know but it's only been 2 1/2 weeks since this all happened...why are we giving up so soon? I have been reading as much as possible and searching for some direction for weeks and then suddenly received an email from a dear friend asking if I had gotten a flu shot. Hmmm...yes, I did! At my OB appointment 2 weeks before Cooper was born, 1 week before my odd-ball symptoms showed up, the nurse practitioner asked me if I had gotten a flu shot. I said no and that I didn't plan on it. She then explained without mincing words, "If you don't get one you leave yourself susceptible to the flu which could cause you to lose your child." Strong words! I then asked, "If I do get one what are the possible side effects to my baby?" That question was met with this response..."NONE! If anything it could only increase your baby's immunity when he/she is born." I agreed and one quick poke later was on my way. I honestly didn't think a thing of it until I got that email yesterday and now I can't shake it. I have been reading EVERYTHING I can get my hands on and trying my best to get as educated and informed from all angles as I can. From what I'm reading this is obviously a controversial topic but there have been multiple studies done that link the flu vaccine with stillbirths...which, is exactly what Cooper would have been if I hadn't gotten to the hospital when I did. I'm just overwhelmed with this possibility and am doing my best to look into it all with a calm head and heart. Maybe I'm grasping for something that will never be defined or known for sure but I'm going to fight for an answer. If there is a possibility that a flu shot caused my boy such distress and quite literally almost his life I need to know....THE WORLD NEEDS TO KNOW! I will be a loud voice on the subject...as loud as I can be. But for now I need to research. Even if this isn't the road that led to Cooper's problems I will be an advocate for kick counting and active pregnancy for every woman. It can save your baby's life and your heart! <br />
<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-40494811330777580202012-11-07T07:58:00.000-08:002012-11-07T09:01:07.742-08:00Moments in timeBegan this yesterday November 6, 2012 but didn't post until the 7th. Sorry if there is confusion. <br />
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My day started very early. You see, today was my first day full day away from my boy. I hate to even say "first" because it implies there are more to follow and I can't stand even facing that after enduring the absent hours apart from him. Yet, this again is our reality for now. My point was that my day began incredibly early with a trip to our mini Cooper's room where I sat wishing for time to stop for a few hours. He was resting when I left. Not quite comfortably with a slightly elevated heart rate and faster than usual breathing. My sweet helpless son seemed to be distressed and agitated. He was working so hard (which I mentioned in the previous post) and it was showing! The last thing I wanted to do was walk away, especially knowing I wouldn't be able to return for at least 12 hours. It was heart breaking to leave his room and make the long walk to the car but I had to. I had a husband at home that needed to go to work to provide for our family. A devoted, loving provider that we're so blessed to have working so hard for our small family. Not only did daddy need to work but our Ellie bug is still fighting her virus (she never met one she didn't like) and needed her momma. So, out to the car I walked pained by the fact that I was leaving this tiny piece of my heart with a stranger for the day, trusting them to advocate for him. It's quite hard to trust a person you don't know with such a huge part of your world, but what has to be done has to be done. I'm coming to grips with the fact that there is no ideal in this situation. I'm kicking and screaming the whole way of course, but God is teaching me a valuable lesson of letting go of control and trusting HIS plan! Good thing He's such a big and great God because I'm putting up one heck of a fight...thankful He can take it and still blesses me with grace and love. I am far from deserving of that gift with my attitude some days (I'm sure my husband can attest to that) but I am forever grateful for the unconditional love and forgiveness.<br />
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The hours of the day ticked by like a slowly dripping faucet. I kept looking at the clock and wondering what was happening inside the walls of room 4024. Was my boy sleeping comfortably? Was his monitor alarming? Were the nurses paying attention? Was he lonely and crying? I had an urge to call almost every few minutes but fought it by staying busy with my firey little toddler. Good thing she keeps me on my toes! She was my silver lining. She was my joy. She was the face of God for me in that difficult time. So thankful for her! After a while I was able to get lost in her play with her and marvel at her innocence. I have so much to learn from this child. Then it was nap time...oh the dreaded quiet with nothing to do but allow my brain to wander down crazy paths. Just when I was feeling like a caged animal dying to break free I heard the sweet sound of my rousing daughter entirely too early. Usually that sound would have brought feelings of frustration but today it brought relief in my silent lonely moment of panic. At that point I had called the NICU about 3 times and was utterly disappointed to hear a new voice on the line, a name that had no face for me, a woman that didn't know my boy. I tried my best to fill her in on his likes and dislikes to make the transition easier for on both of them but she kept speaking over me, telling ME about my Cooper. Needless to say I wasn't a big fan of that. I already feel out of control and like I'm not truly connected with him properly because of this situation. The last thing I need is someone making that distance feel bigger. She was nice enough but very ill-informed, which also didn't sit well. She assured me throughout the day that his heart rate hadn't dropped even once...hard to believe that in a 12 hour span he doesn't dip but in the 2 hours I'm there he dips 4 times?! My gut tells me this woman is sugar coating to keep me calm since I can't be there or she just plain isn't paying attention. I was heart broken and so anxious I couldn't stand it by the time Neil walked in the door after work. I could barely sit still or even have a full thought. When he walked in I kissed my sweet husband and daughter goodbye and rushed to my boy's side to find him resting peacefully with good stats displayed on the monitor. We had made it. We got through this day. WHEW!<br />
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The evening ended with my boy swaddled up in my arms where we snuggled and snoozed for hours before I tucked him back into his plastic home while I stole a few hours of sleep before heading home at 4am. What a night with my man. Just thinking about those precious moments with him brings tears once again. I'm so thankful for my son that almost wasn't. He truly is a blessing and miracle through and through!<br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-70678144169226462162012-11-06T06:53:00.002-08:002012-11-06T06:53:46.176-08:00StrugglesCooper has been on an amazing upswing these past few days and I'm beyond
thankful for those positive strides, but those steps come with
consequences at times. Our boy has been working on doing so much on his
own lately that his tiny frame and insides are getting tired. He is
beginning to look labored and his heart rate is dropping more often. I,
of course, am fighting for them to make him more comfortable and to ease
his struggle but have been told it's best to allow him more time to
work through it. It's so painful to see him fighting. He shouldn't have
to be doing ANYTHING yet...I should be doing these things for him!
Breathing for him, eating for him...he should just be resting and
kicking me from he inside. I just hate pushing him. It's so hard to
allow him to work through things. I just want to make it all better
(said every mom that ever lived). So the technical update on our boy is
that he's still working hard and growing. Since getting his PICC out and
being taken off of TPN his blood sugar has been closely monitored.
Sadly his numbers aren't impressive thus far and due to that fact his feeds
have been drastically increased to 35ml, 24calorie breast milk
(basically they fortify my milk with high calorie formula to give him
more bang for his buck) in an attempt to up his blood sugar. All that
volume has been a bit tough for him so far. He seems to be refluxing and
gagging a bit (again the nurses are fine with it but it terrifies me to
see) and having some trouble stooling but his blood sugar has increased
a bit. On top of the blood sugar numbers his bilirubin numbers are also
not great. His direct has risen to 4.5 so we'll likely be meeting with a
GI doctor soon to discuss what that all means. Also our guy is working
on breathing 100% unassisted and seems to be getting a bit fatigued.
He's just learning so much on his own so quickly...and FAR before he
should have to and it's taking a toll. He's working through it and I'm
assured he won't get to that devastating state he was in a few weeks ago
when he became over worked. I'm hanging onto that promise but can't
help but hold my breath during this time. <br />
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God gave me such a gift with this boy! Not just that he's here and, well...alive, but God has blessed me with the most amazing connection to Cooper I could ever imagine. Don't get me wrong my bond with Ellie is astounding and I usually know what she's thinking and feeling far before she displays it, but with Coop, even before I met him I KNEW when he was in trouble or hurting and that hasn't changed. I sat by his bedside early this morning and began to doze a bit (it was far earlier than anyone should ever be awake) when I saw a vision of his monitor in my head and popped up in fear staring at his numbers...they were fine, then about 2 seconds later they dropped off and his alarm began to wail. Did I really know that was coming? Then, just an hour later the same thing happened. God has given me the ability to sense my boy's stress...thank you GOD! These are just a few of the small things that have happened that make me realize just how deeply I know my son. He is a part of me, even now that he's out in the world. This may sound a bit crazy but I believe it with my entire soul! And...if you ever want to feel like a crazy mommy just walk into the NICU...st least that's how I've been feeling lately.<br />
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All of these nurses and doctors are just plain amazing but they are numbed. Desensitized to the pain and trauma they see day in and day out. It's not their child laying helpless behind the plastic wall. It's not their child that can't speak on his own behalf. It's not their child turning blue, not breathing, or fighting to regulate his own breath. It's not their son's heart beating wildly out of control one second then barely making a blip on the monitor the next. They can't be blamed for the panic I feel every time I'm faced with one of those problems but their calm demeanor during those moments makes me feel like a lunatic.<br />
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Last night as I watched Cooper's heart rate and breathing drop off and stood at his side helpless (I've been told not to touch him or intervene during these times) but aching to fight for him I could do nothing but cry. The tears streamed down my face and I just stood there watching my sweet baby...my 33 week old fetus fighting. What a painful moment. Yet the nurse looked at me shocked that I was crying. "Do you cry every time he does that?" she asked very plainly. All I could say was, "Yes, I don't know how not to." In her defense I had never met her, she wasn't Coop's nurse, but she saw his alarm going off and was the first in the room so she wasn't aware of how frail I was. She then walked out of the room and a few seconds later our beloved nurse Melanie walked in saying, "She just said Cooper had a spell. Then she said you were crying. I told her I wasn't surprised." I love that Melanie knows me. She knows how sensitive I am for my boy. She knows how deeply connected I am to my son and how unabashedly in love with this child I am. She understands and that gave me comfort in my dramatic reaction. Not that my reactions need to be rationalized all the time (because let's face it I AM a bit of a crazy person with my baby in the NICU, a toddler at home, and post pregnancy hormones running rampant) but I can't help but wonder if my feelings are the norm. How else would someone act upon seeing their child turning blue and fighting for breath? <br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-56267684030088183882012-11-04T10:46:00.002-08:002012-11-04T10:46:54.487-08:00clothed in majestyRounds brought MUCH happiness this morning! Our doctor started by saying, "He's just amazing me! He has made such tremendous strides in the past week!" WHAT A LOVELY THING TO HEAR! <br />
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Coopie is now up to 24ml, his full feedings! The bump up in feedings has brought the news of no longer needing his TPN, or intravenous nutrition therefore our boy just had his PICC line removed! He is officially IV free and the only wires and tubes attached at for the monitor and feedings. WHAT AN AMAZING FEELING! If all goes well with his feedings and his blood sugars look good we're hoping to have him moved to a crib soon and also begin nuzzling and working toward nursing! Such wonderful news in our world! The only set backs are his continued high bilirubin numbers, which should be declining with the removal of his TPN. Also, since Coop has been off of caffeine and his CPAP his heart rate has been dropping below 60 from time to time. This drop is referred to as "spells" in the NICU world, but they are only considered spells and recorded if they last 10 seconds or longer and our boy has yet to go that long. I can never tell because anytime his heart rate drops feels like an eternity to me but his nurses have assured me that he's doing wonderfully and is "perfectly perfect in every way." Goodness I'm thankful for these ladies!<br />
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Next up on the agenda for the day is a long awaited bath (especially for his right foot which has been wrapped up since his second day here) and then CLOTHES! We get to dress our boy! I know it may sound silly but just that little insignificant milestone brings such joy. He feels like a real baby and I love every bit of it! Also...his cord fell off today...another real baby moment. My heart is very happy today for my sweet son. (I'll post pictures of our big boy dressed a bit later)<br />
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My heart is heavy for our daughter though. Our sweet Ellie girl has been battling an ear infection for a few days and now has developed a nasty little rash along with it. After 3 visits to the doctor we found out she has hand, foot, and mouth and some nasty little blisters on her tongue. She's been so fussy, sleepless, and just plan difficult this past few weeks and now we know why! Not only has her world been turned on it's side with the early addition of her little brother, but the poor thing has been sick as well! She is confined to the house for the time being and while she's sick we're limited to only touching Coop with gloves and no holding. It's not very fun to miss the skin to skin time with our guy but it's a small price to pay to keep him from getting sick. Ellie being cranky and sick leaves me feeling torn between my kiddos once again. I hate leaving her when she's struggling but I know Cooper needs me as well. I'm working on spending as much time with my girl while she's awake as possible then heading to Coop while she's in bed. So far so good. Prayers for her quick recovery are appreciated. Once our Ellie bug is all healed up she gets her first peek at her new baby brother. We've been given the ok to bring him to the window for her to check out! I just can't wait for that moment!<br />
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What beauty today has brought. Thankful for the day!<br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-79861406999043067312012-11-04T09:56:00.000-08:002012-11-04T09:56:29.988-08:00FacesThe beginning of our life here at the hospital was flooded with people. Blurs of conversations and faces. Finding peace and quiet in any sort of seclusion was sparse. I was blessed to have Neil by my side as we stared at our boy behind the plastic walls of his bed. Not only did I have my husband holding my hand, but we also had our parents waiting in the wings, dear friends hugging us and holding us as we cried, family members that traveled for hours and hours just to squeeze us and get a glimpse at our boy, and countless visits from our dear pastors and prayer warriors at Hope. We were inundated with guests and things to keep our minds busy.<br />
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Time at the hospital is looking very different now. In the beginning I didn't have to eat a single meal alone, I had company to go grab coffee downstairs, I didn't even leave Coop's room without a chaperone of some sort. But now I'm often here alone. My days are spent in seclusion and it's not all bad. I have time to write, time to read and learn about what has happened, may happen, and will happen to my sweet son in the days, weeks, months, and years to come. I have time to reflect on what my heart and my family has faced these past 2 weeks. Upon that reflection I'm still in shock and a bit of denial but it's sinking in little by little. In moments it feels as if the full force of what has happened hits me then the floods of tears open up, and at those times I'm incredibly thankful for my seclusion. When I walk down the halls, step into the elevator, or sit down in the cafeteria alone I can't help but notice all the faces around me. Just a few feet away yet so far apart. All of us together yet alone in our own worlds amidst our own struggles. I see the exhausted blank stare of one woman and wonder what her worry is over. I then see happy chatting amongst a couple at the next table and wonder what they may be facing today...joy, sorrow, confusion? Just last night as I staggered out of the building to my car at 11pm I saw two vibrant faces walking toward the sliding doors of Mercy. A glowing mother-to-be sitting in her wheel chair with her swollen belly in her hands and an overly excited daddy to be pushing her a bit too fast. All I could think is, "What a night they are in for!" I smiled and said a prayer for them. What joy is to come for their hearts! I pray they had an easy labor and delivery and that their sweet baby is in the nursery 2 floors below me at the moment happy, healthy, and chubby as can be!<br />
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Hospitals are full of faces, each with their own story. I feel as if my face speaks for itself as I walk alone through the halls. Make-up free and lined with sleeplessness, my blank stare screams of the preoccupied thoughts of my family. It's hard to get into a different state of mind and put on a new face...that's the best part of the seclusion of our hospital home...I don't have to. I'm free to wear my new face. The face of a mother full of concern for her sick child. The face of a mother searching for answers and clinging to hope. The face of a mother exhausted from balancing her new life. I'm thankful for the opportunity to balance this and to have my son here but this face is a new one for me that I'm still learning how to wear.Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-9826229899898077922012-11-02T18:40:00.004-07:002012-11-02T18:44:40.698-07:00Brighter Days<div class="separator" style="clear: both; text-align: center;">
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Tonight I'm writing with a triumphant heart. I don't want to get ahead of myself because we still have a lengthy road stretched before us but I'm beginning to feel the light of our path. Again tonight as I write, Cooper is at my side. I chose to drive back to the hospital to spend the night with my boy after getting our Ellie girl to bed. On the way here I began to cry, not uncommon lately, but this time it was different. This time my sobs weren't a plea to my Lord, instead they were a release of praise and worship. I had been holding onto so much fear and protecting my heart in case the unthinkable were to happen to our boy...to our hearts. But tonight, as I drove down the now familiar highway toward the bright lights of downtown my heart sang and my soul rejoiced because our mini Cooper seems to be getting better. There is light in my darkness and I can feel the Lord saving me and my boy. I just kept thinking, "He's my boy that almost wasn't." If the Lord hadn't told me "your baby hasn't moved..."If the Lord hadn't moved me to call the doctor or go to the hospital...If the Lord hadn't guided the doctors to take me into emergency surgery...our world and outcome would be much different. I have FINALLY allowed myself to accept what I have been begging for in my head but unable to believe in my heart...my boy is MINE! It seems as if I get to keep him and I KNOW that God has saved his life and given him to me for such an amazing purpose!<br />
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As I cried I began to dream about his future...what he'll look like (Neil, of that I'm certain), how strong yet gentle I hope he'll be, and what he'll long to be when he grows up...oh what a bright future it seems we have in store. Our God is an awesome God and I'm SO THANKFUL! I know that tomorrow is never promised and each moment is a gift so who knows what the light of a new day will bring but tonight I felt every bit of joy over the miracles God has woven into our new world and for that, again, I'm beyond thankful. There are no words to express this feeling...my heart sings for the strides I see in our Cooper and I pray with every bit of my strength for continued health and improvement.<br />
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These feelings and a flow of joy has swept me up because of the events that have unfolded throughout the day. This morning when I called to check in on our boy I found out that they removed his CPAP yet again. My heart lept at the news but then quickly tightened once I remembered the respiratory distress and heart failure that followed our last attempt at this. I was quickly reassured that he is a new boy now and much healthier, I reluctantly agreed. I held my breath most of the day but as I sit here now and look at his monitors I'm able to breathe a sigh of relief at the numbers flashing before me. Heart rate in the 140's, respirations in the 50's, and oxygen levels in the high 90's...ALL ON HIS OWN! This is even more exciting than first steps! Not only is our Cooper doing an AMAZING job of breathing on his own, but he is also tolerating and digesting his feedings incredibly well. I've never been happier to see baby poop in my life! Since all of those things are going well they were able to move his feeding tube from his mouth to a smaller tube in his nose, which looks to be much more comfortable and allows him the ability to suck his fingers and pacifier, which he seems to adore. So many wonderful changes and strides have been made over the past few days! His bilirubin is up from yesterday but hopefully will be declining as his feedings increase. Also we still don't have the results on the genetic testing, but we'll cross that bridge when we get there. For now I'm rejoicing in our good news and steps toward a normal life together as a family.<br />
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SO THANKFUL!<br />
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Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-79749342941694045562012-11-01T20:13:00.002-07:002012-11-01T20:13:36.412-07:00Yellow boyWell our sweet Coopie went from blue to pink (normal), to yellow! (I certainly hope there are no more colors involved in this pattern) Like I said in the post earlier, our boy's direct bilirubin has crept up over the past few days and can't be treated with photo therapy so he's just turning a bit more yellow everyday. There isn't much they can do for that except keep an eye on it and try to control it with some medication, which he has now been on for 2 days. It's not at a critical level by any means but they want to keep it under control which we're thankful for. Besides the bilirubin issue we're really not facing too many obstacles at the moment. His morning rounds orders and instructions for the day have gone from 8 full pages on day one to 1/4 of a page on day 13...again, we are THANKFUL! This morning the instructions were to up his feedings to 18ml every 3 hours and see how he tolerates it(he has been doing well thus far), make sure he poops (which he did, YAY!), give meds for the bilirubin, and do a blood sugar test. A MUCH easier day than we've been having in our world.<br />
<br />
Mini Coop is doing an awesome job of digesting and, so far, has been keeping up with his feedings. I was told this morning that once we get up to his full feedings we can stop his TPN and take out his PICC line! I then asked what his full feedings would be and Melanie (another favorite nurse whom I adore) told me in the low 20ml's and that it's possible to be there by Monday! HOW EXCITING! I'm trying not to get ahead of myself but what a wonderful hope! Also, when Dr. Nold made rounds this morning she said she was planning to take him off of his CPAP around 33 weeks gestational age and take him straight to room air with no intervention...that would be this Saturday or Sunday! Again, SUPER EXCITING! Also a bit terrifying since last time he went into respiratory distress and showed signs of heart failure. I have been assured though, that he is a different boy now and I can see that too so I'm hopeful. His platelets have been going up beautifully, just as they should, so we are no longer hanging on every number in his CBC. In fact, they are so confident in his numbers that they have opted to only draw a CBC every couple days. Another bit of exciting news....it was a good news kind of day!<br />
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On the agenda for tomorrow morning is a blood draw to check the bilirubin count once again and hopefully we'll also get the results back from Cooper's genetic testing to rule/point out any long term issues we may be facing. Prayers for those 2 tests would be greatly appreciated. Also prayers for Cooper to keep on this upswing and GOOD NEWS trend!<br />
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So much to be thankful for!Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-6913214833249011352012-11-01T19:55:00.001-07:002012-11-02T18:48:40.419-07:00Thank you doesn't cut itSince starting this journey we have been immersed with love,
devotion, prayer, gifts, kindness, and such amazingly beautiful selfless
acts of generosity that we are overwhelmed. We honestly can't say thank
you enough for all of your encouragement and help through this time.
This has by far been the most challenging time we have ever faced in our
lives thus far and to see and feel of the love coming from our friends
and family is truly astounding. You are carrying us through this in more
ways than I can express. I hang on every comment on the blog and
facebook, and long for my boy to be lifted to the Lord through your
prayers, so please know that every act and word from you is noticed and
appreciated beyond measure. We have been blessed by a mealtrain that a
dear friend organized and upon logging in we found that we are covered
for meals from now until Christmas! There are just no words for our
gratitude. We have been gifted with such things of beauty...angels to
place in Cooper's room to watch over our boy, prayer and devotional
books, food, clothes, prayer shawls (crocheted shawls for myself,
Cooper, and Ellie that were each prayed over for each of us the entire
time they were being made in order to literally cover us in prayer
through this tough time), visits, care baskets, and so much more. We are
just incredibly grateful and want to extend our deepest thanks to each
and every one of you. Just knowing you're reading this blog and
concerned for our Cooper and family is heart warming and overwhelming.
We love and appreciate you all.<br />
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<br />
Our boy seems to be
turning a corner...a good corner! We have no doubt that every prayer and
positive thought you have lifted for our son is why these amazing
things are happening. He is getting better. Everyday the list of tests
and hurdles is minimizing. In our new world we know better than to get
too worked up over a few good days since things can change quickly but I
will say that the light seems to be getting brighter and the heaviness
is lifting a bit. He is still a sick and tiny boy and has a long road
ahead but I can SEE his road now and I'm allowing myself to believe in
his path. To see an end to this reality and a beginning to the one I
look forward to. Our boy is doing well for the time being and I'm
hanging onto that for dear life.<br />
<br />
Cooper is at my side as I
type this with a calm and steady heart rate in the 140's-150's (much
different than the 190's we were up against just a few days ago) and as
cozy as can be. What a comforting feeling to have him an arms length
away. Sadly this night will end and I'll have to be away from him
pretending my world hasn't halted. For the past 2 weeks (I can't believe
tomorrow at 8:50am Cooper will be 2 weeks old) our world isn't the only
one that has stopped...my parents have completely walked away from
their world as well. They dropped everything and have taken on so much
responsibility of Ellie and our home, again, thank you just doesn't cut
it! With them here I felt free to spend as much time in the hospital at
Cooper's side as possible and am beyond grateful for that luxury. But
life must go on. Today nana had to head back to Illinois and her busy
life. She refused to leave until our Cooper was much healthier and by
God's grace he is getting there so today she made her tearful drive back
home. I have no doubt that she'll be back in the weeks to come but for
now I have to face the fact that I can't just come see our boy whenever I
want. Something has to give and I have to choose between the two pieces
of my heart...Ellie and Cooper. The balance will be hard to find and
we'll need to lean on our amazing friends and family yet again, but
we'll get there. It will be painful because no option is ideal but
hopefully in a few weeks time this will all be a memory as our family
finally unites in our own home!<br />
<br />
I find it fitting that
I've spent my day overwhelmed with thankfulness given that it's the
first day of November, the month when most of us begin to count our
blessings. I try to make it a habit of beginning and ending each day
thanking God for my blessings but at this moment I'm thankful for more
than I can express. The blessings are overflowing and I'm amazed by it!
Amidst this time of confusion, frustration, heart ache, and pain the
blessings still flow freely and immensely. <br />
<br />
So, as insufficient as this is...thank you to you all.Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-79869805328010852962012-11-01T12:18:00.002-07:002012-11-01T12:18:20.347-07:00Writing the story...I began this entry on Monday and am just now posting. Sorry for the delay. I'll also try to post one for today if I have the time. :) <br />
<br />
MondyCoopie's update: Yesterday there was a little concern for Coop's direct bilirubin level of 1.9, today's lab showed the number had jumped to 2.9 and the enzyme testing came back concerning as well so a liver ultrasound was ordered. Dr. Nold said they'd do the ultrasound in the morning but of course, as a mommy, I wanted it done that instant. The nurse read me like a book and followed Dr. Nold out of the room. She returned shortly saying, "they'll be in here in an hour to do the ultrasound. I know I'd want it done right away so I asked the doctor if it was ok for me to order it now and she said yes." BLESS THIS NURSE'S HEART! Helen you are a doll! At 11am in came the ultrasound machine and Cooper did a great job of laying still and being peaceful, for the most part. In order to perform the scan they needed his tummy empty so Helen used a syringe on the end of Coop's feeding tube to pull up any food left in his belly and I was pretty scared to see some blood join the usual leftover breast milk. Helen took it to the doctor and was told not to think too much of it but we'd keep an eye on it. It could have been old blood from delivery that was ingested, or just a bit of blood from the tube irritating his tummy. Again, "we'll wait and see." After his stomach was emptied the went ahead with the scan and just a short hour later I was handed the results, "ALL NORMAL!" Thank you LORD! My boy's liver, pancreas, and gallbladder all appear to be normal in every way! Just one more check off our list. I was told the increase in his direct bilirubin is most likely due to his IV nutrients and fats. The doctor has chosen to cut out all the lipids (fats) and reduce his TPN (total parental nutrients) in hopes of stopping the upswing of the bilirubin levels. The catch is that he needs to be digesting and upping his feedings in order to get rid of the TPN all together but he also needs the nutrients from the TPN while he builds up his ability to digest foods. It's a bit of a catch 22 so we'll be working on balancing that issue. It's such a relief to have one solid answer on something. My boy's liver is ok. He's working on his eating and he's getting stronger everyday. We never know what tomorrow brings, or the next hour for that matter, but we have hope, so much hope! My nurse yesterday said something that has stuck with me, "We aren't in control. The doctors aren't in control. Cooper is writing his own story and we're just here to help him along." What a beautiful thought...I'm so thankful for these women and their hearts! Not that I'm a huge fan of this lack of control but I do enjoy the fact that my boy has his own story. The Lord created him for such an amazing purpose and every second Cooper is here is an addition to that story...that purpose. What a story it will be! I'm so thankful to be a part of it and to have to honor of calling him my son!<a href="http://www.wisegeek.com/what-is-parenteral-nutrition.htm"><br /></a>Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-62174505555524059552012-10-29T12:03:00.001-07:002012-10-29T12:09:16.585-07:00Aching HeartThis morning started like most in our new world. Blood draws at 4am, x-ray machine wheeled in at 7am, shortly followed by the ultrasound machine. This morning was a busy one for our little guy. A few hours later our doctor rounded through and we got the plan for the day and an update on what's going on with our mini Cooper. I'll start with the good news...the brain ultrasound came back normal, no bleeds, thank God. The CBC (complete blood count) came back showing platelet levels at 124,000, a MUCH different picture than yesterday's count of 52,000. We're still a bit unsure of this giant jump and what that may mean but all we're focusing on is that they are in a safe spot so that's great! His chest x-ray looked much the same...hazy but ok. He is doing well with his feedings for the most part, despite lack of a bowel movement in over 24 hours, so they are increasing the amount of breast milk he gets at each one...more good news. They have also chosen to take him off of his regular dose of caffeine (he required it because preemie's systems are so immature that they often just forget to breathe and the caffeine stimulates that reflex) because his heart rate is running a bit high, jumping even higher, and because of his bought of SVT.<br />
<br />
Then came the "ify" news (it never really begins as bad news since most of it is 'watch and see' stuff that can turn bad or good). His indirect billirubin numbers are fine (those are the levels that are linked to needing those lights I talked about before and you've seen in pictures) but, against the odds his direct billirubin numbers have jumped. The doctor explained that this doesn't usually happen and is alarming enough to require further testing. These levels are linked to his liver so at 4am during his usual blood draw they will be testing for some enzymes to make sure his liver is functioning properly. If it comes back abnormal they will need to ultrasound his liver and see what's going on. We were told not to lose any sleep over this at this point, it could be just fine. It's alot easier said than done this not losing sleep over your sick and helpless baby stuff but I'm working on it. Maybe this is just mommy intuition or just me being overly nervous but the liver is where my thoughts have been lingering through most of this stuff so I'm very curious to see what we find out. My brother's surgeon Marleta is a tremendous blessing to our family and has been calling and checking in on our Cooper. She brought up the liver the day she found out about his early arrival and symptoms so if we're facing an issue with it I will not be the least bit surprised. I have yet to get a straight answer on what exactly a problem with this would mean but I plan to do lots of research once I'm done with this post.<br />
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Our day today should be uneventful...as long as Cooper behaves himself. Much like yesterday but more news to come in the morning. As we were going through today's plans our nurse sat down with us to just chat about the weeks and months to come. All those details that we were too frail to think of before...insurance, billing, after hospital intervention, etc. It felt so odd talking about going home so early in our journey but it also felt good. It felt nice to say those things out loud. To allow myself to believe that our future is a bright one. I've been holding on to that hope but I just couldn't allow myself to think about it for fear that it may not happen. I also couldn't think about the alternative to bringing our boy home. I don't even dare to say it out loud now. It's just too heart wrenching to consider. As I'm contemplating all of these things I heard a gut wrenching cry from the hall and knew in an instant what that mother just 2 doors over faced. Her baby's outcome was the unspeakable. Her cries took my breath and my aching heart heaved for hers. I couldn't hold myself together just hearing her agony. That cry flooded me and made me think of our dear friends who too just faced the cruel reality of losing their baby. I can't even contemplate the heart ache they must be feeling. I long to cover them in comfort and peace. Surround them with love, and take it all away. I feel so selfish being so caught up and sad about my new normal...praise God for my new normal and for the difficult times I'm facing. Their new normal is so very different, and I'm so sorry for that. I ache for them and have been continuously praying since hearing that horrific sound.<br />
<br />
The nurse knew just what I needed and placed my boy in my arms. I couldn't hold him close enough. I'm so thankful for every breath that boy takes. Even if he weren't mine forever he is mine now and I'm thankful.<br />
<br />
<br />
I just want to end this post with a special thank you to Matt and Betsy Mitchell. We love you with all our hearts and can't even put into words how deeply we appreciate everything you have done. In the midst of your struggles and pain you have carried yourselves with such beauty and grace and put us ahead of yourselves. You are a blessing beyond words and your spirits are so bright. You are loved so deeply and lifted in prayer so often. Your sweet Kate has touched the hearts of many and brought such blessings. She'll always be remembered and loved! xoxoTraciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com2tag:blogger.com,1999:blog-7975795143141760053.post-75808891645346259632012-10-28T14:36:00.002-07:002012-10-28T14:36:08.728-07:00Through the valleyI think I already wrote this on facebook but want to make sure to document it here for my own sake.<br />
<br />
On the way to the hospital I was full of fear yet somehow calmed by knowing I was on my way to the help I needed. I just had a sense of something lurking around the corner and an urgency to prepare for it. I turned on 107.1 (the Christian station for my non-Des Moinesers) and prayed for strength and courage. This song rang out as I was round the corner for Mercy and I just sat there listening and crying telling God, "If you want me to I will go. I will walk this walk. I am here and YOU are with me. Carry me through this" I know this sounds insane but it happened and I'm so thankful for the small bit of preparation that the Lord blessed me with that night. It, of course, didn't completely prepare me but it connected me to my faith and to a source of strength outside of myself and for that I'm truly grateful!<br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com1tag:blogger.com,1999:blog-7975795143141760053.post-22023353284857296342012-10-28T14:30:00.003-07:002012-10-28T14:36:44.528-07:00As the world turns...Last night I found myself beyond exhausted yet not wanting to sleep. I can't even explain the feeling or why it was there but I just didn't want to close my eyes. I didn't want to stay at home away from my boy but I also didn't want to stay in the stillness of his dark room while he slept and his monitors flashed. Both options left me feeling empty with a big pit of anxiety in my stomach. I just couldn't put my finger on what the problem was. This morning I still can't. I want to be alone yet I'm afraid of the silence. I want company but struggle to keep a conversation. I want to hold my baby yet I'm afraid to at times. I want to play with my daughter but lack the energy. I'm just a big ball of contradiction and confusion. I have moments when I can literally see the light at the end of this dark tunnel and then moments where it feels like the end is no where in sight, or to bleak to look at. I'm lost in the haze of this reality so often.<br />
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Don't get me wrong, I'm fully aware it could be much worse. We are blessed beyond words to see the life literally running through our boy with each squiggle of the monitor. God gave him to us despite the obstacles Cooper has already faced. He is here and that I'm thankful for. I'm just struggling with how to deal with what's to come and what I'm seeing everyday. I've seen my boy's heart beat disappear far to often (once is too much to be honest). Feeling it race out of control was just as terrifying. Every small hiccup feels like a ton weight being dropped on my shoulders. How do I carry this weight and still walk through my day as a mommy, a wife, a daughter, a sister, and a friend?? I have fallen so short in those roles this past week and I'm beginning to feel a weight added because of that as well. I'm so short with people and so focused on the path ahead that real life, the one outside of these hospital walls, has seemed to cease. I'm well aware that in actuality it hasn't, and I'm devastated that the world continues to turn for everyone else when mine has stopped. I wish I could just pause time until Cooper is ready to head out into reality with me. Us together. Us as a family. Myself, Neil, Cooper, and Ellie, together, as it should be. Every time I'm coaxed to leave Cooper's room the stark reminder that life is still going on all around me shocks me back to reality. I have to move forward. My daughter needs me to spend time with her. Neil has to go back to work. My parents can't be here forever. I have to face the fact that I'm not going to get what I want. I just can't bring myself to figure it out yet despite the lingering fact that Tuesday Neil will have to wake up and head to work and I'll be left for 8 hours a day to fight this battle between the two pieces of my heart. I hate this situation so much. I can't put it into words. The loss of control and the painful reality that something has to give. I just hate it all.<br />
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Through those feelings I try my best to cling to faith knowing that God brought us to this for a reason. He knew this was coming from the time he created me. He has prepared me for this even though I feel so ill-equipped. I tell myself it's in His hands and I know how capable those hands are. Even with those thoughts and that faith I'm still angry and fighting the whole thing. Good thing my God is a big God and He can take my fight. I'm sure it doesn't surprise Him...he made me a bit feisty.<br />
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As I type this I'm sitting next to my husband as he holds our baby boy (he has been gracious enough to let me do the holding each day except one so it was finally his turn again) and I long to stop time but, as we already went over, that's impossible. That fact is made even more evident by the sounds I'm hearing in the room next door. A new baby has joined the NICU. Another 30 weeker. A sweet and precious baby girl fighter this time. I don't know the details but the scene is all too familiar. The cart she came in on and the masks and gloves working over her tiny body. I ache for those parents I am going to be seeing day in and day out for the weeks and months to come. It's a battle no one should have to face. The world is full of these dark times, many darker than my own, and they just aren't fair. I will be praying for this sweet girl and her family everyday and I ask you all to do the same.<br />
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Enough about me and my ramblings. On to Cooper! Mini Coop had a great night full of rest and peaceful sleep. Since baby got to sleep so did mommy. This past week must finally be catching up with me because I feel as if I could sleep for days. I just might! We began our morning around 7am with a second blood draw because the first clotted and they couldn't run the CBC (complete blood count). After that it was just feedings (4ml of breast milk dripped into his stomach through a tube in his throat), vitals, diaper changes, and repositioning until the doctor did rounds and let us know the plan for the day. Dr. Murphy is the neonatal doctor here today and also the one that took Cooper once the OB got him out of me. He filled us in on the news that despite Cooper's impressive platelet count of 104,000 yesterday his CBC came back at 52,000 today, just 2,000 away from yet another transfusion. Bummer! We were so excited that his count had gone up yesterday that this was quite the blow. We just don't know what's going on with him and his platelets, but the dropping of them puts him at a greater risk of internal bleeds which is terrifying. The doctor isn't terribly concerned yet and ordered another CBC for the morning along with another chest x-ray and a head ultrasound to make sure there is no bleeding on the brain. As for the rest of the day it should be a quiet one. No medications to run besides his IV nutrients and no tests to endure. Just eating, sleeping, peeing, and pooping. My boy must really like to mess with mommy because he has peed and pooped on me quite often lately. It's funny how happy it makes me when it happens though. It means his body is working and I love that reassurance! I'm ok with a little poop and pee if it can bring a smile to my face during these long days of waiting and praying.<br />
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Thanks for reading, praying, and supporting. We love you all! Don't forget to pray for our new neighbor, Pipper. <br />
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<br />Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0tag:blogger.com,1999:blog-7975795143141760053.post-55387856541055989472012-10-27T21:47:00.001-07:002012-10-27T21:47:13.483-07:00Day #8: Post round one of PDA medicationIt's only 9am and our boy has had a full day's work up done already. He's resting comfortably with a heart rate in the 160's and good stats so all is well now.<br />
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Last night was a bit bumpy but mostly because Cooper just didn't seem to want mommy to leave his side (what a wonderfully beautiful problem to face). Sleep eluded me so the nurse and I decided to give Cooper a sponge bath at midnight. The bath was not only a relief to his body in the end, but also a very important bonding time for me. To know that I can care for my baby is HUGE for my well being and cleaning him and touching his skin gives me such a sense of purpose and love.<br />
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He was soothed and snuggled up afterward and we thought he'd sleep so soundly...little did we know that all he wanted was mommy's touch and his pacifier. I spent over 3 hours standing at his side and holding his paci in his mouth. Any attempt I'd make to lay down was shortly followed by his whimpers and cries until I dragged myself back to his bedside and watched his heart rate immediately go back down and settle into a slow rhythm and then he'd lull back to sleep. What a stinker. Around 5am he was tuckered out and finally gave into some solid sleep without me directly touching him.<br />
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We rested until about 7:30am when his room sprang to life. First came his chest x-ray which he's been having pretty much every morning to get a good look at his lungs. Next came the good news that his platelets had raised on their own and were at a nice level. Then we discovered that his calcium was a bit low so they changed his nutrient concoction and that had to be rehung and started right away. Next came his "cares" (which I get to do). Yet another new term for me...basically it's checking his vitals, changing his diapers, changing his positioning, and cleaning out his mouth if need be. This is my favorite time of the day (besides the days I get to hold him) because, again, it gives me the sense that I can care for my baby. It's such an amazing feeling to know that I'm at least playing a part in this situation. Sometimes being a NICU mom leaves you feeling so helpless that you begin to think being there doesn't really matter at all. When you get to do your part, as small as that part may be, it brings peace and self-worth in this uncontrollable time. Cares bring joy to my heart and a sense of purpose to my soul. I'm his mommy and he needs me! Following cares came his echo cardiogram. The tech performing the echo couldn't tell me anything but we're praying his PDA has closed from the first round of medication and that we can avoid more meds and surgery. Once the echo was done we discovered that his IV is no longer working so it needed to be removed. Cooper has an IV and a pick line (an iv that basically goes up through this leg and straight into his heart). His pick line serves as means for his nutrients that continually flow through him 20-24 hours a day and his IV typically serves during transfusions (blood is too thick to go into the pick line) and medications. IV's tend to have a shelf life and go bad where as the pick line can last months, and since his stay is foreseen to be quite long, the pick line was his best option. That all being said, his IV has gone bad (this is #3) and it's time to do another if need be.<br />
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After all that madness I find that's it's only 9am and it feels as if a whole day has passed. Hospital time is so different than real time. It's easy to get lost in. The seconds can feel like centuries but then suddenly 4 hours have passed and you don't know what happened. It's very surreal and hard to grasp but again...it's our new normal so I'm working on getting use to it. <br />
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A bit after 9am Dr. Becker, our cardiologist walked in to go over the echo results. He began with the delightful news that the medication did just what it intended to and closed up our boy's PDA. He followed that by saying he was actually shocked by it since it was so big. Whew! (thanks for all the prayers...God is good) He followed that exciting news with, "but I still hear a murmur." (roller coaster goes up, roller coaster goes down) He explained that since the PDA was closed off and the flow was gone during this echo they were able to see more clearly and found a structural issue within Cooper's heart. He explained it like a water hose when you stick your finger over the spout and cause pressure it begins to shoot wildly. They measure that pressure and then decide on a course of action. In Cooper's case the pressure is at 20% and has led to the tried and true result of..."we'll wait and see." Basically we're waiting and hoping for this issue to resolve itself and we've been given a window of 3 weeks for that to happen. At that point we will do another echo and see where we stand. I didn't delve to far into what comes next because I'm sure of the answer (we'll find out when we get there) and also I just don't know if I can face it just yet. One step at a time.<br />
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It was a blow to hear but thankfully not a lingering punch that left me sobbing. Instead I faced the unknown with more hope and less worry. Something I'm striving for through this process. Just leaning on God for strength knowing His hands are on this therefore I should find peace in these troubled times. Worry won't add a single moment to my life...I repeat that quite often in my head all day.<br />
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Instead of lingering over the "what if's" I found myself smiling and playing with my daughter, surrounded by loving and amazing family members that traveled from miles away just to stand by our side during this fight. They have lost sleep and sacrificed to just show up for us and then have to leave a few short hours later. What peace and joy they have brought! Seeing Cooper steal their hearts was so warming and soul soothing for me. My boy is deeply loved and cared for by so many. Blessings were all over us today and we're so thankful!<br />
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Despite the love that lifted me through my day I still find myself a bit shaky and unable to spend the night at home. There is something so comforting about being by my boy's side, even if I'm not doing anything. Just being there to hear his whimper makes me feel like a mommy...I'm where I should be taking care of him and loving him. I know and trust the nurses with everything but it does this mommy's heart good to be able to react to his stress signals. Here's to an uneventful and soothing night followed by the light of a new and hopeful day. Traciehttp://www.blogger.com/profile/10933743000812241845noreply@blogger.com0