Sunday, December 23, 2012

Christmas 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!

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.

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.

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.

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!

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!


Sunday, December 2, 2012

Let the adventures begin

Well 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."

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!

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.

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.

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!

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!

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.

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.

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!