Tuesday, March 2, 2010

Matthew Aaron-Tuesday, March 2

As I sit here looking at my 3 day old newborn, in the stepped down NICU, in the incubator, under blue lights, hooked up to monitors, an iv and a NG (nose feeding) tube, with a future so uncertain I can’t even begin to think about it. I am stunned. How did we get here?

Less than 80 hours ago (Friday night), I was hoping Matthew Aaron would join us in the world. And in a whirlwind, 2 hrs and 15 mins, he did (1:47am Saturday morning). He had a hard time regulating his body temperature after birth. We swaddled and sat next to the heater. He wouldn’t nurse and as he got jittery, we were concerned his glucose was being depleted because of his cool body temperature. We tried to give him a bottle, and he took a little but was pretty much uninterested. We did this for the next 8 hours.

12 hours after birth (Saturday afternoon), we got him in to see the on call pediatrician. As she’s looking him over, the conversation with the doctor went like this: Dr- “Did you have an ultrasound?” Us- “Yes, at 18 weeks” Dr- “So you know about his hands?” Us- “What about his hands?” Only then did we notice that Matthew only had 4 fingers on each hand, no thumbs. We sat there in shock. How did we miss it? While we sat there in disbelief, the doctor called the neonatologist at the hospital to see if there was anything immediate she needed to do. After this consult, Matthew had a CBC blood draw which came back normal. They sent us home with a follow up appointment for Monday.

So, 14 hours after his birth (Saturday late afternoon), we started digesting this information. Suddenly, our future seems very scary. We don’t know if this is Matthew’s only uniqueness or just the first outward symbol of something else. Darren found an article on the Boston Children’s Hospital website that started to give us hope that growing up without thumbs will not be as limiting as we first feared. We go between being scared of what’s to come and being hopeful, knowing that we will do whatever we can to help Matthew become the full potential of the man he can be. Matthew is still not that interested in eating…not at the breast or the bottle. Though he is pooping and peeing, so we aren’t too concerned yet. We call a lactation specialist to come on Sunday.

Matthew awoke at 4:15 on Sunday morning, a little fussy but still not wanting to eat. So I had a good few hours to hold him and love on him. As I did, I realized that although the unknown was scary, that can be said for everyone in the world… none of us are guaranteed a particular future (even if we are born ‘normal’) and none of us are promised more than the moment we are in. An example of that is Layla Grace. There is a 2 year old little girl in our town that is dying of cancer (www.laylagrace.org). Her parents are having to come to terms with her life cut short. I realized I need to be thankful for the day that I have. Right now, he doesn’t need thumbs. If we can get him to eat, whatever is ahead we can tackle at that time. So Sunday morning seemed a little brighter.

My midwife came to do an uneventful follow up visit on Sunday afternoon, followed by the lactation consultant visit. We did identify that his recessed chin interfered w/his feeding. It looks as though Matthew will not be able to traditionally breastfeed. Okay, I’ll pump and give him breastmilk in a bottle, supplementing w/formula when we need to. Now, he needs to take the bottle. We try every few hours and sometimes we get him to take ½ oz.

Monday morning is the appointment with our family pediatrician. She had gotten a heads up from the on call pediatrician from Saturday, so she is prepared. We have a laundry list of concerns, every little thing is concerning to us…what is ‘normal newborn’ and what is ‘unique to Matthew’. Of our concerns, she has a few as well. The thumbs, the recessed chin, the undescended testes are tops on her list. Although each of those by themselves are treatable, she is scheduling a referral for us to see a geneticist to see if we can find out if these are symptoms of something larger. At the visit, she tests his billirubin to see if he’s jaundiced.

We hadn’t heard the results from the referral or the billirubin test by 4:00, so I call the doctor’s office to check. We get a call back from the nurse “the doctor will call you when she’s done seeing patients”. Darren goes to pick up Alyssa and Jackson from school as I wait by the phone. We should have realized this was a red flag…the doctor needing to call us back but we didn’t at the time. Our doctor called while Darren was out and told us to pack a bag, we needed to go get admitted to Texas Children’s Hospital. Matthew’s jaundiced and at 2 days, he needs to be treated at a hospital. It might as well be the one where the geneticist will see him too.

So, we head to Texas Children’s. To be admitted you have go through the ER. It is crazy! It takes us 2 hours to get a bed in the NICU. The doctor on duty talks to us about Matthew’s history, sets up the IV to combat his slight dehydration and he recommends the NG tube for nutrition until the occupational therapist can come help us to get him eating. The blue lights are on. He’s hooked up to the monitors.

The night attending spends a good 20-30 minutes with us. Going through some additional concerns of hers… in addition to the others, his big toes, his ears, and a heart murmur. She walks us through the litany of tests they will begin to perform. A chest xray, a head ultrasound, an abdominal ultrasound, a full xray of the bone structure, an ekg, possibly a MRI, a hearing screen, and full workup by genetics. Every doctor…every exam…is scarier. The bad news just seems to be snowballing. The only piece of good news is that by the end of our stay (which we were hoping would be a day, but looks like it will be no less than 2 days, but might be a week), we should know the full extent of Matthew’s uniqueness and we can begin to accept and prepare for our future.

They have to poke and prod him for blood samples. He cries, we cry. I’m looking forward to when the jaundice is gone and I can hold my baby. I need the comfort of his squishy little body, so I can remember that this moment is the only one I’m promised and I need to be thankful for it. Right now, everything else is just too uncertain.

We appreciate all the prayers and good thoughts you can send our way! Thank you!!


  1. Katie and Darren - First thank you for the update and know you are all in our prayers. Hold faith that you are in the best facility in the world and are doing everything that can possibly be done. Becca and I have a niece that had open heart surgery there less than 24 hours after being born. Simply amazing. The facility is incredible, you are surrounded by family and friends that love you and most importantly you have each other. I wish I knew what the future held for you and your beautiful son, but know we are here to do anything and everything we can to help. We are a phone call/email away anytime. - Matt and Becca

  2. OH, Katie, I am so sorry! The only condolence I can offer is Koen had a myriad of issues when he was born as well. Pupillary cysts, double hernia, heart murmur, lip deformation, hearing issues, etc. He has recovered from most, and still working through speech issues. I pray that since with Matthew there are several issues, they are just that - just small issues. If you need ANYTHING! We are here.
    Jen and Darrell

  3. Dear Katie,
    My heart goes out to you and I will most definitely be keeping you and your family in my thoughts and prayers. However, after reading your post here I am confident that you already have the faith and the strength of character to meet any challenge you might face as well as to recognize the blessings yet to come. It is absolutely true that "none of us are guaranteed a particular future and none of us are promised more than the moment we are in." I am inspired by the wisdom and grace those words represent. I have two friends (Charlotte and Deirdre) who have children with chromosomal deletions. Each child has her own set of unique qualities. One child is six now and the other is four. Both are wonderful little lights. I will share your story with my friends and not only will you be in their prayers, you can also draw upon them as resources in the future should you need support from someone else who has had a similar experience.

    Lots of love,

  4. Katie/Darren -- once I rec'd the news from Heather (thank goodness for Facebook), I shut my office door and bowed my head in earnest prayer.

    Understand that you have friends and loved ones near and far, sending our comforts to you and invoking wisdom, expertise and skill to the physicians tending to young Matthew.

    Praises be to the Father -- "Who forgiveth all thine iniquities; who healeth all thy diseases." (Psalms 103:3)

    Ashley J.

  5. I don't know if I have any words to add to the wisdom, love, and support already given in these comments. But I did want to add a comment just to let you know how much I am thinking of you and your family. Your words are so eloquent and powerful, Katie. They speak the grace and wisdom of motherhood.

  6. Katie and Darren: I just wanted to let you know that my thoughts are with you at this time. I know how exhausting life is with a new little one, and the uncertainties surrounding this one must make it even more difficult. It sounds like you've got your heads in the right place, and I wish your entire family the very best, and continued strength. If we can do anything, please let us know.

    Mike Seay

  7. Amy sent me an e-mail saying that you need prayers. I will definitely keep you in my prayers and send all the well wishes possible.
    -Stephanie Law

  8. Darren and Katie,

    Your family, and Matthew are in my prayers. Wisdom be to the doctors to find out how to best care for Matthew. Peace be to you and Darren knowing that it's all in God's hands, and no matter the outcome, He is good. The power of prayer is mighty, and our God is mighty to save. I wanted to share this with you as a source of encouragement. http://brittmerrick.com/?p=307

    Hear my cry, O God; attend unto my prayer.
    From the end of the earth will I cry unto thee, when my heart is overwhelmed.
    Lead me to the rock that is higher than I; for thou hast been a shelter for me, and a strong tower from the enemy.
    I will abide in thy tabernacle for ever; I will trust in the covert of thy wings.
    Psalm 61: 1-4

    Please keep us posted on how we can be praying for Matthew.