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?
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!!