Oh, the 2nd week of Hawk's life - phew!!! Now that he is 5 weeks old, perhaps I can think back on it - three weeks ago - and not feel too personally the intensity of the stress and exhaustion. After a routine weight check at the pediatrician's office when he was five days old, we were recommended to take him immediately to the pediatric unit at the hospital in Asheville. He had lost a pound and a half since birth and had a high bilirubin number (jaundice). As quickly as we could we left the Dr, went home and packed a week's worth of clothing, and said good-bye to Jaja, Timo and Mattias. It was a scary, confusing day. We didn't understand what was going on with Hawk's little body; we didn't know what to expect at the hospital; and we didn't want to leave our two older boys for days on end. Most of the hour's drive to the hospital I was frantically calling/texting our family and trying to take deep breaths to calm down.
When we arrived at the hospital we immediately walked right into our room (already assigned) and the nurses got to work settling us in. They were calm and friendly. Thankfully Hawk was pretty subdued and cooperative (we learned that high bilirubin often makes babies lethargic). He started on the UV light therapy bed that afternoon. It was SO hard to have him on that bed 24 hrs a day, which meant that we couldn't hold him (unless he was wrapped in the UV blankets, and then only for brief periods) or try to nurse him. The pediatric hospitalist and the feeding team (lactaction consultant and nutritionist) agreed that we needed to feed him with a bottle rather than nursing him, as it was clear that he hadn't been nursing properly and able to get enough milk, most likely because of the high palate in his mouth (fortunately not a cleft palate). However we were very thankful that he didn't have to be admitted to the NICU but just to a standard room, where Jim and I could also stay and sleep.
The priority while we were there was to get his bilirubin numbers down and get him eating enough that he would gain weight (and eat the appropriate amount at each feeding for his weight). It was a slow process on both accounts. He took to the bottle well (which meant I was spending a lot of time every day and night pumping milk, and with the stress my supply dwindled) but he was so tiny that he could only take small amounts at a time.
Meanwhile - and here was the unexpected good fortune of returning to the hospital - an array of doctors and specialists came to see Hawk every day, to assess his different physical needs: geneticist; pediatric orthopedic; physical therapist; occupational therapist; lactation consultant; nutritionist; and pediatrician. There was also a case manager from the hospital to help us understand the process and help us with health insurance and paperwork. Every morning the team of doctors and residents would also visit during their rounds. Every day was full and exhausting - and yet, we were very grateful. When he was born we knew Hawk would need extra care and eventually need to see all those specialists, but we didn't know
when or how the process would get started. For one, we thought we'd have to wait several months before seeing the geneticist, but because we were back in the hospital, we saw him right away and started on the process of bloodwork to try and determine if he has an underlying condition that has caused the different physical problems in his extremities. To a person, the specialists were kind, gentle, patient, and willing to spend time with us answering questions (sometimes the same ones over and over).
From the geneticist and orthopedic we learned that Hawk's tightness is called "contractures", which means that in the womb he wasn't moving enough (the reason behind it is what we are still waiting on from genetic testing) and so he didn't develop his joints, tendons, and muscles properly. Starting
now he needs therapy to help relax the contractures and gain that range of motion; to what extent that will be successful long-term we don't know - though already in the last three weeks he has improved, especially in his arms and neck. Hawk also had x-rays that revealed a dislocated left hip and vertical talus (ankle/heel malformation) in both feet. Learning that is what has led us already to start the corrective casts on his feet. We have to wait until at least 1 year old before any correction to his hip. His hands have what is called 'ulnar deviation' so it is a priority to get therapy to stretch the hands and develop them properly; it is uncertain what kind of facility he will have with his thumbs.
We had never bottle fed any of the three older children before, so this was a learning experience for both Jim and I!!
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| Carolyn, occupational therapist; fitting some soft splints on Hawk's hands to help stretch them out |
Another wonderful thing of being in the hospital was the support that we received. We had visitors every day and more delicious food than we were able to eat while there!! (Which was good because boy was that hospital food terrible.)
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| Darryl (pastor at the church we attend) and Blake visited us one morning and brought us donuts and lunch from Trader Joe's |
The best visitor was Grandpa!!!! It was a
huge relief to have Dad drive out for a few days. He visited us in the hospital before going to our house in Sylva.
After nearly four days, Hawk's bilirubin was back to normal and he was drinking enough milk from the bottle that he had gained some ounces and we were released to go home. It was great to see him looking a bit more alert! One of the conditions for going home was that he have an NG tube (feeding tube) inserted, to pump in additional milk if he did not drink enough by bottle. Thankfully, after four days at home, we only needed to use it twice and he continued to eat more every day, so the pediatrician took it out at his 2 week appointment.
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| Two very attentive, gentle older brothers |
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| A quiet moment with Grandpa |
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| Still such a tiny squirt! |
Ten days old! Grandpa headed home again, while Jaja stayed on another week.
