Before we had left the NICU, the nurses had made sure we had scheduled our first pediatrician appointment and had also made a follow-up appointment with neurosurgery for Ally as well.
The first night was...the first night. In the NICU while we were there Ally rarely cried unless it was getting close to her care time and she was obviously getting hungry, she slept so well otherwise. I guess she was on her best behavior for the nursing staff, because she did NOT sleep well that night at all. Every time I would try to put her down in the crib, she would cry. I ended up sleeping with her most of the night on my chest (I did this quite often with Ben too), which the doctor the next day at our appointment was NOT happy about because it isn't safe. Not much has changed over the following weeks, she often during the night wants to be with me somehow to sleep, and since I also want to sleep I allow it (don't tell our pediatrician!). The doctor had suggested that maybe using the crib wasn't the best thing since it was so big and she was used to a smaller bed in the NICU. This was just as well, because trying to keep Ben in the 'big boy bed' did NOT go well the first night- he got up countless times and tried to climb the ladder to the top bunk where Luke was several times as well, so we ended up putting him to sleep in the crib and then moving him to the bed after he was asleep. Putting Ally in a bassinet solved 2 problems for us!
The NICU staff had told me to try to keep her on the same care time schedule she'd been on while in the NICU, at least for now. I did my best, but it was hard to want to wake her after finally getting her to sleep, so since then we've just kinda been winging it- feeding on demand and changing her whenever needed. She seems to be getting hungrier, because when she cries she usually wants to eat. I can remember with the boys feeding them and an hour later when they were fussy Russell would be holding them and would say, "He's rooting" and I would exclaim "I JUST fed him!" I feel like Ally's getting to that point with eating as well.
On the 20th we went to the neurosurgery follow-up first. This time we met with the actual surgeon and not one of his residents. I wasn't sure what to expect at this appointment. Before we went I was changing Ally's diaper and looked at her tiny body laying on the blanket in front of me. For the first time I started to get worried- without the layers of clothing and blankets, her head did seem a bit large for her scrawny body. So sitting in the doctor's office I was concerned for the first time about what the doctor would have to say.
Some friends of ours have 2 boys, both of whom have had surgery on their hands and feet around the age of 1. Their youngest just had this done a few days ago and she posted before and after pics in the hospital on facebook. Both times I wondered how hard it must be to watch such a young child go into surgery alone, and then I looked at my tiny girl. She might need a shunt, which would mean cutting into my baby's head, through her skull, into her brain, put in a tube that would be run under her skin down her neck, over her collarbone, and into the chest cavity, where there would also be a small incision in the chest to 'catch' the tubing. Although shunt surgery is fairly routine, doesn't take long, and recovery is not terrible, it doesn't mean that it will be easy to watch.
The neurosurgeon came in and measured Ally's head. We discussed briefly her diagnosis of Dandy-Walker and how she had had a head ultrasound at 1 day old in the NICU, but we had not been present for it and not spoken to anyone in neurosurgery about it, but since nothing had come of it thus far it obviously didn't show anything alarming at the time. Then he was quiet for a few minutes, clicking around on the computer. I sat there quietly, wondering what he was doing and why he wasn't saying anything to me. I wondered what he was seeing on the sonogram pictures (that was what I was assuming he was looking at, along with perhaps all the notes from MFM and the NICU) and was getting increasingly paranoid about what he was about to tell me.
He finally finished with the computer and gave me the verdict. Her head size was within the normal range for her age and gender. He could definitely see the Dandy-Walker gap that had been seen in countless sonograms in utero; however, he would not consider her to technically have hydrocephalus at this point. Not to say that it couldn't develop over time, but for now no shunt would be necessary and we would just need to continue to follow up with neurosurgery to watch it, and hopefully over time those follow up appointments would become less and less frequent. He scheduled Ally to return in 2 weeks, and also scheduled another head sonogram to be done before this appointment in order to analyze and compare them. We are not out of the woods yet (and may never be, because hydrocephalus could develop at any point, as we discussed- it could take a lot of time for the fluid to build up to a dangerous level) but for now he is not concerned. I was so relieved! He then asked me what I did, and I told him I taught high school math. He said it sounded like I really knew what I was talking about, and I told him I'd just done a lot of research and reading. Another demonstration of my new ability to advocate for my child.
That afternoon we went to the pediatrician for a follow-up on the follow-up. The appointment went great, we were able to fill in the pediatrician on the good news that the neurosurgeon told us earlier. The most exciting thing, however, was when we weighed Ally. At the appointment last week, she weighed 4 lbs. 7.5 oz. I told the nurse as I went to put her on the scale that I was hoping she had broken 5 lbs but I wasn't getting my hopes up. But my hungry girl not only met my goal, she beat it- 5 lbs, 2 oz! She gained 10.5 oz. in 8 days- more than an ounce a day! I was ecstatic! Part of this may be due to the fact that she still mostly takes pumped breastmilk and it is being fortified with some formula. The NICU staff started doing this to take the 20 calories in 2 oz. of breastmilk up to 22 calories. While it doesn't seem to be that significant, it appears to be making a huge difference! I'm hoping to get to 6 lbs. by her next appointment and with the way she's growing she'll be out of preemie clothes and diapers pretty soon!
Prayers would be very much appreciated for our family. Ally's early arrival has thrown all our family off quite a bit since not all of our affairs were in the order we would have liked them to be and we are all scrambling to adjust, especially now that Ally is home. I will be off until April 9th and then we will have to readjust to a new normal for 2 months. Thanks so much for all your love and support to this point, and your continued interest in our girl.
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