37 Weeks

Yikes, I am so sorry that it has been 5 weeks since we've sent an update. We received an ultimatum from friends that they will update their blog as soon as we update ours. Since KD is a flower girl in their wedding next summer, we thought we had better keep up our end of the deal (sorry for the delay RH and ZM#5).

I won't burden you with the details of the emotions we've been experiencing but this continues to be a very difficult time and I am embarrassed to admit that I haven't been handling it with as much grace as I would have hoped. JD, as usual, has been handling things much better and continues to be the rock in our family.

We've started referring to ATD as AJ because, as JD jokes, the J in his middle name (Torbjorn) is silent. He is nearly 8 weeks old and doing really well. He has been out of the isolette and in a crib since September 2 when he started to regulate his own temperature. He weighs 6 lbs, 10 ounces and the nurses actually call him one of their chunky babies. For about a week now, they've been trying to introduce bottle feeds and I've been able to nurse once a day if he has enough energy for it. Before they will consider sending him home, he will need to take every feeding by mouth and right now he takes a bottle about 4 out of the 8 feeds a day and manages to drink about 1/3 to 1/2 of the total volume before tuckering out.

He continues to struggle with his breathing. This has been the hardest thing to deal with the past few weeks. He was weaned off of CPAP 2.5 weeks ago and has been receiving a small amount of oxygen through a nasal cannula. Here are some before and after pictures. AJ has been so much more comfortable with the cannula instead of CPAP.

BEFORE

AFTER

There is a condition called bronchpulmonary dysplasia (BPD) that is a form of chronic lung disease that affects premature babies and ranges in severity from mild to severe. The good news is that babies continue to grow new and healthy lung tissue up to 7 years of age so over time, lungs get stronger. One Sunday afternoon, JD and I sat with the neonatologist and pediatric hospitalist while they discussed the NICU's recently adopted protocol (as of August 1, 2011) to try to prevent or minimize BPD. This new protocol requires a baby's oxygen saturation to be maintained between 88 and 95%. AJ seemed to spend most of the time outside of that range which kept the nurses busy responding to the alarms and adjusting the settings. They joked that he just wanted to make sure that he got all the attention in the NICU but they knew that values outside of the appropriate range can have consequences on all organ systems. If it gets too low, AJ doesn't get the oxygen delivered to essential areas of his body. If it gets too high, it releases free radicals that can cause multiple problems such as retinopathy of prematurity, a condition that can result in blindness. From a professional standpoint it was very interesting to be involved in a discussion about hospital policy and protocols but from a personal standpoint, it left us feeling raw realizing they were talking about our son. My big question for the neonatologist was when he would make the absolute diagnosis of BPD. His response was if AJ is on oxygen at 36 weeks or not. Hearing this at 33 weeks and having to wait another 3 weeks for a definitive answer was not what this impatient mom wanted to hear so I would casually ask different residents or neonatologists the same question. And it seemed that every time, that same neonatologist would poke his head in and tell me the same thing (with a slight roll of his eyes). Last week when AJ reached 36 weeks, I had a chance to ask the hospitalist, who has extensive experience with BPD, about AJ's status. I thought that since he was off CPAP at 35 weeks that he would avoid the diagnosis even though, technically, he was still receiving oxygen through the cannula. His response was that the 36 week mark didn't matter since he has had such a prolonged oxygen requirement- basically indicating that he will be affected by this lung disease no matter what and that the next 2-3 years will be difficult in our house. He has also been preparing us that AJ may come home on oxygen. This week, they tried him off of the cannula but after an hour, AJ's oxygen saturations decreased and his work of breathing increased. It was a good reminder that this is AJ's timeline, not ours. They will try again in another week or two.

AJ has had two eye exams to look for retinopathy and so far they have come back normal. They will check that again in 2 weeks. He has frequent visits with Occupational and Physical therapy and has a speech pathologist following him so he certainly gets a lot of attention. He has been in the NICU longer than any other babies.

KD is doing well. She has been a bit sick the past few weeks with an ear infection and a secondary upper respiratory infection. That has resulted in a visit to urgent care and two visits to her pediatrician. I hope that she is getting these out of her system before her brother comes home.

No one ever talks about discharge dates, my guess is another 2-3 weeks minimum. I will try to do a better job of posting updates but for now, this ones all done (try to say in as cute as a tone as KD does below):

It is even cuter to hear her say it after a nap when she says "all done nigh nigh." She is an incredibly sweet little girl and is very into babies right now:

Here are a couple more pictures of AJ and his crib:

Adoring Dad

Handsome boy

Hope you are all doing well and enjoying your fall. Go Badgers!