Today is AJ's due date. In many ways, it is great to be at this date. When everything started back on June 24, we dreamed of reaching this day as a family of four. Also, I no longer have to deal with the daily reminders of knowing that I should have still been pregnant. The hard part is accepting that AJ is still not ready to be home with us. In our minds, we had set this date as a target date for when this ordeal (or at least the hospital portion) would be behind us. We are reminded, yet again, that AJ is setting the timeline. We keep telling him, however, that his developmental clock has officially started ticking. It is from this adjusted date that he will be evaluated for milestones for the next 2 years, instead of from his actual birthdate.
Last week we reached a point where we could finally pick him up whenever we want, without having to call a nurse or unhook him from anything. It is great to be able to comfort him if he is upset or hold him just because we feel like it. From an emotional standpoint, we realized how much we have needed to be able to do that. Like JD said, being able to cuddle with a baby is the reward for the hard parts of having a baby. He weighs 8 lbs, 5 ounces now. Here is one picture where one of our favorite nurses did his hair...JD didn't approve:
For the past few weeks, JD and I have been looking forward to taking KD to the UW Homecoming parade. We would like to make this a family tradition and we looked at it as one of the last times to enjoy KD as an only child. I proved that I am not quite ready to be in public due to my impatience with the lack of parade crowd etiquette. KD, however, loved every minute of it. After the passing of any cheerleader or band, she would sign for and say "more."
My mom took the train here on Saturday. I spent a whole lot of time thinking about what she will be doing for us and absolutely no time thinking about what we should do for her. So on my way to the train station, I hastily picked up her favorite candy bar, a Salted Nut Roll, (very thoughtful) only to be reminded that she had undergone minor oral surgery only two days before (not so thoughtful) so I ate it myself (also not very thoughtful).
Since then, she has been helping out a ton with KD and things around the house. She's had dinner ready every night when we get home from work which is a such a nice treat and it allows us to get to the hospital a little earlier in the evening.
The only thing keeping AJ from coming home is feeding. From an oxygen standpoint, he is doing very well. They stopped monitoring his oxygen saturation a few days ago and that felt like they were taking away a safety net. I miss not being able so see an actual number on the screen to assess him but realize we won't have that luxury at home either. From a feeding standpoint, he needs to be taking 75 - 80% of his feedings by mouth every day for 3 days before they will remove the NG tube. On Wednesday, we were approached by his care team and were told that if he didn't improve in a week's time, they will plan to have a G tube (i.e. feeding tube) placed surgically and then send him home to work on oral feeds. This news was quite upsetting since I thought for sure that would be one complication we would avoid. They explained that due to his chronic lung disease, he doesn't have the energy reserve to be able to finish a full feeding. It was a reminder that even though he looks like a very healthy baby, that he still has issues of prematurity. Anyways, his nurse saw how upset I was by this news and took it upon herself to have a little talk with AJ about doing a better job at feeding and for the last two days, he has increased from less than 40% to between 65 and 70%.
Here she is coaxing AJ to open his mouth and accept the bottle, even though he was too tired to even open his eyes.
Otherwise we will head into another typical weekend where we split time between KD at home and AJ at the hospital. They told us to bring in a carseat this weekend so that they can complete AJ's carseat test (he has to tolerate being in there for at least 15 minutes without showing signs of oxygen desaturation). Maybe that is a sign that we will be leaving soon. Turns out the diploma that was brought out two weeks ago was a misleading because one of our favorite nurses was going on maternity leave and wanted to make sure that she was able to sign it.
Have a nice weekend.
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