Home Since Wednesday, Oct 26

Instead of getting you up to speed on the medical events that happened over the past week, what really matters is that after 125 days exactly, we are all home. Our friends made sure that our non-traditional bringing home baby celebration was still just as special.

We didn't find out that AJ's discharge was even a possibility until Tuesday night. In order to go home, he needed to pass that carseat test and gain weight. He did both so they ushered us out of the NICU early on Wednesday afternoon. KD has been an adorable older sister so far and hasn't seemed too upset with the change in the household. Summit has also handled the change well so far. She wasn't shaken by the new baby but wasn't very impressed with the big sister gift we brought home for KD:

We are still developing systems for our new routine of feeding AJ every 3 hours - no exceptions. He will have another weigh-in tomorrow to see if we have been able to maintain his weight since discharge. He continues to be very tired and so it is difficult for us to get him to wake up and be interested in feeding. We keep telling ourselves to remember this time when he is a teenager and eating everything in the cupboards.

Words can't explain how grateful we have been for all your support and prayers.

Due Date

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.

One final picture. KD is definitely entering the toddler stage, here she looks far too old.

Have a nice weekend.

Look Ma, No Prongs

It has been an eventful week around here. AJ had his nasal cannula prongs removed on Monday afternoon and he hasn't looked back. This was a remarkable improvement since the last time they tried to take it away.

Here are some before and after images:

Nasal Prongs In

Nasal Prongs Out (and a very pronounced double chin)

The nurses keep correcting us when we refer to him as little, he is huge compared to where he was and compared to the other babies that he holds seniority over. They all comment on his double chin when they come in his room.

He has started to have more and more awake periods. Physical therapy came to work with him the other day and one of the nurses read the clinical note they left in his chart which said that he met two of their three criteria: 1) maintaining an alert state for 3 minutes; and 2) tolerating their handling of him. He doesn't meet criteria with the shaping of his shoulders. They want them to curve in to decrease the work effort of his lungs and he prefers to have them flat against the mattress. We were told that all NICU babies fail that one. We laughed at criteria #1 - not sure either of us would pass that one right now. He had his third eye exam yesterday and his eyes are maturing appropriately. They will do one more exam in two weeks before declaring victory.

Here is a picture where he found his thumb. Looks like he might be taking after his sister on that.

Not to be outdone by her brother's good news on the respiratory front, KD developed her own respiratory problems this week thanks to a very nasty and virulent form of croup going around. She has never had problems with wheezing but on Wednesday it kept getting worse and peaked with yet another trip to the urgent care on Wednesday night. The pediatrician gave her a ten minute trial of nebulized albuterol and said if it didn't work, then it was most definitely croup and would require steroids...5 days of steroids it is. We hope she starts to feel better very soon and that the virus is out of our house well before AJ comes home.

Hope you all have a great weekend.

Drumroll for Some Pomp and Circumstance

On Friday afternoon, JD, KD, and I went up to visit AJ together. Thanks to a cold, followed by an ear infection, followed by a secondary respiratory infection, it had been 4+ weeks since KD had seen her brother.

As we walked past the nurses' station, we saw a familiar activity taking place. When a baby is close to being sent home, nurses start coloring and signing the baby's NICU Diploma. They set it out early enough so that all the nurses that cared for that particular baby can write some well wishes. We always look at these diplomas longingly, dreaming of the day we might see one for AJ. We stopped in our tracks when we saw this:

A Good Sign

We still haven't heard any specifics about a discharge date so we were shocked to see a diploma started for our AJ. You can imagine the flood of emotions we felt upon seeing this.

AJ is 7 pounds, 6.9 ounces. His nurse today said that he doesn't even look like a preemie. I love hearing comments like that. He looks like a pretty big boy in this picture. One of the nurses found a swing that someone had donated to the NICU and set it up for him.

Big Enough for a Swing

Today was a busy day for AJ. I was there for his 9am and 12pm feeding. When we try to nurse, we always weigh AJ before and after to determine how much volume he has taken in. At 9am, he was quite sleepy so the before and after weights indicated a gain of 2 grams only (roughly equivalent to 2 mL and he is supposed to take in 62 mL for an entire feeding). So, not the best session but good practice. At 11:30, we gave him a bath and then he was wide awake and alert. Then at the noon feeding, he nursed 28 mL which was a personal best and drew cheers from the nurses. JD was there for the 3 pm feeding but AJ had just been given his 2 month vaccinations and was too tired to bottle feed so JD gave him his feeding through a syringe and his NG tube.

Here is AJ being held for the first time by one of his grandparents:

Nurses have been asking if I am in nesting mode. Unfortunately, I haven't truly experienced nesting with either pregnancy because of prolonged hospitalization. Thankfully, our good friends, RH and ZM#5, painted AJ's room while I was in the hospital and my parents put up this sport-themed border so that was one less nesting activity to be done.

Instead, my nesting looks more like this:

Just a short update for today but here is one more picture. KD doing her best to feed herself yogurt. Notice the spoon off to the side. Why use a spoon when both hands are so much easier to use?