I Still Live with My Parents

This onesie always makes us laugh. Even though it has been a long time since my last post, yes, AJ is still living at home with us. I am in between a pumping and a feeding session so I don't have much time to fill you in on all the details of our lives the past 6 weeks. Having our family at home and under one roof has been wonderful. We don't miss our car trips to and from Meriter. I had to go there with AJ a week ago for a lactation appointment and it was the first time since leaving on Oct 26. We snuck up to the NICU to say hi and one of our favorite nurses was working so it was nice to see her. You can imagine how surreal it was to walk in those halls again; it was impossible to keep my eyes from tearing up.

AJ is an incredibly sweet little boy and KD is really good around him. She always gets a smile on her face when she sees him and yesterday she wanted to hold his hand. We have designated his feet as her special place to kiss and touch but her curious mind and hands often reach for more. We try to do our best to keep a pretty wide distance between the two of them. KD has had no less than four colds + one ear infection since we got home. We were able to keep AJ in the clear for all but the last one and now he officially has his first cold.

Something I haven't explained before is that AJ qualifies for five monthly injections of a drug called Synagis. It is an antibody that fights against respiratory syncytial virus (RSV) which all babies get between the ages of 0-2 but preemies frequently end up being hospitalized for it. AJ qualified automatically since he was born before 32 weeks but he also qualifies because of his lung disease. We are thankful that he has received two injections already before the RSV season officially hits Wisconsin. The medication and administration fees are quite expensive; each dose is approximately $1200 so we continue to be quite a drain on the healthcare system and our insurance.

I have been off work since AJ came home and I return to work on December 8. I have been thankful for this time off to adjust to our new routine. It hasn't been the sort of leave that I had with KD where there was time to clean closets and make meals every night. Instead it feels like we are chasing after some sort of appointment nearly every day (planned and unplanned and even some Saturdays) and the rest of the time is spent either pumping or begging AJ to eat. Feedings continue to be a struggle and they are a huge source of anxiety for JD and me. He is still very tired and his motivation to eat is very low. Rarely does he wake up and cue to be fed. We are still on an every 3 hour feeding schedule; our lives revolve around the times 3am, 6am, 9am, 12pm, 3pm, 6pm, 9pm and midnight. A feeding takes about 60-90 minutes so that leaves about 90 minutes to either sleep, pump, or clean bottles before the next feed. AJ would probably sleep through the night if we let him which would be a dream come true for a full term baby but for him, it would be pure negligence on our part.

He qualifies for services in a program called "Birth to 3" which is offered to all families who have a child that was in the NICU or that has developmental delays. It is quite an impressive program. Three people came to do an assessment on him a few weeks ago. They evaluated him for motor, cognitive, and feeding function. They returned today to go over their evaluation and AJ is doing well in the motor and cognitive areas (when adjusted for his prematurity) but he is atypical when it comes to feeding. So now we will have a speech therapist come to our house regularly to help us. In the grand scheme of things, we are so incredibly fortunate that this seems to be his only issue but at the same time, we can't help but look forward to the days when he is eating us out of house and home and we can look back on this time and laugh. It is hard to describe the despair we have both felt when feeds don't go well. His nutrition is not only essential for his overall development but also for growing new and healthy lung tissue. We have been trying to troubleshoot every angle - changing the milk fortifier, increasing and adding reflux medications, removing dairy from my diet (just in time for the Holidays when everything worth eating has dairy in it...), etc.

On to some happy news, AJ has started to smile. I think it took him some time to recognize us because one of us is usually wearing a mask to try to keep germs away from him. JD and my immune systems aren't that great right now with our lack of sleep.

We are excited for the Holidays coming up. My brother and family and my parents will all be here to celebrate. It will probably be the last time we see my brother and his family before they move to Germany. We will be missing JD's sister and her family who moved to Belgium last summer. Both sets of cousins are soon to be out of the country.

I'll close with a few more pictures to lighten up the mood a little. Here is KD looking way too old:

Here is one of AJ wearing a onesie from my cousin MLV. Doesn't he look like a man who just got home from work? I picture a briefcase sitting right next to him.

Here is one of our favorite videos. Krista is talking up a storm these days. In this video, I am peeling an orange for her which for the longest time she either called a pumpkin or a ball. I'll let you judge who delivers the most compelling argument. Perhaps she is following in MLV's path and will become a lawyer one day.

The New Yorker published an article on premature babies that resonated with us. While we are so fortunate that AJ stayed in utero until 29 weeks, we faced the same choices and some of the same experiences that are outlined in this article. It made us feel fortunate that our outcome has been so positive:

http://www.newyorker.com/reporting/2011/10/24/111024fa_fact_groopman

I will try to post again soon. Thank you sincerely for your prayers, emails, letters, etc. We are incredibly thankful for all the support we have had. We are also feeling very fortunate to be a family of four (+dog) this Holiday Season.

Hope you are all doing well!!

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?

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!

1 Day Shy of 32 Weeks Gestational Age

Hi Everyone,

ATD has been one of the last babies seen on rounds lately which is a sign that he isn't as critical. This past week he has had more difficulty with breathing. Hearing the team talk specifically about his "lung disease" is quite hard to hear but there is a good chance he will grow out of it in a couple of years. They joked today that they rarely send kids to kindergarten with nasal CPAP. My response was: "at least we have a timeline."

He is still tolerating feeds very well so we are really thankful for that. His lung development and ability to grow new and healthy lung tissue is dependent on his nutrition. He now weighs 3 pounds, 10 ounces - up 5 ounces from birth. We've been able to hold him nearly every day and we have helped with baths. Here is a video from last night's bath:

One of his overnight nurses loves giving babies baths so she is the one who always gets a bath scheduled into his routine. She looks just like my good friend JT and she calls him "Mister" all the time (listen for it in the clip). She is one of our favorites.

He still has some bruising around his eyes. As JD said, he is preparing for football season.

Last Friday, KD came up to meet her brother. Here is some footage from that:

My cousin in Norway sent some statistics on the name Torbjorn that are really fun to read:

• It is an old name, over 1000 years, so in the Viking age. It is listed in the top 10 in old writings
• Tor was the Nordic God for thunder because he caused thunder with his hammer. Quite appropriate given that JD and I both have some loyalty to the NDSU Bison who's mascot is named "Thundar"
• Bjorn (actually Bjørn in Norway) means "Bear"
• The meaning is "the very strong one" or "the brave and strong one." As my cousin said, it suits our little fighter.
• In Norway today, 7360 males have Torbjorn as their first name but it is unknown how many have it as their middle name.

I will go back to work next week and work until ATD is ready to come home. I hope you all have a nice weekend and that you are enjoying the last few days of August.