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.

A Lot of Progress in 10 Days of Life

ATD has been a busy little boy during his first 10 days of life and we are feeling incredibly thankful for how well he is doing. He is proving to be a strong and resilient little guy.

Here is an update on those issues we wrote about in the last post:

1) Premature lungs: We walked into ATD's room last Saturday afternoon to a team surrounding his isolette. We heard them say something about calling family members and then they turned around to see us walking in. It turned out to be really exciting news. They were taking out his ET tube and he was graduating to a nasal cannula CPAP device. We heard him cry for the 1st time since delivery. Since JD's research subjects are usually on CPAP, he was all over the terminology and talking business with the respiratory therapists in the room. The nasal prongs are very long; they are placed in the nostrils and then travel all the way down to the back of the throat. They had some difficulty getting them placed initially but after the 2nd try it worked. That felt like a huge milestone to us and he has done pretty well with breathing since then. One of the parameters they watch is something called the fraction of inspired oxygen (FiO2) which measures the percent of inhaled air that is oxygen. Room air is 21%. For the first few days after he was extubated, ATD would stay between 22 and 26% and we were all very pleased with that. On Tuesday morning when I got to his room, it was 43% so that was quite alarming. The nurse hadn't had him before so her response was that she didn't know what his baseline was. Because my emotions are hanging by a thread these days, I was immediately irrational and began to question her competence (in my head only, I promise I'm not that rude). The medical team came in to round on him and the attending physician used it as a teaching moment to explain that approximately 10-14 days after delivery, the honeymoon phase with the benefits of the steroids and surfactant begins to wear off and babies have to work a bit harder to breathe. At the same time this discussion was taking place, the nurse changed out his nasal prongs and the FiO2 was decreased all the way down to 23%, at which point the nurse instantly became my best friend. The fellow respectfully interrupted the attending physician, nodded to the screen and the differential diagnosis was that the cannula needed replacing (they are replaced 2-3 times a day). Today he is in the 30s again but at least this time I was prepared to see higher values knowing a bit more about the post-honeymoon phase. He will stay on the nasal CPAP until 32-34 weeks gestation, even if he does start consistently breathing fine on room air until then. The fellow described yesterday that there is no reason to pull it out and force his lungs to work any harder than they have to.

2) Infection: They are no longer monitoring ATD for infection so that is considered a stable issue. On Saturday night, the IV from his head was removed so with that gone and the ET tube out, we had a pretty good view of his little face. He lost 2 ounces from the removal of the tubing and the massive amounts of tape used to hold everything in place. The nurse even washed his hair a little on Saturday night which pleased JD immensely. He is closely monitoring to make sure that ATD's hair doesn't go past his ears. Clearly, ATD will have a hair cut before KD ever will.

3) Feeding: This is the area with the most change over the past week. They started by increasing the volume of breast milk received every 3 hours from 2mL, to 4mL, and now he receives 23mL. We are so pleased that he is tolerating these feedings since they say that is usually the rate limiting step to going home. Yesterday they started to fortify the milk to 22 kcal/mL (milk is 20kcal/mL) and today they will increase to 24 kcal/mL. The plan is to monitor to see if he tolerates the higher caloric density and if so, shut off the IV TPN and try to increase total volume to a goal of 28 mL. He is fed through an oral gastric (OG) tube which goes from his mouth to his stomach. It will be great to have the IV discontinued and the little PICC line removed from his arm. Then he will only be connected by the CPAP, OG tube, EKG electrodes, and pulse oximeter. Last night we were here when they weighed him and he was 1515 grams or 3 lbs, 5 ounces so he officially reached his birth weight in less than 2 weeks which is usually the average time frame. This may fluctuate again with the discontinuation of the TPN but we were still excited. He never lost 10% of his birth weight, I am so impressed with the plan they have had in place for him to keep him well nourished. Tonight he started to spit up a little with the feedings so that has us a little anxious. The nurse explained that the CPAP delivers extra air to the stomach and the OG tube prevents the esophageal sphincter from closing completely so it is very common for those babies to spit up occasionally. We will be watching that closely.

4) Temperature regulation: A significant part of the update on ATD's temp regulation is due to changes in #5. ATD was outfitted in his first onesie on Monday. Since the bili lights are off, he no longer has to have the majority of his skin showing so clothing is now an option. They have preemie clothes here that former NICU families have donated. He has been able to wear sleepers the past few days and he actually fills them out pretty well, especially length-wise. He is also able to be swaddled which helps with temperature regulation and gentle containment to keep those arms and legs from using up too much energy. He no longer has the temperature probe on him and they are slowly decreasing the temperature in his isolate.

ATD Fully Clothed

5) Bilirubin: On Monday the bili lights were removed from ATD's room and they are no longer monitoring his bilirubin as aggressively. It is checked every 3-4 days now. Apparently he is old enough to handle a little higher bilirubin level and since he is now filling his diaper with both #1 and #2's, that is helping his body clear the excess. His facial bruising is so much better now, all that remains are two small black eyes. I'm hoping those are the last black eyes he will ever have in his lifetime but perhaps that is a lofty goal considering he is a boy and has two clumsy parents.

6) Hemorrhage: During Tuesday morning rounds, they discussed the brain hemorrhage risk again and said that a head ultrasound had been ordered for that morning. They promised to give results as soon as possible but told me that I wouldn't hear anything until later in the day. About 5 minutes later, the resident came back to say they had already done the scan before any of them came in that morning and everything looked normal. That was awesome news. They may decide to check again in a month but the fellow explained to me yesterday that they don't routinely do a second one.

7) Personal Hygiene: Last night we were able to help give ATD his first sponge bath. His umbilical cord is still healing so a full bath won't be an option for another week or so. Either way, it was pretty special to be able to help with that and he tolerated it pretty well from a temperature and oxygen standpoint. From a general satisfaction standpoint, not so much. He cried and squirmed quite a bit but quickly found some comfort with a tiny pacifier that they encourage preemies to suck on to start to build some endurance for sucking and swallowing. We quickly learned why there are "positioning" instructions for boys in their diapers. Before the bath, the nurse helped us get some footprints made.

All Inked Up

Tiny Foot

8) Therapy for Parents: On Sunday, I was allowed to do kangaroo care with ATD and hold him for the first time. This was an incredibly special time for me. We are allowed to do that once a day except on bath days so to limit too much excitement. I will usually feed him during k-care which means I hold a syringe and push 1 mL of milk every minute until it is all gone (see picture below). Last night after his bath, the nurse wrapped him up like a burrito and I got to hold him like that and feed him. Today is a rest day and he has stayed in his isolette all day since his oxygen requirement has gone up slightly.

Syringe Feeding and Cuddle Time (Thanks for the

homemade blanket, ie-Chacho 2, ACL)

Yesterday when the fellow came to visit, I tried to probe for some reassurance that ATD is on the right track. As I alluded to in earlier post, I prefer to have a slightly inflated progress report. All she could offer as a reassurance is that "he is doing as well as we would expect." Hmmph. Then, last night, my OB was on call so she came up to check in and she knew my language. She said he looks like he is doing "really great" and that we should be really happy with his progress so far. In addition, the attending on call this week is the same attending who was in the room when he was born and she seemed quite confident in saying that he is doing "very well" and that he is "following the textbook" in terms of meeting milestones. She cautioned me not to expect progress every day, however. Either way, that was very encouraging to hear.

It has been really great to spend time with KD the past week since I've been home. She is so much fun right now and talking up a storm. Every time she wakes up from a nap or sleep, she takes roll call - "Mommy?, Daddy? Puppy?" as if she isn't quite sure who is actually in the house. On Sunday afternoon, the three of us went to the pool and she loved it. My mom left on Sunday also so we've been adjusting to having to remember to do things around the house like the laundry and general home maintenance.

Pool Time

We continue to feel so very fortunate for ATD's status. We still have a number of weeks before our family will be under one roof but we are fully aware that things could be so much worse than they are.