Day 46 - Making Progress

This baby smiles so much

Today the doctor surprised us by popping in as we were getting ready to breastfeed Milo and with very little ado, removing his cannula. He seems to be doing quite well breathing without it. To be honest, it was on just a very little flow of regular air and sometimes it seemed like it hindered him more than helped especially when he would wiggle and get it out of position. We are so happy! We get to unplug his monitors to weigh him prior to and after breastfeeding (a very inaccurate measurement of the amount he eats that way) and now that he is off the cannula, for the first time since he was born, he is completely unattached to the bed/wall/breathing support.

He also spent the night with the lid off his isolette as a test to see if we can put him in a crib instead of an enclosed heated bed. He kept his temperature perfect and has been in the open isolette ever since. This makes it much easier to interact with him but harder to remember to wash our hands prior to any interaction and makes him more open to light and noise we make while in the room.

Sleeping in the open air

He is up to 4 feedings per day and has been slowly getting better at breastfeeding. He got nearly half his allotment last time he tried! If he can manage that four times a day (on either breast or bottle) he will graduate to the next level of 6 times per day and after that, he will graduate to eating whenever he wakes up and asks for it. Once he is doing that, it is only a couple of days before we head home. At this rate, we are looking at a week or two before we are released.

Day 44 - Waiting Game

Milo weighs 5lbs 3oz. He has been gaining about 2oz a day! Now we wait. He is working on overcoming his anemia however it is slow going and the doctor tells us he probably won't have completely overcome it even by the time they send us home. Since making red blood cells is slow work and he is growing so quickly and thus increasing his need for red blood cells at the same time his body is trying to create them. The caffeine they gave him helped him get through the worst of it (or so it would appear). He has another test on Thursday to see how his levels look. Even a slight increase in his numbers will have a huge effect on his energy level. For now, he has more energy every day and has been cleared to try to oral feedings 3-4 times a day. Considering he eats 8 times a day, we are pretty excited to be "halfway" there (he hasn't yet been awake for 4 feeds a day but we have permission to try as soon as he is. He usually is awake for 3 of them).

Better not try to steal my baby, he's wearing a security anklet

We had our obligatory discharge class on Wednesday. We learned how to position him to sleep, how to use his car seat properly and other tips they have to tell us before they send us home just to mark off their list that they told us (stuff that should be common sense but you never know like don't shake your baby and don't leave the baby in the car). We also had a meeting with Milo's doctor which was much more individualized. She told us that based on his progress, she expects him to be home between 37 and 40 weeks (he's 35 weeks as of Wednesday). Though it was good to have a chance to ask all our questions, she stressed me out by telling us a lot of worst case scenarios about his hearing, lungs, future health etc. She really could have done a better job to reassure us since Milo is not exhibiting any problem behavior yet. We understand that there are a lot of things Milo will have a higher risk of encountering because he was premature but boy was I more stressed after that meeting than before.

Sleeping, the #1 job we've assigned Milo

And I was stressed before the meeting anyway. I finally realized why I am so uncomfortable here. I thought it was because I didn't like the nurses looking over our shoulders all the time and being the expert on my baby even though we know him really well and are able to tell them things about his behavior. But it turns out what I really don't like is how every nurse has a different method and rules so I spend each shift learning how this particular nurse prefers we do things and then the next one comes in and tells me I'm doing it all wrong (they are never mean about it, but I am perhaps overly sensitive to doing things wrong). In any case, I will be so relieved to be home where Shelly and I are the experts in Milo's life and no one will be coming in and telling us we should hold him this way or that, feed him less because he's tired, not open his isolette ourselves because parents aren't allowed (despite the fact that about half the nurses encourage us to do it). These are all things we know and can figure out for ourselves with Milo's help. The nurses here are used to parents who just dropped in every now and then and are not very good at reading the baby's cues so it makes sense they would behave the way they do.

Of course he stopped smiling as soon as I pulled out my camera

Day 42 - Eye Can Go Home Soon?

Yesterday Milo weighed in at 4lbs 15oz. They weigh him every other day but I am confident today would mark his entrance into the 5lb club!

Today was the long dreaded follow-up eye exam. Milo was seeming to return to normal after the incident that caused us to find out he had anemia Monday morning but Shelly and I were both very worried that the eye exam would upset him like it did last time and set him back in his progress. He was scheduled for early this morning so I woke up and tucked my bed away so we would have room to move around and I could comfort him during the exam.

It was trippy to watch, they numbed his eyes and then levered them open one at a time with a tiny device. Meanwhile his nurse had him swaddled and held his head completely still and I tried to offer comfort the best I could by holding his feet. The hardest part to watch I think was when they put a tiny little instrument in next to his eye to move his eye into the proper position to see. These eye exams are done in a series and can sometimes take three or four but the Dr. doing the exam said his eyes are mature! She spent a couple extra seconds on each eye examining a different quadrant so we could be done with eye exams for good. Milo passed with flying color. It took about 10 minutes and he was less upset than he was the night before when we gave him a sponge bath. He was wide awake for a bit, had a really good restful period and was back to his normal self and ready to try nursing again in the afternoon. Looking back, it is kind of funny because I didn't even think to be worried about the results of his exam, I was preoccupied worry about his reaction to the exam.

We are settling into our routine here pretty well. The hardest part is feeding ourselves. We have a mini-fridge in our room that freezes everything and access to a communal fridge that works a bit better. We also have a microwave as our sole option for heating food and no garbage disposal (aka no good place to do dishes). Any time we are blindsided by the need for a meal we didn't pre-plan, we either order something from the cafeteria or have to venture out to get food. It is getting harder and harder to leave Milo. Even though the nurses always take good care of him, he is awake more and more and growing more likely to cry when he wants something. I worry that if we are not here, he may have to cry for a bit before anyone would notice.

Follow-up:
I fed him his bottle today. This marks his second venture into bottle-dom. He almost ate his entire feed! I think he had a couple ml left that he couldn't get out because it was the dregs of the bottle. We are so excited. He also gained 2.5 ounces since yesterday which puts him now at 5lbs 1oz. That is a huge weight gain and we attribute it to the fact that they aren't very good at measuring the amount of milk he gets at the boob so they fed him more than his allotment a couple of times.

Day 41 - Coffee Makes Me Loquacious

Summary
He's 4lbs 13ozs
No one else got sick from me
Milo took half a feeding via bottle
Milo got very tired from anemia
Milo breastfeed 8ml

No one else got the stomach flu, thank goodness, so I am claiming once and for all - FOOD POISONING. I never thought I would be so happy to have food poisoning but it meant my symptoms went away quickly and no one else was at risk for catching anything from me (most importantly, I didn't have to feel guilty for exposing Milo to something that could potentially be devastating to his little system).

Two nights ago, we mentioned to our night nurse (who by the way is so much cooler than our day nurse in terms of thinking Milo is doing well and ready to progress to the next step) that we were interested in trying to bottle feed him. If Milo had been full term, we would probably have committed to exclusively breastfeeding but since he is preterm and the bottle generally makes it easier for them to get full feeds, we are willing to give it a go to get home sooner.

The night nurse was totally into it and got us set up to bottle feed him immediately (we were testing the waters in a sort of "potentially soon" sort of way and were tickled she jumped at the chance). She explained this was just practice and we could probably expect him to eat 5-10 ml this way before getting tired. She showed us the technique (sitting him in our lap upright and on his side and introducing the nipple first before letting him get any milk to avoid shocking him). I took over and he bottle fed for about 20 minutes before falling asleep. Our nurse was very impressed as he had managed to eat 23 ml! More than half is full feed needs.

Old enough for dress-up

He was doing so well keeping his temperature up, his night nurse thought he was ready to test the waters out of his isolette! She wrapped him up the way he would be in a crib and let him sleep without the top closed (so no special heater) to see if he could keep his temperature where it would need to be to get him into a crib.

Later in the night he even woke up struggling to find a nipple indicating that he was ready to give it another go. I gave him his pacifier though as it was the middle of the night and we had been advised to only try breast or bottle feeding once per shift so as to not overdo it. He searched for a nipple for a while before giving in and taking his pacifier and falling asleep.

The next morning he had an episode where he had cluster desats. This means he was having trouble keeping his blood oxygenated, not just doing the normal dips babies do. We were really concerned that this was a sign of him getting sick but they did a blood test and it turns out he had a very low red blood cell count. Babies don't make red blood cells in the womb. What triggers the creation is when their count drops low enough after they have been born. This means all babies go through a period of anemia before their system kicks in and starts making the blood cells they need. In full term babies, this is easily done, in preemies it can be stressful on their systems and sometime they drop too low requiring a transfusion and delaying their own creation until they are little older. They have never mentioned this before but apparently anemia is a normal challenge for preemies to face eventually. Milo's blood tested just 2 points above what would require a transfusion.

That day he was really tired and pale all day (what you would expect from anyone with anemia) and our game plan was just to wait and see if he got stronger or would need the transfusion. Because he was so tired, they closed him back up in the isolette, backsliding on our earlier achievement of him keeping his temperature up well all night. After his first episode that morning, he was able to keep his oxygen levels up like normal and the only difference was his alertness level. Shelly and I were pretty disenchanted with our day nurse when she basically blamed us for overexerting him the day before and told us we should not do anything with him until he was stronger. She also brushed aside our comments about how he always does better with kangaroo care by saying, "because he is in a more upright position". As if that was what he benefited from when we held him skin to skin! (I brought this up with his night nurse asking if overexertion could cause anemia and she told us that it cannot and it was absolutely not us overexerting him that caused it). I know we did not tire him out because we watch his cues closely and even after we bottle fed him, he had so much energy rooting around for a nipple at his next feed. It wasn't until 12 hours later that he got exhausted. The day nurse was pretty out of line to imply that his breathing issues that morning were caused by us.

Cute baby helps me be more forgiving

So Milo spent the day recovering and resting and did well. He didn't root around as much when he got hungry and basically just slept and relaxed. He was a little pale but his breathing was back on track and it seemed like he might be able to overcome the anemia without a transfusion. We did some kangaroo care with our night nurse (her shift starts at 8 so Shelly held him first and I held him again at 11PM). And then at 5:00am he woke me up crying! The thing about Milo is that he just barely ever cries. He lets us know he is unhappy by wiggling and stiffening his arms and legs and turning red in the face but he only actually cries if he is getting one of his monitor tabs removed painfully or if his gas is bothering him. And when he does cry, it is one or two wails and then he calms down. Well, I was out of bed quick when I heard him crying and realized that he was upset because he was rooting around for a nipple! 5am is his feed time so he was hungry (even though his food was being given through his NG tube at the time, they give it over the course of an hour). I calmed him with a pacifier and was delighted that he had the energy to root around like that and such a strong desire to nurse that it made him cry. That is a great sign that he will be getting out of here soon.

Since he was so insistent this morning, we planned a breastfeeding session for his 11am feeding. We also got a lactation consultant to join us. Since we were reasonably sure he would actually get milk this time and not just "practice nurse", we weighed him before and after to see how much he took in. The lactation consultant expected him to get about 4 ml from the feeding. He did great, even though he was tired easily (it wasn't even the best he has done) and ended up getting 8 ml! We are so delighted that this kid is a natural eater. The nurses are all continually impressed (they keep trying to manage our expectations by telling us he is still developing and just practicing) and then they are surprised when he latches and eats.

The eating is the number 1 challenge that could make our stay here longer because he has to be able to take all his feeds orally and prove he can still gain weight before they let him come home. We know he will be done with his breathing support soon but until recently we also knew we may have a long learning curve ahead with the feeding. We are so happy he is ahead of the curve. The night nurse we like so much told us she wouldn't be surprised if he was out of here in a week or two!

We are excited to get him out of his isolette for better photo ops

Day 38 - No More Excitement Please

He's graduated to clothes!

Key Points:

• Milo is off CPAP
• Milo is in the special care nursery
• I think I got food poisoning
• Milo weighs 4lbs. 10 oz

They took Milo off of CPAP! On his 34 week date which was last Wednesday they decided he was ready to come off of CPAP. They thought he might be able to try sooner but they waited because if he failed, he would go back on CPAP for another five days but after 34 weeks, if he failed he would go onto a low flow cannula which is much more comfortable.  He did end up needing the cannula as he continued to have periodic episodes of not breathing very well. The nurses said they were going to watch him for a couple of days on the cannula to make sure he didn't need to go back on the CPAP and then he would be cleared for the special care nursery (that magical place where he will have his own room where Shelly and I can sleep over with him and never have to leave his side again!). They also warned us that there weren't any rooms available in the special care nursery at the moment and there was one baby ahead of us on the waiting list so that could affect our timing as well.

We headed home that night prepared to go to bed early to get a really good night's sleep. By 9:00pm we were just snuggling into bed for the night when our nurse called us. Surprise! Milo is being transferred to the special care nursery. We jumped out of bed and packed an overnight bag and headed to the nursery. It is wonderful here. The couch turns into a one person bed and they brought in a cot for me. We can have as many visitors as we want at one time instead of just two (meaning if Shelly was with Milo and a visitor came in the in the NICU, I had to step out for the duration!). Still no kids under 12 who are not siblings though, so Oliver and Noah will still have to wait to meet him.

The first night in the special care nursery, I slept very little. I woke up every couple of hours to pump and do Milo's cares (change his diaper and take his temperature, the nurse still has to feed him since he is still eating through a tube). In addition to that, my cot is pretty much the worst thing ever as it sags on either side of a hard metal bar in center. I put as many pillows and blankets under me as I could find which made it bearable but still caused me to have trouble falling back asleep. Shelly slept pretty well on her sofa pull out (though when I tried it for a nap the next day I did not find it much better). I also was on pretty high alert all night and woke constantly when his monitor beeped or he whimpered.

As you may imagine, the next morning I was exhausted but happy to have spent the night with my son for the first time ever. I had a bit of a stomach ache which I chalked up to not getting a good night's rest. I also had no appetite which persisted all day. I did some kangaroo care with Milo and then Shelly had him practice nurse again. He is doing great, giving us the signals that he wants to nurse and opening his mouth and latching. He can even suck a little bit (not enough to get milk but a good sign). In the middle of my nap later that day I got really cold even though I was under the covers. When I woke up, instead of feeling better for having slept, I felt groggy and still didn't have an appetite. When we went to the cafeteria and instead of getting hungry I felt nauseous we decided it might be prudent to go home until we knew what was wrong with me. When we got home, I got a low grade fever and began having symptoms of the stomach flu.

I was terrified that I had unwittingly exposed Milo to the flu as I had been in very close contact with him all day. Shelly and I did some research and in the end couldn't decide if my symptoms better fit stomach flu or food poisoning (I had eaten shrimp at the salad bar in the cafeteria the day before and we both desperately hoped it was food poisoning which is not contagious). After a rough night in and out of the bathroom, I felt much better the next day and my fever was gone. I also had my appetite back and was able to carefully eat again. We spent the day resting. Milo's nurses when we called reassured us that he was doing great and not showing any signs of being sick.

The next morning I felt back to normal and Shelly still didn't feel any signs of getting sick. At this point, all signs point to food poisoning (which I have actually never had before so this is a first). I suppose it could have been a 24 hour stomach bug too but I would expect Shelly to get anything contagious that I have since we share food and drink. We returned to the special care nursery. Milo is doing great. Still needing the low flow cannula but with some talk of when we are going to remove it. He is up to 4lbs 10 oz and he was dressed when we arrived! They are also talking about getting him out of the isolette and into a crib since he has been managing his body temperature well.

Our new room!

Our new room (from the other direction)

Our beautiful baby boy!

Day 33 - Keeping On

Temporary Cannula

I skipped a couple of days because there really was nothing to report. Milo is still on his CPAP until Wednesday when he will come off (and go onto a cannula instead if he still needs help which will be much nicer but is something they can only do once the baby is 34 weeks old or more). He is still in the NICU until his breathing is under control and he is gaining weight and handling his feeds well. He is up to 4 lbs 4 oz.

There are likewise, until today, not many good new photos because with the CPAP on, every photo looks pretty much the same. Today however, we had a new nurse practitioner who told us he could come off the CPAP and go onto a high flow cannula to practice nursing. We were very excited because a different nurse had told us we would have to wait until he was done with the CPAP. They put him on the cannula and he managed to latch several times and even sucked briefly before falling asleep. This was just practice so Shelly made sure she didn't have any milk available because he wouldn't be able to handle that yet.

We have gotten into a new pattern of holding him twice per day. One of us in the morning and one of us in the afternoon before returning home for the night. It is really nice to get so much time for him but it means we don't get much daylight to do anything else (we put off grocery shopping two days in a row). When we arrived this morning however, Milo was seeming a little sensitive to touch and had just been fussed with a bit by his nurses and physical therapist so we decided to forgo the morning hold and go shopping instead. It worked out really well and we both managed to hold him in the afternoon with the help of our nurse who changed his diaper as we traded off so I could continue to hold him longer.

Our biggest focus for Milo now is for him to learn how to breathe unassisted. We are also focusing on preparing the house for him to join us in the near future. We still need a few critical items from our registry. We will be ordering everything next week to make sure it arrives in time for us to set it up so if you have been meaning to help us out by buying something from the registry, now is a good time.

(In case any one is wondering... I managed to create several drops of milk recently! I am looking forward to having my chance to nurse Milo).

Video of Milo with the Hiccoughs 

Bonus photo of my home life now

Day 29 - The New Normal

We woke up today a little earlier than we should have based on what time we went to bed but we were just so excited to be home. We spent the morning catching up with Megan and Oliver and seeing how much Noah had grown (he can make eye contact for so long now and interact with us!) Then we headed out for lunch and coffee. Afterwards, we went to check in on Milo and get some quality skin-to-skin time with him. There is a big storm coming in tonight so we will probably head home before it gets darks just in case (the wind is supposed to be crazy). We are so lucky to have been transferred yesterday because if it had been a day later we may have had to worry about his flight interacting with the winds (passenger flights should be expecting some delays tonight in any case, I don't know how emergency flights would respond).

Milo is doing well, less spells but still needing the CPAP for today at least. The level of care here is so different and little strange to get used to. We were only here for four days before he transferred to Portland which is weird to think about. His CPAP hat seems much more comfortable here though (picture below) and there is the promise of the special care nursery when he comes off the CPAP meaning we can room in with him and start taking full responsibility for his care. The nurses here are great but the lactation consultant and the doctor we spoke to today seemed less on top of their game. They also were not very good at transferring Milo over for Shelly to hold him and it took a while for him to get settled. Also, the doctor decided that was the time he wanted to listen to Milo's lungs and asked to put him back on the bed! This is a huge deal to me because we have been told time and again that the transfer is the hardest part and we should limit them as much as possible, committing to hold him for at least an hour at a time if we are going to put him through the lift and hand off. The nurse either misheard or purposely didn't understand and left Milo on Shelly so when the doctor came back he just accepted it and listened to Milo while he was on top of Shelly. Milo is getting strong enough to handle this kind of nonsense though and the benefits of being home far outweigh the downsides.

The CPAP hats here don't squish his little face and he can open his eyes easier now!

Milo still tries to pull it off though whenever given the chance

Day 28 - Four Weeks Old

We were woken up late this morning by a phone call from an OHSU nurse. Any kind of call from them immediately makes us worry but this one was great news. They caught us totally off guard by telling us they were going to pay to fly Milo back to the Medford hospital... today! This very rarely happens as it is super expensive and insurance will not cover the cost of sending a baby to a facility with a lower level of care. However, OHSU had just filled up to the brim and they were juggling to find space for the babies who really needed the extra level of care. Another baby was flying to OHSU from Medford so they shipped Milo back on the return flight with Medford's staff after they dropped off the other baby.

Milo had his first eye exam this morning before he left Portland to check for ROP (an eye condition that affects premature babies). His results were totally normal - but it can develop over time so he has a follow-up in two weeks. He did not take kindly to his eye exam however and cried a lot, threw up a lot, and started having more trouble breathing for the next couple hours. They tell us it is not unusual for babies to respond that way. We know he is fine but it is too bad he is having breathing issues now because that means he has to stay on the CPAP for at least another couple day (he was having dips and spells periodically even before the eye exam).

As per grandma Judy's suggestion, we had prepared a thank you card and little bag of chocolates to give to the nurses before we left but we forgot to bring it to the hospital on our last trip there. The staff at the Ronald McDonald House was nice enough to say we could leave it with them and they would get it to the nurses. We brought all our stuff down to the car (leaving only the chocolates and thank you card addressed to the OHSU hospital staff that we were planning on handing off to the Ronald McDonald crew when they did the final check of our room during check-out). As we walked down the hall with all our stuff, one of the housekeeping staff saw us and asked if we were checking out. We said "yes, but we're not quite done yet" (possible language barrier) and she booked it straight down the hall to our room giving both Shelly and me an anxious feeling. Sure enough, after we loaded the car and headed back to our room, the chocolate was gone (but the card addressed to the OHSU Staff was still there). We would like to think that she did not understand and thought we had just abandoned the chocolate there. It makes sense that once a guest checks out, whichever housecleaning staff gets there first can have whatever is left behind. We were fairly upset for a bit though because it was specialty chocolate that we wanted the nurses to have.

Shelly put together a small gift box of goodies from the Ronald McDonald storage including some snacks and cookies instead and we left it with the card for the Ronald McDonald staff to take to the NICU.

The Thank You Card and Chocolates In Question

Once we came to terms with the lost chocolate, our road trip back was uneventful and very nice. It took us a lot longer to get on the road than we had expected just because we had to keep interrupting our work to pump (that made the road trip longer than usual too). Though longer than we are used to, it was all super easy and we were pretty happy the whole way. We ended up arriving at the Medford hospital around 12:30AM. We had a nice trip though and spent the drive listening to "The Male Brain" which was very interesting and gave us some insight into little boys that we may be able to apply when Milo is older. Milo had an uneventful flight as well and was all wrapped up and cozy when we arrived to check on him. We only stayed for a couple of minutes before returning home!

Suzanne and Megan and my mom put in a lot of work to make sure our side of the house was pristine when we arrived home. The kitchen counters were cleaner than I have ever seen them and there were clean sheets on our bed. Everything was soooo clean it was amazing! (Thank you so much!!!) We settled in, figured out the bed situation to accommodate our night time pump sessions and were asleep by 2AM.

Day 27 - Back on Track

He loves to touch his face

We woke up both feeling good as new this morning and spent the day at the hospital. The nurse pulled his PICC Line out in the early afternoon (a much easier process than putting it in) which was indicative of how well he is handling the fortified milk. The PICC Line was so tricky to put in, I am confident they waited until they were 100% he would be able to get all his food needs met through milk before taking it so they wouldn't risk needing to put it back in.

I held Milo for 2 and a half hours and then traded and Shelly held him until we came home. He is doing great although still needing his CPAP. They are experimenting by raising the pressure to see if it helps mitigate his spells. They are still unconcerned with these breathing troubles as he is still a tiny little guy and his lungs are still developing. Usually by 32-34 weeks they start working well on their own and we are only just to week 33 (tomorrow!)

Day 26 - The Thrilling Conclusion to the Fortifier Question

Thankfully, we both woke up today still feeling at full health. Add that to the majority of yesterday feeling fine and we felt confident to go into the hospital (plus I was anxious to come to some conclusion on the Milk Fortification issues and really wanted to have that conversation face-to-face).

We arrived in time for his morning rounds where the nurses and doctor and surgeon told us that they feel entirely resolved about the stomach issues and have no more concerns in that regard. This was one of our first hurdles for getting transferred back and our major worry for him so we were relieved to hear they are satisfied with his results. He is still having spells and will wear his CPAP for a bit longer. They are going to monitor what causes his intermittent issues to see if they can identify a pattern (some babies have problems in certain positions, while they are pooping or have gas, or when they have a full stomach). If they can identify a common cause, they can begin addressing the issue but there is a large likelihood he will simply grow out of it in a couple days. The doctor acknowledged our concern about the fortifier, restated their recommendation to give him some kind of fortifier while he is here and promised to return to have a more in depth conversation after they finished their rounds.

Shelly proceeded to hold Milo skin-to-skin and read aloud to him from her book. He had some trouble breathing on her to begin with but once they noticed the CPAP wasn't properly attached at its base, things went much more smoothly.

Milo at 26 days old, Shelly at 9,042 days old

A nurse practitioner and the dietician came back and both agreed there is minimal risk to the fortifier and that it is NEEDED at his size especially since he didn't have milk for so long when he was recovering from surgery. They told us of the best practice review sessions they have monthly and promised to bring me some studies on improved brain function in infants with fortifier and studies indicating the growth aspect was an important and long-term benefit. They never returned. I did some follow up research to see if I could find any information on babies who were on TPN (the IV fluid he got instead of milk while he was off food) and growth. I couldn't find any definitive data but slowly conceded that there are too many unique factors for me to be able to get good answers via internet searches and that I would most likely agree with whatever study the dietician eventually produced. In the end, we decided to agree to the fortification and I'll review the studies when they get them to me. It is very hard to say "let's hold off until I'm sure" when it means your baby will have slower growth rate and most likely need the PICC Line for longer (meaning a higher risk of infection).

This decision felt like my first big "best for the baby" decision and I am not super happy with how it turned out. In the end, I spent a lot of energy researching and stressing what in all honesty is probably a minor decision in the long-term. He will do fine on the fortifier (a huge proportion of babies do) and we will get him home sooner because of increased growth rate.

Day 25 - I Caught It

I woke up this morning with the tiniest sore throat and headache. I immediately did everything in my power to eliminate them including eating cayenne and taking echinacea and vitamin c, and felt back to normal about halfway through the day. We stayed away from the hospital anyway which was horrible but at least we had board games, crafts, a new Netflix show to enjoy and our favorite cafe down the street which included a nice walk in the rain to get there.

I called in several times to check on Milo and in the evening they mentioned that they had started him on Human Milk Fortifier (a cow based feed supplement given to premature babies as a matter of course). I asked the nurse on the phone some questions but she told me the doctor would be a better person to answer my questions the next day. I hung up and immediate began researching Human Milk Fortifier risks and benefits. After 2 or 3 articles I had a bad feeling so I called back and asked them to stop fortifying until we had a chance to discuss it with his doctor. He received two feeds with the fortifier and ran out of fresh milk to boot so they switched him to frozen colostrum which we were hoping he would get anyway.


Summary of the below rant: I couldn't find any evidence that milk fortifier would be beneficial for Miles and will consult our doctor and dietician tomorrow.

I spent the rest of the evening (and into the night) reading studies done on premature babies using the milk fortifier. It is touted as increasing short term growth, improving bone mineralization, and helping babies get the calories they need. The studies said that mother's milk, while sufficient for term babies, does not have the calorie content needed for preterm infants to match in-utero growth rates at the volume the preemie stomachs can handle. After reading through the actual studies conducted however, I found that 1) no long-term bone growth mineralization was indicated from the studies, 2) none of the research concluded that in-utero growth rate was necessary or even desirable. So while the fortifier looks like it will help him gain weight quickly and potentially get discharged from the hospital earlier, it seems to come with increased health risks (childhood diabetes, intestinal issues, and others) that I couldn't justify from the results of the studies available online. I was anxious to speak to his doctor in the morning to see if there are any conclusive studies of positive long-term benefits of the fortifier to which I didn't have access.

Another concern of the fortifier is that it is composed of high fructose corn syrup and flavoring in addition to the vitamins and minerals (granted the studies mentioned several kinds of fortifiers and the nurse was unable to tell me what kind they were using) ****UPDATE: his fortifier contains corn syrup solids which are different than high fructose corn syrup and no flavoring in this version**** and the base ingredient comes from cow milk which can cause problems in babies who are lactose intolerant or having trouble digesting the larger milk enzymes. Though these risks are small, if there is no long-term benefit, I can't rationalize making this decision for him. Long story short, I learned a lot about milk fortifier and none of it made me feel more comfortable giving it to my baby despite the nurse's insistence that they highly recommend it for all preterm babies. I am curious to see how the doctor will address these concerns in the morning.

Day 24 - Breathing

Shelly had a relapse of sniffles this morning so I headed in alone to give Milo some skin-to-skin. He has begun having periodic problems breathing which sounds dire especially when we are there telling him to remember to breathe and the nurses put as his goal for the day "keep breathing". However, this is not as bad as it sounds and is a normal process for preemie babies as their lungs develop. We hope he will grow out of these spells soon and in the mean time the nurses monitor him and give him physical stimulation when he forgets to breathe to help remind him.

Happy Cradle Hold

Cute little hand

His position while I was trying to give him skin-to-skin was making the problem worse however so we switched and I held him in cradle hold. Although I was sad to not be giving him skin-to-skin, I loved getting to see his little face while holding him and having the chance to play with his little hand (he has the cutest fingers).

Later that night, Savannah and Gus came over, they brought us some games and crafts to keep us entertained in the hotel. After Savannah and Gus left, Shelly tried her hand for the first time a embroidery.

Beautiful Souvenir

Day 23 - CPAP Part II

3 lbs 9.5 oz!!!

We woke up early today and got to the hospital in time to hear Milo's morning report. He was put back on the CPAP overnight because he was having some spells (oxygen and heart rate dropping). The nurses say they will check back in a couple of days to see if he is ready then but for now, he still needs it on. We feel really lucky to have gotten a chance to see if his whole face yesterday and now it will be a while until that hat comes off again.

Milo is doing well without the tubes in his stomach and is currently getting about half his nutrients from milk and half from his IV. By this weekend though, they expect to have him up to "full feeds" and get to start thinking about taking out the PICC Line.

We asked about being transferred back to Medford. His plane ride here cost $1,600 (we got to see the bill because they accidentally sent it to us instead of his insurance). The nurses informed us that insurance companies generally won't cover the costs of transport for infants back to a lower status of care which would mean if we wanted a back transfer, it wouldn't be covered by our insurance. Reasons we want to get him transferred back to Medford: 1) Medford has a "nursery" where each baby gets their own room and parents can live-in until the baby is ready to come home, 2) it is daunting to think that our first time alone with Milo will be a five-hour road trip home. We considered the possibility of taking the trip over multiple days and staying in hotels along the way but that leaves us with the equally daunting task of assembling all the various things we would need including a bassinet for him to sleep in and many more things, diapers/bottles/clothes etc.

There is a glimmer of hope in that the NICU here is getting pretty full. The other day we saw a mom and baby heading off to a private room in the child section of the hospital to clear up space (I asked about it and they told us she was heading home later that day and that she was able to move like that because her baby didn't need any more special care/supervision). The nurses at his rounds today mentioned that if they get any more busy, OHSU might foot the bill to send us home! Still need to watch his stomach for bit though either way to ensure that the problem does not reoccur.

After the report, I held Milo for two hours and then we went back to the hotel for lunch. After a late lunch, we returned to the hospital so Shelly could have her turn holding Milo. He is still a little erratic with his breathing but other than that he seems to be doing great (the breathing is totally normal and should subside on its own as his lungs develop). It feels good to get to be back at the NICU with Milo and amazing to get to hold him multiple times per day now that there are not as many cords to juggle. He doesn't even fuss anymore when we do the transfers proving that they are not too difficult on him.

Day 22 - We're Back In

We got to see him again today! Shelly was still feeling good after a full day of no symptoms so we returned today to spend time with Milo and hold him. He had his last tube taken out of his stomach and is now so much easier to move and hold. Also, after his blood transfusion they tested him without his CPAP again to see if the earlier difficulties were just caused by anemia.

We have our favorite nurse back after a week of not seeing her and she let us take what she called a "tube vacation" and took his feeding cord out while Shelly held him. No CPAP and no feeding tube meant a whole face clear of medical gadgets - we were thrilled. After Shelly held him, they put an NG feeding tube in (this is a smaller tube that goes in through the nose instead of the OG which goes in through the mouth) and set out to watch him to make sure he did alright without the CPAP for the rest of the night.

While Shelly was holding Milo, his physical therapist stopped by and walked me through a little infant massage course she teaches. We used baby dolls to practice the different kinds of touch that are beneficial to use with infants. We are supposed to wait until he is alert (eyes open and looking around) but not agitated (limbs calm with little movement) so it could be a while until I get to put my new skills into practice. Milo very rarely has his eyes open (we think the CPAP hat may have something to do with this as it squishes his face and makes it difficult for him to open them).

We went back to the hotel for dinner with the intention of returning in the evening so I could hold him for a bit but it was raining and I hate to drive in the rain and dark. We were both pretty tired so instead of holding him at 8 like we had planned we went to bed at 8:30pm. It was great to get such a chance to catch up on sleep. We are still both waking up every three hours to pump so if we don't go to bed early, we end up needing to sleep in to make up for the disturbed sleep.

Milo's Tube Vacation

Great Hair Shot on Mama

The first thing he did was bury his face in Shelly's chest

Doing so well!

Day 21 - Three weeks old (and officially 32 weeks adjusted!)

Eating milk and gaining weight!

We got a call at 5AM this morning from Milo's nurse practitioner. They needed our permission to do a blood transfusion. Premature babies often need blood transfusions because they are not yet up to speed on replacing red blood cells and they need to give a lot of blood for the different tests. They also put him back on the CPAP because he wasn't getting the oxygen he needed (this might just be a symptom of needing the blood transfusion). They are going to check again tonight to see if he still needs the CPAP after the blood transfusion and take it off if he seems better. There is very little risk to these blood transfusions and they use extra caution with the blood they keep on hand for preemies. If all goes well, this may be the only one he will need and in about a week they will start him on iron supplements to help with anemia.

He is down to one stomach drain and they are going to remove that tomorrow. He is still doing great with processing the milk and they continue to increase his amount (though they had to take a small break with the blood transfusion). They are going to continue to watch his belly closely but we are hopeful that everything is progressing normally.

Shelly is hoping to be able to visit him again tomorrow (if the sneezes and sniffles stay gone overnight) and we are looking forward to having a chance to hold him without all the tubes and attachments. They will be taking out the last stomach tube tomorrow and considering removing the CPAP tomorrow meaning when we see him again, he may only have the PICC Line and OG tube (food line) both soft and well attached making movement easy and comfortable.

Back on the CPAP temporarily and wearing a tiny blood pressure cuff

Day 20 - Feeling Better (and Missing Milo)

Today they told us that they are taking out a stomach tube! He is eating well and they are going to take one tube out a day. 

We miss him dearly. Staying away for a stuffy nose is really hard. I haven't gotten sick yet which is great, I've been taking vitamin c and echinacea consistently and resting a lot. Shelly is feeling mostly better but still stuffy and sneezing occasionally. 

We have found that our time here seems very pointless without being able to visit Milo. We wake up and basically just dawdle until bedtime with movies, games, and stepping out for groceries and food as needed. It would be a good way to relax if we didn't miss Milo so much.

We entertain ourselves by comparing pictures of Milo and Shelly and Llupus as babies. We thought that his dark hair, sideburns, and hairy back and shoulders came from Llupus and his button nose came from Shelly but when looking at baby photos, Llupus didn't have a lot of dark hair and he did have a similar nose and Shelly's family is known for having lots of dark hair when first born.

                     

                      Llupus at 1-Month

Shelly as a Baby

Milo at 18 days

Day 19 - More Good News

Shelly is feeling much better. Just a little congestion left. Hopefully, we will get to see him soon! They called us today to update us. Milo is eating 6 ml per feeding now and they are talking about taking his stomach tubes out tomorrow (some discussion about whether to take them out one at a time or all at once). He had another dose of Tylenol because of pain from the tubes today but it doing great without the CPAP.

Missing our baby boy

Day 18 - Eating!

I stopped in today to drop off some of Shelly's milk and was able to get this photo:

CPAP Off!

I also took a little video where you can see him moving. They started him on a tiny amount of food last night and increased it today. They will continue doing this slowly until he is fully supported by milk!

Day 17 - Milo's Doing Better Than Us

Shelly woke up this morning with a sore throat. This is pretty much the absolute worst because it means we cannot visit Milo until her symptoms clear up. All the babies in the NICU have very underdeveloped immune systems so it is critical to limit their exposure as much as possible. We are a little worried because we had a lot of contact with Milo yesterday and we really hope he did not catch anything from us. Best case scenario, Shelly feels better and we wait a full day of her having no symptoms before we return to visit Milo. In the meantime, we are resting in our hotel with all the vitamin C, echinacea, ginger tea and naps that we can handle (me too, fingers crossed I don't catch it).

We called to check in on Miles and the GI study is still progressing but slowly. All looks good so far and the study should conclude tonight. Potentially, he can get started again on milk tonight or tomorrow. They want to observe him for three days with milk before they take the drains out. We cannot wait for that to happen because the drains are the only thing that would be causing him discomfort at this point beside the CPAP in his nose which doesn't seem to be that bad.

By popular demand, here are some photos of our hotel room and the hospital.

Our living room

Our kitchenette with a full-size fridge (which is good because we need the storage for all the milk Shelly is making)

Our bedroom

Our bathroom

Our NICU (Milo is the nearest isolette on the left)

The Starbucks on the way up to the NICU

Us waiting in line for our morning coffee

Day 16 - Upper GI Study

3 lbs 2.3 oz - making good progress

Great reassuring stats on Milo this morning

Today Milo was great. The nurses say he hasn't had pain medication since yesterday morning and hasn't been showing pain signals anymore. Shelly held him again skin to skin (without the CPAP) and he took the transfer to her like a pro. Normally, he'll cry during the lift and pass off but today he didn't even whine and snuggled right in. After about an hour and a half he got fussy though and started to try to climb up Shelly. It looked a lot like he was lifting himself off his tummy so we put him back in his bed because it seemed like his stomach drains were hurting him. He calmed down when he returned to his bed and headed off for his upper GI study. They had to keep monitoring him after they introduced the contrast to see it progress all the way through his system so they weren't able to give us a definitive result today but everything they had seen so far looked good.

Milo pointing out that he got his Mama's nose

CPAP break on Mama

Happy and sleepy from all the oxytocin

While Milo was doing his GI study, we headed to the salon so Shelly could get her hair cut. She was going to get a balayage (natural looking highlights) but the hair dresser was really good and was able to tell us that it wouldn't work very well with her hair thickness, so we just went for the cut.

Round brushing after the cut

Perfect haircut!

Llupus and Matt drove into Portland for a rock climbing tournament bringing us games, food and company. We had a great evening of games and dinner with them.

New games to keep us entertained