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.