Day 15 - CPAP-less

Today was my turn to hold him again. I was so excited to get my second chance and even more enthusiastic when the nurse (same one as yesterday) told us that she spoke to our doctor and got permission for us to do skin to skin care without his CPAP on! There has been research showing that preemies who have CPAP until 32 weeks have better longterm lung health so even though he does great without the CPAP, we are sticking with it until 32 weeks (next Wednesday!). But for the hour or two that we do skin to skin care each day, they have given permission to leave the CPAP off. This made the transition from the nest to my chest so much easier because all we had to juggle were his three stomach cords, his oxygen, heart rate, breathing monitors and the tube in his mouth.

There are definitely bonuses to having the nurse who is not as deft at moving Milo - we get to be a lot more involved, she didn't even have an assistant today, just had Shelly help. It was amazing to hold him without his hat and CPAP on and he was so good at breathing on his own. I could rest my chin against his hair and feel his cheek on my chest. Shelly was soooo jealous but she'll get a turn tomorrow. When I was done, instead of lifting him off of me like they have done in the past, she had me stand up and put him back which was a way nicer transition for him. He managed to stay asleep while I set him down and didn't wake up until she put his CPAP hat back on (and then he screamed angrily at us for waking him).

Milo grabbing my necklace (good thing I got my hair cut)

Live music performance while I held him

No more pain meds! He's opening his eyes again.

He really liked holding my necklace

The contrast material is taking a while to pass so he is scheduled for that second contrast study tomorrow morning. 

Day 14 - More Delays

So we weren't able to do the lower contrast until a day late because of x-ray's schedule and now we are going to have to wait another day for the contrast to clear before they can do the upper GI contrast study - so probably tomorrow. But that hasn't even been scheduled yet so there is a chance we will need to wait until the following day for x-ray to have an opening. So another day today with no interventions planned which is both wonderful and frustrating as we wait patiently for them to finish testing him so we can feed him already and get those tubes out.

Today the nurse that helped us put Milo on Shelly for skin to skin time was not as good as the others. It was a hot mess of tangled cords, CPAP popping out multiple times, and literally just setting Milo on her and letting her struggle to reposition him. It took like 15 minutes to get him all connected again and cozy. Milo took it like a champ though only crying a little and not his extra angry little cry so we are not too upset. Shelly said it was totally worth it.

A foot/leg print of Milo on Shelly's belly.

Cozy comfy Milo

 We went out with Savannah, who lives in Portland, to a trivia night at a local bar. It was fun (though neither of us helped our team much with the trivia). Who would have thought that we would have nights off to go out together after our son was born. It seems crazy that we can do that and a little sad that we are not with him all the time. But as in the picture above, when he is all tucked in and asleep, there is not much he needs from us. The nurses are really great about keeping him cozy, so for now we are just trying to pass the time until we can take him home (and doing skin to skin as often as they will let us).

Day 13 - 100%

Goal for the day: rest and be cute!

Milo had his contrast study today. The nurse said he was 100% normal in his lower GI tract and we will find out tomorrow about the upper one. His drains are all showing normal output as well meaning there is no more mystery liquid being created. Milo was displaying more pain signals yesterday so today they started alternating Tylenol and Morphine (a tiny baby dose), and he is doing much better. He is even starting to open his eyes again - something he hasn't done since before his surgery a week ago.

Today, I got to hold him skin to skin for the first time. It was incredible and felt like exactly how I was meant to hold him. We sat like that for over 2 hours. Near the end he got very squirmy and we thought he might be starting to feel some pain from lying on his stomach tubes but the nurse was very astute and thought that he was just getting overheated. We uncovered him and he calmed down as he cooled. He is so very small and loves to have pressure on his back and his arms and legs fully contained, it was hard for me to do all these things for him and still leave any surface area free for him to cool down.

First skin to skin experience with Milo

You can kind of see my short hair

I got a hair cut today. We were going to go really short but the hair stylist who has a lot of experience with curly hair suggested slightly longer so that it would be less upkeep. In the end, my hair is just long enough to pull back into a pony tail and it looks great. Shelly is going back there on Friday to get a trim and highlights.

This is the best/only place to eat lunch but people always think we work here since we are the first thing you see when you exit the elevator on this floor. Nope, we don't know how to get to delivery.

Day 12 - Contrast

Quick Updates:
Back on Skin to Skin holding
Milo weighs 3 lbs 1 ounce today
Contrast study delayed a day due to availability of x-ray

Today we arrived at the NICU to find that Milo is doing well. Since it is a Monday we have a different nurse than we had over the weekend. She surprised us by telling us she thought we could hold Milo skin to skin today. We were so excited! Shelly held him for an hour and a half against her chest despite the belly tubes still being in place. The other nurse had told us we should wait until they come out which will probably be another week so you can imagine how happy we were to hear that we didn't have to wait. The nurse today said that he really enjoyed sleeping on his stomach, once she got him all tucked in and held her hand on him for a couple of minutes to soothe him, so the skin to skin hold would probably not bother him either. He settled right down after a couple of minutes and was the calmest little guy the whole time Shelly was holding him.

Baby Milo hiding under his heated ducky blanket

They switched him to a Tylenol suppository a couple of days back. The nurse who was assigned to administer it protested because you have to cut the suppository into fourths for the right dose and it was a bit crumbly and hard to use properly. At the time, the doctor who ordered it said that it was literally $1,000 cheaper than the type that could be given via the IV. The reason they switched him in the first place was because he was being weaned off of his other pain meds and had reached the lowest dose of that medication so this was next step (either suppository or IV Tylenol). Well today there was also a new doctor and the orders changed to the IV version, through his PICC Line so there really is no reason other than cost that we wouldn't do it. Our minds boggle at how much his stay would cost us if it wasn't covered by insurance - at $1,000 per tylenol dose.... I would be really interested to see the total bill after everything is said and done, his and Shelly's.

The contrast study was scheduled for today however the x-ray folks couldn't get him scheduled in until tomorrow morning which means everything we had timed out will be one day behind "schedule". Tomorrow morning they will do the bottom to top contrast study and then the following day they will do the top to bottom study. After that, if everything looks normal, they will reintroduce him to food and start removing stomach drains!

We also got a visit from the folks who do premature baby eye exams. There is a heightened likelihood that their eyes will be prone to a disorder (the same one that caused Stevie Wonder to go blind) when they are born early. Luckily now they can test for it and correct it with laser surgery when it is in its extreme form. This condition (ROP) is super likely to occur in a mild form that will correct itself so they do several exams over the course of their first couple months of life to track the progress and make sure it doesn't need correction. The person telling us about the condition mentioned that they used to treat it through freezing the abnormal blood vessels behind the eye that caused the issue but now they can be much more precise with lasers. We are hoping of course that he is one of the many many preemie babies who does not need intervention.

Despite getting a lot of good news today (skin to skin care back on the menu, a great care package of baby clothes from home, a coffee card from Mark and MJ, getting me on the nonrestricted meal tray because I am pumping, and more) I was disappointed that I didn't get to touch Milo more and ended up being a bit down when we left. This is probably a normal reaction that a lot of mothers go through when they have babies in the NICU, I just want to hold him and snuggle him and touch his little hands but I keep not giving myself the option because he is tucked in all cozy and I know he needs his rest. In any case, tomorrow I'll be doing skin to skin with him for the first time (if all goes well and it will fit in with his busy followup x-ray scheduling). I cannot wait until he is totally free of all of his attachments and Shelly and I can hold him as much as our hearts desire.

Skin to Skin! For the first time since day 1

Some of the baby cloths we got sent from a couple sweet friends in Southern Oregon

Fury baby back

Day 11 - No News is Short News

Daily Goal: be comfy!

We are so happy with the progress Milo is making. Today the doctor told us his lung is fully inflated and they will be stopping the breath therapies, CPT, and returning his CPAP pressure to 5. They will just be keeping on eye on his lung (well an ear since they will not be planning more x-rays and just listen to hear if it sounds normal). Everything else is going how they would hope and he is almost ready to transition from an all IV diet to a partial milk diet after his contrast study on Monday.

Shelly got to hold him again for an hour today. They keep him so comfortable, all wrapped up in a cocoon whether he is being held by us or just chilling in his "nest." We were going to take a break to get some dinner but instead just decided to spend the rest of the evening in the hotel room relaxing (they had made chili dinner for everyone and had leftovers from the meal they had made yesterday) so we stayed in. With Milo so well cared for, we tend to feel a little ancillary at his bedside unless we can be holding him. Since he is all tucked in and we want him to have his rest, we hate to untuck him just to hold his hand for a bit. Perhaps tomorrow we will do that anyway for a bit.

We had a nice night in watching movies and relaxing and are headed in early tomorrow to see how his contrast study goes.

Little Hands

Day 10 - Pumped

Today we found out his head ultrasound was totally normal! They do another one closer to term but with this one looking so good, it is very likely he'll have a totally normal one then too. I am so relieved. This was one of those tests I had read about in my preemie research and heard other preemie parents talking about as one of the indicators of long-term problems. Milo shows every sign of being able to develop into a normal baby/child/human.

His lung is still giving him issues and the nurses are at this moment trying a technique where they push air into his lungs at a bit of an extended rate compared to the CPAP to see if that can get it open. The nurse practitioner says that since he seems to be doing fine with breathing and oxygenation, we will probably just try less invasive solutions and keep an eye on him instead of trying to expand the lung through intubation.

I got to hold him today! They transfered him on his tiny cushion and set him on my lap. It takes a lot of effort by our nurse and an assistant to pin all his cords to his cushion, adjust all the tubes and CPAP, and get his IV in place to carefully move him. But they did it and I got to sit with him on my lap for over an hour.

Nurses valiantly adjusting cords/tubes/monitors while I look at Milo

I have started pumping every time Shelly does to see if I can create some milk for Milo and have the opportunity to breast feed him when he is older. It is much harder for women who have not been pregnant to create milk but it is possible and after 3 days, I am making some promising progress. There are two rooms here for pumping women. They are private with a door that closes and a sink for washing out the pump equipment afterwards. It is a little haven and the only place in the hospital we can really relax and be alone. There is a whiteboard on each door where you can 'reserve' the room by putting your last name and the time frame you will be using it. The nurse who showed us the rooms said we can use it for 30 minute at a time. It's funny how much we can interact with other mom's through no more than just these whiteboards.

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"E.E. just put her name and not a time frame and now she's just napping in the room."
"Yeah, but she leaves if anyone knocks because they need the room."
"That's a clever plan."

"Large wasn't in the room when the board said she should be but then she adjusted her timeframe to be later with a note saying she was running late so we have to wait an extra fifteen minutes for our turn."

"Oh, that's nice, the person who reserved a room after us left a 10 minute buffer in case we need a little more time."

"Hey, that lady marked off more than half an hour, can we do that?"

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We can't believe we've been here five days already. On Monday Milo will have his contrast study where they will put dye down his throat and watch its progress through his intestines to make sure there are no abnormalities and then, if that goes well, we can start him on Shelly's milk again. After a couple of days of observation on milk, we can take out the tubes in his stomach and begin dropping his IV calorie intake! Then hopefully, it will all be healing and growing until we get to take him home (or transfer back to Medford, we are not yet sure which).

Day 9 - Caffeine

Objectively, today was a pretty good day for Milo. Shelly and I realized that our morning lattes were costing us about $8 a day and decided to skip our fancy coffees and opt for the free coffee we can get with our breakfast tray. And that was the beginning of an emotional day for us both, wether related to the coffee or not, we don't know but it definitely didn't coincide with any health issues on Milo's side.

They did find out that Milo had a collapsed lung when they did the x-ray to make sure his PICC line was in place. Just a minor thing that seemed to improve slightly on the next x-ray and then digress again for the following x-ray. They didn't think there was air or fluid in his lungs causing the collapse which is good and decided it might just be mucous that needed to be broken up so they ordered Chest Physiotherapy (CPT). This therapy is about the cutest thing they could have prescribed as it basically entails one of the nurses taking a device that vibrates softly and laying it against his chest in various places for about 5 minutes at a time. It vibrates through him and helps break up the mucous and most babies really enjoy it. It's fun to think about these babies having little spa treatments between the caffeine and milk (latte), the bilirubin lights (tanning bed) and the CPT (massage), these kids are getting pampered.

The good news is that his lung doesn't seem to be bothering him, he is still breathing great and getting plenty of oxygen (his CPAP is no longer needing to supplement the oxygen he gets). They also did his head ultrasound which is a common test they do at around 10 days that will show if they have any bleeds or cysts in their heads. Waiting on the results of this test was nerve wracking because any abnormalities here could lead to future long-term problems including cerebral palsy.

My dad made the trip up here and met us at the hotel this evening. I called in to see if they had any updates from his most recent x-ray (after the CPT therapy) and the ultrasound. There was no news, his lung was still collapsed and the ultrasound results hadn't come in yet.