Day 8 - A Breath of Fresh Air

Today Milo is doing great. The nurse wanted to let him rest and extubate tomorrow but our doctor wanted to get him back to normal activity so they decided to extubate after his noon x-ray. Shelly and I were there holding him as his tube was pulled out.

Hanging out before his extubation

Baby Milo finally has his breathing tube out

Back to the CPAP and doing well. Those holes in his tummy are doing great too (even though they look pretty scary)

No luck on getting insurance to pay for the pump in Portland so we are just going to borrow an extra one from Megan. My dad is headed here tomorrow and will thankfully be bringing another bag of our stuff (I only brought one pair of pants). I had to take off in the middle of our day here to get to the dentist. A while back one of my fillings popped out and I have been in denial about needing to go into the dentist. Two nights ago however, a bit of my tooth came off while flossing which inspired me to jump into action on that. The dentist put in a temporary filling and said I will probably need a root canal when we get back to Medford in a couple weeks. Terrible.

Shelly finally got to hold Milo again this evening after a week of not being able to. They couldn't do skin to skin yet because of his tubiness but they moved his whole cushion with him on it and Shelly held him for an hour. 

Mama is so happy to be holding her baby. (See Video on Facebook)

The nurse, Elisabeth, who was assigned to our baby today was very sweet. She said she was so proud of how he is doing. He was able to keep his temperature up while Shelly was holding him (one of his many criteria for getting released) and he is pooping! Even without being on food right now. This means everything is working well and he has an outlet for some of his bilirubin. The nurses call him a little gentleman because of his temperament. Now that he has his tube out, he will start crying again (though he'll have to work up to it since his throat is probably a little hoarse from the tube). He was crying while Elisabeth changed his diaper and literally the moment she attached the second side he stopped and was calm again. So cute! He also is VERY good at grabbing his tubes and pulling on them. Elisabeth says that if he keeps it up they will put him in the "Mittens of Shame" which are actually just socks they put on the babies hands so they can't pull on their tubes. 

We can't wait to head back tomorrow and hold him again.

Day 7 - Insurance Woes (but at least no baby woes, so that's good)

Today marked his first week out of the womb and makes him officially 30 weeks! He is growing so much and doing so well. His updates are few, he successfully got a PICC line inserted and got to lose the hand and feet IVs giving his little limbs more mobility to move around and less bruising. We are happy for him because even though it was tough to get the PICC line in (3 separate tries totally 5 pokes before they got it with rests in between tries), the hand and feet IVs are known for only lasting a couple of hours and at most a full day before they come out and he needs to be pricked again. The PICC line will be with him until he graduates to not needing IVs at all.

If he settles pretty well with the PICC Line and his x-ray tomorrow morning looks good, he'll be getting extubated. The x-ray to see if the PICC line was in properly today showed that a small portion of his lung had collapsed (probably just from his positioning) and they upped his respiratory pressure to help expand it. They want to make sure that resolves before they remove the tube.

On an un-Milo related note: Shelly and I both had very long and stressful phone calls with our insurance providers. I was trying to make sure my insurance would cover dental work for me here in Portland since I had a bit of a dental emergency I wanted to take care of here and Shelly was trying to get the pump we were promised in Medford to be transferred so we could pick it up here in Portland. Both tasks were arduous and involved a lot of phone calls to places that ask you to hold before anyone even answers. I made some progress on getting dental coverage here but no progress on getting the pump covered by insurance.

Also an annoyance in our life, our GPS can't seem to get a handle on Portland streets meaning that every time we drive, we are routed on paths that don't possibly seem like they can be the quickest path including several paths where we double back the way we came and multiple opportunities for wrong turns. This was especially frustrating as I tried to navigate alone to my dentist appointment (already running late) and ended up going North instead of South on I5 because my GPS was just a couple of seconds late on telling me which fork to take. On the bright side, the dentist called and said they we were rescheduling for the next day since my insurance hadn't been switched over yet (my current insurance will not cover work in Portland but they were able to transfer me over to a different service that would cover it but it was not active in time for today's appointment).

1 week old today!

They laminated his footprint for us

The name tag that hangs on his bed

Day 6 - Finally Settled

Milo has his chest tube out and is doing well. The first nurse tried once to insert his PICC and couldn't thread it all the way. A while later, a second nurse tried twice more and couldn't either. They say that this is totally normal and happens on some babies. They are trying again this evening maybe on a different vein. I feel bad for him having to be pricked again that many times but he is still on pain medication for his surgery and they told us he didn't seem to mind very much.

We tried out their free "tray service" for the first time. Because we are Milo's parents we can have three meals delivered each day, ordered off a gluten-free menu from the cafeteria. The food is really good.

Shelly's lunch today.

After lunch, they had finished poking Milo for the PICC so we went back to his bedside. During the procedure they curtain him off and all wear masks and gowns to help lower the risk of infection. The nurse who was assigned to Milo today is very sweet. She lowered his bed to chair height and helped us move him to the edge of his bed so Shelly could sit with him and slide her hands under him for snuggles without removing him from the bed completely. Since we haven't been able to have skin-to-skin holding time since before the intubation and chest shunt the snuggle time was much needed.

Shelly "holding" Milo at OHSU

Milo being held

His little legs draped over her arm

After we held him for a bit, we headed out to check into our room at the Ronald McDonald House (RMH). So many amenities, where do I start? As we arrived they told us they had someone make dinner tonight and invited us to have some. We weren't hungry yet so they let us put some in a Tupperware and take it back to our room for later. We had a yummy salad and pasta (that's right, they had a gluten-free pasta out). After we snagged some dinner, we had our orientation. We are set to stay in this room until the day after Milo is released from OHSU with full access to all the following:

• An indoor pool and hot tube
• A gym
• A laundry room
• A breakfast buffet every morning
• A fully stocked pantry and fridge with foods we can take back to our room and prepare (in our fully equipped kitchen)
• Volunteers who prepare meals for everyone on occasion
• A portrait photographer who may be able to come back to the NICU for professional photos
• A printer for printing photos of Milo (and a scrapbooking room with everything you would need)
• A full shelf of movies (including so many fun children's films) that we can choose from to take back to our room in the evening
• Periodic activities including something called Pile of Puppies which is exactly what it sounds like

There are so many great things to do, the irony is that the people staying here mostly spend all their free time at the hospital at a bedside. When we were taking the tour I was really impressed but mostly thinking that we won't be spending much time here, maybe some evening movies in our room and sleeping. Other than that, we'll be at the hospital all day.

I'm so extremely grateful for the wonderful accommodations (the hotel last night was subpar so this is fabulous). I would never have guessed the amount of relief there would be in just knowing that I don't have to think about taking care of us while Milo is in the NICU and I never would have imagined there was so much support here for parents going through what we are.

I am so happy that this update gets to be more about the amazing things we have in our life and fewer updates about the baby's health (since it is mostly unchanged since the last post - our deepest desire is just for him to have time to heal without anymore interruptions from stupid necessary medical procedures). 

Bonus picture of Milo's scrunchy little face (don't mind the swollen eye - totally normal for babies to have some swelling due to excess fluids given during surgery settling from laying in one position for a while) 

Day 6 - Midday update because Yay!

We heard from the doctor as soon as we came in today. She said he is doing fantastic (her words not mine). His chest shunt will be coming out today and they are weaning him off of the intubation so they can take that out today or tomorrow too! His two IVs in his feet will be replaced with a PICC (a longer IV that can handle higher calorie passthrough so he can continue to grow). The PICC comes with some risks as it is a minor surgery where they thread the needle through a peripheral vein to just next to the top of his heart. This will be able to stay in until he no longer needs the IV and is eating all his calories which is much nicer for him than the current IVs that come out and need to be replaced often. This hospital got an award for their extremely low infection rates with PICCs and are very experienced in it (the nurse said they once went 2 years without a single infection!) so we are pretty confident it will go well. The PICC will not affect our ability to touch/snuggle/hold him when the stomach drains come out.

This hospital is also great on skin-to-skin care and even offered to lower his bed to chair height so we can rest our arms in there next to him and snuggle even though we can't pick him up yet. We are VERY excited for this later today. They also gave us something called a "Snoodle" which is a small blankie with a soft ball at one end (designed to look like a little head as if the blanket is the body). The sole purpose of the Snoodle is for mom to keep it in her shirt and then let the baby have it next to him for the extent of his stay. They also said we can dab breast milk in his mouth so he can have the taste of it. We are so happy with the care he is receiving and how thoughtful they have been of us. Today we tried to imagine what it would be like if we were having to pay for all the care we are receiving and our minds boggled (lodging, food, healthcare, pump equipment, private rooms for pumping). What is a word that means much much more than just grateful? That's what we are for our health insurance and the wonderful people here who are always stopping to ask us how we are doing and if we have heard of this or that amenity.

We got a room in the Ronald McDonald House and will get to move in this afternoon! I cannot wait to have a room again where I can unpack and feel stable. Carrying all our stuff around and repacking each night has been tiring.

Shelly and I are so happy and optimistic about the progress of our baby. At times we flinch, hoping this is not just another "up" on the roller coaster of having a premature baby. It is crazy to look back on the ups and downs we've had so far and think about how scared we were for the intubation and then how that seemed less scary and how terrible the chest shunt felt. And now, after the surgery, how minimal the chest shunt seems. We really hope that nothing else comes up that makes the surgery seem minor in comparison.

*Today I was talking to the nurse about how Milo will have a matching scar to Shelly and I mentioned how my brother has a matching scar too. The nurse and I spent a moment speculating about wether Milo's stomach fluid might be related to what my brother had. I was reassuring her that is seemed totally different when Shelly reminded us that Milo doesn't actually share genes with Daniel. He seems like so much a part of me that I forget that sometimes.

Interim: about me

I'm sitting in our dim hotel room letting Shelly sleep a little bit more. She did not sleep well last night and I got a full night sleep so she deserves a little rest. I packed up the room and we'll head over to check on Milo just after her 9:00am pump session. Though I am itching to see him, I suppose in the long run, her healing well and getting rest is more important than us being there bright and early this morning.

In the morning, before we go to visit Milo, I always feel hopeful and a little bit scared. Will he have had a good night with time to heal? Will he have a restful day and continue on his track to getting better? Or will we show up and get an update from the nurses about another "event" that will launch us on yet another roll coaster of worry, scares, and hopefully end in relief. The nurses are supposed to call us if anything happens in the night but the line they draw for calling us is different than mine would be so sometimes we show up and they have news about him.

I am feeling good this morning and ready to spend the day at the hospital with Milo and Shelly. They are taking care of us so well and I am looking forward to seeing what parenting classes they have during our time here (we had a series of classes lined up through Ashland Hospital that they recommend you begin in your third trimester. We managed to attend the very first introduction class the week before Miles arrived, so we'll miss the rest of the sequence).

I woke up with a stuffy nose and am terrified that I will get sick. My body tends to do that when I miss sleep. However, the stakes are pretty high right now as if I get sick, I wouldn't be able to visit my baby for fear of being contagious. I have been washing my hands every five minutes and using lots of hand sanitizer - to keep the baby safe while we are in the NICU and as an added benefit, I have managed not to catch anything yet. By all previous experience I should have been sick days ago.

Writing about my experience helps me process what has happened and also lets me keep some perspective, as in "all of this is just part of Milo's birth story." Thinking about how we will some day tell Milo of his very first plane ride and all about how he got those scars, helps us stay positive and deal with all the scariness. (I am for some reason very happy that his scar will match his momma's c-section scar). It is also really nice to see how much support I have from all of you. I always knew I had great family and friends but this is really the first moment where that support is needed and seeing how many of you have sent your supportive thoughts and offers to help is really a wonderful part of each day. Even though I may not remember to take all of you up on your various offers, I know that if I need something, I can reach out and have someone there.

*I have been reading my blog to Shelly while she is tied down to the pump and she says that she really enjoys hearing my blog and then hearing everyone's supportive responses and comments.

Day 5: Why we are in Portland

Brief Update;
Milo is doing well, he did not have a perforated bowel despite x-ray evidence that he might. Instead he had a yellowish mystery liquid that they cleaned out and hope will not return (tubes in stomach for now in case it does). We are in Portland for at least the next two weeks where they are more able to deal with this kind of thing and they are being very very hospitable. More details below.

Full Update:
Today was Milo's fifth day of life. At around 12:15 in the morning after I had slept about 2 hours and Shelly had slept about 1, Shelly woke up to pump and found that we had both missed a call from the nurse on staff at the NICU. Her message said that Milo was having some digestive issues and she wanted to connect with us about them. Shelly called her back right away (luckily only about 2 minutes after she had called us) and she told us that she was very concerned because it seemed Milo was having some air escape into his stomach and they were worried he would need corrective surgery. She told us the best hospital for that was in Portland and they were connecting with the Portland doctor on call to see if she thought it was necessary to fly him out there, but our NICU doctor thought that would be likely.

Of course we were very scared to hear that he may need surgery. Shelly and I immediately packed our bags with everything we could think of that we would need for a Portland trip and headed to the Medford NICU to talk to the doctors there in person and see Milo. Milo looked fine but the doctors said his x-ray showed air in his stomach and there was likely something wrong with his digestive tract. They heard back from the Portland NICU that the plane would arrive to pick him up in a couple of hours. They didn't know if there would be room on the plane for us so Shelly and I hopped in the car, made a quick stop at our house for last minute items, and hit the road to Portland knowing that if we hurried, we could arrive not long after Milo.

The drive, though one of the most distressing periods of my life, was thankfully uneventful, with two stops to pump and one stop for coffee, and we arrived in Portland around 8:30am. The Doernbecher hospital in Portland is much bigger than Medford's and you have to take three separate elevators to get from the parking lot to the NICU. When we arrived they were just doing a final x-ray on Milo before taking him to surgery. The doctor explained that they saw air in his stomach but didn't see what the problem was. They were taking him for an exploratory surgery on his bowels with the expectation that he had had a perforation that they could fix. The other possibility, they explained, was a necrotizing enterocolitis, a condition where part of the bowel starts to get sick and die. If this was the case, the doctor told us, they would pull that part of his intestine out of his stomach and attach it there in a pouch for about a week, giving it time to heal. As you may imagine, Shelly and I were not very happy with either of these options but hoped it was a simple (and small) bowel perforation that they could staple closed without fuss.

The doctor had told us that she hoped to complete the surgery in an hour but it could take up to two hours because they really didn't know what they would find but in a child Milo's age, long surgeries are not a good idea. The waiting room had a screen showing each patient (by private identifier number) and what status they were at in their surgery. We also had a pager that they could use to contact us with news. We received a page telling us that Milo was doing great and that the surgery was about to start and then we didn't hear anything back for a while. We tried to distract ourselves and Shelly fell asleep for a couple of minutes on my shoulder. 45 minutes in, Milo's indicator clicked from "In OR" to "Closing". A very good sign. The operation had taken less than an hour giving us hope that something totally fixable was found and fixed easily. Then the "Closing" status lasted another 50 minutes renewing our anxiety. Finally, Shelly had to pump so we found a nurse who was kind enough to show us to a back room and promise our doctor would come to us there for our consult. She found us and told us that Milo did not have anything wrong with his bowels. They had found evidence of air and a yellowish liquid in his belly where it should not have been but they did a complete check of his bowels and nothing was wrong with them. She wasn't sure where the yellow liquid and air came from but they left three tubes in his tummy to drain any additional liquid. The doctor said she thought it was possible he wouldn't create anymore and the liquid may remain a mystery. They would keep him off food for a week and see what happens and then watch him on food for a bit to see what happens, total time in Portland: at least two weeks.

Milo today after surgery sleeping it off

We went back to see Milo and he was doing great (though black and blue and having 8 tubes coming out of him; feeding tube, intubation, chest shunt, two IVs - one in each foot, and the three new tubes in his stomach). They had him pretty heavily sedated but all his stats looked great and he was doing really well.

We met with a lady from social services after the operation (and after lunch) and she told us that we qualify to stay in the Ronald McDonald House in a nearby hotel about 10 minutes from the hospital. This would entail a free suite including a full kitchen, free breakfast, and free transportation to and from the hotel. Unfortunately, they did not have a room available for tonight so the hospital gave us a voucher for $40 and set us up with a different hotel for the night in the hopes a room will be available in the Ronald McDonald House tomorrow. We covered the rest of the hotel cost but that didn't even matter, we were feeling so grateful to the hospital for setting us up with lodging and loving the idea of getting to move into a room at the Ronald McDonald House permanently (we'd get to stay there until Milo is ready to leave). The hospital also told us that while we are there, since Shelly is nursing, we are entitled to three free meals a day that they will deliver from the cafeteria and we are welcome to join in any of the parenting classes they have going on during that time.

Feelings:
Relief (that Milo is doing so well and that we have such great accommodations while we are here)
Trust (that the Portland hospital can handle any other challenges that may arise)
Tired (I slept two hours last night before driving to Portland and dealing with a huge amount of stress, sadness, and uncertainty)
Proud of our little boy and how strong he has proven to be.

Day 4.5: "I Smell Like Milk"

Shelly has been pumping so well! We have enough milk now that we are starting to freeze it and apparently, smell like it.

The x-ray went really well and Milo seems to not have any air left in his chest cavity. His lungs are also expanding normally. The doctors, after seeing this, tried pausing his respirator to see what would happen and he did not take kindly to it. He went into D-Sat (which I just learned means desaturation as in very low oxygen levels) and refused to breathe on his own. They bumped him back up to getting the support he needs and reassured us this doesn't mean he is lazy, just getting tired from working so hard and could still use the help.

While I was in there with him (not touching because I didn't want to disturb his rest) he went into D-Sat again. It was very scary to watch his oxygen levels drop to the low 30s and see that he wasn't breathing anymore than the 25RR that the machine forced him to breath. The nurses quickly surrounded him and adjusted his levels and cleaned his breathing tube and he returned to normal. I totally trusted that he was fine and that they would take care of him and it was still petrifying to see. I am really glad we were not in the room for the other two and that Shelly didn't have to see that one either. After he stabilized I crossed his little arms over his chest and held them in one hand while I held his legs down with the other. This is supposed to be comforting to small babies by reminding them of being in the womb and I really wanted to comfort him (and me after his "event" as the nurses refer to it).

After about 2 hours of holding him like that, I tired of my arm cramping and falling asleep and knew that Miriam and Jacob would be arriving soon with lunch. I slowly let him up and had a good meal and company and got to show off my new son to my old friends. He seemed pretty stable though his oxygen levels continue to hit his upper and lower alarm triggers causing the nurse on duty to roll her eyes and tell him to make up his mind as she minutely adjusts his levels up and down every time his alarms sound. She is pretty funny and clearly taking good care of him.

We are so lucky that Shelly's mom came by to visit and packed up all our stuff for us. I packed up the car much easier than I was expecting and we said goodbye to Milo. I was sad to leave him but looking forward to returning home where we could organize our stuff again and know where everything we needed would be. I was also looking forward to feeling clean again.

We got home around 8 and spent a little time unpacking and organizing the armloads of items we had accumulated at the hotel. I fell asleep in the living room on our bean bag chair while Shelly finished pumping and fell asleep on the rocking chair Megan got for us as a baby present.

Feelings:
Exhausted
Accomplished (I unpacked most of our stuff even though I was tired)
Sad (we missed Milo and couldn't wait to see him the next day)

Day 4: Checking Out

Today Shelly gets released from the hospital. She is doing great and the nurses are constantly impressed by 1. how little help we need, 2. how quickly she got off pain meds, and 3. how much milk she is making for Milo.

They tell us we can stay as late as we want today and we are going to take them up on that. With meal delivery and staff on hand to get water, check in on us, and make us comfortable, this is a pretty nice place to be. And the bigger reason, once we check out, we will not have a bed and private room just down the hall from our baby. We will have to henceforth choose between spending time with Milo and heading home to get some rest. No more quick mid-day naps knowing we can pop in to check on him as soon as we wake up. It will be strange to be home without him. We have so much stuff to prepare (much of which Shelly will be barred from doing as she recovers from her c-section). I am hoping to have the energy to do a full clean of our rooms in addition to setting up all the baby stuff so that Milo can come home to a clean environment. Our current plan is to come into the hospital early in the morning to be here for Milo's first feeding (8:30AM) and spend the day here taking breaks now and again for snacks and meals. We'll see how this plan changes in the face of reality.

Good news time: Milo had an excellent night. The nurses spent the night hours incrementing him down on all his respiratory assistance (there are a large number of categories the respirator helps with including adding oxygen to his mix, volume of air pumped into his lungs, pressure of air pumped into his lungs, and breathing rate). By the time we checked in on him early this morning, he was down to no added oxygen in his mix! And much lower on all his other stats. They are doing a chest x-ray now to see if everything looks ship shape and then they may be able to pull the intubation tube out and put him back on the CPAP. They will also clamp his chest shunt if they don't see any more air in his chest cavity and in a couple hours, if there still isn't an accumulation of air, they will be able to take out his chest shunt too! (Ok, none of the nurses have actually said this part because they all just keep saying "it depends" when I ask how long it will be from clamping to removal of shunt. They seem to have had some difficulty getting the shunt inserted in the first place so they are all hesitant to remove it until they are absolutely sure).

Once he is clear of all these tubes, we should be able to go back to holding him skin-to-skin, which has amazing benefits for both baby and moms. Once we can hold him again, all bets are off on what times we'll be here and when we'll be home. It's going to be hard to leave him when we should be holding him, even in the middle of the night.

Feelings:
Excited and proud about Milo's progress.
Worried that I may be overly optimistic.
Sad about having go home (a ten minute drive).
Stressed about having to pack/unpack all our stuff, set up for the baby, and be in charge of all our meals again.

I woke him up by changing his diaper.

Forehead wrinkle to try to keep his eye open.

Didn't work.

Day 3 - Roller Coaster

We had a typical night of waking up every three hours to pump. I have begun to sleep very hard (the lack of good sleep combined with the stress - my stress relief tends to be sleep) and Shelly often has to poke me, or throw pillows to wake me up. In the morning I went to check on Milo while she pumped and was happy to hear that nothing had changed in the night. No new interventions was very happy news because that meant he had had the whole night to adapt to the outside world and grow that much stronger. He still had the intubation and chest shunt but he seemed calm and his oxygen levels were down to the lowest they had been since he arrived, 24%. The new day shift nurse, endeared herself to us by telling us the story of when she had first approached Milo that morning. "He opened one eye and reached up, grabbed his feeding tube and tried to jerk it out of his mouth. 'So that's how we are going to be today?' I asked him, 'Nice to meet you too.'"

Shelly and I had breakfast and then went to sit with him. We can both just sit and hold his hands for hours just staring at his little face. One of the benefits to the intubation instead of CPAP is now his little nose is available for smelling and the nurses recommended we each keep little squares of cloth in our shirts that we can set in the incubator with him after they pick up our smell. That way, he can smell us in there will him and feel reassured. We came back after our lunch/pump break to find the cloth covering his face (not dangerous since he gets all his air through the intubation tube) and the nurse explained to us that she likes to do that because it covers their eyes more from the light and comforts them with smell. We were again very grateful to be in a hospital that values breast milk, skin-to-skin care, and the smell of the mother as powerful tools for helping developing babies.

That evening we found out that the air that had been escaping into his chest had dwindled and stopped. They promised us a chest x-ray the next morning to confirm the leak had sealed and if after having the tube clamped for a while, there still wasn't any new buildup of air, they would be able to take the tube out (JOY! we may be able to hold him again after that happens). We also found out that his blood work came back excellent and they were able to turn down the breathing contraption and let him start doing a bit more work himself. AND his bilirubin levels dipped meaning he can be done with phototherapy for a bit (though he may need that back off and on as it tends to do a great job of clearing his system but he can't do it himself yet, so the bilirubin will build up when the lights are off and dissipate when they are on).

We headed back to our 3 o'clock pump/nap, happy that things looked like they were on an upswing but wary, knowing that with babies born that early, there are often ups and downs, victories and set backs. When we checked on him again before dinner, he was doing well. I held his arms crossed against his chest for a little while and he loved it. They moved his IV to his head (it started in his hand and moved to his foot in the first day) because it had slipped out and now he gets to kick and wave his arms freely.

Feelings:
Sad for our little boy having to be so uncomfortable.
Happy to hear he is healing and doing better.
Excited to check in on him tomorrow to see his progress.
Feeling more comfortable being a "mom" (the nurses all make sure to call us that as much as possible).
Grateful: 1. that the staff takes such amazing care of our son and 2. that they treat me like just as much of a mother as Shelly, allowing me access, decisions, and updates with no hesitation or judgement.

Shelly and I spent some time with him after dinner.

Milo kept his eyes open long enough for a photo!

Milo likes to touch and grab all his cords and hoses.

The nurses let us change his diaper if we are there at the right time.

Milo likes to be held with his arms in this position, we love that he stayed there even when we let go.

Happy three days of life little Milo. Have a great night!

Day 2 - After the Honeymoon

On the morning of Milo's second day of life, things seemed to continue to go downhill. He was still needing the phototherapy (which reduces the amount of time he can be held skin-to-skin because the nurses want him under the lights as much as possible). He now had a tube in his mouth to help him breathe and we found out that he had had a collapsed lung due to some air leaking out of his lung into his chest cavity and putting pressure on the lungs from the outside. When we arrive he was lying on his side to help the air dissipate without further intervention as can happen in some instances. After a couple hours of holding his hand and worrying, the air still hadn't cleared up. The doctors inserted a needle in between his ribs to extract the air and said they would leave it there until they were sure the air wouldn't come back. If it did come back they would need to replace the small needle attached to a syringe that they use to manually extract air, to a larger (but still soft and flexible) tube that would be attached to a machine that could continually extract the air for him relieving the pressure on his lungs. And sure enough, the next time we got an update, they had replaced the smaller version with the more permanent larger version.

By this point we were feeling pretty low. We had spent the entire day before celebrating how well he was doing and now we were having one setback after another. It was not until a kindly nurse explained the "Honeymoon" phase to us that we started to feel better. According to her, and many of the other nurses after her, it is very typical for premature babies to go through a full day of doing great. They have plenty of energy and breathe well for the first 24 hours and then begin to tire out. After this period, they will need more and more assistance to help them do those basic tasks that they no longer have the energy for. The intubation and other remedies help the baby by taking some of the pressure off of him to maintain functions and allow him to rebuild his strength and slowly build the capacity to do those functions on his own long-term.

Shelly holding Milo's hand under the phototherapy light.

Though we were still very worried and stressed for Milo, knowing that what he was going through was common and not indicative of greater challenges to come, helped us feel less worried and appreciate the amazing measures the NICU was going through to make him feel comfortable. We were both disappointed that the shunt in his chest meant that we wouldn't be able to hold him for at least another day because at this point, there were too many things attached to him to have picking him up be a safe option. We slept that night knowing that they would reassess his condition the next day and hoping that everything would resolve.

Feelings:
Helplessness
Worry
Sadness
Love
Mixed emotions about getting congratulations from friends and family when this doesn't feel like a celebratory moment.

Day 1: The Setbacks

The next morning we were so happy to spend time with Milo. Despite being attached to an IV, the CPAP, and several different monitors for heart rate, O2 levels, temperature etc, the nurses let Shelly hold him on her chest for 2 hours. Skin-to-skin contact is proven to improve the health of babies and helps moms produce more milk with qualities that match the specific needs of the baby. We went back to our room afterwards and Shelly pumped nearly double the milk she was getting before. The day went pretty smoothly. We had visitors who brought us food, gifts and congratulations and it was incredible to us how little time we had for anything else between pumping, sitting with Milo, and visiting with friends and family. Shelly held Milo again in the evening and we became more familiar with the different staff members and protocols of the hospital.

Shelly holding Milo for the very first time.

Shelly holding Milo for a second time.

Every time there is a shift change, they kick us out of the NICU for 45 minutes while the day shift informs the night shift (or vice versa) of the status of each baby present. Sometimes the nurses on duty are kind and caring, encouraging us to touch Milo and talk to him and ask any questions we have about his health. And sometimes the nurses are blunt and make you feel in the way or like you are disturbing him if you touch him or talk to him. We quickly get a sense for if we are going to like his "Pit Crew" as we call them and look forward to the change of shift if there is someone on Pit Crew who we do not like as much. Each baby is assigned one nurse and there is a doctor who oversees the whole scene. There are also respiratory technicians who come through making it seem like there is always a small army looking out for Milo. We are consistently very grateful for the care he receives even if we don't always like the personality of those providing it.

That night things slipped for Milo. His heart rate and oxygen levels dropped causing them to have to switch from CPAP to intubation (ETT) to assure he got the air he needed. He also failed to pass his bilirubin test meaning he would spend the next day and night under phototherapy to help his body process and dispose of the excess bilirubin (both conditions are very common in 29 week old babies). The doctor came in around 3:00am to inform us of the intubation and we slept fitfully after that.

Feelings:
Happy
In love
Proud of everything he does
Worried for him
Excited to see him grow

Day 0 - Milo's Birthday

The next morning, having slept only a couple of hours we tried to entertain ourselves by playing some of the board games Megan and Tessa had brought us. Tessa was able to get on a later flight leaving at 1:00pm instead of 7am so she stayed and waited with us. We had an ultrasound in the morning during which time, Milo did not move very much which concerned our ultrasound technician. We scheduled a second ultrasound for later that afternoon to see if perhaps he would move more for us and Shelly was asked not to eat or drink anything in case we had to go into the c-section after the followup ultrasound.

We listened to Milo's heartbeat fluctuating throughout the day and had a steady flow people coming to update us and explain to us what would happen should the baby need to come immediately. They recommended we take a medication that would help protect Milo's brain should he arrive in the next day or two and we struggled with whether or not to administer it. In the end, we did take that precaution and we are so glad we did. Tessa caught her flight home and we had our second ultrasound. Milo, who had been squirming vigorously all afternoon, stopped moving just in time for the ultrasound tech not to be able to see it. So we played him some music to make him wiggle and it worked. We were so happy that he moved for the ultrasound because we thought that would mean he was okay to stay inside for a while longer. Right after the ultrasound however, our doctor came in and told us that she was worried because his heart rate had dropped a couple of times and seemed to be dropping lower each time. She recommended we get Milo out as soon as possible.

Me waiting to be taken into the operating room for Shelly's c-section.

I put on scrubs and Shelly was prepped for the c-section. They wheeled her into the operating room first and numbed her from the chest down. Then I went in and held her hand while the doctors pulled Milo out of her belly. She was shielded from seeing it by her gown but I got to look around and see them pull out our purplish-blue little boy at 3:26pm - less than 24 hours after her water broke. They brought Milo around the curtain and showed him to Shelly and then whisked him off to the NICU and I followed. His color changed quickly to a nice pink and the doctors and nurses all seemed very happy with how well he was doing.

At 29 weeks a lot of intervention is needed to help babies survive outside the womb. They have not yet fully developed their nervous system, their internal organs, and their ability to regulate their body temperature and Ph levels. Milo was attached to a CPAP device over his nose to help push air into his lungs and expand them, something babies that age cannot manage on their own. He was not needing too much extra O2 added (only 40% which is fairly close to the 21% we all need). I sat with them as the nurses did all their tests and measurements, 2lbs 14 ounces (exactly what the ultrasound technician had estimated) and 15.4 inches in length. He was beautiful and tiny and wailed hearteningly through the whole process.

After things settled down, I went back to Shelly's room where she was recovering and gave her the good news, "He's doing great! As well as can be expected this early." She had a couple of hours before feeling returned to her feet and she was able to come visit him in a wheelchair. After the visit, they moved her to a recovery room just down the hall from where they were keeping Milo in his little incubator bubble which moderated his temperature and accommodated his CPAP needs. He was doing great. We got many visitors and congratulations from friends and family. We were happy he was safe and ecstatic he was doing so well. It felt good that he was being monitored 24/7 and that Shelly could sleep how she wanted and eat anything (no more pregnancy diet, hello turkey sandwiches).

Shelly began pumping colostrum because even though Milo was getting all his nutrients from an IV, they would still be giving him her milk through a feeding tube to help jump start his intestines and get him used to eating. As the hours passed, they increased the amount of caloric intake through the feeding tube and adjusted the IV input down appropriately. Shelly was on a 3 hour pumping schedule and the nurses taught me how to get her all set up and clean the equipment afterwards so we were both up every three hours to pump and get the milk she produced to the NICU for Milo. Not the best way to get a good night's sleep but definitely a good way to prepare for having to care for a baby.

Feelings:
So nervous
Anxiety
Joy
Numb (not yet knowing how to feel)

Day -1: The Beginning

"I swear I'm not peeing on the floor," Shelly said. I was standing in the doorway to our bedroom watching her changing out of her pajamas. She had just pulled me into the back room to tell me, in private, that she thought her water broke. As she pulled off her pajama bottoms to put on her pants, she released more water. I stood there overwhelmed by uncertainty and concern, it was very clear there was something unusual going on. At 28 weeks 6 days, this was way too soon for her to be going into labor, and was I supposed to get her a bucket so she wouldn't get amniotic fluid all over the floor? Instead I just stood there not knowing what to do.

My friend Tessa was in town and she was kind enough to jump in the car with us and rush to the hospital. We tried to keep a light mood in the car but we were all worried for Milo's safety and were very grateful that the nearest hospital has a wonderful Natal Intensive Care Unit (NICU). As we arrived and got checked in, our concern rose. The nurses had to confirm it was amniotic fluid but they were fairly sure her water had broke and they told us if that was the case, we could plan on being in the hospital until Milo arrived (best case scenario, 5 weeks later once we was closer to full term), and have Shelly be on strict bed rest until then.

The doctors confirmed her water had broke and hooked her belly up to a monitor both to see his heart rate and to monitor contractions. We could hear his heart beating and it was very reassuring though we were still really scared. As Shelly began having regular contractions, the doctors gave her a pill to help stop them in the hopes Milo would stay put for a good long while.

We were really lucky to have Tessa with us because once we knew we would be in the hospital for an extended time period, she headed home and worked with Megan to pack us a travel bag. Megan, my roommate and sister-in-law, had just been through the NICU here at the very same hospital when her son was delivered 5 weeks early, just three and a half months ago so she knew exactly what we would need while we were here.

One of the games we played to pass the evening while in the hospital that first night.

The first night was scary and full of uncertainties. We had no idea why the water had broken (most likely reason is infections so they immediately started dosing Shelly with antibiotics that would help her and the baby should that be the case) and we knew the baby would likely have to come early but had no idea when. His lungs were not nearly developed enough so they gave Shelly steroids to help them develop faster and improve his chances should he need to come soon. Shelly slept fitfully because she needed to stay laying on her side to make sure Milo stayed off his umbilical cord and kept his heart rate up. Because there was no longer any fluid for him to float in, he was at a much greater risk of rolling over and pinching off the supply of necessary inputs from the umbilical cord, so the nurses would come in periodically when his heart rate dropped to have her shift positions to see if that would help. I stayed up late researching what it would mean to be born at 29 weeks. As scary as it was, our chances of having a perfectly normal baby were good. At 29 weeks, a large majority of babies can survive outside the womb and most will have minor to no lasting health issues because of it. We listened to Milo's heart beating all night and wondered how long he could stay in there and continue to develop, knowing that every day would help.

Feelings:
Anxiety over Shelly and Milo's health
Excitement over knowing the baby could come at any time
Guilt and mixed feelings about all the drugs/medicines Shelly needs to take for his health
Relief - I sent out a lot of e-mails to my work and volunteer activities telling them to count me out until this resolves, leaving me totally open to be here 100%.