Day 76 - T Minus 1 Day

Tomorrow is Milo's Birthday! Or at least what would have been his birthday if he had had the patience to wait in the womb. Week 40 marks the beginning of his count up to mile stones. When you are working with a preemie baby, you watch for their achievements based on adjusted age, that is the age he would be if he were born tomorrow. For example, today he is minus 1 day old adjusted though he is 10 and 6 days weeks actual. For the first two years of his life, we will be judging things like his development, when he can start foods, and doctor's appointments based off of his adjusted age. After he is two years old, it doesn't really make a difference anymore and we can start judging all those things based off his actual age.

We went on a walk today. The weather was gorgeous, the sun was out, and the stars aligned timing-wise for Megan, Oliver, Shelly, Milo and I to all get out of the house for a bit together. The new stroller we have is excellent for walks and Milo slept the whole time, cozy and warm in his little stroller nest even though it was pretty cold outside (special thanks to his GG-Ma and GG-Pa for the stroller and his Nona for the carseat that fits into it).

Mamas Club

Milo has been doing really well and is still eating and sleeping great. In fact, the other night, my alarm didn't go off and he ended up sleeping 5 hours between feedings instead of the 3-4 that was recommended by his pediatrician. He was very hungry when he woke up but other than that we saw no ill effects. He eats so well and sometimes will eat again after 1 or 2 hours so he is definitely getting enough nutrients. I've been setting and double checking two alarms ever since then though as he really shouldn't go that long too often because he can get dehydrated pretty quickly at his size. I have also been letting him keep his hands out of his swaddle even though he doesn't fall asleep as easily because he is more likely to wake me up hungry if his hands touch his cheeks and remind him. I am really looking forward to when he is just a little bit bigger and is cleared to sleep as long as he wants between feeds. I suspect it won't be long from that point until he is sleeping through the night.

Cute Hat Club

I am also glad to report that he seems to be adjusting to falling asleep flat on his back. He still doesn't really like it when he has gas but last night I was able to put him down in his crib and he just hung out quietly awake for about half an hour before falling asleep. He has had longer and longer wakeful periods which makes it really fun to talk and sing to him. This evening, he at an extra big meal, like he has been in the habit of doing right before bedtime (which makes it great for letting him hit four hours of sleep during the first part of the night). In fact, over the course of an hour he at double his normal feed amount. After which time, I set him in his bounce chair which he usually loves but he was all wiggly and awake so I picked him up to snuggle him and put him on my shoulder in burp position which almost always conks him out but he continued to wiggle and struggle until I put him flat on his back at which point he fell straight asleep. I took this as a sign that it was time for bed and put him down in his crib where he quickly passed out for the night.

How Milo Sleeps Now (except in his own bed not ours)

We are really looking forward to Christmas and Shelly and Megan have begun decorating the house. It looks great with all the lights and several mock Christmas trees with ornaments since we don't plan on having a real one. Milo even got a couple ornaments attached to his mobile and he has shown interest in looking at them.

Christmas and a new bounce chair

After almost two weeks of being home, we have gotten into a bit of pattern and even had time to access and change our habits for things that won't work longterm (like how we separate clean/dirty bottles, and how many paper towels we've been using). We have also started setting in writing one or two things we would like to accomplish each day. It is incredible how quickly a day goes when it is broken into three hour chunks with each chunk requiring a feeding, a diaper change, and an indefinite amount of snuggle time. I feel it especially as I have been sleeping in until 10 or 11 (sometimes 12) to make up for getting up with him in the night. I generally wake up, have some coffee, hang out with Milo for a bit, and then glance up to notice it is getting dark outside at which point I generally lose all motivation to accomplish anything and choose to spend the rest of the evening cozily on the couch. Last night, I broke the cycle by having a late evening coffee and managed to do fold some laundry, but I really hate that it is getting dark so soon.

Cute Socks Club

In any case, on my to-do list for tomorrow is to finally sit down and write some Thank You letters for all the amazing support we have received from family and friends. I am sorry it has taken this long as I really hope people understand just how much we appreciate all the baby things, food, and words of encouragement we have received. There are so many people who have been so kind to us that I may not be able to get to all of them tomorrow but I will keep chugging away and hopefully get them out soon (although, I may delay even further if we get a really good family photo tomorrow and I decide to include a copy for people).

Megan working from home (and Oliver posed to look like he is involved)

As we start to feel relaxed here, we must remember to stay on high alert for all germs. Milo may be getting bigger and stronger but a simple cold could really set us back and potentially send us back to the hospital if it diminished his ability to breathe. We have really been thankful for everyone's understanding of our concerns and willingness to stay away when sick and follow our hand washing/touching policy. We have our fingers crossed that we can make it through this cold and flu season without an incident and give him some valuable time to develop an immune system and strengthen his lungs.

An old picture of Oliver just for fun (he picked that outfit)

Day 74 - Thanksgiving

Something is a foot

Everything is still going well. Milo continues to eat well and grow everyday. He is getting better and better at getting his fist and thumb in his mouth and really calms down when he has it there. We suspect his vitamins give him really bad gas that seems (to his tired moms) like it is constant. We forgot to give him his vitamins for a day and the next day, when we gave them to him again, he had intermittent gas which would make him shriek once or twice as the air bubbles audibly rumbled around his little tummy. Poor baby, he almost never cries. When he is hungry he will just grunt at us and make sucking movements with his mouth but when he is gassy all bets are off.

Thanksgiving was nice. We had Llupus and Matt over the day before Thanksgiving for food and games and then for Thursday, we went to Shelly's dad's house for lunch with just her mom, dad, and brother. We were worried about hosting something too big and exposing Milo to germs so the small group events were perfect.

Thanksgiving Morning 2016

Christmas is coming so we added some things to the registry that Milo needs based on our new experience of having him at home including some more warm clothing, a playpin for tummy time and a lightweight stroller for short trips (we love our heavy duty stroller for walks and longer outings but it is a tight fit to get it into the car). If anyone is thinking about getting Milo or me a present, feel free to do it from the registry - Here is the link.

We haven't been letting him have too much contact with his cousins because they could pick up a cold from the kids they sometimes visit. Megan has been very considerate and has even gone so far as to limit their exposure to other kids for us meaning we all spend most of our time at home together. We couldn't resist this photo op for our future amusement and size comparison. It should give you a better idea just how tiny Milo really is still. Keep in mind, Noah is large for his age.

If only Milo had been covering his eyes, we'd have three little monkeys

Since it is fall, we have been designing Milo's outfits appropriately. Thankfully, he doesn't mind when we dress him up.

Getting dressed for Thanksgiving with Shelly's family

Orange and Green Themed Baby

Milo practicing his "ate too much on Thanksgiving" look

We've had a great first week home with Milo. I feel so very lucky that I can take this time away from having to work to really dedicate my time and attention to getting to know Milo. We are settling in and creating a pattern that works for us (and of course taking lots of photos).

Learning the best position to sleep a gassy baby

Milo's first ride in his Ergo carrier for a trip to the store

Oliver playing with his new microscope

Noah's shocked and surprised face

Echo enjoying all the new places to sleep

Another day, another cute outfit

Earning the nickname "sMiles"

Miles scheming

Miles' "suspicious" face

"No more picture, please."

Day 68 - The First Week of the Rest of Our Lives (Get Ready for Picture Overload)

Nov. 17 - Going Home Outfit

Heading out the door

Remembered the hat

Milo recovered so well from his surgery! The day after, he had some trouble getting his oxygenation up when it would drop but the doctor assured us that was just the anesthetic wearing off and sure enough, by day two, he was back to his old self, breathing and eating great. The doctor had us wait until the afternoon of the second day and we were free to go. I spent the morning running around frantically packing, I was so excited I was shaky.

We got lucky and our favorite nurse, who usually only has night shifts, was randomly there and got to be the one to help us leave and receive the thank you card and gift basket we got for the nurses. She saw us all packed up and walked us out to the car.

The first day went great. Shelly and I, working together, made easy work of settling in (though we are taking it bit by bit to unpack all our stuff). Milo is adjusting really well and is a very easy baby boy. He'll only really fuss when he has gas and other than that, he is eating great (more and more each day) and sleeping through pretty much everything. At night, I am taking the one or two feedings between bedtime and 7am and then Shelly takes him in the morning so I can catch up on the sleep I miss.

The outfit I picked for his middle of the night feeding

We did have a bit of excitement the day after we returned home when his bandage from his surgery started to come up. They told us that if it came up before Thanksgiving we should return to have it replaced. The doctor had put some sticky residue under it to help it stick and that caused it to stick to his leg when he would curl it up. It seemed super uncomfortable so with the blessing of his nurses we started putting coconut oil on his leg to help it not stick. We think the coconut oil caused his bandage to start to come up though and when we called in they recommended we go to the emergency room since surgical didn't have any openings. So after his next feeding we spent a couple hours with a sleeping baby at the ER (they got us into a private room right away thankfully) just to have a doctor finally come in a put a couple strips right over the last ones. He also sent us home with some in case they start to come up again. On the bright side, he is no longer sticky and we got a new weight for him - 7 lbs 1 oz!!!

Our first snuggle at home - no cords!

The weekend went really well. We've had several family members come visit and have mostly just spent our time settling in, unpacking, cleaning, and pretending to be a bed for Milo. Oliver and Megan are super excited to have us home and it is so nice to have their company and support again.

Heading to the emergency room for bandage control

Today was his first follow-up appointment with his pediatrician, Dr. Hough (pronounced "huff"). Milo did great again, he slept for the car ride and was awake for most of the appointment just hanging out. They measured him and weighed him (7 lbs 4 oz) and answered all our questions. Dr. Hough seems nice and we really like and trust him. We will be back next week to continue tracking Milo's health.

Milo being held by his Ama for the first time

Invisible Piano

Aunt Megan holding Milo for the first time

Relaxing with Milo, coffee and Scrabble

Teaching Oliver how to play Scrabble

Baby caterpillar in his bounce chair

Uncle Dan holding Milo for the first time

Uncle Dan and Oliver with Milo

A picture for every outfit because he is SO cute

Trying out our cuddle shirts

A great picture for size comparison when he is in this chair months from now

Bottle feeding together

Milo and his cousin Noah on November 17, 2016

Noah wondering what is going on in the carseat next to him

All three boys

Oliver scoping out a sleeping Milo while Noah points at his mouth

Day 63 - Better Than Expected

Milo's surgery went really well! I didn't sleep at all the night before. We were so tired after his botched IV attempt that lasted from 1:00am to almost 3:00am with him getting poked over 16 times from three different nurses and freaking out every time. It was emotionally exhausting but we knew if he didn't get the IV he would get dehydrate if he didn't eat and we wouldn't be able to have him have an empty stomach the next morning which would mean putting the surgery off and trying the whole thing over the next time. When the nurses couldn't get the IV, we fed him one more time and they connected with the anesthesiologist who said we could cut his food at 3:30am and they would put the IV in when they knocked him out (this would be much easier as they could use a vein in his elbow which they can't do while he's awake because his reflexes cause him to curl his arm in very tightly when he is upset).

So I fed a very tired out and shocked baby until 3:30am and then I cuddled him skin-to-skin until it was time for him to go to surgery at 7:00am. I felt so bad about the trauma of the IV and he kept doing the saddest little shaky inhale :(

Milo after surgery wearing his funny hat

Around 5:00am he started to get hungry again as he had not had time to complete a full feed at 3:00am. I rocked him and snuggled him and was glad it helped soothe him and he didn't get too angry. At 7:00am the nurse came and took him and told us we could go wait with him in the NICU once he got settled. We arrived at the NICU to find he had his IV in his head! The nurses there got it on the first try while he was awake. We had a brief consult with the surgeon, enough time to grab coffee and breakfast and pump and then the surgery was over and the doctor told us he did great (and that he is super cute). Milo was already waking up when he got back to the NICU. He was breathing normally on his own (we were so delighted and relieved he had not relapsed on breathing like we had feared) and already showing signs he was hungry. The doctor there had us wait until 11:00am to feed him though so his tummy could have a chance to wake up. After the surgery the doctor applied some local anesthesia on his surgery site and after that all he needed was some oral tylenol every six hours. He had some morphine available if he needed it but he didn't seem to be in that much pain.

I held Milo skin-to-skin late that morning so Shelly could get a nap in. She had only slept a couple of hours the night before and was really tired. After her nap, we headed upstairs and she took over with Milo while I slept hard for 4 hours straight. When I woke up he had is IV out and was eating normally. Shelly took the 11pm feeding as well and I went back to sleep until his 2am feeding. After that, I felt super well rested - those were the longest chunks of sleep I've gotten since I had food poisoning. I took all the night shifts even going later than I normally do and handling his 9:00am feeding as well so Shelly could catch up on sleep. No we are both cheerful, rested and excited for the doctor to come in and tell us if we can go home tomorrow (and what time we can leave!!)

Day 61 - 2 Months Old (2 flights, 2 surgeries, and 2 worried moms)

Milo is gaining weight so well! Today he weighed in at 6 lbs 10.5 oz and has been gaining about 2 ounces per day. He also is eating so much more than the minimum he needs to gain weight, today he capped his record by eating 110 mls and seeming like he could have eaten more. I love that he can eat so well.

Milo enjoying his car seat for the first time

All last week, we were on the edge of our seats to see if he would outlast his spell countdown. Saturday was his final day meaning he was good to go Sunday if nothing went wrong. In the afternoon on Saturday we did his car seat test, 90 minutes of sitting untouched in his car seat and proving he could breath the whole time. He was awake for some of it and asleep for some of it but he passed with flying color (he almost seemed to breath better that way than lying flat on his back). We were so excited, that was his last gauntlet before getting official released the next day. His doctor did her rounds just after the test. She was doing her final check when she noticed something she had briefly seen the day before (and hoped wasn't real) - traces of an inguinal hernia. They called in the ultrasound crew that night and confirmed that he had an inguinal hernia on his left side allowing his intestines to slip downward through an open pathway that often fails to close up in preemies. The fix? A quick surgery to sew closed the gap.

We enjoy the variety of cute outfits the hospital has on hand

We were of course pretty disappointed that would mean not only staying through the weekend to do the surgery early that week but also waiting here through his recovery - an indefinite amount of time anywhere from 24 hours to over a week depending on his temperament. The procedure is fairly simple but they need to have him not eat prior so he doesn't risk aspirating while he is intubated therefore requiring an IV to help him stay hydrated and keep his blood sugar up for the 6 hours he won't be eating before his early morning surgery.

Milo resting up before a long night

The surgery was scheduled for Tuesday morning at 7:30AM and by Monday, Shelly and I had fairly come to terms with the idea of not getting to go home on Sunday like we had thought. Of course it is very very good that they found it before sending us home for many reasons including the risk of causing his intestines to get stuck and begin dying, the fact that a planned surgery is much better than an emergency surgery, and our rooming situation being way nicer staying here in the special nursery with him than it would be if he was released and then came back through pediatrics.

Miles suspecting he might be hungry soon

Milo is doing so well, we have high hopes that his recovery will go smoothly. We are having a rough night already though expecting to have a very angry and hungry baby on our hands by the end of the night, not to mention the IV process which is still underway after over an hour of trying. Three different nurses have poked him over 10 times but they are still unable to settle the IV, something about his veins always blowing when they start the flush. I started out the process standing with him and helping to comfort him but after a while it was too much to stand there and I retreated to distract myself on the couch and wait for it to be over. More news soon, hopefully about how the rest of the process went smoothly and he is recovery beautifully.