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.

Day 58 - On the Edge of Our Seats

Milo contemplating whether or not he wants to breathe all on his own

Now that Milo is so close to coming home, there are a lot of final tests they have to run. For every test there is the possibility there will be a new complication we will have to handle so we have been on the edge of our seats not only to find out if we really can go home this weekend but also to find out if he passes all his tests.

Test 1: Heart test - for this one they put the device that measures blood oxygenation and heart rate on a hand and a foot to see if the two readings would match. They did and he passed.

Test 2: Head ultrasound - they covered his head in goop (just after his bath) and took some images of his head. He didn't mind and the results came back the next day. Totally normal.

Test 3: Physical therapy - they ran a series of tests to see if he would curl his fist up towards his face when they pulled it away, if he would kick his legs with stimulation, if his startle reflex was symmetrical. He passed, though he was a little weak on the kicking reflex.

Test 4: Hearing test - the technician put yet more goop on his head and played sounds in each ear that sort of resemble white noise while she looked at his brain patterns. His left ear passed but his right ear did not get a clear reading slash did not pass. They assumed there may be liquid in his ear or his heavy breathing could have affected the results so they rescheduled for two days later and he had the same results. There is therefore a possibility he has some hearing loss in one ear and we will be following up with an audiologist once we go home. There is a large chance he does not have any hearing loss however and even if he does we know it is minor because Shelly and I have seen him react to our voices and become disturbed by noises in the room.

Test 5: Carseat Test - We expect to do this test the day he heads home or just before. Milo will need to be able to sit strapped into his carseat for an hour and a half and maintain his breathing. This is important because some babies do not have enough neck strength to keep their airways open while in a sitting position. We hope we can time this test right so it doesn't coincide with much gas because that always makes him struggle to breathe just by itself. If he does not pass they will likely try again the next day and if we can't get him to pass after a couple tries, they will send us home with a "car bed" that can be used for limited travel like from home to his doctor's appointment.

We were feeling pretty hopeful that Milo would get to come home this weekend since he has not had any spells lately. He has still been desatting and sometimes it comes with a drop in heart rate but he always manages to right it himself without our help (thus not qualifying as a spell). However, this morning his nurse mentioned that they were still wanting to observe him because of all the desats and she wasn't certain we would be able to leave quite so soon. We are waiting for his daily visit from a doctor to ask her how soon she thinks we can be discharged.

Day 56 (Week 8) - Pretty Please

Milo has been doing great! He was given permission yesterday to switch to all oral feeds whenever he showed that he wanted them (with some rules like a minimum amount per 12 hours and not going longer than 4 hours without eating). He rocked it and actually almost doubled his 'minimum'. They took his feeding tube out and we've been tube free ever since. He is still on the monitors until he comes homes but every victory counts. Most babies only stay a day or two after getting to this point to make sure they can gain weight while eating all their calories. Milo has been gaining weight - more than required since he is eating more - but he still has to wait until his caffeine countdown ends to prove he can breath on his own and ensure we won't run into any difficulties at home.

Today he ate well until this evening when he had a bit of a disappointing feed because he was working on some poop and can't manage to eat, breath and poop at the same time. He only ate just a bit more than half what he normally does. We were a little concerned until his next feed when he woke up, downed the normal amount (normal for him means 75ml not his nurse-given allotment of 51ml) and then stayed awake for 2 hours and ended up demanding more food so we gave him another 30ml before he passed out. It was so fun to see him be awake for that long - we talked to him and had some very good eye contact!

Milo learning to hold in his own pacifier (he's not very good at it yet)

If all goes well with his breathing, we will be home by this weekend. We have taken turns over the last couple of days going home to clean and set up our house. It's all ready to welcome us home and we can't wait. We are still a little nervous to have him at home but we went ahead and bought a special monitor sock that tracks his oxygenation and heart rate just like they do at the hospital except wirelessly. We plan on watching Milo closely during the day but having the sock on him at night will allow me to feel like I can sleep knowing the alarm will wake me up should he stop breathing. It was a little expensive but Shelly and I agreed that it was worth it to have the peace of mind. What really sold us was one of the reviews written by a mom who had a son 8 weeks early who was prone to acid reflux (just like Milo), she woke up to the alarm and found that her baby had formula coming out of his nose and mouth and couldn't breathe. I figure we will probably gain confidence and not need the sock for very long but having him completely to ourselves for the first time will be a lot easier with it than without it.

Day 54 - Still Struggling

It has been four days now since Milo has had his caffeine. The nurses put us on a ten day countdown and are watching closely to make sure he will start breathing normally on his own. On day 2 of no caffeine Milo began struggling to breath around the same time in his sleep cycle every time. It is pretty much the most stressful thing to have to listen to. He forgets to breathe consistently and so will not breathe, not breathe, not breathe, and then start panting to catch his breath before repeating the cycle. What makes it even worse is that he is still learning how to breathe versus swallow so often when he gasps for air, he has his throat closed at first and makes a couple squeaks before actually getting a breath of air. He did this today while I was holding him and turned a disturbing purple before I laid him down on his back and he started breathing again. The doctors are unconcerned and promise us he will grow out of it soon but for now it is a very uncomfortable habit.

Since this is normal preemie behavior, they tell us that he is actually doing fine (no need for the caffeine back and no real need for the cannula back unless we want it to feel more comfortable). This lack of breathing can also cause his heart rate to drop. If his heart rate drops and he doesn't get it back up by himself, instead requiring stimulation to remember to breathe, they call that a "spell". This has happened a couple times in the past few days and every time he has a spell they put him on a 5 day countdown. He will not get to come home until his caffeine countdown is completed and he makes it through his last spell countdown. To be honest, if he is going to continue to have trouble breathing for a bit, we are just as happy to be here hooked up to the monitors.

Now for the good news. He is eating so well! He now oral feeds three out of four meals and has consistently managed to take all of his feedings from his bottle in 10-15 minutes. He has completed one full breastfeed as well but usually he will get about half on the breast and complete the feed on his bottle afterwards. He also sometimes still shows signs that he would eat more after he completes his allotted amount so we got his doctor's permission to offer him extra each time if he wants it.

Though, we are glad to have him monitored at all times. Shelly and I are getting fed up with his nurses. Whether they are warning us repeatedly not to tire him out (related to offering him extra food when he clearly is still awake and searching for food after his feeding) or leaving him on his back after a feeding in the middle of the night so we wake up to him struggling to breathe and having desats and bradys, or just telling us that we shouldn't dump any of the milk Shelly makes because some day we will need it when he is eating more than she can produce (she makes 6 ounces every three hours - he is not going to need more than this until he is old enough to eat real food too. Not to mention her milk supply will match his needs - the nurse obviously doesn't know what she is talking about). Our experience here these last couple of days has been pretty stressful and it hasn't helped that since we are doing more of his feeds orally, I am up with him throughout the night and getting less sleep than I am used to.

My phone broke (it has been struggling to charge for days now and finally gave up and ran out of battery). I have ordered a new phone but until that arrives and I get it set up, I will be easiest to contact via Facebook and not as able to take and post pictures.