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.

Day 50 - Up All Night (Feeling Like a Real Mom)

Summary:
Milo weighed 5lbs 8oz (this was two days ago, he'll have a new weigh in tonight)
Milo is off the cannula
He is out of the isolette
He had some issues with reflux causing congestion
He will come off the caffeine soon
We could be out of here anywhere from 10 days - 3 or 4 weeks

Happy Halloween. A friend of mine (Sarah Pretty) made us a little Harry Potter cloak for Milo which inspired Shelly to go all out. We dressed Milo up and got some great pictures of him.

"The Boy Who Lived"

Two Moms? Get Used to Playing Dress Up

Just after Halloween, the cannula came out. The doctor came in a couple mornings ago without any ado just as we were about to feed him and took him off the cannula. We haven't looked back. Well maybe once but that came a couple days later and we'll get to that.

Because he was off the cannula, we got to give him a wonderful bath. The nurse gave him a tube vacation and took the feeding tube out for the duration. We put him in a little tub in the sink filled with warm water and he loved it. He totally relaxed and floated wide awake. We got a lot of smiles too.

Pampering the little one

He did great off the cannula (Shelly and I half suspect it was hindering more than helping as he tended to dislodge it constantly and then it would block his nose instead of blow air into it). The other big change is that since his breathing leveled out - previously when he was breathing really rapidly the doctor ordered him uncovered in his isolette so they could keep an eye on him - they were able to test him again with the isolette open and he passed. The isolette was removed a couple days later and he is now the proud owner of his very own plastic tub on wheels... or "crib".

It really makes the room feel bigger.

He would fit right in the corner now... but nobody puts baby in the corner

I thought I was going to enjoy the crib so much but instead I hate it. It feels like he is always too close to the hard plastic walls and he wiggles so much when he has gas that I fear he will squish his face into it or hit the top with his head when he kicks. Also, the sides of the isolette folded down so you could interact with him on his level. This was great for changing his diaper, dressing/swaddling him, and picking him up and putting him down with ease. The "crib" has high walls that make you have to bend your wrists at odd angles to get him in and out and there isn't enough room to fully spread out the swaddle to receive him. While I felt good about putting him back in his isolette because it was quiet and warm and cozy (he had blankets, bean bag sacs to contain him, and a pleasant incline), I feel very hesitant to put him back in his plastic tub which is just a flat mattress and since they are working on training him to come home, he has to follow the "safe to sleep" rules - flat on his back, swaddled, with no pillows etc.

And then yesterday morning we put him down flat on his back after a feeding and he started desatting a lot. He kept struggling to breath until I picked him up and held him in the cradle position at which point he calmed down and breathed normally. The nurses have been suctioning out his nose to help him breath because he gets congestion that makes it a struggle for him sometimes. They have been having to do it more and more often because it seems like he is always congested. That congestion combined with a gassy tummy to cause him to bear down and not breath for a second and then gasp but still not be able to breath due to the stuffy nose. It was a miserable couple of minutes. I held him for a long while after that, in fact Shelly and I traded off and held him the rest of the day. He did great and showed no more issues.

We consulted with his doctor and told her how he does better when he is at an incline (like when he was in the isolette or being held) and she recommended we try sleeping him based on the reflux protocol. Basically, this means we sleep him on a little pillow on his stomach or hold him upright on our chest after every feed for at least 30 minutes. It turns out the reflux causes some of his milk to get into his nose when he lays flat on his back and that was causing the excess congestion. We decided to hold him all day (the breathing issues always make me want to hold him and never put him down) and to try him on his little pillow for his night feedings. He is so much more comfortable on his tummy on his little pillow, I am really glad that is still on option for him.

I tried to go to bed early knowing I was on duty to bottle feed him at 11pm and again at 2am or 5am depending on his cues. Shelly and I have worked out a plan since she sleeps very heavy at night and I am more likely to wake up to Milo's needs: I bottle feed him twice during the night and she breast feeds him twice during the day and we play it by ear with any other feeding needs. So I tried to go to sleep at 9pm but failed and around 10pm realized I might as well just stay up until his 11pm feeding. He did well on his bottle and then I held him on my chest, per the reflux positioning suggestions until 12:30am.

He got pretty sleepy but when I put him down in his crib, he started snorting and sounding congested again. He didn't desat though so I left him to sleep since he seemed comfortable. His noises kept me from sleeping very soundly but I managed a little rest until his 2am feeding. We decided to give him that feeding through his nose tube (he is technically allowed 3 oral feedings out of 4 per shift based on his cues so this was the feeding we chose to skip). I held my hands on him for a bit with the pacifier until he settled down and managed to get maybe 2 hours of sleep before 4:45am at which point he was scheduled for what we thought was a heel prick to test his anemia. Instead, they needed a lot more blood (1.5ml instead of just .5). I held his hand while they tried taking the blood out of a vein in his arm and when that failed, they got it out of a vein in his head.

He was only slightly annoyed at them and managed to take half a bottle feeding from me afterwards. I felt pretty bad about all the blood they took from him though because he anemic, I am still waiting to hear back from the doctor on why that was necessary (I kind of think it wasn't what the doctor had intended when she ordered the tests but he seems to be handling it ok for now). The results of the anemia test show that he is ever so slightly less anemic. Really just a couple tenths of a point better but since he is growing, it is great news that he has not dropped anymore. I held him skin-to-skin until his 8am feeding at which point I woke up Shelly to breastfeed him.

He is still doing well today. We have him swaddled and lying on his stomach. I absolutely love how much he enjoys when I touch him. His pacifier fell out and he started crying. All I had to do was walk over to him and place my hand on his back and he calmed down and went back to sleep. It feels like he needs us so much more now than he did when he was back in the NICU. Shelly and I are careful to always have one of us here to comfort him now. Shelly took off for the morning to do more prep on the house so I am here watching Milo sleep comfortably.

If all goes as well as it possibly could, he will stop his caffeine today, do his mandatory ten days off caffeine to make sure he is okay without it, during that time work his way up to full oral feeds, pass his carseat test, and head home on November 13 or 14. Any of those steps could be delayed for a bit depending on him and his doctors. If he fails to breath well off the caffeine they will put him back on the cannula. As much as we hate this idea it is better than putting him back on the caffeine since as I mentioned they have to wait ten days to know if he is okay without it (seven days for it to clear his system and three days to make sure he doesn't tire without it) and the cannula can be tested off at any time. Worst case scenario, they can actually send us home with the cannula if we need it. They wouldn't do this until he reached 39 weeks on November 23 so hopefully, he won't need it and we can get out of here sooner.

Miles smiles at us so much - our little rewards for going through this journey with him

We are feeling good about our progress and also facing one more difficult stretch as we start to count down until we get to go home and any little upset has a direct effect on that timeline. We are rooting for smooth sailing and a ten day count but in all likelihood, we'll be looking at a bit longer than that.

Day 46 - Making Progress

This baby smiles so much

Today the doctor surprised us by popping in as we were getting ready to breastfeed Milo and with very little ado, removing his cannula. He seems to be doing quite well breathing without it. To be honest, it was on just a very little flow of regular air and sometimes it seemed like it hindered him more than helped especially when he would wiggle and get it out of position. We are so happy! We get to unplug his monitors to weigh him prior to and after breastfeeding (a very inaccurate measurement of the amount he eats that way) and now that he is off the cannula, for the first time since he was born, he is completely unattached to the bed/wall/breathing support.

He also spent the night with the lid off his isolette as a test to see if we can put him in a crib instead of an enclosed heated bed. He kept his temperature perfect and has been in the open isolette ever since. This makes it much easier to interact with him but harder to remember to wash our hands prior to any interaction and makes him more open to light and noise we make while in the room.

Sleeping in the open air

He is up to 4 feedings per day and has been slowly getting better at breastfeeding. He got nearly half his allotment last time he tried! If he can manage that four times a day (on either breast or bottle) he will graduate to the next level of 6 times per day and after that, he will graduate to eating whenever he wakes up and asks for it. Once he is doing that, it is only a couple of days before we head home. At this rate, we are looking at a week or two before we are released.

Day 44 - Waiting Game

Milo weighs 5lbs 3oz. He has been gaining about 2oz a day! Now we wait. He is working on overcoming his anemia however it is slow going and the doctor tells us he probably won't have completely overcome it even by the time they send us home. Since making red blood cells is slow work and he is growing so quickly and thus increasing his need for red blood cells at the same time his body is trying to create them. The caffeine they gave him helped him get through the worst of it (or so it would appear). He has another test on Thursday to see how his levels look. Even a slight increase in his numbers will have a huge effect on his energy level. For now, he has more energy every day and has been cleared to try to oral feedings 3-4 times a day. Considering he eats 8 times a day, we are pretty excited to be "halfway" there (he hasn't yet been awake for 4 feeds a day but we have permission to try as soon as he is. He usually is awake for 3 of them).

Better not try to steal my baby, he's wearing a security anklet

We had our obligatory discharge class on Wednesday. We learned how to position him to sleep, how to use his car seat properly and other tips they have to tell us before they send us home just to mark off their list that they told us (stuff that should be common sense but you never know like don't shake your baby and don't leave the baby in the car). We also had a meeting with Milo's doctor which was much more individualized. She told us that based on his progress, she expects him to be home between 37 and 40 weeks (he's 35 weeks as of Wednesday). Though it was good to have a chance to ask all our questions, she stressed me out by telling us a lot of worst case scenarios about his hearing, lungs, future health etc. She really could have done a better job to reassure us since Milo is not exhibiting any problem behavior yet. We understand that there are a lot of things Milo will have a higher risk of encountering because he was premature but boy was I more stressed after that meeting than before.

Sleeping, the #1 job we've assigned Milo

And I was stressed before the meeting anyway. I finally realized why I am so uncomfortable here. I thought it was because I didn't like the nurses looking over our shoulders all the time and being the expert on my baby even though we know him really well and are able to tell them things about his behavior. But it turns out what I really don't like is how every nurse has a different method and rules so I spend each shift learning how this particular nurse prefers we do things and then the next one comes in and tells me I'm doing it all wrong (they are never mean about it, but I am perhaps overly sensitive to doing things wrong). In any case, I will be so relieved to be home where Shelly and I are the experts in Milo's life and no one will be coming in and telling us we should hold him this way or that, feed him less because he's tired, not open his isolette ourselves because parents aren't allowed (despite the fact that about half the nurses encourage us to do it). These are all things we know and can figure out for ourselves with Milo's help. The nurses here are used to parents who just dropped in every now and then and are not very good at reading the baby's cues so it makes sense they would behave the way they do.

Of course he stopped smiling as soon as I pulled out my camera

Day 42 - Eye Can Go Home Soon?

Yesterday Milo weighed in at 4lbs 15oz. They weigh him every other day but I am confident today would mark his entrance into the 5lb club!

Today was the long dreaded follow-up eye exam. Milo was seeming to return to normal after the incident that caused us to find out he had anemia Monday morning but Shelly and I were both very worried that the eye exam would upset him like it did last time and set him back in his progress. He was scheduled for early this morning so I woke up and tucked my bed away so we would have room to move around and I could comfort him during the exam.

It was trippy to watch, they numbed his eyes and then levered them open one at a time with a tiny device. Meanwhile his nurse had him swaddled and held his head completely still and I tried to offer comfort the best I could by holding his feet. The hardest part to watch I think was when they put a tiny little instrument in next to his eye to move his eye into the proper position to see. These eye exams are done in a series and can sometimes take three or four but the Dr. doing the exam said his eyes are mature! She spent a couple extra seconds on each eye examining a different quadrant so we could be done with eye exams for good. Milo passed with flying color. It took about 10 minutes and he was less upset than he was the night before when we gave him a sponge bath. He was wide awake for a bit, had a really good restful period and was back to his normal self and ready to try nursing again in the afternoon. Looking back, it is kind of funny because I didn't even think to be worried about the results of his exam, I was preoccupied worry about his reaction to the exam.

We are settling into our routine here pretty well. The hardest part is feeding ourselves. We have a mini-fridge in our room that freezes everything and access to a communal fridge that works a bit better. We also have a microwave as our sole option for heating food and no garbage disposal (aka no good place to do dishes). Any time we are blindsided by the need for a meal we didn't pre-plan, we either order something from the cafeteria or have to venture out to get food. It is getting harder and harder to leave Milo. Even though the nurses always take good care of him, he is awake more and more and growing more likely to cry when he wants something. I worry that if we are not here, he may have to cry for a bit before anyone would notice.

Follow-up:
I fed him his bottle today. This marks his second venture into bottle-dom. He almost ate his entire feed! I think he had a couple ml left that he couldn't get out because it was the dregs of the bottle. We are so excited. He also gained 2.5 ounces since yesterday which puts him now at 5lbs 1oz. That is a huge weight gain and we attribute it to the fact that they aren't very good at measuring the amount of milk he gets at the boob so they fed him more than his allotment a couple of times.