lindsays blog

Day 7 & 8

The last few days are starting to blur together, but Miles is doing great.  The nurses keep telling me that he is doing everything he should be doing for his age.  Today is his 1 week birthday.. so happy birthday Miles!  My favorite nurse has been with Miles for the last two days, so I have spent both days with him, holding him and trying to breastfeed him.  His respirations are coming down, but are still on the high end of normal.  His bilirubin levels keep coming back within a normal range, so he no longer has the threat of being put back under the lights.  They have decreased the amount of air being pushed through the nasal canula and think that tomorrow they may get rid of it altogether.  They are however having a difficult time with his veins.  His IV’s keep blowing, so now he has an IV in his scalp, which is a little frightening but he seems to like to use his hands a lot, so the scalp IV will hopefully stay in place longer than it was in his arms.  For the last two days they are finally allowing me to try and breastfeed him, but he just seems still to weak and tired to try for very long.  We have been able to get him to latch a couple times, but tires after a few sucks.  But, we are making progress.  Then they end up feeding him through the tube going to his belly while I hold him skin to skin to keep him warm and comfy.  He usually falls sound asleep on me and my nurse has been letting me keep him there for a few hours at a time sometimes.  I truly believe that is what is making him so strong to keep fighting and get better every day.

As for myself, I am moving around a bit better but I think the anxiety and nervousness of leaving Miles in the hospital is being replaced by pure exhaustion, so on that note… goodnight!!!

Day 6 – the male nurse

Men just are not as sensitive as women.  Miles had a male nurse today, who was very good at what he did, but was not very sympathetic towards me.  I was able to hold Miles for his 12 oclock feeding and he fell sound asleep against my chest zipped up into my hoodie shirt.  I loved every minute of it and was sad when he had to go back into his incubator.  I told the nurse I was going to grab something to eat and would be back to hold him for his 3 oclock feeding.  The nurse’s philosophy is that these babies need to spend most of thier time sleeping in their isolette because when they sleep is when they heal and we shouldnt be holding him all day.  He didnt want me to hold him for the 3 oclock feeding which really made me upset…. don’t tell a post pardum hormonal woman she cant hold her baby because you don’t believe in it!  So I left the hospital pretty upset, but Miles was sleeping soundly in his isolette.  Mike and I are going back up tonight at 9 to hold him for that feeding which will make me feel better about the day:)

As far as Miles goes, he is still truckin…. still no additional oxygen, although his respiratory rates are still very high.  Everyone there keeps telling me that pneumonia is a very slow healing process and it may be a while before he can get control of his breathing.  It is very sad to see the muscles between his ribs working so hard to pull in breaths.  He is no longer needing the lights because his bilirubin levels have dropped to a safe level.  They will continue to take his bilirubin levels to see if he rebounds at all in which he would have to go back under the lights.  They still are not detecting the heart murmer they heard on the first few days, so lets hope that little hole in his heart is closing on its own.

Miles is so strong already, he keeps trying to pick up his head and look around his isolette when he is on his belly.  And he is showing signs of hunger like opening his mouth and rooting, although they are not letting me try and breastfeed him until he can get the tube feeding down pat and until his respiratory rates come down a bit so he doesnt aspirate the milk.  The lactation consultants there are having me give him a binkie when he is getting the milk into his tummy to simulate sucking while feeling food in his belly.  Most babies fall right asleep after some food in his stomach, but not Miles, he is too curious about what is going on around him.  The nurse left me to hold him while he got his food, and when the nurse came back he commented on how funny it was he was still wide awake looking around on my chest.  I am worried I will have two boys who are too curious about the world to bother with sleep!!!

It will be a better day for me after I see him tonight in an hour with his new night shift nurse.

Day 5

Miles did great last night.  His bilirubin levels came down enough to turn two of the four UV lights off, which is a good sign that the jaundice is going in the right direction.  He also hit a major milestone through the night… he came off of all oxygen!  He still has the nasal canula but it is only pumping through room air to help him keep his lungs open.  I think he is starting to turn the tides on this battle.

Since he is still under the lights, I can only hold him for a half hour at a time every three hours.  So, I was able to hold him when I got there yesterday for his first feeding of breastmilk through the feeding tube which goes straight to his stomach!  They are going to allow him to try milk today for the first time and watch him closely to see how his intestines react to it.  I held him skin to skin to my chest while they filled his belly.  He fell so sound asleep on me that his breathing came down quite a bit into the normal range for a while.  He seemed to content and I could have stayed there all day, but they had to put him back under the lights until the next feeding.  I wasnt able to hold him for the next feeding becuase his IV came out and they took too long trying to get a new one in him and the whole time he was not under the lights.  So for his feeding he had to stay in his incubator but I held his hand and he seemed happy.  Then the gas started!!!  He was lying on his belly and kept squirming and seeming very uncomfortable.  I had my hand firmly on his tushy to try and reassure him, and sooner or later he started tooting!  This was a good sign that the intestines were trying to work.  The nurse flipped him over and had me change his diaper and then had me hold is knees up to his chest to help him push if he had to poop.  His little face turned beat red and he got a very concerned look on his face just like his older brother does when he is trying to poop!  The intestines are working!  So tonight they are going to up his dosage of milk and continue to monitor him.

I came home exhausted after such a long day around 7:30 to an amazing meal courtesy of Kate, Jay and Ryan.  They had dropped off dinner earlier that day for us and it was such a nice treat to have a home cooked meal (not made by the hospital).  A special thanks to all my friends a family for all they have done so far and all they want to do for us.  It really makes this very difficult time a bit easier with everyone’s support.  Mom Rae also dropped everything she was doing in Fishkill NY to come and be Nolan’s constant babysitter this week.  It has been so nice to be able to come and go as we need to this week because of her help, although I think she is starting to feel the exhaustion of a 1 year old today!!

Day 4

Miles started out having a rough night last night.  I called the NICU around 11pm to check on him and they mentioned he had been very cranky and trying to get the CPAP out of his nose.  He was getting more and more distressed about it which was not helping his respiratory or oxygen rates at all.  So our fantastic nurse bugged the attending until he agreed to try Miles on a nicer form of respiratory help called the FP.  I forget what it stands for, but it is only those little nasal canula you see people wearing when they need oxygen. She said he immediately settled down and was much much happier to have that big thing off his head.  His respiratory rate did not get any worse, so the attending agreed to leave him on the FP.  Good news for Miles!!!  His bilirubin levels also jumped to an exceedingly high level through the night, levels which they told me this morning were close to needing a transfusion!  But they caught it in time and put him under the UV lights.  So, today he is tanning with his sunglasses on.  He doesn’t seem too concerned about it, but he really likes to be swaddled tightly, and with the lights he has to expose as much of his skin as possible so they can’t swaddle him.  The other good news of the day is that they don’t think they hear the heart murmer anymore and are thinking the hole in his heart is closing on its own, as it should.  As for the pneumonnia, his respiratory rates are still very high and his blood work is showing increased inflammation so they are considering him “stable” right now.  No better and no worse.

I was fortunate enough to arrive today right when the nurse was giving him some meds and was about to change his diaper so she let me do it!  It is amazing that the little newborn diapers totally drown him.  He is such a little peanut.  I was able to take his armpit temperature and help keep him calm while she took his measurements.  This was the most I have been able to touch him so far and it gave me so much peace to have my hands on him and comforting him.  The nurses always tell me that he hates having his diaper changed and lets you know it, but for me he didn’t cry at all!  Maybe he knew it was his momma doing it.

He had a decent rest of the day, and when I went up there tonight with my sister he was lying comfortably on his belly just hanging out.  The nurse told me his oxygen levels were set at the lowest they had been all day and he was able to maintain the correct levels!  I hope this trend continues through the night.  His bilirubin levels are also starting to come down nicely, and hopefully he wont have to suntan for too much longer.  He is still not able to eat because of his increased respiration rate, so he is losing weight every day but the antibiotics should start taking hold soon and he can start working on other important preemie tasks like learning how to keep his body warm and how to suck, swallow and breathe at the same time.

My sister and I spent some quality time together tonight which was badly needed.  I took her up to meet her nephew for the first time and really enjoyed seeing her reaction towards what he looks like.  She just kept saying how cute he is.  And he really is incredibly cute.  He doesn’t look weak and worn, he looks strong.  It was really nice for her to see where he was and what exactly I was dealing with.  I know it is hard for lots of my friends and family to visualize where he is and what is happening to him, so it is nice that my mom and sister have now met him so when need their support they are better able to understand what is happening to him and us right now.  Thank you to everyone else as well for all the good wishes and offers to help.

Tonight Miles is going to rest well and start to kick this pneumonia in the butt.  I am looking forward to seeing him tomorrow because if he is no longer needing the lights for his jaundice, I may be able to do what they call “kangaroo hold” with him.  I wear a zip up shirt and tuck him down against my chest skin to skin and hang out in a comfy chair as long as he will tolerate it.  I can’t wait to snuggle him.  My hope is that it will be tomorrow:)