lindsays blog

Day 9

Miles had a great night… they took the nasal cannula out and he is breathing on his own!!!  His respirations went up slightly after they took it out, but they said as long as he doesnt look like he is laboring for a breath, such as flaring his nostrils or having the muscles in his rib cage show, they will leave it out.  The IV in his scalp blew again last night, so now he has one in his foot.  Because he seems to be going through IVs every 8 hours or so, they have decided to discontinue his IV fluids in an effort to save this last IV site for the antibiotics he is getting.  He is on day 9 of 10 days of antibiotics, so as soon as he is done with them, they will pull all IVs and hope that he wont need another one to give his veins a rest.  He will be much happier without all those tubes!  He is 2 ounces shy of his birth weight and is gaining every day.  They have increased the amount of breastmilk he is getting every three hours to an ounce and a quarter.  We are also continuing to try and breastfeed him, but he just seems too tired to try for very long.  He is slowly getting better at it though.  Today he latched on and sucked for about 30 seconds… a record so far.

We also put some clothes on him today and he looks so darn cute.  He is so long though that although the preemie size is really big around his waist, his arms and legs fill it out completely!  What a big boy:)  He wont be in preemie size for long at the rate he is going.  His temperature is also taken every hour and all day today he was very warm, so my nurse mentioned they might move him from his isolette into an open air crib and see if he can still keep warm.

Speaking of still keeping warm, that is one of the criteria he has to pass in order to come home.  He has to be in an open air crib and keep himself warm for a few days.  He has to be off all medications and all fluids.  He has to be taking all his nutrition from the breast or bottle and has to still gain weight.  He has to be “episode” free for 7 days.  An “episode” is what they call it when a baby has an apnea or a bradycardia, or forget to breathe and have a rapid loss of heartbeats.  So, Miles is well on his way to meeting all of these criteria.  He is such a fighter, and has made such leaps and bounds these last couple days.  Mike was not able to get up to the hospital for the last two days because he has been on Nolan duty, but today he got up there and couldn’t believe how different and how healthy he looked compared to 10 days ago.  His biggest hurdle right now is figuring out this breastfeeding thing.  He gets better every day, but they warned me he may hit a plateau because we are asking him to do so much already that he really wasn’t supposed to do for 7 more weeks at this point.  I am proud of him and am enjoying watching him grow every day.

For more pics, checkout Mike’s Page

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!!