Tuesday, February 25, 2014

NICU 201

the nurses get crafty
Not much happened over the weekend except that I finally got over my strep and was able to go and see him again, but they were letting him rest all weekend, they started to feed him a tiny bit of milk every 3 hours (like 1-2ml) and they might let us start holding him!

On Monday Amber went to see him and he started spitting up, so they might have to cut his feedings and we didn’t get to hold him.  They did his head ultrasound, but the results didn’t come back.  Things were pretty mellow.  The NICU has the policy that they like the baby to rest as much as possible.

 The next day the result of the head scan came back.  He had a level two hemorrhage in his brain, which we already knew about, and a potential periventricular leukomalacia (PVL) in the frontal lobe in his white matter running to his basal ganglia.  This was super hard to hear; it basically means that there is a potentially a small spot in his brain that could die.  PVL’s have been linked to everything from having no symptoms or something like ADHD to learning disabilities, paralysis or cerebral palsy.  It will take approximately 30 days until they are to confirm whether or not he has one and then it will take a couple years to know the extent of the damage if he does indeed have one.  Doctor O’Brien, the medical director for the NICU at IMC, came and talked to us.  She was pretty awesome at comforting us without giving a false sense of hope if that make sense.  Pretty much she told us that PVL’s aren’t good and can cause all sorts of issues, but that we shouldn’t worry about anything until they confirm the diagnosis in 30 days and that even still as long as they are meeting their developmental goals we shouldn’t worry too much.  She said that some people research way too much and can freak themselves out by focusing on all the worst case scenarios.  She even had a little girl that had a fairly severe PVL and hemorrhage walk up to her at age two and say “Hi doctor.”  Then Doctor O’Brien said that she could hold Jason and that as long as he was doing okay that the nurses better let her hold him.

On Wednesday Amber started to get a rash on her chest and talked to the NICU because she was scared that Jason might get it from her, but they told her that he would be fine and that she could hold him again for 2 whole hours.  I don’t think Amber has been so excited in her whole life. That might be a little bit of an exaggeration, but she was super excited.  She spent most of the day helping with cares and holding him.  Her rash started spreading all over her body that night and they said that maybe she shouldn’t touch him until the rash went away.  Amber went to the doctor and got some medication for treatment to get rid of the rash, but it went away the next day without her even taking the meds.  Amber thought that she was allergic to her child or something, but we latter found out that he had a staph infection in his urinary tract that they couldn’t detect for a while and that they had started him on antibiotics to get rid of it.

We were so excited that things were going so well with him, in 2 weeks his breathing was doing great, he was on milk, and we could hold him and there had only been a few minor setbacks.  Friday came and he still hadn’t had a bowel movement so they cut milk out of his diet and told us that they couldn’t figure out why he wasn’t tolerating food well.  Dr. King said that it could be air in his tummy from his vent, he could have a blockage in his intestine, or something worse.   They gave him a day to rest and then tried to put a tube through his mouth into his intestine, they tried for 5 hours and it didn’t work.  Because of this, we were not allowed to hold him because he was tired.  By now it had been several days since they took him off of milk, but they really wanted to give him a few more days before they did a dye test (this is where they give him some fluid and then track it through the intestine using x-ray to determine whether or not there is a blockage.  Sometimes it requires surgery to repair and if this happened, he would be transferred to Primary Children’s.  We really didn’t want him to have to get surgery because at this young babies have a hard time with surgery.  Also they had to give him another blood transfusion because they take so much blood from him to do labs. 
On Sunday we had a super cool nurse.  She let us each hold Jason until he became ‘unhappy.’  It was super cool because this was my first time holding him.  He is so tiny and fits so snuggly in one arm, but it is a little weird because they really like skin to skin contact and so they ask you to take off your shirt to hold him.  Jason is a little funny and causes the nurses some grief because sometimes he forgets to breath and you can see his oxygen tank and his heart rate slow way down.  When this happens we try to gently stimulate him with a little pat or by rubbing his back just a little.  We were able to hold him for like an hour and thirty minutes between the two of us and then his oxygen started dropping and we put him back to rest.  Also he pooped like crazy today all on his own!  I’ve never been so excited about poop, but this means that if he keeps doing well they are going to put him back on milk and he wont need surgery (though we don’t know for sure yet).  They told us that they were going to try and drop his vent setting to the lowest settings during the night as well.
The next day Amber went to the hospital while I was at work.  The nurse definitely wont be one of our primary care nurses. When Amber asked to hold Jason she said that even though he was doing fine we should only hold him twice a week; which doesn’t make sense since the medical director of the NICU said we could hold him anytime that he is doing well. Holding Jason is an ordeal, it takes about 15 minutes to get all the different cables and lines in the right place so that we can pull him out and reach the chair without it pulling on his lines. I think there are a few nurses that don’t like spending their time doing this since it takes them about thirty minutes to do the set up and tear down; luckily I think they are in the minority.  
On the 18th we got a phone call at 6:30 AM from the NICU.  They typically call every day, but not this early in the morning. They told us that Jason stopped breathing during the night and that they had to intubate (put a breathing tube down his throat) him and adjusted his vent settings; also Amber woke up with a super sore throat and an extreme headache.  We went to the doctor and they confirmed that Amber had gotten strep.  This wasn’t fun news because now Amber couldn’t be around Jason for a couple of days.  Jason seemed happier with the tube down his throat, but we were super sad because this meant his breathing had regressed a lot.  They kind of just let him relax for a few days since he got the tube.
Jason opened his eyes!!!!
On Friday we finally got the first good news of the week, they had started increasing his feedings.  He had never broken 2ml of milk per a feeding (they feed him 8 times a day), but when I went in his feeding were up to 5 ml and they were working on pushing his feeding up to 7 ml that night.  This was so exciting since his digestive system has struggled so much.  They told us that it is looking less likely that he will have to get surgery on his intestine since he was doing so well with his feedings.  This was so nice to hear this and on Saturday they moved his feeding up to 9 ml, 13 ml on Sunday, and all the way to 15 ml on Monday (24th).  Also he opened his eyes for us for the first time (the nurses told us that he had opened his eyes earlier, but I don't think that counts).  When we were there on Saturday they told us that we could probably start holding him again. he is also now up to a whole 2 lb 2 oz! he is so big. Even though he lost 2 oz the next day.
On Monday Amber was finally able to hold him again for 2 whole hours! She was so happy and loved her nurse so much. It had been so long he seems big now. I personally think he does very well during kangaroo care even if he has low stats during his cares. He likes being cuddled. He is also a little heater. It is great he is able to regulate his temp well during holdings but… ugh it gets so hot! It was great he was able to be held though, hopefully the nurses will keep letting him come out and play. Getting to hold your child makes it easier to believe he is actually yours. It makes you feel more like an actual parent. Even if you do have to ask permission to do so.
Tuesday was a little exciting. Jason has been doing so well with his feedings they now have him up to his full feedings. (140 ml/kg fluids) they are also using a supplement in the breast milk to make it a little better for him. He has done really well with that to. Maybe now he will start getting through some of the milk taking over our freezer. He did so well with the full feeds with the supplement in it they got to take out his picc line. They are now constantly trying to lower his vent settings every day. Sometimes he allows it other times he likes to play the up down game. Today was one of those days. I think he just likes company. The nurse is constantly in and out of the room turning the vent up and down. I think he likes the game since he plays it so much. Hopefully they will be able to lower the settings enough to take the tube out soon. He is a lot easier to deal with that way.

We have had so many ups and downs lately that we actually did start to notice how much a good nurse means day to day. Even with the different mindset each nurse has about his care, Jason really is doing so well even with some of the setbacks we have faced.  We are so happy about what he has been able to accomplish in the past few weeks.  It is amazing watching his little body and ability to do things change as the weeks go on. I do feel like he does actually have somewhat of a personality and it is starting to show through the glass box separating him and the rest of the world. <(this is probably wishful thinking) I can’t wait for him and his personality to grow even bigger.

his umbilical cord came out. he has a belly button!



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