NICU 101

Day 1

Picking up where we left off, at 4:00 AM (2/1/2014) Amber decided that it was time to wake me up to go down and meet our new son for the second time (she can't really remember the first).  I got a wheel chair so that I could take her down.  When we arrived, it was time to start receiving NICU education.  I was fascinated by all that was going on.  The staff is awesome and has been very good at answering all of our questions and concerns. We learned that it took a little bit longer to stabilize him than normal because of him being born in the bed, but that he was doing fine.  His oxygen levels were doing really well, in fact they were only giving him ~25% oxygen (normal air has ~21) so that was good, the ventilator was set fairly high, but other than that his air ways were doing really well.  They did have to give him surfactant, a protein/fat mixture that occurs normally in lung.  It coats them so that they don't stick together when we exhale.  They told us that it was really good that he was able to get the 2 doses of the betamethasone to develop his lung.  

We couldn't believe that he already had hair on his head, it was really cute.  He started to move around a little bit so they decided that they were going to sedate him.  The biggest fear that they have with micro preemies is hemorrhaging.  This is because the vessels in the brain are so weak that it is very easy for them to rupture; they told us that most preemies his age will have some amount of hemorrhaging, but that he could still be okay.  They try to touch them the least amount possible during the first couple of days because of this, so they try to combine all interactions (diaper changes, temperature checks, suctions, etc.) to the same time once every 6 hours.  Jason's times just happened to be every 3:00 and 9:00.  They have a great team that consists of a respiratory therapist (RT), registered nurse (RN), nurse practitioner (NP), pharmacist, nutritionist, and neonatologist.

It was really cool to see how they did everything. They used the vessel in his umbilical cord to feed him and administer medicine and they used the artery to measure his blood pressure and take blood!  His bilirubin count was high so they put him under the lights and gave him a little mask to cover his eyes.  These can be used for up to 10 days!  They had to put him on insulin because his blood sugar sky rocketed the first day.  Amber got to touch him in the afternoon; it was actually kind of scary because they talked before we could do it about how sensitive preemies are and that you shouldn’t rub their skin or push too hard.  Amber cleaned her ring and took some a picture of Jason with it.

 

Jason holding Amber's wedding ring and wearing his sleep mask

Day 2

We went and visited Jason in the morning.  It was really good, his lungs had basically stayed the same, but his glucose was finally coming under control.  While Amber was being checked out by a doctor so that we could be discharged, I got to sit in with the team as they planned out his next 24 hours.  At first I couldn’t keep up, each of the people just rambled off a bunch of numbers from the past day (without saying what they meant).  As they discussed the plans for the next day they explained their decision to me and were really good at answering questions.  They told me that one of the nurses had heard a murmur during a check and that they were going to do an echo in a few days to see if it was really there.  Also his white blood cell count was a little high and they suspected that this was being caused by an infection and were starting him on antibiotics that covered a variety of infections including meningitis.  They said that if it didn’t get better that they would end up doing a lumbar puncture to make sure that he didn’t have meningitis. Also his weight had dropped to 750g (1 lbs 10 oz) and they were going to up his proteins a little to help with this.

Amber was discharged from the hospital and we left to finally shower at home.   The best i can describe is it was a really weird feeling to leave our baby at the hospital as we drove home. It was more nerve wracking than driving home for the first time with Jake. 

We returned to the hospital in the afternoon and got to participate in his 9:00 PM checks.  I swabbed his mouth with water and Amber changed his diaper.  I think that she was a little nervous about this since you have to lift him by his thighs by pinching them between 3 fingers (thumb, thigh, pointer finger, thigh, middle finger), then you lift them up an remove the diaper and put a new one on.  He is in the smallest diapers and the still have to fold them down so that they aren’t clear up over his belly button.  He lost another 10 g, but his glucose was doing really well.  They cut the amount in half because it started going too low.  They are hoping that it will now balance out around were it is suppose to be.  They took him off of the lights because his bilirubin was low enough, but told us most likely he would have to go back on.

Day 3

We spent most of the afternoon with him today; he was still doing really well.  They are keeping him on the reduced insulin because he finally stabilized where they wanted him to be.  That was good to hear, but his breathing still hasn’t changed.  He had to go back under the lights because his bilirubin count went back up.  He doesn’t need oxygen, but they have to give him a bit of air for him to breathe (amplitude 20, mean 9 for those who know about ventilators).  I got to check his temperature today and Amber changed the diaper again.  They did an echo and it turns out that he has a medium size PDA, which is basically a murmur where a valve doesn’t close off at birth.  They needed to put him on some medication (indomethacin, I think) to help this close off, but it doesn’t allow the platelets to function correctly which is bad if they happen to have bleeding in the brain.  Before they started the medication they performed an ultrasound on his head to check for hemorrhaging.  The radiologist said that there was minor bleeding that had occurred, but the medical staff decided since it was so small and done bleeding that we needed to go forward with the medicine.  They also gave him a blood transfusion of 12cc of the finest O+ blood they could find. I started feeling sick and we left (if you have any symptoms of anything you aren’t suppose to come to the NICU until they have been gone for 24 hours).

Day 4

I woke up with a super, sore throat and a headache, yeah for me.  I love strep. This means that I can’t go to the hospital for a few days, so all that you will see for the next few days is regurgitated from Amber.  His blood sugar finally regulated which means no more insulin, yeah!  They tried to turn his ventilator settings down again today, but he didn’t like that so they had to turn them back up.  He was taken back off of the lights again, yeah.

Day 5

Today was an exciting day; they took Jason off of the big ventilator and moved him to a smaller less damaging one.  He still has his breathing tube in, but since he is on the lowest settings if his blood gases continue to look good they are going to pull his breathing tube out.  On the downside, he finished taking the medicine for his heart and they did another echo and the PDA is still there.  They are going to start another round of the medicine because it is working and the murmur is really small now.  After he finishes this round they might take the tubes out of his belly and give him milk! 

They put blankets to hold his arms down because he kept trying to pull the cords out. No more breathing tube

Day 6

Not much happened today, Amber spent most the day with Jake and Jason is still doing good, but his infection is still there so it looks like they will probably be doing a lumbar puncture tomorrow.  He finished the meds for his murmur, but the results for the echo haven’t come back yet so we don’t know if it was successful or not.  Amber did get to hear him cry for the first time today, she was so excited. There is nothing like not being able to hear your child cry to make you want to hear it every chance you get.  He did gain a whole 2 oz! He went from 1 lb 6oz to 1 lb 8 oz. He's getting so big! 

Day 7

There was quite a bit that happened today.  The results for the echo came back finally; he still has the PDA and it didn’t really change this last time.  This is keeping them from upping his fluids very much, but they upped his proteins, sugars, and lipids a little.  They are hoping it will close off on its own, but if it doesn’t and starts causing him any problems he will have to be transferred to primary children’s to have surgery to close it off.  We are really hoping that it will just close itself off though.  Amber got booted from his room for a couple of hours for the lumbar puncture to check for meningitis.  They go around and sterilize everything in the area for like 1 and ½ hours and it needs to stay that way after until it stops leaking.  We were really hoping that he didn’t have meningitis, but we had to wait for a few hours to find out.  If everything looks good, they will start giving him milk tonight.  He didn’t have meningitis, which is awesome, so they are going to change his antibiotic again to focus on other types of bacteria.

It is amazing to see how much can change in just a week of little Jason's life. He is our little crazy miracle. He does seem to keep us on our toes. He knows exactly what he wants when he wants it. He is doing just as good as can be expected of him and we are so proud of him fighting so hard. 

We are so thankful for the people that have helped us so far and who have offered their services to us. Our family feels the love you have sent to us in many ways. We know this will be a long journey for our family and we are sure we can use all the help and prayers we can get. It's comforting to know so many people are here for our family at our time of need.