Update: June 3 - June 9

June 3rd:

Today was a hard day for everyone.

Jack: Today was hard for Jack because he decided it would be fun to pull his air tube out.

Molly: Today was hard for Molly because she was at the hospital when Jack decided to pull out his air tube and got to witness the mayhem of the doctors and nurses trying to get a new air tube in.

Jordan: Today was hard for me because I was flying back to Utah for the first time and wasn't by my family's side when things got tough. It isn't fun being across the country and feeling so helpless.

Jack has pulled his air tube out a couple of times now. The doctors say it is pretty normal because his tiny throat is so small that 1/2 centimeter up or down causes his respirator to come out. You can imagine that with all the normal wiggles of a baby and all the extra wiggles from a baby in the NICU (pretty much any doctor with 'ology' at the end of their title has touched Jack) that 1/2 centimeter just isn't that much play room. It is terrifying to look at his monitors and see his oxygen levels plummet. It is terrifying to watch his heart rate follow the plummet of his oxygen levels. It is terrifying to hear the alarms. It is terrifying to watch everyone in the NICU stop what they are doing to rush to your baby's side. Thankfully the doctor was able to get a new respirator in and working relatively quickly. Times like this make you realize how fragile things are in the NICU. Sometimes we take for granted that just because Jack has been a champ for 2 weeks doesn't mean tomorrow is going to be the same. After all, it is called the intensive care unit for a reason and if our baby was really OK he wouldn't be there. Let's just hope we can keep this respirator in for a while (or, if he is going to pull it out, that he just waits until we aren't there).

June 4th:

Jack had to facetime me today (thanks Molly for assisting him). I made a stealth visit back to Utah. I got in late last night and I am leaving early tomorrow morning. I had a few things I needed to take care of at work, a lot of things that I needed to get in order at our house, and Molly and I were in need of a little more stuff than we wanted to send in the mail. My trip was 'go go go' and I feel more exhausted now than ever before.

Jack seems to have recovered well enough from pulling out his tube; however, they did another chest x-ray and found that his lungs are full of junk. Two things are happening in his lungs. First, he is experiencing partial lung collapses that are trapping carbon dioxide in his lungs and making the transfusion of oxygen and carbon dioxide in the blood more difficult. Second, they are worried that some of the haziness they are seeing on the x-rays could be fluid in his lungs. They are starting Jack on some inhaled steroids today that they hope help his lungs expand back out. The doctor scared us pretty bad and told us that if these inhaled steroids don't help that they have to move to IV steroids. IV steroids are scary because they also include a ton of side effects. There is one doctor at the NICU that seems to focus on worst case scenarios more than others and she was the one explaining these IV steroids, so I am taking what she said with a grain of salt and hoping that Jack responds well to the IV steroids.

June 5th:

I am back by my baby's side today! Molly took me straight from the airport to the NICU because I was really excited to go and see my boy. The doctor on today comforted us a little by telling us that Jack's breathing was moving in the right direction. The air that he is taking in from his respirator is usually between 25-35% oxygen. He is sitting at 400 breaths per minute and they are starting to wean his pressure levels down.

Side Note: Jack is on a respirator that they call a 'jet'. The jet has a few settings that they keep adjusting. First, they can adjust the percentage of oxygen that goes in through his respirator. Normal room air is about 21% oxygen, so the closer we get to 21% oxygen the better. Second, they can adjust the number of breaths the respirator gives Jack each minute. On a jet it is usually between 400-550 breaths per minute. The high frequency allows them to put in tiny breaths that don't make his lungs fully expand and contract and so it is more gentle on his fragile lungs. The lower the breaths per minute the better because it means he is getting closer to normal breathing. Finally, the third thing they can adjust is PIP. PIP is the pressure that the respirator delivers each breath. So, the higher the PIP the harder it pumps in each tiny breath. The lower the PIP the better because a high PIP is used when his lungs are partially collapsed and they are trying to expand them back out.

Jack also weighed in at 2 pounds today! The doctor said that he probably is more like 1 pound 14 ounces and that we should take a weekly average when figuring out his weight at this point. Jack is also taking 5.3 milliliters of breast milk every hour now. For his size, a full feeding is 5.8 milliliters, so we are getting so close!

June 6th:

Jack weighed in again at 2 pounds today! They took him up to full feedings on breast milk today which means that he might lose his PICC line today or tomorrow as the last IV fluid he is getting will no longer be necessary once he tolerates full feeds. All of his respirator settings moved in the right direction since yesterday and his blood tests have been consistently good with the lower settings. Jack is also off his bili lights again and we hope he can keep his jaundice levels low enough that he can stay off of them this time. It is so fun to see him without his mask!

June 7th:

Today Molly and I were there and Jack was very awake and active. They popped the top of his incubator off for us and let us take some good pictures with him. His blood tests have started to slowly creep in the wrong direction, so they are holding his respirator settings for now.

June 8th:

Jack finally got rid of his PICC line today! That means he is up to full feedings and tolerating it well. Hurrah! His hand is finally free as his arterial line and PICC line have both come out. He is now only connected to an oxygen monitor, a heart monitor, a respirator, and a feeding tube. We are always happy to see his equipment leave!

Jack's blood tests took a turn for the worse today, so his respirator settings are back up. He is really struggling with his breathing and could definitely use some extra prayers that his lungs will better develop sooner rather than later. When his blood tests come back worse, they start doing the tests more often. That means that Jack gets pricked in the foot for a blood draw a lot more often. It is a very similar process of a diabetic pricking their finger for a glucose test, but they need about 10 times as much blood for Jack's test. In order to avoid all this pricking, the doctor tried to put in a new arterial line (IV that they can draw blood from without having to prick him), but was not successful. After the fifth attempt Jack was so worked up that he threw up and the doctor decided it would be easier on him to prick him a bunch of times then trying to get the arterial line. It was really hard for me to watch him struggle so much. I just sat there watching them go through 5 IV kits and wished I could do something to comfort Jack. The poor guy can't even cry with his respirator in, so he gets the saddest crinkled face you ever saw and that's how you know he is mad. Molly and I knew that this is a 1 step forward 2 step backwards game and we are doing fine, but the 1 step forward days are definitely easier.

After things calmed down a little, I got the impression that I needed to give Jack another blessing, so I did. I definitely felt that things were going to be OK during this blessing, so I am holding on to that feeling!

June 9th:

The doctor ordered another x-ray of Jack's lungs to see what is going on. On the x-ray they want to see nothing in the lungs (black on the x-ray), but Jack's lungs are almost a complete white out. Again, it is a combination of partially collapsed lung tissue and fluid in his lungs. They were worried that his ductus arteriosus might have opened up again, but an echo scan showed that it was still shut. They went a little higher on his respirator pressure in order to push those collapsed tissues back open. They also started him on a diuretic to try and get those fluids out of his lungs. This means they will be monitoring his potassium and sodium levels more closely now. The one positive is that he is not really requiring a high percent of oxygen. The doctor said that ideally we wouldn't want anything, but that it is a good sign that he doesn't have white out lungs with a high need for more oxygen.


And now for what you really came here for: pictures!

This is Jack's crinkles sad face:

A great family photo with Jack's open eyes:

Jack in his favorite position:

Jack in his second favorite position, holding onto his ears:

Jack trying to figure out what that thing Mom is holding does:

 


As unexpectedly living across the country with a baby in the NICU has its fair share of financial implications a fund has been set up to help us with medical, living, and transportation expenses. Any gift is very appreciated, but don't feel obligated to give; however, do feel obligated to pray for us and/or send positive thoughts our way.