Update June 10 to June 17

June 10:

Jack is growing! He is 2 pounds today and 12.8 inches long. It is a lot of work growing this much! We came in this morning to find his respirator settings back up to their highest levels. By the end of the day he was breathing a little better, so they lowered his respirator settings a little. They are going to be lowering his setting very slow this time to give him more time to adjust to each level. He was still on room air most of the day, so that is still a good thing to hold onto. Jack is so cute and Molly and I love being able to see his eyes. He does the cutest thing when he wakes up. He peeps one eye open just a tiny bit then sometimes he opens them up and sometimes he doesn't. It is almost like he is peeking to see if it is worth the effort to open his eyes. I think he learned this from Molly because she does the same thing when she wakes up and is still tired.

June 11:

Well, they raised his respirator setting back up again after a few bad blood tests. His blood tests haven't been terrible, but again, they are just being more cautious this time around. I really wish that they could have got that arterial line in Jack. It breaks my heart every time I look at his feet because they are starting to bruise from all the pricks. Jack doesn't like to be pricked either. He gets the saddest crinkle face when they do it and my heart melts. I know it is for his own good, but it doesn't make me want to switch places with him any less. He is a fighter though, so he will tough it out.

It is interesting to think, but it was pointed out that, while the doctors make it a big priority to keep Jack comfortable with pain medication, for Jack, he doesn't know anything different. For him this stuff has been a normal part of life from day 1, so it may not be AS uncomfortable because he doesn't know what comfortable is. Don't worry Jack, soon you will learn and you will think back about how awesome you really were.

June 12:

Jack had a really good day and night today. He has had consistently good blood tests and they are bringing his respirator settings down slowly. Sometimes more slowly than Dad would (don't you know that I have become an expert at reading these tests) :). They did another chest x-ray and found that his left lung had cleared out pretty good, but that he still had a lot of white on the right side. However, we are happy to see an x-ray that is better than the last. Jack seems to really like room air as he was able to maintain room air almost all night and most of today. These are all good steps in the right direction!

In other news, Jack has grown enough to get more breast milk. The chunker is now getting 6 ML every hour. This kid is definitely breaking our grocery budget! They are adding calories (formula) to Molly's breast milk to help him grow faster. They switched their added formula to a new brand today because the brand they were using has been known to raise the acid levels in babies. Jack's last blood test showed him a little acidic, so they are switching to a different brand. They say he will probably continue to switch back and forth as his blood work shows different needs. I swear if Jack sneezes weird they know about it and make an adjustment. Poor kid gets a lot of tests done.

June 13-14:

Call me a bad parent, but  I forgot to do an update on the 13th. I think Friday the 13th was just unlucky for the blog, so we are combining it with the 14th.

These two days have been extra busy for Jack. First, they did another brain scan to check on his level 1 bleed. They found that the level 1 bleed was still there, was still reabsorbing into the brain, and appeared to be resolving. They will check again in 2 weeks and we hope that the bleed is gone all together. Second, they did another chest x-ray to check on his lungs. The x-ray showed that his lungs were a little better and they are sitting in the not fantastic, but not terrible range. Third, they have continued their blood tests and Jack has continued to test well and has gone down on his respirator settings over both days while maintaining room air. Fourth, Jack had another blood transfusion. Molly and I came about an hour after they started it and Jack looked so uncomfortable. Unfortunately, during a blood transfusion they can't feed Jack which also means that they can't give Jack his pain meds. The nurse decided it was time to try the pacifier to see if we could soothe him. It helped so much! Because of his feeding and air tube Jack couldn't keep it in his mouth by himself, so I held it in for 2 hours for him. I think he loved every minute of it! Finally, Jack has weighed in over 2 pounds for 5 days in a row now. He really looks so much better with a little fat on him!

June 15:

Today started off so well. Jack had another fantastic blood test and the respirator settings were back down to around the lowest settings Jack has ever had. After a few hours on these settings Jack had one of the worst blood tests he has had, so back up on the respirator settings. They are not as high as they have been in the past, but this has definitely knocked off the last 2-3 days of progress. I really hate that it takes so long to come down, but so quick to go back up. He is maintaining room air, so that is one plus! Jack also looks amazing. He looks a lot more comfortable today than he ever has and he looks a lot more healthy today than he ever has.

June 16:

Happy 4 weeks old Jack! Sometimes Molly and I think "Wow, it has already been 4 weeks?!? Time flies!" and other times we think, "Wow, it has ONLY been 4 weeks." Well Jack had another rough night. We are back up to the highest respirator settings we have seen. It is crazy to me that we can spend a week coming down slowly on his settings and then in a 24 hour period he blows back up to even higher than he was before. Jack also thought it would be fun to pull his airtube out again last night, so they had to reincubate him.

There is some silver lining to all of this. First, because Jack has grown they were able to put a bigger air tube down and that could help his breathing because more air is getting down and less is leaking around the sides of his tubes. Second, they did another chest x-ray and found that his lungs were not worse than a few days ago, so that is a good sign. Third, the x-ray revealed that his airtube wasn't positioned very well, so they adjusted the tube and say that should also help his breathing. All in all, we are of course disappointed that his settings are back up, but we are optimistic that they will come back down.

June 17:

Jack has visitors! Rachel (Molly's sister) and her husband Rufus are here to visit for the week. Jack showed off by opening his eyes for them. He liked to hear other familiar voices!

Jack's oxygen needs had gone up over the last few days, but today he steadily made progress and was down to 24% oxygen (remember 21% is room air) by the end of the day. His blood tests have been OK, but not good enough to take his settings back down quite yet. Whenever his settings go up like they did they also want to rule out an infection, so Jack had a few tests done today to make sure he doesn't need antibiotics. Those results should be in tomorrow. Jack's feedings also went up to 6.1 ML per hour!

And now for the part that I know most of you come for, the pictures!

Even Jack Suffers from bed head.

Jack pretending that he can hold his own pacifier. Dad helped him out for the next 2 hours.

Jack has a ticket to the gun show. Do you?

Happy Father's Day this week! Molly and Jack sang me some of the best primary songs!

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.
 

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.

Holding It Together

How are you holding it together so well? Next to asking how Jack is, this is the most common question that I get when talking to other people about our situation. It is a good question that I am not sure I know how to answer. I would be lying if I didn't say that our situation is far from ideal (it actually really sucks!). I would also be lying if I didn't say that Molly and I have bad days where we don't hold it together very well. But it is true, Molly and I have been able to hold it together pretty well. This has led me to think what has made it possible for us to remain positive (and even happy) when dealt a situation that really sucks. So, here we go, how are Molly and I holding it together so well?

I first attribute our good attitude with a conversation that happened in the first few days that we were in hospital trying to keep Jack inside Molly's belly. It had been a stressful few days to say the least. For me, I would say that those were the hardest two days that have come so far. I was mess. I was scared, confused, worried, sad, and quite honestly a little depressed that such a happy trip had taken such a tragic turn. Molly and I were alone in her room and we started to talk about what we were going to do. During this conversation, Molly and I went to our religious roots and decided that our firm beliefs were going to be the rock that got us through this.

Molly and I are Mormons which means that we have a strong belief in Jesus Christ and that we believe we have a purpose during this life and that God won't give us challenges too big to overcome if you turn to Him for help. If you think about it, that is quite the belief to own up to. That means that if Jack doesn't make it that we believe the challenge isn't too big to overcome. That means if Jack has developmental problems the challenge isn't too big to overcome. That means if Jack makes it unscathed and perfect then the challenge isn't too big to overcome. It means that no matter what happens for good or for bad, we believe that with God's help we will make it through and learn from it. Pretty scary, right? Well, this was the conversation that we had those first few nights as we began this journey into the unknown. We decided those nights that these really were our beliefs, so no matter what, we were going to be OK.

Second, I attribute our good attitude with prayer. Logically, I was in a good place accepting that no matter what happened it would be for my good, but sometimes logic doesn't help emotion. Just because I believe things will turn out for my own good doesn't mean that I am OK with it. Furthermore, I believe that the only person who truly knew how I was feeling was Jesus Christ. I believe that the Atonement was not only a time that Christ suffered for our sins, but also a time that he felt all the pains, illnesses, and afflictions of the world. In other words, I believe that Christ was the one person who knew exactly how I was feeling. After Molly and I had the tough conversation described above, we turned to prayer in order to better control our emotions and apply the Atonement in our lives. Prayer is an interesting thing to me because I often confuse prayer as a time that I get to list of the things I want from God and because He loves me I will get them all. I am learning that prayer is more about emotion, communication, and feeling than anything else. In other words, I believe that prayer is a way for us to apply to Atonement of Jesus Christ in our lives. I can't say I know how it all works, but I do know that in prayer I have felt the comfort of a Savior who knows exactly how I feel and this comfort has been instrumental in my positive attitude.  

Third, I attribute our good attitude to loving strangers, friends, and family. I am humbled by the amount of love and support Molly and I have receive. People have given in many different ways. Some have given money, others have given prayers/thoughts, some have served as shoulders to cry on, others have given food, some are house sitting our house, and some have even given us their homes, but I am grateful for all the ways anyone has given. It seems that whenever I have the chance to start feeling sorry for myself and my situation someone else does some random act of kindness that reminds me I am going to be OK. I send my sincere gratitude to everyone's love and support and I ask that you continue to send your support in whatever way you can.

Finally, I attribute our good attitude with my job situation. I work at a company called O.C. Tanner and I think I will be forever in their debt. Second to worrying about my family I was worried about my job and providing for my family. How was going to choose between staying here in Virginia with my family and keeping my job in Utah? I am so grateful that I will not have to make that decision as O.C. Tanner has made it possible for me to work remotely and stay with my family. What a relief to have the support of a great company.

Overall, if I had to sum up how we are holding it all together so well in one sentence I would say, "We are choosing to be happy." Life will have its ups and life will have its downs, but ultimately we are the only ones who can decide how we will react to life. I have found that my path to happiness includes religion, prayer, family/friends, and a good work situation; however, even with these things, at some point I had to choose to be happy with my circumstances. A lot of time being angry and feeling sorry for yourself is easier; however, choosing to have a positive attitude frees you to live life to the fullest and see all the people who love you.


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.

Update: May 31 to June 2

May 31st:

Jack sure loves to be on his stomach! Every time we come in and he is on his stomach all of his stats seem to be better. His recent blood-gas tests have improved so they have adjusted his respirator setting back down a little; however, we are learning that this is an ever changing process. Jack's breast milk consumption is up to 24 milliliters a day and they say he seems to be tolerating the food well, though he still is weighing in at 1 pound 11 ounces. Jack is still under the bili lights waiting for his jaundice levels to come down.

June 1st:

Jack lost his bili lights today! It was very exciting to be able to see his eyes. When they have the bili lights on, they have to cover his eyes with a mask because the lights are bad for eye development. We love being able to see his eyes open up. He likes to look at Dad more than Mom, but shh, Mom is in denial. Unfortunately, when we came later on today, his bili lights were back. Apparently his jaundice levels went back up without the lights, so for the time being he is staying under the sun. Our nurse Sharyl let us have our open time with Jack again today. These are definitely our favorite times. His oxygen needs went down again and the respirator settings also went down again, so he seems to moving in the right direction for now. They also increased his feedings to 1.5 milliliters of breast milk every hour as he continues to take his food well. As we were leaving today they were preparing him for his third blood transfusion, so we hope that goes well. It really makes you grateful for blood donors at a time like this.

June 2nd:

Happy 2 weeks Jack! He must be too excited because he is having a tiny rough go today. They found out that Jack has some bacteria growing where his respirator tube connects in his throat. Though it is really common, it is still scary knowing that he is so fragile and has an infection now! They are waiting for a culture to come back (should come tomorrow morning) and will most likely start him on antibiotics tomorrow. After the bacteria is gone they are going to give him some steroids to strengthen his lungs. He has taken a few steps back again with his breathing as his oxygen needs have gone up again and his respirator settings have also gone up. The good news of the day is that they did another brain scan and his brain bleed is holding strong at a level 1 bleed and there is no sign of any clots from that bleed which means it is successfully absorbing back into the brain. His feedings are up to 2.7 milliliters per hour. Jack is taking after his uncles and pooping like a champ! He also manages to find a way to pee through his diaper or out of his diaper. Sharyl, his nurse, says, "he is quite the character." Jack weighed in at a whopping 2 pounds 0 ounces today; however, we have been told that his weekly average is more accurate at this point and that he was most likely heavy because they gave him extra IV liquids and a blood transfusion yesterday night.

Mom cleaning out Jack's mouth:

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.