Update June 18-July 6 (I know I am sorry)

My initial reaction is to apologize for it being so long since I have updated the blog; however, I look back at my past few weeks and realize that I didn't waste a lot of time, so I don't know when I would have had time to do this until now. Crazy life, so I hope you all will forgive me and enjoy this rather long update (still daily).

June 18:

The partial results of Jack's culture came back today and Jack doesn't have an infection. They have to wait another 24 hours to know for sure, but it is a good first sign. I know it is weird to say, but this came as bittersweet news. Of course it is always good to NOT have an infection, but an infection could have easily explained his sudden breathing relapse and an infection is relatively easy to treat. Without an infection, the diagnosis remains chronic lung disease, which I really interpret as underdeveloped lungs. He seems to be breathing a little better, so the slow process of turning down Jack's respirator settings begins again. 

I thought it would be nice to explain what I mean when I talk about Jack's respirator settings, so I am including a picture of his respirator to help explain (note: this picture is not from today, so his settings are a higher than indicated in the picture). The numbers we pay attention too are the two leftmost yellow numbers that horizontally stretch across the middle of the machine and the little oval white/blue device hanging to the right of the yellow "1-56". 

First, the yellow 26 is what seems like the most important setting and when we say they have "turned down his respirator settings" we are usually referring to this number going down. It is an indication for what is called PIP. Simply put, PIP is the amount of pressure that the respirator pushes in each breath. You can think of it like a how hard someone is hitting a drum. As this number goes up it is pushing in each breath harder. As a general frame of reference, if Jack were to go straight off this respirator to a CPAP respirator this setting would need to be around 16.

Second, the yellow 450 is how many breaths per minute the respirator is giving Jack. I know it sounds like a lot, but it is really 450 really tiny breaths. They are going in and out so fast that it makes his chest look like a hummingbird's wings. The respiratory specialist calls it 'chest wiggle'. They do smaller breaths more often to keep his lungs from having to fully contract and expand. Essentially, it is letting his lungs do as little work as possible to help them develop faster. This setting doesn't change much, but can go down to 400 breaths a minute which is a good sign that his lungs are more developed. 

Third, the oval device to the right is what percent oxygen the air going into Jack is set at. Ideally, this number would sit at 21% because that is what the oxygen level of normal room air is. This setting is changed and updated fairly constantly based on Jack's needs. They have a blood oxygen monitor on Jack, so when his oxygen levels go down they will increase the oxygen levels going in and vice versa. 

I thought it would also be nice to explain how they decide if Jack's settings should go up or down. They conduct what is called a 'blood gas'. Essentially they take a very small vile of Jack's blood and then test it for different gas levels. They are most interested in the CO2 levels in Jack's blood. If Jack's CO2 levels are high it is a strong indication that his blood is not oxygenating well in his lungs very well. The poor oxygenation is usually caused because of partial lung collapses. Jack's lungs struggle to stay open when he exhales because they are so underdeveloped. Essentially, parts of his lungs collapse and trap CO2. This creates a barrier of CO2 that makes it difficult for blood oxygenation to happen, so naturally the CO2 levels in his blood increase. When this happens they increase his PIP because they want to add extra pressure in his lungs to force those collapsed parts back open.

There you go, an explanation of his tests and settings.

June 19:

No breathing changes happened today. His blood gas tests have been coming back consistently good, but not good enough to lower his settings. At this point we are just happy to let them stay and not go up any more! Today we got the bittersweet news that Jack's 48 hour culture came back positive for a bacteria that is known to cause pneumonia. Bitter because the thought of pneumonia is really scary, but sweet because this could be an easy solution to his breathing problem. Again, this is only bacteria known to cause pneumonia, so they are going to aggressively treat Jack with inhaled antibiotics to take care of it before it can develop any further. 

It is crazy to think that Jack is 1 month old today!

June 20:

Jack had a pretty good day today. His oxygen levels have been coming down which is a sign that his breathing is getting better. He is sitting in the low 30s which isn't too bad. The rest of his respirator settings have stayed the same. They started his antibiotics last night and we are very hopeful that they will clear out the junk in his lungs and that it will help him breathe better. The antibiotics are inhaled through his respirator and go directly into his lungs, so it should clear out all that pneumonia causing bacteria! He seems a lot more comfortable today and isn't wiggling around as much. The nurse had him all wrapped up in his personal igloo today and he seems to like it.

June 21:

Jack has had an awesome day today. They were able to lower his PIP settings two times today because his blood gas tests have been so good. When they start changing settings a lot they also do more blood gas tests to make sure he is tolerating the new setting well. So, it is great that he is doing so well, but sad that his poor feet keep getting poked for his blood. I am sure he is so used to it by now that it doesn't even phase him. Jack is getting bigger as well, so they keep increasing the amount of breast milk they are giving him. He is up to 6.8 ML per hour. Grandma Lisa sent swaddling blankets at the perfect time too because we just found out that we can personalize his blankets if we want to bring them in. Molly and I will definitely be taking a trip to the store to get some more, as they really brighten up his isolette.

Jack was also sad to say goodbye to Uncle Rufus and Aunt Rachel. He enjoyed their time with him and can't wait to see them again when he goes back to Utah. He is also excited to meet those crazy cousins they told him so much about.

June 22:

Another fantastic day for Mr. Jack, as one of our favorite nurses likes to call him. Her name is Cheryl and she is fantastic. She has a very grandmotherly approach to taking care of Jack and we love it. She gained our love in the first few days of Jack being in the NICU because she was always willing to open up the isolette for a few minutes and let us see Jack up close and personal. She also has a way of explaining things that just works for Molly and I. She is very factual, but explains it in a way that we understand. Though, you do have to be careful because she has the best memory and will call you out if you ask the same question twice (or even 3-4 times like I have to sometimes). We call her Nanna four because we have designated her Jack's fourth grandma (Sorry Lisa, Moana, and Linda, but you are going to have to share Jack with another grandma).

Anyways, on to talking about Mr. Jack. His PIP settings went down twice again today. This could be a sign that his antibiotics are clearing out the junk in his lungs and that this was the cause of his most recent breathing problems, but it really is too soon to say for sure. We sure hope his settings keep going down. The nurses and doctors mentioned the word 'hold' today and I think Molly jumped through the roof with excitement. They said not today, but if he continues down this path of lowering his settings then they couldn't see any reason to make us wait any longer to really hold him. Tami, another one of our favorite nurses, is really advocating for Molly to have the chance to hold him. She has a plan that she hopes the doctors can't resist: Jack's isolette needs to be changed in the next few days (they like to change them out every 2-3 weeks to keep them clean), so in order to do that, they have to take him out. If they are taking him out, then why not just let mom hold him? We will see over the next few days if the plan works, but for now, Molly had to settle for holding his hand.

June 23:

We walked into the NICU today amazed that Jack's PIP level is down 1 more setting. It is so exciting to see him get low on his settings again, but at the same time it makes me really nervous. He has already done this a few times, but has crashed, so I am a nervous every time we walk into the NICU. I wouldn't be surprised to see his settings jump back up, but I also wouldn't be surprised to see him graduated to the next respirator. For now, I just have to take it a day at a time and be grateful that today his settings went down! 

Jack also seems more comfortable. He went 48 hours without any morphine. That is a pretty big deal considering he still has an air tube. He is also breathing on 21% oxygen which is room air, so it seems like he is really handling the lower settings well. 

Today they also noticed that an old arterial line site on his arm is starting to ooze a little. They sent a swab out for a culture to see what it was, but everything has come back normal so far. They also sent out a blood test to see if he has an elevated white blood cell count which is an indication of an infection. We hope this new problem doesn't set his breathing back at all! We also received a present from Grandma Moana in the mail today. Jack was happy to wake up and see the blanket she made for him.

June 24:

Jack is still on his way down on his respiratory settings. He is down one more today on his PIP which means he is now only 2 away from his lowest settings ever! Jack has not been growing as fast as they would like. They generally want to see a baby grow at least 20 ounces a day and he has been pretty stagnant for the past few days. They are increasing his feedings to 7.3 ML per hour which is higher than they would normally go for his size, but they hope the extra food will help him grow. As you already know, they also add formula to Molly's breast milk to fortify it and add to Jack's caloric intake, so they are also considering increasing the amount of additives to make sure he is getting the nutrition he needs to grow. They will be keeping a good eye on him to make sure that he is tolerating the feedings OK. They will be watching to make sure his stool looks good, that his bowel sounds are good, and that his stomach girth stays the same. Both increasing the amount of food and the additive in his food have the potential to negatively affect his breathing, but we hope he takes it well by breathing good and growing strong! 

The cultures from his arm came back as well and poor Jack has developed a staph infection on his arm. It looks terrible. His arm is all swollen and he has this 3 pimple looking bumps where the IV site was on his arm. They are going to start him on a general antibiotic. The doctor told us that today it is still good news because breathing is the number one priority right now and he seems to be rocking that!

In other news, Tami's holding scheme was a success and Molly had the opportunity to hold Jack for the first time tonight. I would be lying if I didn't disclose the large amount of jealousy that I am currently feeling. It was very tender as Molly started to cry tears of joy. It was a big ordeal as it took about 4 nurses and the respiratory specialist to get him out of his isolette, into Mom's arms, and reconnected to all his machines. Once he was all reconnected, things settled down and everyone was able to leave and give Molly and I about an hour to give our boy some much needed and awaited love. Jack tolerated it really well and we only had one scare. Near the end his respirator was making a beep that none of us had ever heard. About 3 nurses were there looking at his machine when all of the sudden it turned completely off. The nurses jumped into action and bagged Jack and manually breathed for him. Come to find out, the beep was the battery back up for the respirator. When we moved him out, someone bumped the chord and accidentally unplugged the respirator and the battery backup died about an hour after that. I don't think Jack even noticed. It was an amazing experience and I can't wait for it to be my turn!

June 25:

Jack made it another day like a champ. In the process of holding him last night we did lose an IV, but they had two IV's in at the time, so it was not a big deal at all. Operation hold Jack was a smashing success. Jack's hematocrit is low today, so we assume that he will be getting a blood transfusion soon. Jack is stuck at his same respirator settings today. I think he just likes to make me nervous! His poor arm seems to have all the nurses and doctor worried. His whole arm was swollen with puss, so the doctor drained it by popping one of the pimple looking bumps and pushing it all out. I know, it is really gross, but you just feel bad for the little guy. Every time anyone touches it, you can just tell it hurts him. I hope these antibiotics start working soon.

June 26:

No changes again on his respiratory settings. Jack had a routine brain scan to check on his level 1 bleed and we received the fantastic news that the bleed has resolved and that there is no longer any bleeding going on! This was very welcome news and is a good sign that he will be able to develop normally for the rest of his life. Jack's arm looks so much better today. Draining it out seems to have really helped a lot. They also sent a sample of the puss out for culture to see if the antibiotic they have him on is the best one to treat the infection. He just looks comfortable and has for the past few days, despite his infection. He also has grown a few ounces, so the increased food must be working. Jack is just growing and getting his arm better right now! We have been doing weekly foot prints to see his progress.

June 27:

There are a lot of updates today! First, Jack's PIP settings went down one more setting. The doctor has indicated that he is only 2-3 more settings away from being able to take out the air tube. We hope that day comes soon! Second, as expected, Jack received another blood transfusion today. It is pretty routine for him to get transfusions as the doctors take out a lot of blood for all these tests and his body is still so little it can't reproduce enough blood on his own. They also started Jack on some iron supplements today to try and boost his own blood development. Third, they are increasing the additives in Jack's milk to try and help him grow faster. Sometimes babies intestines have trouble digesting when the additives get too high, so they will be keeping an extra eye on him. Fourth, his arm is looking really good. No more puss coming out and the swelling has gone down a lot. They are still waiting for one more culture to come back in order to make sure they are using the best antibiotic. Finally, Jack seems so happy these days. His smile is not an uncommon miracle that we get to see almost every day. One of the nurses was so impressed because as she was giving him a new IV he was just looking up and smiling at her. We are glad that our baby has found something to smile about when he gets poked and prodded every day!

June 28:

Unfortunately, Jack went back up one setting on his PIP today. He wasn't doing terrible, but they are being extra cautious as they don't want him to crash again. They ended up changing his antibiotic today to one that is more suited for the type of bacteria in his infection. The antibiotic his has been on would work as well, but the new one is more tailored to directly treat his infection. He also has been on room air for the last few days, so that is a good sign. 

June 29:

Jack can't seem to catch a break with his IVs. They clot really fast and the nurses have been forced to replace his IV almost 2 times every day for the past few days. They have run out of really good IV sites and he has been poked more times in the past 48 hours than we can even count (one of them took 6 tries before they got it in his tiny vein). Jack also went up one more setting on his PIP today. I think it is all the added stress from these IVs! Again, his blood gas tests haven't been awful, but they are playing it pretty safe. The nurses seem a little annoyed with his respirator at the moment. He is breathing over the respirator on his own, so they aren't convinced the extra settings are even helping at this point. Who knows, opinions really vary by who you talk to, so for now, we are just in a good holding pattern. His infection on his arm looked a little extra swollen today, but they are confident the new antibiotic will clear it right out!

June 30:

This morning they started to flush Jack's IV with heparin every few hours in an attempt to keep his IV from clotting shut. Unfortunately that didn't seem to help as he went through 2 more IVs today. They are considering running a small amount of saline solution constantly through the IV to keep it open. I am willing to let them try anything at this point! He only has a few more days of these antibiotics and then he won't need the IV anymore!

I got a small glimpse of what it is like to hold Jack. I gave the nurses a hard time about advocating so hard for Molly and not me, so they told me to be quiet and hold him. :) Jack didn't seem too happy, but I think that had more to do with the 5 failed IV attempts immediately prior to me holding him. This made me want to hold him for real even more. He sends a touch of warmth throughout my whole body. I can't wait.

July 1:

Today was quite an adventurous day for little Jack. You may recall that there are several respirators Jack will most likely go through. First, there is his current respirator, which is called a jet and it requires an air tube and can give Jack between 350-500 tiny breaths per minute. Second, there is a conventional respirator which also requires an air tube and is very similar to the jet except that it gives a more standard 30-60 full breaths per minute. Third, there is SiPAP which no longer requires an air tube. SiPAP uses a mask and/or nose prongs to help pressurize air in the lungs. SiPAP is also capable of giving full breaths and mandating that a certain amount of breaths happen each minutes. Finally, there is CPAP (also what they use to treat sleep apnea) which gives pressurized air to breath through a mask and/or nose prongs, but is not capable of giving full breaths. All of these are different machines; however, each machine is capable of doing both its function and the function of the respirator below it. They do this so that they can test out a respirator without having to switch machines. They will then se if the baby tolerates it well and if it does, then they will switch over to a new machine.

Anyways, Jack's respirator was beeping because part of the machine he is on was making the air too hot and so the respiratory specialist needed to replace a few parts. The parts that needed to be replaced only affected the jet part of the machine, so they put Jack on the conventional settings on the machine for the few minutes it took to make the replacements. So, Jack went from receiving 450 tiny breaths a minute to 50 full breaths a minute. He took it like a champ. He stopped breathing over the machine and seemed more comfortable receiving full breaths. They turned back on his jet and Molly and I left. Molly and I received a phone call from the NICU about 4 hours later saying that the doctor heard how well he did those few minutes off the jet and decided to give him a real chance on the conventional respirator (especially because he had been pretty stagnant for the past few days). He LOVES the conventional respirator. He had the best blood gas test he has had since being in the NICU and his settings on the conventional respirator are already being turned down. I love how the conventional machine works as it is able to recognize when Jack initiates a breath and then help him complete that breath at the correct PIP and PEEP. It also mandates that he gets a certain amount of breaths per minute, in case he isn't initiating enough breaths on his own. So his PIP and PEEP are still important and still at the same level as the jet. This is a fantastic step forward.

In other news, his arm looks SO good today. It is clearing up nicely, but unfortunately Jack's IVs are still not cooperating. Poor Jack got 5 pokes today to get an IV in. He only has 2 more days of antibiotics, so this IV debacle will be over soon! 

July 2:

Jack LOVES his conventional respirator. His settings are down to 30 breaths per minute, so Jack is initiating a lot of breaths on his own. He has had 3 blood gas tests since the change and all have been really good, so I think the days of his jet respirator are gone. It is amazing that Molly and I didn't recognize how loud his jet respirator was. This new one is so quiet! And it is weird to put your hands in and touch him without feeling like his chest is breathing like a jackhammer! Jack was excited to get another visit from Cody and also was excited to meet Mike for the first time tonight!

They are officially getting desperate in the IV situation and they had to put one into a vein on his head last night. Fortunately, they are officially going to run a constant feed into the IV to keep it open. I hope it works! His arm continues to look better and better!

July 3:

Jack has gone down 2 settings on his conventional respirator settings just to prove how much he loves his conventional respirator! Our goal has always been to get the PIP to 16 and today we stand at 17. We are extremely hopeful that he will get rid of this air tube soon. His IV in his head has held out, so no more poking has happened. His arm also looks fantastic! I think Jack was just showing off for grandma Moana and grandpa Paul who arrived for their weekend visit today. 

July 4:

Jack celebrated his first fourth of July today with Molly, grandma Moana, grandpa Paul, and I. We decided that because he couldn't wear a shirt that he didn't need to match, but he better be ready to match next year. The 4th is Molly's second favorite holiday. He has had a fantastic day. They lowered his breath rate to 25 breaths per minute and he is initiating all other breaths on his own. 

The most exciting thing happened to me today. After almost 7 weeks of anticipation I was able to hold my little boy for the first time! It was amazing. I thought I loved this boy, but actually getting to hold my son in my arms forged a bond that I will never forget. It is hard to describe the warmth that shot through my whole body when they placed him on my chest. It was fantastic. Here are a few pictures, and yes, the NICU highly recommends skin to skin, so no, I don't normally walk around without a shirt on! There is also a good picture so you can see how small he really is.

July 5:

When we first came in this morning Jack had been holding strong at his new respiratory settings. His blood gas tests had been coming back in the normal range, but were a little too high to lower his settings any more. The doctor came and talked to us and she first expressed how happy she was with the progress Jack was making and told us that his current settings are quite low for a conventional respirator. At this point she was contemplating doing a small dose of IV steroids and then doing a planned removal of Jack's air tube. The IV steroids would help his lungs, especially after having an air tube breathing for him for so long. When we came back later in the day we were SO excited to find Jack without his airtube! Before the doctor could start IV steroids, Jack decided it was time to pull the air tube out himself. The doctor decided to give him a chance to prove himself on SiPAP and he totally rocked it. Molly and I are so excited. Getting his airtube out has been goal number 1 since day 1 and almost 7 weeks later we can cross it off the list. The doctors are still being cautious as many babies come off an air tube only to later have to get one again, but we are thrilled that he is going to not have an air tube for at least a few days.

Jack is also done with his antibiotics and we couldn't be more excited to also get rid of his IV! That thing has been such a problem! His arm looks completely normal and the nurse struggled to even find a spec on his arm. It was welcome news to hear the nurse ask this morning, "is Mom or Dad going to be holding Jack today?" Holding is going to become a once a day treat for Mom or Dad! We are so excited!

July 6:

Jack has made it past the 24 hour mark without the tube and his blood gas tests have been fantastic. They day most babies crash in the first 24 hours of a respirator change, so it is looking like a farewell to the air tube. His oxygen needs have increased as his oxygen content has been between 30%-40%, but the nurses have said that it is completely normal when babies switch respirators. Considering Jack has gone through two respirators so quickly, no one is worried about his oxygen needs. He is doing amazing and the doctor said that he "has learned to fly". We love to hear that our baby boy is going to fly! They also officially declared his armed healed and took off the bandages that he has had on for the past 11 days.

Sadly, we also said goodbye to Grandma Moana and Grandpa Paul today. Jack anxiously awaits coming home to see them again!

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 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.

Update: May 29 to May 30

May 29th:

Today has been really hard. It was the first day that walked into the NICU and didn't receive outstanding news. Jack is struggling breathing. It is funny to say that because Jack has a respirator that is breathing for him. They are mostly worried because his oxygen levels have been going high and low a lot with the same respirator settings and he seems very sensitive to any change. He is no longer on room air (21% oxygen) going in through his respirator and has been going up to 60% oxygen in order to keep his blood oxygen levels in the normal range. He has become what the doctors call a "chronic" patient now. Basically that means that his breathing issues have continued for a few days now and it is no longer possible that it is just an anomaly. X-rays of his lungs show that he may be experiencing respiratory distress syndrome. They are now adjusting settings of his respirator and watching what happens. If things don't improve they will consider switching to a new respirator to see if that helps. It seems like this kind of thing is not unexpected, but it still is hard to take in.

They are also doing full blood tests to make sure that he doesn't have an infection or anything else that may be causing his breathing problems. They are also changing his feeding tube to bypass his stomach and put milk directly into his intestinal tract. Now that his feedings are getting higher and his breathing worse, they worry that he may regurgitate some of his milk and that the respirator will then push the milk into his lungs, so they are trying to limit what goes into his stomach. On a positive note, we got to see a glimpse of his eyes last night! It was only for a split second, but we'll take it! They are thinking that they may be able to turn off his bili lights today or tomorrow so we'll get to see them often!

May 30th:

Today went from hard to amazing in about 1 second. When we arrived at the NICU the doctor and nurse gave us an update on Jack's condition. Jacks oxygen needs have decreased over the past 24 hours (he is usually sitting between 30% and 40% oxygen going in through his respirator) and a new chest X-ray from late last night showed his lungs in slightly better condition. He is still on some pretty high settings on his respirator, but they are hoping that he will cooperate today and they will take some of those back down. But hey, at this point a move in the right direction is a move in the right direction. He also received another blood transfusion (his third) yesterday as the blood results showed him slightly anemic. Other than that his blood tests came back normal (no infection). Here is to better news than yesterday!

After the update Molly and were sitting with him. I think we may have looked slightly depressed because I feel like the nurse was being ultra nice to us. We were thinking about heading out and the nurse came over and said it was time that Jack associated our voices with something positive. The nurse proceeded to move his bili lights, pop off the top of Jack's incubator, take the side down off his incubator, and take off his eye protectors (I call these his sunglasses, just for future reference). She told us to hold him firmly on the head and the feet like we had been doing through the doors and to just sing to him, read him stories, and talk to him. She told us to pay attention to his facial expressions and that they would tell us how he was feeling because it was time that he started associating our voices with positive experiences. We got to hold him and be right next to his tiny little body for the best 90 minutes of our lives. We sang primary hymns, read him a book, and just told him about the great people who love and support him. You better believe that we treasured every minute of this. He seemed so peaceful. He opened his eyes a bunch of times (this was the first time we really got to see his eyes). It was amazing. Jack's oxygen levels stayed stable the whole time and it was a good rest from the constant beeping of the alarms saying his oxygen levels were high and low. The nurse came about halfway through (I thought she was going to tell us we needed to be done) and just said, "see, sometimes all they need is some touch and love." After about an hour and a half the nurse finally came over and said we should probably close him back up. She also said that now that he is more stable we will be able to that more often. I think Molly and I were glowing the entire time and we walked out of the hospital on cloud 9. I just kept smelling my hand because for the first time, it smelled like Jack.

Here are some pictures from our experience:

Our first family photo:

Jack and Molly:

Jack and me:

Jack's eyes:

Jack and Dad giving a thumbs up:

Overall, I would say it has been a good day!

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 23 to May 28

May 23rd:

Today we received the results of the heart ecco. During the ecco they look for two things: First, they look to make sure that all of the chambers in the heart developed and are working correctly and second, they look to see if the ductus arteriosus closed. The ductus arteriosus is a blood vessel that allows blood to bypass the lungs while in the womb because the baby isn't breathing in the womb. It is common in premies to not have this duct close and thus not get enough blood to the lungs once they are born. We were pleased to find out that the ductus arteriosus is closed and that all four chambers of his heart are developed and working. When they are this small, there is the possibility that the ductus arteriosus opens back up, so it is something that they are going to keep a close eye on in the event he has any lung problems.

May 24th:

Jack has been started on breast milk now and after a few successful 1/2 milliliter feeds every 6 hours they are upping his intake to 1 milliliter feed every 6 hours (he is a big eater). He is still doing great. He has a respirator that breathes 450 little breaths every minute for him. They say the smaller breaths are easier on his fragile lungs. He is currently on room air, which just means that the machine is putting in air that is 21% oxygen. This is great because it could be an indication of good lung development, but the doctors also think he might still be in a "honeymoon" phase.

May 25th:

Jack has been fully digesting his milk so far. They have a feeding tube that goes into his stomach and when they want to see if he digested all his milk they use a syringe connected to the tube and pull up all of the air in his stomach and see what comes up. If milk comes up they call it a 'residual' and that means he didn't absorb the milk, but if nothing comes up then it means his system is taking the milk. Good news again as so far he has been clean coming up, which means he is digesting his food. They had turned down his jaundice bili lights, but his jaundice levels went back up. They are keeping it down for now, but said they will probably have to turn in back up.

May 26th:

Happy one week Jack! We can't help but feel like we have beat the odds so far. Jack received his second blood transfusion today. In order to make sure his breathing and nutrition is correct they do a lot of blood tests, so they monitor every drop of blood that comes out because they know he can't reproduce blood fast enough for them. They also told us that they are going to give Jack a PICC line today. This is just a more permanent IV that is going to replace the IV in his umbilical cord. Jack has been having some small problems breathing, but it seems like we shouldn't worry too much yet.

May 27th:

When we came in today we were surprised to find Jack situated on his tummy. He looked so comfortable and the nurse said that he had some very consistent breathing while being situated that way. His back is hairy! Jack's eyes also opened today. His eyes had been fused shut since birth which is normal. The nurse tried to get him to show us his eyes, but he didn't want to cooperate. He wrinkled his face up and you could tell he was so mad to be bothered.

May 28th:

Jack's breathing is starting to concern the doctors and nurses. His blood oxygen levels have been up and down a lot on the same respiratory settings. They say it is normal for premies to be sensitive to respiratory changes, but his change from being really good to not so good could be an indication that his ductus arteriosus (see May 23rd) opened back up. They ordered an ecco and it came back clean again and showed the ductus arteriosus closed. They are going to be monitoring his breathing closely to see if this is just a fluke or chronic. His feedings are up to 2 milliliters every 3 hours and he seems to be tolerating those well.

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.