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.