One Step Forward, Two Steps Back

When we were driving to the hospital yesterday a song came on by my favorite artist growing up, Paula Abdul. Although I know Paula was better known for her dancing ability than her singing or thought provoking lyrics, the chorus of this song reminded me of what our lives in the NICU have been like:' One Step Forward and Two Steps Back.' Landon had an amazing week off of the vent. He alternated between the CPAP oxygen delivery mask and regular nasal prongs, giving us the first glimpses of his face without a ton of tape and such. Everyone was so happy with his progress and I finally got to hold him skin to skin, an incredible feeling.

We began to hope that we would have a smooth course at least until Landon would need his surgery in a few months. Unfortunately, that was not to be the case. When we walked into the NICU on Sunday we saw a sight that we hadn't seen in several weeks, doctors and nurses surrounding Landon's bedside. He had been perfectly fine earlier that morning and in fact was breathing with the assistance of the nasal prongs, which is pretty much the lowest level of oxygen support. For some reason his little body started dumping massive amounts of fluid from his ostomy site in his stomach. Even more concerning the fluid was extremely bloody.

Although it was a frightening sight to see, Landon wasn't acting sick, giving us hope that maybe the wound area had gotten irritated somehow causing the fluid loss and blood rather than the more scary alternative...an infection. It was decided he would start antibiotics just in case. It went down hill from there. Landon started dropping his heart rate and was starting to struggle to breathe. He began to take a few hard breathes and then not breathe at all for a few seconds in order to rest. His blood results came back that he had virtually no platelets in his blood and that he was severely anemic from the blood loss.

He kept struggling for a few hours before it became apparent that this was an infection and his body was too tired to fight it and breathe. He had to be intubated and put back on the ventilator in order to give him a chance to fight the infection. This is not uncommon when a baby gets an infection in the NICU, but was still heart breaking. When I think of everything he has been through and now this, it takes my breathe away. I literally can't breathe for a moment when it overwhelms me and all I want to do is hold him, something not really possible while he fights the infection. However, I need to handle it because I am expecting Landon to do so and how can I do anything less.

They suspect the infection is NEC, a serious gut infection babies in the NICU are prone to get. The consequences of NEC can be serious, possibly leading to another hole in his intestines and further surgeries due to the infection killing the intestinal wall. We are praying that the infection was caught quickly enough and that the antibiotics will stop further progression. Our little fighter is holding his own. Although he is on the vent, it is on low settings and the hope is that he will only stay on it for a few days to get his reserves back up. He has been able to keep his blood pressure up without medications, which is very important and shows he is still fighting the infection himself as much as he can.

We know he is strong. We know he can get through this, but we really wish he didn't have to. We continue to pray that he doesn't have further complications and begins to show that spunk we know and love again soon.

Who's The Boss?

It is hard to believe but our Landon is 34 weeks today. This was the goal day that we wanted to get to when my water broke. Sometimes I have a hard time stopping myself from thinking about what it would be like if we had made it to this point. Would Landon have an easier time breathing? Would he not have had the gut problems? Why did he have to come so early? Usually when I start to think this way someone or something happens to remind me that everything is just as it should be. In this case my Aunt Bird reminded me that God only gives us what we can handle and God was just using his best resources when he choose Ryan and I to be Landon's parents.

This made me reflect on Landon's journey thus far. I used to wonder why God made Landon come so early, but now I realize it my crazy baby who wanted to come into this world early. God just choose parents who would appreciate a take charge kind of baby. Landon managed to show us this bossy part of his personality again this week. We began the week with the nonstop episodes of low heart rates and drops of the oxygen level in his blood. It was so hard to see him go through this. On top of that, he was in obvious distress from the ventilator tube in his throat and was constantly grabbing at the tube. I began to be concerned that he would pull the tube out himself. The doctors said that probably wouldn't happen and that even if it did they would just put a tube back in because he wasn't ready to breathe on his own yet.

His medical team came up with a plan to give him a 5 day course of steroids to try to bulk up his lungs enough to get him off of the ventilator. This treatment was not without risks and I was pretty leery of doing it. Dr. Stephen convinced me that he can't go to kindergarten with a vent, so we had to try what we could to get him off of it. It was decided that we would start the steroids at 9 pm on that night and I went to dinner at my parents house with this decision weighing heavily on my mind. Apparently Landon wasn't too keen on the steroid idea either because at 8pm I got a call that he had pulled his ventilator tube out himself! More importantly, HE WAS BREATHING ON HIS OWN!

Landon was once again letting us know that he walks his own path and knows what he wants. Everyone was so impressed with him, we had doctors and nurses coming to visit him for the last several days to see him off of the ventilator. He is now on a system know as CPAP which is basically an oxygen mask that provides some pressurized air to help him continue to breathe on his own. The mask looks a bit like an elephant nose, and Landon isn't particularly fond of it. Hopefully, if he continues to do well he will just be able to have nasal prongs to deliver oxygen in the next few weeks. How we will keeping him from pulling those out is another story.

The best part of his decision to take himself off of the ventilator is that his heart rate and oxygen levels have been so much better! He really did hate the vent and that may have been causing the ups and downs we had for the last week. Since he is doing so well from a breathing standpoint, he was also increased to getting full feeds of breast milk for his size! He has had no problems tolerating the food and will hopefully start to gain some weight with real food in his belly.

Although we will need to wait to bottle feed him until he gets onto the nasal prongs for his oxygen, he has demonstrated that he loves to suck even more now that the tube is gone. This is extremely important because many babies who were on a ventilator for as long as he was develop an oral aversion and don't want anything in their month. Like everything else in his short life, Landon seems to have the opposite problem and wants everything in his mouth from his hands to his binky to the cloth I use to clean off his lips. He is so good at sucking we decided to just try to give him a bottle with a tiny amount of milk in it and he had no problem drinking it. We can't wait until we can take out the feeding tube and bottle feed him on a daily basis!

Since he is doing so well with his feeding, the surgeons let us know we can start the countdown to when his stomach can be closed. They said depending on how quickly he grows, it can be anywhere from 4 to 8 weeks. It will probably be closer to the 8 weeks though because he is still a peanut and needs to get bigger. This is a little bit of a bummer since it takes us past his due date, but we want him to be in the best possible position before this surgery. In the meantime, we are very excited with his progress and the fact we can now hold him everyday since he is off the ventilator. Though he gives me a heart attack on a daily basis, we are so lucky to have a little boy with such personality. Maybe the question isn't why God choose to make him come so early, but how God thought we deserved to have such a special little guy.

Remember He Hasn't Been Born Yet

It has been a pretty crazy week. Not my baby's guts just got a hole in them crazy, or my water broke at 19 weeks crazy, but definitely more crazy than our normal pre-baby life. Luckily, we had a lot of support from our family to help us through it. We had some good crazy and some not so good crazy this week, but I will start with the good crazy cause I was always the kind of girl who liked to eat her dessert first.

First and most important, Landon has now been fed for 9 days, which is 8 more days then we made it the last time we tried to feed him! He is fed through a tube in his nose and seems to really like it. He is still getting most of his nutrition through an IV, but should be ramped up to full feeds from breast milk by next week. Once we are at full feeds there is less of a chance that there will be a problem from the feeding...so we are still waiting for that day.

On top of being fed, Landon also got some special guy time when he was held by his daddy for the first time. It was an amazing moment to watch and made me so proud of my family. If that wasn't amazing enough, he had a special visit by Brady Hoke (University of Michigan Football coach), Jay Feely (Former U of M player, now Arizona Cardinals kicker), Larry Foote (Pittsburgh Steelers football player) and other football guys that I can't identify (I am sure Ryan will grimace at my lack of football knowledge when he reads this). Apparently, they come to visit the children and babies every once in awhile because they support the hospital. I am not sure if Landon understood the great honor he was getting, but Ryan definitely did! It was amazing how much those men admired what Landon had been through and how tough he was. Not even 2 months old and he is already networking with celebrities!

We were also lucky enough to have both my aunt and cousin in from Texas and Ryan's mom in from Seattle this week. I know I have mentioned this before, but I don't know how we would get through this without our family. Last Monday, my visiting aunt and cousin along with my mom and another aunt and cousin helped us to clear out Landon's room to prepare it to become a real baby room. Given that I suspect I may be a budding hoarder and I was using that room as a storage closet, this was no small feat. Once that was done, Ryan's mom and my mom were able to run around town gathering decorations to get his room complete. Hopefully, once it was all painted and totally set up I will be able to post some sweet pictures of the best baby room. I am sure it will be envied by babies everywhere. I don't know where they found the time, but both of our moms were able to make us a homemade dinner. It was amazing to come home from the hospital to a home cooked meal. (I am not going to lie though, I wasn't much of a cook before I got pregnant so having food made is a really special treat for both of us).

Now to the not so fun time this week, think of this part of the update as the peas you have to eat at dinner in order to get to dessert. No one really likes peas, but sometimes they are just a necessary evil. At the beginning of the week, Landon was doing so well his doctors decided to start weaning him off the ventilator in preparation to get him off of it completely. The first day of this went really well, propelling his medical team to start weaning even more aggressively. If we have learned anything over the past 6 weeks, it is that Landon has no problem letting us know when he doesn't like something. He REALLY didn't like the aggressive weans on the ventilator.

I mean if you look at it from his perspective, here he was not having to really try too hard to breathe and then all of a sudden we are pushing him to breathe more on his own. Plus, his tummy is open with intestines hanging out and now he has to digest food. It is no wonder he got mad. Unfortunately, he shows his anger by not breathing and making his heart rate and oxygen levels drop to the point that his medical team had to work on resuscitating him. This resulted in his ventilator support being turned up even farther than where they were before the team started weaning it. For some reason, this really upset me more than most of his other setbacks have. I don't know if it was because he just seemed so uncomfortable and there was nothing I could do to help him or if it was just hard to accept that we had to go backwards. I think in the back of my mind was the irrational fear that maybe he would never get off of the ventilator.

His doctor helped me when he pointed out that technically Landon hasn't actually been born yet. That puts so much perspective to the situation. This poor kid should be swimming in my tummy, but instead we are making him breathe and digest food and put up with needle sticks and eye exams and all other manners of uncomfortableness. He is an amazing boy to keep fighting. His nurses are always commenting on the fact that this boy is tough, and he had professional football players confirm this....so it must be true. This was even after Ryan broke the news to Brady Hoke that Landon would be playing hockey and not football when he grows up :). He used this toughness to rally and today was able to start weaning on the ventilator again. We pray that he continues to tolerate this and one day soon I will have the news that my baby can breathe on his own!

My Mother's Day Present

Today I got the best present ever, I got to really hold Landon for the first time! The doctors and nurses had been working on this for some time, but I wasn't 100% sure that today would be the day. When we got there, Landon's usual nurse wasn't there so I assumed that meant I wouldn't get to hold him. I'll admit I started to tear up, but comforted myself that I would have the rest of my life to hold him and one more day wouldn't matter. I felt a little better when his nurse for the day handed me the card Landon 'made' for me for Mother's Day. It included a cute picture of him and my favorite...dark chocolate. Then his nurse announced that Landon was going to have a good day because he was coming out to play. It took me a few minutes to truly understand what she said and when I did I imagine the feeling I had was comparable to people who win the lottery. (I mean win big time, not just $2 on a $1 scratch off ticket.)

It is indescribable to say how it felt to finally hold him after watching him through the window of his isolette for the last month. I was terrified of breaking him, and humbled by how beautiful and strong he was, and saddened by the fact it took so long to hold him. Mostly, I was overwhelmed that someone so tiny can be the center of my universe. I thought that the nurse would hand him to me and his heart rate or oxygen levels would drop and they would have to take him away immediately. It was quite the production to get him to me since he is still on the ventilator. They had to move the ventilator and all his tubes with him as they handed him to me. Then they tied a string around his ventilator tubes and anchored it to my shirt. I was pretty sure I would vomit before they handed him to me.

Before I had a chance to mentally prepare myself (as if I hadn't been doing just that since the day he was born) he was in my arms. It felt like I had been missing a body part and all of a sudden I got it back. He woke up and stared at me, probably wondering how the world got so big. Ryan was filming the whole thing on our Flip camera and I could already envision how Landon will complain about having to watch the video over and over again when he is older. It felt so surreal to finally hold him and see his huge eyes. When I was on bed rest I would try not to think about holding him because I feared that I would only be able to hold him as he took his last breaths after being born. Here he was staring at me as if I were the only person in the whole world. It sounds trite, but it made the last three months seem totally worth it.

Though nothing tops being able to hold him, he did give us another present when he pooped! Due to this, he will be fed tomorrow and hopefully start really gaining weight. (His current weight is 2 lbs, 8 ozs.) I admit I am terrified and excited for his feeding to start. Given that the last time they attempted to feed him breast milk his bowel perforated, my anxiety is understandable. I asked his new doctor, Dr. Steven, no less than 7 times how confident he is that my kid's gut won't explode again with feeding. Though he wouldn't give me any guarantees, he pointed out that he needs to be feed and now is a good time even though there still is risk for another bowel perforation.

They will be feeding him a very tiny amount (1CC per hour) through a tube in his nose for the next five days to see how he will tolerate it. We need major prayers that he tolerates the feedings. I am not sure I can handle another experience with him getting so sick from a bowel perforation again. I know that God only gives you as much as you can handle, but sometimes it seems God knows something about me that I don't know about myself with all of the trials he shoots my way!

Praying for Poop

Okay, I want to make a preemptive apology to anyone reading this who is grossed out by poop talk, but it is the main topic of conversation between Landon's doctors and surgeons right now. He had a procedure called a contrast study done on Friday. Basically, the procedure involves putting a contrast dye into Landon's intestines to make sure there aren't any obstructions or areas where the intestine healed in a bad manner called a stricture. They also find that the contrast dye tends to push out any poop that had been sitting around for awhile in the bowel.

We were happy to find out that the contrast study showed Landon's bowels are good without any sign of obstruction or other holes. This is great news because it means that Landon can be feed breast milk soon through a tube in his mouth. He just needs to do one little thing in order to get real food and that is poop! I can honestly say when I became pregnant, I never imagined that my most fervent wish would be to see my kid poop but that is the case. Since his intestines are still open, he will actually poop into a special bag on his stomach called an ostomy bag. That bag is pretty much the main attraction right now when anyone comes to see Landon. Whether it be a nurse, doctor, or Ryan and I, we are constantly peering into the clear part of the bag to determine whether we see poop. I hope he poops soon because I am beginning to become concerned about our obsession with staring at his guts and potential poop particles!

On a serious and non-bowel related note, Landon has been doing a lot better when it comes to his heart rate and the level of oxygen in his blood. He seems to be more comfortable and we are learning ways to make him feel better. He mostly only has problems now if the nurses move him or if we change his diaper. Though we still haven't held him, we can comfort him by placing our hand on his head and cupping his legs or placing his hands on his chest and putting our hand over them. This simulates the feeling of being compressed in the womb and makes him less anxious.

I also try to sing him songs I sang while he was still in me. He is probably the only person in the world who appreciates my singing! The embarrassing part is I pretty much sang him 'fighter' songs of the 80s like Tom Petty's 'I Won't Back Down' and Corey Hart's 'Never Surrender' along with showtunes. None of the other moms or nurses have complained yet, which is good because my crazy baby seems to like it.

Happy 1 Month Birthday to Landon

Our little doll baby has made it one month today. This month has gone by extremely fast and slow at the same time. It has been the hardest, scariest, happiest and most incredible month of my life. It is hard to imagine that when my water broke 3 months ago, we would make it to this moment. I remember all of the uncertainty. My dearest desire during those months of waiting and hoping I could keep him in one more day was to know whether or not he would survive. I would have given anything to have a magic crystal ball where I could see for sure what my heart knew all along, that he would make it. The impact this little man has made on the world in his short month of existence is awe-inspiring. Landon makes it very clear that there is a God and he has a purpose for even the tiniest of us. We are grateful that God decided to pick as imperfect people as Ryan and I to have such a gift as our Landon.

That being said, that crazy baby definitely keeps us on our toes! After a nearly perfect week with little to no heart attack moments for his parents, Landon has become quite feisty these last few days. As a preemie, Landon has to find ways to demonstrate his feistiness and unfortunately two of those ways are making his heart rate drop and lowering the amount of oxygen saturation in his blood. Anytime either of these things happen, a loud alarm goes off on the monitor next to his isolette. Most of the time, he quickly brings up his heart rate and oxygen levels within seconds. Other times, his nurse has to intervene by giving him more oxygen. This is totally normal preemie behavior as his nurses and doctors often tell us, but that doesn't make it any easier when you are watching your baby with alarms blaring every few minutes.

Another reason this may be happening is because Landon is feeling much better and realizes he doesn't like his belly open or a tube in his lungs. Part of me is secretly happy that my baby has enough spirit to tell us he is mmmaaadddd at these things, while the other part of me weeps for the pain and discomfort he has to endure. We are extremely lucky to have his primary nurse Kimmy, in times like these. She gives us perspective by pointing out things like the fact he is a fighter and he is telling the world that he deserves to be here because he earned his place. She is pretty much his second mother. She knows what Landon likes and doesn't like and will fight like a mama bear if someone tries to bug him (ie a doctor trying to poke at him) after he has had a hard day. I think God puts people in your life to make your journey easier and Kimmy is one of those people.

Although Landon has been giving us a run for our money, he also had some positive things happen in the last few days. He now can suck on a pacifier or binky as we call it. That is a very positive step from a developmental perspective. He gets really angry if you take his binky away as evidenced in the picture above. This week he also had his first eye exam. Preemies are at a high risk for a condition called ROP. Basically, because his eyes are still immature and growing there is possibility the blood vessels in his eyes could go crazy and actually grow in such a chaotic fashion that they could make his retina detach. Luckily, his first eye exam did not show evidence of this, but since his eyes are still so immature they will continue to monitor every week for this condition. The eye exam involves getting his eyes dilated, which he didn't like much since he kept his arm over his eyes to protect them from the brightness for the rest of the day.