Take My Breath Away

I had a completely different blog post ready to upload over the weekend. I meant to proofread it but forgot, which is good because something happened yesterday that just completely took my breath away and pretty much was more important than what I was going to write about in my original post.

You see yesterday when the doctors gathered around Landon to discuss his plan for the day, his oxygen alarm kept going off. Instead of going off because he couldn't keep up his oxygen levels, it was going off because his oxygen was too high since he was breathing so well.

His nurse nonchalantly asked the doctor if she could turn his oxygen off. He agreed and they just turned it off and continued rounds as if a MIRACLE hadn't just occurred. So I present to you pics of baby who was never supposed to be born, was never supposed to have functioning lungs, a baby who can breath without any breathing support. God does listen to prayers, he just does stuff in his own time. Regardless of what happens from here on out, we got our miracle. We have the world's most gorgeous miracle baby (I know I am biased, but you have to admit he really is a handsome baby, worthy of an Anne Geddes portrait!)

Landon has had many visitors from the doctors and nurses who have participated in his care for the last 4 months to see the amazing feat of him breathing without support. It is so nice to interact with him when he is so much more portable without the oxygen prongs. He loves to be held and fed a bottle. He cries when I put him back in bed, making it so hard to ever leave him. He is a snuggle bunny!

We did have a few bumps this week as well. He is tolerating his breast milk, but is having trouble absorbing much of it before it 'dumps' into his ostomy bag. This is expected because the portion of his intestines that the original hole occurred is pretty high up in the digestion tract. Since most absorption occurs in the lower portion of the GI system, it makes sense that so much is coming out of the top half. They are trying to 'refeed' the output into his lower intestine but cannot do it as fast as he is dumping it from above. This is leading to him losing weight and nutrients. The doctors continue to try different medicines to help with absorption, but haven't found the magic bullet yet.

From a practical perspective, the increased output causes his ostomy bag to fall off, making a major mess and creating increased infection risk with Landon getting his hands in the output and then in his mouth. It is so frustrating dealing with this, but we are so lucky to have some awesome nurses who assist with this. One in particular, Paula, is always the first in line to help with Landon's bag. This is an unpleasant job that most people would run from, but Paula truly enjoys doing it and Landon (along with his parents) are always happy to see her!

On top of this, Landon's liver function tests are poor and continue to get worse. This is the result of being on the nutrient fluid TPN for so long before he could tolerate breast milk. It can take many weeks to months for his liver to recover, made even harder by his lack of ability to absorb the medications that could help. As the surgeons would prefer for his liver to be in better shape before surgery, this is just another setback.

Poor Landon also had to deal with an eye exam this week that showed the blood vessel problem has returned to the inner corner of his left eye. The rest of his left eye and his right eye look good, so the eye doctor decided to try to give Landon another injection in the left eye. This was a little scary as the injection is a very new medicine that has no information about the side effects of multiple injections. It is still preferable to the alternative of potential eye surgeries and blindness, but it is just another reminder of how the choices we make as parents today could have lifelong consequences to Landon.

Regardless, I am still going to focus on the miracle that God gives to us in every breath Landon takes on his own. I pray for God's direction in making decision for Landon moving forward. We hope to speak with his surgeons soon to get an idea of the plan for his surgery, but also know that sometimes we have to let go and let God (as my mom would say).

Lend Me Your Eyes, I Can Change What You See

Landon had a good week this week. It just goes to show you how fast things can change in the NICU. From being taken off the vent last Sunday to his first adventure in a swing today, I feel as if this week we were really able to open our eyes and see the real Landon. A Landon who is not in pain or trying to fight the vent tube or upset because he is so hungry.

The real Landon LOVES food. He is still being continuously feed through a tube in his nose, but was able to start trying a bottle this week. His biggest problem is in his excitement to get in as much milk in as a short a time as possible, he forgets to swallow and breathe. This kid eats like he has never been fed before and essentially he really hasn't. He is on full feeds of breast milk and no longer needs the nutrient liquid that was causing problems with his liver.

He is having problems digesting his food because the hole in his intestine was so high in his stomach and nutrient absorption usually happens in the lower intestine. This can be remedied by taking the output from his ostomy bag and refeeding it into the other part of his intestines. The hope would be that he can get enough nutrients to keep growing with this setup. We will know in the next couple of weeks if this is the case.

Besides food, Landon loves having the vent out and the elephant mask off. He is on a special form of nasal prongs that allow both oxygen and pressurized air to get into his lungs. He has been doing phenomenally on these and is so much happier. He now opens his eyes and really looks around like he is seeing the world for the first time. He is also much more portable with the nasal prongs, which allowed him to take his first trip to the 'playground.' The playground being a swing on the floor next to his isolette. He LOVES swinging and was very upset when we took him out of it to eat.

Now that he is doing better, we are hoping that the problems with his heart from pulmonary hypertension may be diminished. We will know later this week when he has a test to see how his heart is coping. We pray that the pulmonary hypertension is less as that is one less medication and complication he would have to deal with.

Now for a side not totally related to Landon's progress note. We are so lucky for the amazing friends and family that have been supporting us throughout this journey. I am constantly surprised for the thoughtful gestures, gifts, and prayers that we are given. These let me know that Landon has not only changed our lives but touched the lives of countless people. Such big shoes for such a little guy!

A 100 Days Confession

Today Landon's intern mentioned that he has hit 100 days in the NICU and said he deserves a party. The first thing I thought was 'what is there to celebrate, it has been 100 days and there is no end in sight.' She is right though, he deserves credit for every minute he has been alive. We have 100 days with him that my doctors said would never happen when my water broke. Regardless of what happens from here on, we are so lucky for these days.

I have to confess, Ryan and I try so hard to put the image that we are handling this effortlessly, but this is hard. When I was on bedrest, I would be sure that he was going to come nearly every night. I begged God to allow him to stay in me just one more day and he did. I am not perfect. I want to have faith and patience and strength in God's plan, but sometimes this seems like an impossible task. Last week was particularly impossible with the obstacles Landon faced.

He continued to drop his heart rate and the oxygen level in his blood to the point of needing resuscitation more than 6 times a day. Finally, it got so bad he had to be put on the ventilator. On top of that, they stopped feeding him just in case his heartrate problems were due to an infection in his belly. And then came the hardest news of all, they did a test to see how Landon's heart was working. It showed signs of a condition called pulmonary hypertension, which essentially is the first stage of heart failure. This condition is not uncommon with babies who have bad lungs. Their lungs are working so hard that it causes the heart to work too hard as well. Thankfully, Landon just shows the beginnings of this condition and it is still very treatable. His doctors are still figuring out the best treatment plan, and we should have a better idea of what they will do over the next few weeks.

After the discovery of his heart problems, some bacteria cultures showed that Landon had an infection in his throat. This more than likely caused the sudden onset of low heartrate and low oxygen saturation. He started to feel and act much better within a day of getting antibiotics for the infection. Today, he was feeling so much better that they were able to take out his vent tube. This was good because he HATED the vent much more this go around than any other time because he is older now. Our hope is that the infection made his heart show signs of pulmonary hypertension and once he is done with antibiotics in a few weeks, his heart will look better.

Just to make things even more interesting, his right eye caught up with his left eye and was on the threshold of needing surgery. He received the injection in his right eye as an alternative to surgery and so far it seems to be working. They will have to keep a close eye on both of his eyes, but hopefully his eyes continue to grow as they should. We do know he can see though because his new thing is to stare at the pooh bear stuffed animal we got him. We think he may like him because he is yellow and Landon is pretty yellow due his poor liver function. It is his brother from another mother!

I have received many questions about when Landon can go home. Trust me when I say that question is always in the back of my mind. The short answer is that it won't be any time soon. Although he is big enough to have his gut surgery, he is just not stable enough. He has to be off of the vent for an extended period time. They would also prefer him to be at full feeds of breast milk for a period of time to help his liver to start working better. These things will happen on his (Landon's) and His (God's) time. I wish I had a crystal ball to see when this will be. Instead I must pray for faith and strength and patience.

A Real Boy

Last week was a bittersweet week for us. Landon turned 3 months old and reached his due date. In a perfect world, he would be home by now. We say he is now a 'real boy' a la Pinocchio. We did have some good news last week. On Monday, the eye doctor came and let us know that the drug they injected on Thursday had worked and he no longer was at the threshold to need eye surgery in his left eye. His right eye was still ok. We were thrilled. This doesn't mean that he will never need eye surgery, but it at least puts it off for a little while longer. He will get weekly eye exams to keep an eye on it. (Haha pun intended).

On the feeding front, they continue to increase the amount of breast milk he gets through his feeding tube while decreasing the nutrient fluid called TPN that he has been dependent on since birth. Adding to this fun (warning the following sentence involves poop), they have started taking out the output of poop from his ostomy bag and 'refeeding' it into his lower intestine. This basically causes him to poop twice, once in the bag and once the normal way. They do this to get his lower intestine to start working before they try to reattach it. This also allows Landon to absorb more calories since a lot of the body's nutrient absorption happens in the lower intestine. If he continues to tolerate his feedings, he will eventually be able to try to bottle feed. Given the way he LOVES sucking on his binky, we hope that he will have little problem bottle feeding.

We were also happy to find out that our July doctor team is actually a flashback from April with Dr. D as our attending and Dr. Karen as our fellow! Even more fun is that we randomly know our two interns, Dr. Courtney and Dr. Megan from outside of the hospital. I went to grade school with Dr. Courtney and her parents are friends from church with my parents! Dr. Megan is the cousin of the best friend of one of my good friends. God is just sending us angels from everywhere! We even got a special guest visit from Dr. Nancy Pretty Eyes, who was very impressed with Landon's growth.

Speaking of angels, I must interrupt our regularly scheduled program to tell you about the adventures of Ryan and Landon's main primary nurse Kimmy, aka The Other Mother. Since I have gone back to work in the afternoons, Ryan is alone with Landon on Thursday and Friday afternoons. Apparently, this is not very stimulating for him as he has decided to wage a prank war against our wonderful nurse Kimmy! It all started when Kimmy was appointed the official 't-shirt giver outer' of a team she participated in at work. This was a big deal as in past years people didn't receive their t-shirts and anarchy ensued. In order to avoid this, Kimmy had a system of giving out the t-shirts and checking off a person's name once they got theirs. Ryan decided it would be funny to hide the t-shirts throughout the NICU room. I came back from work to find Kimmy frantically looking for the t-shirts and Ryan with a mischievous look on his face. I got Ryan to fess up and Kimmy was already formulating how to get him back.

Unfortunately, Ryan was too fast for her, probably because she is too busy taking care of our baby to wage prank wars! He decided to put a piece of tape on the bottom of her computer mouse so when she went to chart what Landon had been doing that day, her mouse didn't work. Ryan got Landon's neighbor's parents involved in the fun and I once again walked in from work to find the 3 of them snickering as Kimmy contemplated calling engineering to fix her computer. The final blow was when Ryan used a prank phone call app on his phone to call Kimmy and tell her that her credit card had been used to purchase exotic pets in Guatemala. He admitted to doing that one about the time Kimmy started looking for a garbage to puke in out of anxiety of having to work through a credit card fraud nightmare. I was pretty mad at him for that little stunt. However, after getting over the shock, Kimmy wasn't too mad at him and is already thinking of payback...

Alright back to Landon. The last three days have been more of a challenge then usual. He has started a fun new trick of holding his breath until his heartrate drops to the 40s and then drops the oxygen level in his blood to almost nonexistent. The result is a rush of nurses working to make him start breathing again and sometimes even having to resusitate him with an oxygen bag giving him manual breathes like with CPR. This event happens about 4-5 times a day and causes our hearts to race each time. It is usually followed by Landon pooping. We think he is just so uncomfortable from using him lower intestine for the first time that it takes his breath away. Just to be sure this is related to him learning to poop, his doctors are doing some tests. They are testing to see if these episodes may be seizures or if something weird is going on with his heart. There is a very small chance that this is anything other than a pooping issue, but better safe than sorry.

Potato Head Baby

We had another crazy week in the NICU, more crazy then a typical NICU week. We were still reeling from the shock of Landon's broken femur, his possible infection, and being put back on the vent when we got more bad news. Every other week he gets an eye exam for a condition common to preemies called ROP.

It is unknown what completely causes ROP in preemies, but doctors believe it has something to do with the oxygen many preemie babies need in the NICU. Basically, a baby's eyes mature in the third trimester and the oyxgen levels in the womb are optimal for that eye growth. When a baby is born very early like Landon was, they often need high amounts of supplemental oxygen to help their lungs work. Researchers have found that since this oxygen is not the optimal level as in the womb, it can cause the blood vessels in a baby's eyes to grow out of control. In the worst cases, the blood vessels can grow so out of control that the retina could detach causing blindness.

There are different stages of ROP depending on how bad the blood vessels are out of control and where in the eye those blood vessels are located. In Stage 3, most eye doctors will recommend laser surgery on the baby's eye to destroy the part of the eye that triggers blood vessels to grow. This causes a loss of peripheral vision, but saves his overall vision. Once a baby's eyes are mature, then the risk of ROP is gone. Since maturity often occurs around 42 weeks, Landon only had a few weeks until his eyes were mature. Most preemies have a small amount of ROP that resolves as they get older. Landon had a small, unconcerning amount in every exam. This wasn't too scary given that almost every preemie baby in the NICU had that same amount.

That was until this past Monday's exam when we were told his left eye was now Stage 3 and coming extremely close to needing surgery. This was such a shock when all of his exams had been clear and he was so close to having mature eyes. Not to mention all the other bad news we had gotten, this really was a hard blow. We decided to be proactive about treating this condition. I remembered that one of the doctors had told me about a new drug that recent studies have shown works just as well on ROP as the eye surgery without the loss of peripheral vision. I immediately read the research on the drug and requested that his eye doctor consider trying this drug in an attempt to avoid eye surgery. After some back and forth, the eye doctor agreed to try it and he received the injection on Thursday. We were told it should only take a few days to see if it worked and the doctor will be back on Tuesday to check. We are hoping and praying that this one thing goes right for baby.

Now that you know more about preemie eyes then you ever wanted or needed to know, on to the good news! Landon was able to get off of the vent and is now back to the baby elephant mask woohoo! We hope this is the last time he is on the vent before his stomach surgery. Even more importantly, Landon started getting fed breast milk on Friday! His is very slowly being fed small amounts through a tube in his nose to get his gut used to food and digestion again. So far it has gone ok, though his poor tummy is bloated. That is not a total shock, imagine if you had not eaten in 3 weeks and then starting eating again, you would have some bad gas!

It is important he tolerates his feeds for a few reasons. First, the breast milk will help his bones to grow strong. It will also help his liver as the nutrient fluid they are currently using has been very hard on his liver. Also, we will eventually be able to bottle feed him. Though there is a small chance that having the vent tube in his throat for so long may have created an oral aversion for him, making him not want to put even good things like bottles in his mouth. We will hope that is not the case and look forward to the day we give him his first bottle! The last reason why it is important he tolerates his feeds is that if he cannot tolerate breast milk, he will need to have his stomach surgery sooner than would be best for him. The bigger we can get him before surgery, the better off he will be.

On the upside, Landon has grow by leaps and bounds! He is nearly 7 pounds and still growing. This means he is right on track to be on a normal growth percentile for his adjusted age. We laugh because when we saw him first on an ultrasound, we called him pickles since he looked like a pickle. When he was born we called him a peanut and now I call him Mr. Potato Head because he is so big his head looks like a potato. Which probably isn't as bad as when I call him a Tomato head (this is when he cries.) He is almost so fat we may have to call him a yam soon!