Serious upgrade

Yesterday our doctor surprised us and said if Kyle's repair looked good today, we could do a swallow study after Kyle came out of the anesthesia.

They quickly made us an appointment in Radiology as soon as Dr. Milczuk said that everything was now as it should be.

Here's Kyle in his fancy positioning chair. He happily played the drums on the wall until...

it was time to do the test. We were all in our lead aprons and he was really sad. I had performance anxiety for him. I asked our doctor how a baby like Kyle does getting food put in his mouth after eleven months of not having anything orally. Would Kyle even know what to do with it? He said that was the million dollar question.

The speech pathologist took apple juice and yogurt and mixed them with barium. We got the concoction in Kyle's mouth and tried to time the x-ray with his swallow. They did a thin liquid test (like juice or breastmilk), then purees, and one more try on the thin liquids. He didn't like the test, but he passed them all with flying colors.

This is a big freaking deal. A normal swallow study after a laryngeal cleft repair is very rare. We were not expecting these results.

This was my stunned face as the speech pathologist was telling us Kyle's results and what that meant for his eating plan.

  The speech pathologist gave us a lot of information, loaded us up with some supplies and told us to feed our baby.

So, when we got home, we busted out this...

 

but that ended like this.

 

We switched to a sippy cup, and he did much better. He would smack his lips and try to lap up the drops that came out of his mouth.

We tried again before his last feed for the day. Kyle is really interested in milk. He gets excited for it and opens his mouth for his cup. He took about 10 mLs this time. Right now, we are focusing on getting him to enjoy drinking milk, and later, we will slowly work on increasing his volume.

Waiting for Kyle...

We are back at Doernbecher, waiting to find out if Kyle's laryngeal cleft repair held. Because his wound is in his airway, he is sedated, back in the operating room. I don't know if Kyle remembers being here 3 weeks ago, but he was unhappy as soon as we went to the pre-op room...

Kyle's surgeon just came out and said that his repair looks great! He is waking up from anesthesia and they will attempt a swallow study today. That is where they try to feed him food or liquids with barium (tasty!) and x-ray him while he swallows to see how his swallowing mechanism works. We didn't expect to do this until end of January, but we are thrilled Kyle is moving along on his journey!

Here's a picture of Kyle on Christmas Eve wrestling his new crocodile cuddleuppet (courtesy of his sweet cousin). He loves it!

Home again, home again, jiggety jig

We've been back home for about a week. The fear that followed me when we first came home has dissipated. Kyle's breathing is back to normal and he no longer has any stridorous episodes.

Here two pre-op pictures of Kyle in his styling hospital gown. 

 

I love this picture. The first almost 24 hours after surgery, Kyle was very disoriented and confused. We held, rocked, and sang to him, but he didn't seem to find comfort in our presence. I'm pretty sure the anesthesia was still doing its dirty work. The next morning, he woke and had his sparkling personality back. 

  

 We've seen improvement of his vocal cord function as he heals, but the reflux is still voluminous. Every medical person I've talked to has said he will naturally grow out of it, but we're past the point where I find it acceptable. I finally contacted a friend who does food intolerance testing and asked if she thought Kyle could benefit. His reactive list is extensive, and now I am on a strict elimination diet to see if we can get his system to calm down. For now, I'm off gluten, corn, quinoa, oats, turkey, pork, broccoli, asparagus, white potatoes, grapes, apples, garbanzo beans, etc. As you can see, this means no more Oreos. So, my oreo/joe-joe habit is now broken. I have high hopes for this because I don't want the medical field's alternative: a surgery to wrap the top of his stomach around the bottom of his esophagus to make it physically impossible to vomit. We aren't too that point yet, but the surgery keeps getting mentioned. I'd rather avoid an extra trip to the OR. 

We're in another brief holding pattern while his airway heals. December 28 we go back to the OR, so his surgeon can sedate him and get a good look at his repair. At that point, we should know if the repair worked. If it did, we will schedule a swallow study around the end of January to find his baseline function and put together an "introduction to foods" plan.

December 15

I've spent the last week reflecting on where our family was one year ago. I see myself chowing on a box of Candy Cane Joe-Joe's. I remember trying to figure out how to make a silhouette in photoshop for teacher gifts. I hear myself promising Blake over and over again that I would get his birthday cake made. I spent my evening at a meeting trying to map out the next month for the kids at church. I came home way too late and crashed into bed. The next thing I knew I started the wildest ride that I've ever been on.

This year, I woke up and got to go downstairs in my own house and hug the sweetest birthday boy. I saw his glee as he opened his birthday presents, and I heard him tell me I was the best mom ever when he saw the birthday cake I made him. It didn't happen last year, but there was nothing that would stop me from making his Special Agent Oso cake.

His cousins joined us at Chuck E. Cheese and he got his Bucky toy that he's asked for over the last two months.

I am so grateful that I could be there this year. Blake is fun. He is sweet, and he is learning so much every day. At 4, his favorite food is french toast with buttermilk syrup. He loves Carolyn so much, and he is constantly singing, "Stop! Collaborate and listen! Kyle's back with a whole new edition!" It's awesome.

Happy birthday, Blake!

Getting close

Kyle's back in big boy clothes. He's eating full feeding amounts. He wants to cheese for the camera. This all adds up to a hospital discharge!

We are waiting on paperwork, etc., but his surgeon has cleared him to go home.

End of day 2

I guess it isn't really the end of the day, but it feels like it should be. Jeremy and I decided that we should alternate who stays with Kyle. Last night I got to stay. Kyle had two more episodes where he got really mad and his oxygen levels dropped. They turned on the oxygen and tried to calm him. The first time they suctioned secretions out of his throat; and, the second time he stayed mad until he got some morphine. Since 5 am, he's been on room air. There's been a time or two where his levels dropped, but he was able to recover on his own.

We didn't start any milk yesterday. Because he was still having problems, we wanted to hold off as long as possible. He had IV fluids and was content without milk. Around noon today, we gave him 2.5 ounces of milk over two hours (opposed to his usual 5 ounces over an hour). He did really well with that and was given permission to leave the PICU.

We are still here though. They don't have any beds on the other unit, so we are just chilling. Dr. Milczuk says once we get him up to full feeds, he will discharge Kyle. I would love to have him home, but , man, it makes me nervous. His little voice has changed and the tenor of his breathing is different post-op. This is all to be expected because they modified his anatomy, but it makes him feel a little bit foreign to me. It is just another transition phase, and we will get the hang of it soon enough.

Right now Jeremy and I get to spend more time together than we have in a long time. I like it.

I miss these kids

We're getting some smiles!

Doing better...

Kyle is doing much better than earlier in the afternoon. He is doing better with his oxygen and taking his pacifier. He came out of surgery with a really dry mouth (he was intubated for the first part) and didn't want his pacifier. I am so glad he has it now though. It's helped his crying spells be shorter and that helps his oxygen.

He still has all the other cords: IV, blood pressure, heart rate monitor, oxygen monitor. This makes him very difficult to hold, but the snuggles are so worth it. I love his little hand gripping Jeremy's shirt.

They are going to attempt to start a very slow drip (5 mL/hour) of breastmilk and see if he tolerates a little food in his belly.

And they have pediatric coban! What's cuter than a blue camouflage foot?

In the PICU

We are out of surgery and settled in Kyle's room in the PICU.

Dr. Milczuk said that Kyle's repair was difficult because the workspace was small, but he felt good about it when he finished.

We waited a long time before they called us back to see Kyle. When we saw him, he was struggling to keep his oxygen levels up. There was a lot of crying and not enough breathing. He stabilized well enough to leave the recovery room.

Now we are just trying to manage his pain while the anesthesia wears off. The poor kid is disoriented and uncomfortable, but he is doing well.

On the eve of surgery

I never meant for my blog to be dormant for so long.

I have a lot of pictures backlogged that I kept thinking I would get posted. It's not going to happen.

But, I reactivated because I really regret not keeping a more complete journal of our time as a family these last 10.5 months. We have a big step coming up tomorrow: Kyle's repair surgery.

I am nervous. We've been in this holding pattern, and tomorrow starts our journey. All this mess with the g-tube is in between stuff. The real goal is not to learn to manage that well (which I think I have) but to teach Kyle to eat. I pray that tomorrow Kyle's surgeons' hand are steady and sure as they operate.

We expect to be in the hospital with him for 3-5 days. I don't know what to expect with a crawling baby in the hospital. Last time we were there, I could spend 6 hours in the hospital and get maybe 5-10 minutes of eye contact. Now...well, now this kid can hardly hold still. He wants to look and go and see.

I will do my best to update on the blog as we go. I know that a lot of people have offered prayers for Kyle and our family over the last year. We appreciate every single one.

Road trip!

Today was supposed to be Kyle's big debut at church. We would have our entire family at church for the first time since mid-December. But plans changed, and we braved a trip to Olympia to see my grandparents.

We did some maneuvering to get the driving in around Kyle's feeds and the time he has to be held upright, but we made it. In fact, it went astonishingly well.

 We were able to introduce Kyle to my Grandma

 And to my Grandpa...

 

 This is my favorite picture. Of course, it is blurry, but that kiss was too precious to miss.

The other kids got in some good snuggle time too!

The big news around our house is not what has come in, but what has gone out. Our bookcase has a nice empty spot on top of it right now.

This nice little machine used to sit there. This was Kyle's pulse oximeter that we hooked him up to every night to make sure his reflux, of which there was plenty, did not enter his lungs. Or, at least didn't do so enough to impair his oxygen.

When we first brought Kyle home, I relied on this machine to make me feel like I was doing enough to keep my baby safe. I cursed it at times when the alarms would go off because of a bad read. Some nights it felt like I could hardly sleep because of it. I knew that without it, I would also hardly sleep out of worry though. It gave me peace of mind when little else did. As Kyle grew older, his reflux didn't cause his oxygen levels to decrease as much, and, because of the machine, we knew that his oxygen always rebounded as soon as he worked the spit up out. The machine now only beeped at us when it was malfunctioning. Our insurance authorization was about to expire a few weeks back when the probes quit working. It was around midnight, and we didn't have a backup, so we went to sleep without the machine on.  A few days later we called our home health supplier and asked them to pick it up.

It was so nice to be sending medical equipment out the door never to be seen again.

The other item we've removed from our life is this:

Kyle's food no longer has to be fortified to increase the calories. He is on straight mama's milk and doing well. In fact, the little man has tripled his birth weight!

Sunday evening entertainment

Got Milk?

Shortly before Kyle was discharged from the NICU, Jeremy and I went freezer shopping. We had discussed purchasing a freezer to put in our garage for well over two years. We always decided it could wait, but with needing somewhere to store extra breast milk, it tipped a freezer purchase from the "luxury" category to the "necessity" category.

Jeremy immediately started making plans for freezer meals and purchasing a quarter of a cow from a local farm. I told him he needed to slow his roll.

This is what our freezer looks like:

That isn't 100% milk, underneath somewhere is a freezer meal or two. Other than that, it is all milk.

We are storing milk in preparation for when I stop pumping. Because Kyle's surgery is tentatively scheduled for around one year, I am not sure what he will need for nutrition. Will he take to eating relatively easily, or will we have a very long road ahead of us? I do plan on him having his tube for a long time, but the tube stays in for awhile to help with liquids and hydration even after the child can take most of their nutrition orally. I don't see the point of pumping for a year and then having to start formula because he needed a few more months of a liquid diet. So, we have a 14.7 cu.ft freezer almost completely full of breast milk.

Obviously, all this milk won't be good when he'll need it, so I have been rotating the milk out by donating to the Mother's Milk Bank based out of Denver. They take my milk, mix it with other donor milk, pasteurize it, and then mail it out to NICUs to feed the preemie babies whose moms don't have an established supply yet. The screening system to sign up for being a donor is quite thorough. The questionnaire was long and they drew blood to screen for disease. I am happy to donate my milk because I know I appreciated Kyle receiving donor milk the first few days he was in the hospital. And if I am going through all the work of pumping, I want my milk to be useful to someone.

Let's be honest though, the real draw of pumping is the freedom it gives me to eat double burgers from Burgerville and oreos all the time.

Bath time

This video makes me happy. It shows how far we've come since we brought Kyle home from the hospital. The first few baths we gave Kyle were quite complicated. He was relatively fresh from his surgery and hated being naked. Kyle had a longer tube that was permanently attached to his little body. The surgeon told us to always keep it stabilized so the tract into his belly would heal properly. When Kyle was dressed, we had it safety pinned to his diaper, but, when naked, the weight of the port would tug down on his belly. Jeremy would stabilize the tube on a wiggling and screaming Kyle while I tried to hurry and wash his little body. I remember being so proud of myself when I successfully bathed Kyle solo for the first time. Swapping out the long tube for the button made baths much easier. Also, Kyle grew calmer during bath time and now he loves it...until we take his naked body out of the warm water. He squeals until we wrap him up all warm in his towel.

Four months old

Kyle is four months old today. He's growing like a weed. A small weed, but still a weed.

He weighs 10 lbs 10 oz.

His favorite activity is to stare at his hands.

Carolyn likes to squish his chubby little cheeks.

He bats at his toys. After a long day of being held, he gets fussy around 8, and we put him down for some toy time. 

He bats at his aunt's curly hair, and the other day, he touched my face. This was a big deal in our house.

We took him to his feeding clinic appointment last week. Not that he eats. But it's preparation for when we 

do start teaching him to eat. I assume then we will be there quite a bit. 

The developmental pediatrician took a look at Kyle and was very pleased with his neurological development. He is right on track for his age and we aren't adjusting for his due date. I hope he stays on that curve.

 

Smile, Kyle!

The days got away from me this month. I thought that as time went by and Kyle got older, I would be able to be more productive. I still think that's true, but Kyle has to get much older first.

His reflux picked up quite a bit in the early part of the month. After hanging out on such scintillating message boards like infantreflux.org, I decided that Kyle's Zantac was just not cutting it. We switched him over to Prilosec and after a few weeks and upping the dose, I feel like we might have a good handle on it. His crying has decreased substantially, and I don't have to hold him as much. I was holding him almost all day long, with just short breaks for pumping and eating. As soon as I would put him down, he would reflux and he choked on it almost every time.

Jeremy and I have adjusted to the button for Kyle's feedings. Because of his reflux, we have to spread his feedings out over an hour each time. We now hook him up to the pump for each of his feeds and let the machine do the work. Sometimes, exhaustion takes over and Jeremy will take a little snoozer with Kyle as he gets his milk.

The highlight of our month is Kyle's big milestone: smiles! Jeremy has been waiting since the NICU to see this little guy smile. When I am having a rough day getting everything done and feeling overwhelmed, Kyle can give me the biggest grin and make it all melt away. Everything that isn't getting done will still be there tomorrow, so I just try to relax and enjoy the baby grins.

We've had some follow-up appointments over the last few weeks and had some questions answered. Kyle's genetic testing came back normal. His DNA was all in the right order, everything was present with no extra material. We are still supposed to go in for a more thorough follow-up, but this was good news.

Kyle's speech pathologist (because speaking muscles are the same as eating muscles) wanted to perform a swallow study when he would be about 8 months old to see if he could handle thicker foods or solids. Kyle's ENT put the kibosh on that very quickly and said he is to have nothing by mouth until after his cleft repair surgery. He said the size of the cleft is such that Kyle would aspirate any type of food he eats. The ENT also modified his previous diagnosis and said that he doesn't believe Kyle's vocal cords are paralyzed. They might not work properly because of the cleft, but they do move. Kyle does cry and he can be noisy. I've never been so pleased to hear my child cry as when I realized that he was using his voice.

We plan on tube feeding Kyle for at least 18 months more. Once the reconstruction surgery takes place, his body needs to heal. We will then perform a swallow study and start the process of teaching him to eat. My research indicates that this can be a long process. After spending so long on a tube, most kids struggle to coordinate the muscles. We are lucky to have a pediatric feeding clinic close by because Kyle will be in food therapy post-surgery.

Kyle keeps growing. We have weekly weight checks. If I don't already have a doctor's appointment scheduled, we have a nurse that comes to our house to weigh Kyle. I so appreciate that. I did not want to be driving to the pediatrician's office any more than I have to. He has officially doubled his birth weight as of last Friday. He now weighs 9 lbs, 6 oz.

Hoppy Easter!

Blessing day

Kyle wore this snazzy outfit (first one that isn't pajamas) because Jeremy, with some family and friends, gave him his baby blessing. This is usually done at church, but because of Kyle's health problems, we did it at our home this past Sunday.

We've pretty much stayed home with Kyle since he's been born, except for doctor appointments. And I hate those because Kyle has reflux and food comes shooting out whenever he is in his car seat. We don't have people over either. But for his baby blessing, we made exceptions. We had my sister and her husband, my brother and his family, and two families that helped us so much. Also, through Skype and Facetime, we had Grandma Horner, Aunt Melissa, and my parents join us as well.

After the blessing, most people stayed for Jeremy's mom's epic lasagna. It was nice to have people over again, although we are going to wait a few more months before doing it again.

Kyle's portraits

We got pictures taken shortly after Kyle came home from OHSU. As usual, I love them! He's already grown so much, it's crazy!

Storytime

I have to post this sweet picture. It helps me get through days like today where Blake breaks everything in sight and doesn't listen to a thing I say.

Big week for Kyle

We went from this...


to this...

I love having the button instead of the tube. Now we just hook him up when we need to feed him. Otherwise, he is free as a bird and can move without it getting in the way.

I do still have other children...

who don't get as much attention as they once did. They are expected to play more independently and get along better than before. Every once in awhile, it works out the way I hope. After I enjoyed 30 minutes of peace, Carolyn and Blake came to show me their masterpieces.

On a roller coaster

The most common thing I heard while on bed rest was "I don't know how you do it. I would go nuts." I knew exactly how I did it. I was told that if I stayed on bed rest long enough, I would deliver a healthy baby.

To be honest, bed rest wasn't that hard. There were definitely times that were hard, or scary, but I had a goal. I was focused on that goal. I knew that, given my situation, everything was out of my control except managing my bed rest. Jeremy is the one who had the worst of it. He tried to maintain our household and take care of the kids, visit me in the hospital, and work full-time. He had the out of control stress.

Going into labor when I did, 10 days before my scheduled induction, was so frustrating to me. I knew that delivering at 34 weeks would necessitate a stay in the NICU for Kyle. I felt like I was so close to my goal and yet couldn't make it. Although I knew that I had no control over when my body went into labor, I felt like I should've been able to make it to 35.5 weeks.

What a blessing for us that I didn't.

It's very possible that Kyle would've been sent home with us if I had made it to my induction date. Our NICU stay enabled us to get him his diagnosis early without the complications of aspirated food and pneumonia that accompany laryngeal clefts. He is starting this journey healthy, instead of spending months struggling with reflux and choking fits and possibly pneumonia until a doctor figured out his problem. His abnormality is rare and getting a proper diagnosis can take a really long time. It only took 10 days for us. So while this felt like a low on the roller coaster at the time, with the benefit of hindsight, I count this as one of our highs.

Since coming home, I feel like I am on a completely different ride. We've learned how to prepare and administer his feedings, whether manually by syringe or on an electric pump. We've learned how to care for his tube insertion site, and what to do to control leaking. We've learned how to let go of things that might not matter as much. But every time I start to feel like I have it figured out and might not be housebound for months, some new thing pops up.

Like today, he had the worst reflux I've seen him have yet. And honestly, it came about 5 minutes after I thought, "maybe I could leave the house today." After caring for him and fighting back the negative emotions, I realized that this was preventable. He was fed on the pump all weekend long. We forgot to "vent" him, where we put in an empty syringe and open his tube to let any extra air out of his stomach. It was like a roller coaster all wrapped up in 20 minutes of Kyle care.

His health issues make his lows feel lower, but the highs that come feel so much higher. The snuggles he gives me are so sweet, and we cheer every accomplishment for him. Every head lift, every ounce gained, and every time he focuses on my face bring such joy to my heart.

Quack quack

This week we received an adorable quilt from Kyle's great-grandma.

It makes me want to jump back in the swing of sewing things! Not right now, but the time will come when I can. I have ideas swirling in my head.

Kyle had his two-month checkup on Friday. He weighs in at a robust 7 lbs 10 ounces. Adjusted for his due date, Kyle is squarely in the 25% range for his height and weight. I doubt he will jump up too far on the weight chart based on his actual birth date since Carolyn and Blake were only 17 and 19 pounds, respectively, at one year. I hope he does though because the surgeon wants Kyle to be a minimum of 20 pounds before his reconstruction surgery, and I would like it to be sooner rather than later.

What is Kyle looking at today?

...just his first love note.