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.

New Schedule

This cute little guy has turned our world upside down. I know that all new babies cause sleepless nights, but I never expected the sheer amount of time it takes to do all of our daily tasks. Here's a little peek at what we do every day.


6:30 try to sleep a little bit more even though Carolyn and Blake come in every 8 minutes to tattle or ask for my iPod or tell me a story or just to yell really loud and then tell me Kyle is crying

7:30 pump and clean up

8:15 wake up Kyle and get him ready for the day: unhook his machines, clean and dress the site for his tube, give him kisses, get him dressed, prepare his feed

9 tube feed Kyle and then hold upright to combat reflux

10 try to feed myself

10:20 get Carolyn's lunch going so she can get on the bus

10:30 pump

10:53 put Carolyn on bus

11 spend some time with Blake

11:45 prepare Kyle's feed, feed him and hold him upright

1 pump

1:30 turn on TV for Blake, so I can start dinner

2:15 get Carolyn off bus

2:30 work on dinner

3 feed Kyle

4 pump

4:45 finish preparing dinner

5:45 have dinner on table

6 feed Kyle, while Blake cries that he won't eat unless I feed him, Jeremy comes home sometime around here and knocks heads around as needed.

7 pump, tell kids to put on pjs and brush teeth. hope they don't get any cavities due to my negligence.

8 eat oreos. seriously, when did they get so delicious?

Here is when my schedule opens up for the day. Jeremy usually does the 9 pm feed. He also often mixes all the milk for the next day (Kyle gets breastmilk fortified with formula so it has more calories per ounce). I go to Target or Gap or over to a friend's to watch Project Runway All-Stars. Or, if I am feeling really good, then I tidy up the mess from the day

10:30 hook Kyle up to his food pump and his pulse oximeter (the machine that tells if he is getting enough oxygen, essentially to make sure his reflux is not going into his lungs)

10:45 pump

11:15 sleep, hopefully

2:30 get up to change milk bag on his pump

2:45 pump and play boggle on my iPod to stay awake

3:15 sleep, hopefully

Between pumping and feeding Kyle, I spend a lot of time glued to the couch. Thank goodness for Pinterest, where I pin recipes that take way too much time to prepare right now. They sure look yummy though.

We are adjusting to our new normal and everyday feels more routine. I'm learning to lean on the people around me who offer help instead of saying I can do it all. I'm learning what is actually necessary and what is not. I'm learning to see all the tender mercies from my Heavenly Father.

Adjustments

We've been home with Kyle for a little over two weeks now. I feel like we are pretty well in the swing of things and have our routine down pretty well. Of course, Grandma Horner leaves next week and then I will have to adjust for being on my own during the day.

Before leaving OHSU, the doctors suggested we put Kyle on a food pump overnight to cut back on how much time we had to be up with him. I thought this was a brilliant idea. 10:30-7:30? Nine hours of peace? Sign me up.

Then the doctors pointed out that breast milk expires after four hours and we still have to get up twice to rinse the bag and refill it with fresh milk.

Kyle and I had similar feelings on that subject:

It is still much better than feeding him for 30-45 minutes and then holding him upright to combat the reflux twice in the middle of the night.

The big exciting things in my life right now:

1)sleeping four hours in a row

2)cookies. I've eaten packs and packs of oreos since coming home. This includes two Costco-sized boxes. Chances are if you dropped cookies off at my house in the last month, I ate the majority of them.

3)weight checks. This little man weighs 6 pounds 15 ounces now!

my budding feminist

Homecoming

Kyle's story.

Sunday: my mother-in-law flew home from her two weeks of helping me keep my household together. Man, I miss her. She graciously agreed to come back at the end of the month to continue helping with childcare.

Tuesday: Kyle and I packed up all our stuff at St. Vincent's to transfer to OHSU. It was harder than I thought. By this time, I'd spent the last two months at this hospital. I was very familiar with where everything was. I enjoyed the relatively short drive. Kyle had some nurses that really loved him and took good care of him.

I went for my first ambulance ride with Kyle riding in the back. Thankfully, he transferred without a problem, and we tried to settle in to an unfamiliar place. Let me just say that I think all NICUs should have private rooms. I am sure there are real reasons why they don't, but from my very limited, unmedical perspective, I find them to be necessary.

Wednesday: Jeremy and I dropped the kids off for an all-day play date and headed up the hill to send Kyle to surgery. It wasn't too long into the surgery before the ENT came out and said he had an answer for us. Kyle has a laryngeal cleft. This means that when he swallows, even if he gets his food to go down his esophagus, it can enter his trachea and cause him to aspirate. The doctor wants to repair this surgically, but Kyle needs to be between 12-18 months old first.

This surgery is necessary for him, but doesn't fix his vocal cord paralysis. We will still be waiting to see how his cords continue to progess and if he recovers any function.

Jeremy and I felt relief that we had an answer and a plan of action. Of course, the ENTs found other ways his airway formed differently from just about everyone else's airway, and the neonatalogists fixated on the cystic hygroma he had in utero that resolved by 15 weeks. I just realized that we never blogged about that. This pregnancy has been one giant rollercoaster since I found out I was pregnant.

At my 9 week ultrasound, the radiologist recommended we do further testing because of a thickness in Kyle's neck area that can be a marker for Down Syndrome. We went, and my risk for Down Syndrome was increased, but we were sent to a geneticist because Kyle had something more complicated than just fluid in the back of his neck. He had a cystic hygroma, which is a blockage in the lymphatic system. These are most commonly associated with chromosomal abnormalities and congenital heart defects. Jeremy and I wanted to have the most information possible so we knew what to expect upon birth and went forward with all the testing. Every test came back clean and by 26 weeks we figured the stress of my preganancy was over. Then two weeks later, my water broke and it feels like the stress hasn't let up since.

So, because of these other abnormalities and his previous problems in utero, we were looking at another brain MRI (he already had one while at St. Vincent's), a chest MRI, and a blood test for genetics to look for more problems. Or, as the doctors say, to rule out possibilities. It was tough because we thought we had been given an answer for his vocal cord paralysis. Instead. we were given this long list of other complications.

We left the hospital after a long day to retrieve our children from a friend's house. We arrived after bed time, and I really hoped Blake wouldn't be in meltdown mode. He wasn't. He has found a new best friend. He's asked me at least ten times since coming home if we can have this girl come to our house babysit him. He tells me he loves her "this much" as he stretches his arms as far apart as they can go. It was really nice after such a roller coaster day to find Carolyn and Blake happy.

Thursday: I walk into the NICU, stressed, and hope Kyle does well off the ventilator post-surgery so we can run the other tests the doctors ordered the night before. Immediately after arrival, Kyle's doctor finds me and tells me the cardiologist and neurologist reviewed his earlier scans and declared further testing unnecessary. This was such a relief. His other abnormalities are really just differences and shouldn't cause problems. They are still running his genetics test for fun. The doctors say it is for academic research. Honestly? I am not worried about it. If they find something, they find something. His body has been thoroughly examined, every inch I feel like. Besides his vocal box area, all his parts work fine. He's just my sweet little Kyle and knowing that one particular section of his DNA did something funky to cause this isn't going to change a thing for me. I love him to pieces and just want him home.

Speaking of home, we are tentatively scheduled to bring him home on Monday. His surgery to place his feeding tube went really well. He is eating all his food through it. He is staying to make sure his reflux is fine and to monitor how he does on a food pump for overnight. I am counting down the hours.

Thank you for all the prayers, dinners, babysitters, cookies, and kind words as we have worked through all of this the last two months.