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.
Monday, June 4, 2012
Monday, May 21, 2012
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 aunt's curly hair, and the other day, he touched my face. This was a big deal in our house.
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.
Monday, April 30, 2012
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.
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.
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.
Sunday, April 8, 2012
Saturday, April 7, 2012
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.
Friday, April 6, 2012
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!
Wednesday, April 4, 2012
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.
Sunday, April 1, 2012
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.
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.
Monday, March 26, 2012
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.
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.
Sunday, March 25, 2012
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.
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.
Saturday, March 17, 2012
Friday, March 16, 2012
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.
Sunday, March 11, 2012
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!
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!
Tuesday, March 6, 2012
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