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
Friday, February 24, 2012
Thursday, February 16, 2012
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.
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.
Monday, February 13, 2012
Another picture of Kyle.
Kyle pulled out his feeding tube from his nose the other day. He looked so handsome, I had to take my iPod out and take some pictures before his nurse put it back in. I can't wait until we get to take him home and his cute little face doesn't have the nasal tube in anymore.
Saturday, February 11, 2012
Not quite what I had in mind...
I cleaned out the notepad on my iPod today. I found old dinner menus, quotes I liked, and a Christmas wish list. I emailed it to Jeremy on December 7. It included such necessities like a metal ladle, larger memory card, and, at the bottom, a request for time away from the children.
Let's agree that I got more time away from my children these past eight weeks than I ever could have imagined.
Let's agree that I got more time away from my children these past eight weeks than I ever could have imagined.
Thursday, February 9, 2012
Grandma meets Kyle
Don't they both just look so content?Grandma is going home soon and needed to have a chance to snuggle her newest grandson.
Kyle's surgeries are scheduled for next Wednesday. He will have his exploratory bronchoscopy, stomach tube insertion, and circumcision all done in one operating room. Poor little guy. Our big goal is to bring him home next weekend.
Friday, February 3, 2012
Two Weeks
Kyle is two weeks tomorrow. This is the time frame where we hoped to bring him home with us.Kyle struggled with getting his food down. He didn't seem to like the bottle, and when he nursed, he didn't get much volume. He also has the world's tiniest cry.
After 10 days of waiting for Kyle to figure it out, the doctors recommended a consult with an ENT to see if there were any abnormalities in his airway. We thought that maybe he had some extra folds that he would need to grow into, or something along those lines.
The ENT instead diagnosed Kyle with paralyzed vocal cords. This means that Kyle can't close off his airway when he tries to eat, which causes him distress. The good news is that it doesn't affect his breathing. The not so great news is there isn't a whole lot out there to try to fix it. Kyle had an MRI on Wednesday to rule out a brian abnormality. Those results were clear. Next week he will undergo a procedure to see if he has a tear or hole in his laryngeal flap. That could possibly be repaired through surgery and get things working again. After that, we wait and see if it spontaneously resolves on its own. Apparently, that type of thing happens, but there is no way of knowing until it does if it will or not.
Kyle will be transferred to OHSU for the ENT to look at his airway. At the same time, another doctor will insert a feeding tube into Kyle's stomach for us to get him the nourishment he needs. We now hope to have him home with us at the end of next week, but we haven't been able to get his surgery coordinated between the two doctors yet. His discharge date could be later if we have to wait a bit before he gets to go to OHSU.
Aside from this complication, Kyle is doing very well. He is medically stable and the sweetest little boy. If I didn't have other children at home, I could just snuggle him all day in the NICU.
Wednesday, February 1, 2012
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