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.

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.

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.

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.

Guess who weighs 5 1/2 pounds?!

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.

Our little glow worm

Kyle Henry

Kyle Henry Horner
4lb 11 ounces, 16 in. long
21 January 2012, 5:43 am

After hours of laboring by myself through the night because the doctors didn't think I was in active labor, I decided to call Jeremy and tell him to come to the hospital. I was done doing it by myself. Even if the doctors thought my contractions could stop, I didn't care who I inconvenienced (meaning my sister, who went to stay with the kids). I wanted Jeremy to come. I never actually got the chance to make that phone call. Things changed very quickly, and I delivered the baby in my room, not the OR as planned, with a team of frantic nurses trying to get a warmer and all the NICU stuff in my room for Kyle. About a minute before I delivered, I had a nurse call Jeremy to tell him to come. I couldn't make the call at that point.

This was my best view of the baby before they whisked him away to the NICU. He looks like he is really squawling, but he has the tiniest little cry.


Jeremy got to the hospital as fast as he could, but Kyle was already in the NICU. He waited with me while the medical team got me ready to relocate out of my room. Well, Jeremy didn't actually wait. He packed up 5 weeks of books and movies and kid drawings to put in the car. I was sad to leave my spacious room with closets. After we got settled, the nurses told us we could go to the NICU for a visit. I told Jeremy he could go. I was so exhausted. I'd been up over 24 hours without any sleep and delivered without an epidural...not my plan. I slept while Jeremy went to spend some quality time with Kyle.


After my nap, Jeremy wheeled me to the NICU where I got to hold Kyle for the first time. He is doing really well. They took out his feeding tube and he doesn't need oxygen. We hope he continues to grow and progress so we may take him home soon. Right now, the nurses think he will need about two weeks here.

Kyle even puckered up for a kiss.

Here he is in his little warmer, with his eyes open. He's very sleepy, but that was too be expected. They pushed some fentanyl in my IV and gave me a shot of phenergan to try and take the edge off my contractions about 10 minutes before he was born.
Jeremy and I are so grateful Kyle is here and arrived safely. We've worried throughout this whole pregnancy and are so happy to finally have him in our arms.

"Winter"

When it snows, people make snowmen...


When it snows in Portland, you scrape the whole driveway and still only get snowmen about 8 inches tall.

Just another day with Grandma

What's better than visiting Mom at the hosptial?

Riding on the train you built there.

Gratitude

This is my 26th day in the hospital. If all goes well, I have about 24 more days to go. That is one long hospital stay. My biggest concern in this whole matter has been my children. All three of them. Of course, the health and safety of the baby is primary, which is why I stay here when everything looks good. Because we know from experience that things can turn quickly and I need to have nurses and doctors standing by. But my other two children...I feel pretty helpless there. Jeremy works for wonderful people who have been very accommodating to our family's needs, but, obviously, he can't take 7 weeks off work. So, what becomes of my children who need childcare 12-13 hours a day for about a month?

That's where Grandma and Grandpa come in. Closer to the birth, Grandma Horner is joining us for a few weeks. And before them, my sisters and brother in the area helped. And the gaps that my family can't fill? Those gaps are plugged by wonderful friends. To me, it's something akin to a miracle. I know what it means to take extra children for a whole day. Or in my brother's case, many days and nights. I know it means extra planning and arranging to get Carolyn to school, or Blake to actually eat.

My children are cared for by people who love them. Blake especially needs to know that because he is struggling with our situation the most. He knows every home he is going to, and I know that if he struggles, he will find comfort from the people taking care of him.

Everyone who is helping is doing something that I cannot do for my own family right now. And I appreciate it more than words can express.

Happy new year from our family to yours!

This is our letter we had started before I landed myself in the hospital. Most of it is still good information:

Carolyn started kindergarten this year. She thinks it's the best thing ever and always comes home ready to do her homework immediately. Carolyn is also our big helper. She makes her bed, Blake's bed, and sometimes our bed every day. If she disappears at a friend's house, we will often find her cleaning up the bedrooms.

Blake turned three this month. He's recently taken a liking to coloring. We welcome this quiet activity. Most often he is jumping on the couch, or singing and dancing. He is counting down until his swim lessons and preschool start next year.

They both eagerly await the arrival of their little brother, due in March 2012. We haven't named him yet, but Blake is pushing for Paprika.

We cancelled any big trips due to Keren's pregnancy, but we enjoyed going out to the Oregon coast multiple times this year. Also, this meant Jeremy's vacation time was at home, and we were much more productive that way.

Jeremy changed jobs within his company, and this change allows him to be at home more. Next step, moving closer to Portland to cut the commute time. This next step will be years out, but Keren is looking forward to it.

We wish you all the best this holiday season.

Obviously there are a few changes. We are expecting this little boy in January, or early February if we get really lucky. Most days, my hospital bed rest isn't the worst thing in the world. Once they established I wasn't going into immediate labor, the doctors lifted most of my restrictions. But we've had a scare where they thought they would have to do an emergency c-section, and while those times were more stressful, I have never been so grateful for being in the hospital under constant supervision. We are back to hoping delivery is weeks away instead of hours, but we know that could change at any time. Jeremy and I are also aware that we are being cared for by family, friends, and Heavenly Father. We are grateful for all of the help we've received. It has made these last few weeks a lot easier to handle.