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.