Palate surgery hospital stay

(click link above to read Doernboecher's page on cleft lip and palate. Scroll down to read just about cleft palate surgery)

We just got back to Matt's dad's house from the hospital and are doing quite well. Unfortunately I don't have digital photos to share, but I'll put some up when I get them developed and a disc made.  Right now is one of only a couple of times since Monday Sean has slept lying down on a bed, so I'm taking advantage of it to update everyone with at least the story since surgery Monday morning.

Sean's surgery was about four hours long. When they called us back to see him he was asleep in the hospital crib and very swollen. I started to cry (knowing he couldn't see me) as the intensity of what he'd been through suddenly hit me. Beeping machines and concern for what was going on there in recovery soon distracted me from that, though, and we started asking questions like "Can we elevate the head of his bed?" and "What is that on his cheek?" Then he started to cry and try to get up, so I picked him up, but he wanted daddy. I am the bottle nurse. Daddy has the comfy chest to lay his head on when he doesn't feel good. This is a common routine at home. The OR nurse was patient and kind as she slowly wheeled the crib up to his room with Matt carrying our baby close beside IV tube and blood oxygen monitor dangling between them.

Just as the nurses had warned us, Sean could only sleep in the hospital while we held him or the one time they gave him a dose of morphine.  If we held him, though, and he had his Tylenol w/ codeine, sleeping is pretty much all he has been doing. He sort of writhes and fusses about 20 minutes before he is due for his next dose and until it kicks in, then he has a few minutes of doped up alert time before falling asleep again. It is tough for him not just because of the pain, but also because he is pretty much cut off from all his usual comforting self-soothing habits. Besides the IV and blood oxygen monitor he had on in the hospital, the arm restraints (nicknamed "no-no's" by the medical world) made it impossible to do his little hair twirling habit (his or mine). Thankfully he is off the machines. Just three more weeks with the no-no's.

We ended up staying two nights because we just could not get Sean to drink anything yesterday although we tried all day long. They put him back on the IV at 6:30 pm and within the hour he was drinking (from his Haberman bottle) like a champ. I guess he needed that IV to perk up enough to want the bottle. He can begin blended solid foods today so we gave him a bit of blended watermelon when we got here, but before the surgery he had been eating all kinds of big people food, so you can tell he really would like the banana bread Grammy brought. Poor baby. He'll be on this blended diet for four weeks.
A couple of times Sean has been awake enough to look around and observe his surroundings. The teddy bear and mylar balloon bouquet Matt's office sent were perfect entertainment sitting at the foot of his hospital crib. Thanks KPFF!! He has made his signature panting noise (for dog) and talked and cooed with us some. Enough or us to feel encouraged he is infact getting better. No fever or bleeding and the team of surgeons that came to check on him said his mouth looked great. I personally am planning to follow another parent's advice and am refraining from examining his surgical site with my untrained eyes until the post-op visits in two weeks.

Yesterday Mary and Tom (Nana and Grandpa)  rode the tram up with Rohan and Pearl to visit. The kids were very excited to see Sean's balloons and try out all the hospital room gadgets. They will stay one more night with grandparents before we have all the kids ourselves again.

Matt and I are doing fine. A little sore from holding 21 pounds all the time, but happy he is out of the hospital and on his way to recovery. The nurses were amazing!  We were so fortunate to get three intelligent, reliable and totally human beings during our stay at Dornboecher. Apparently they had recently separated the surgical patients from the medical patients and that made things a lot more manageable. They were on the ball and very knowledgeable. Sometimes it has felt like a lot of work to advocate for Sean in the hospital. You know, making sure he was getting the right amount of meds and on time or having to educate the nurses on some aspect of his post-op care, but this time they knew exactly what to do and helped us relax and just focus on soothing Sean. For this we are extremely grateful!! For me, this whole thing has been much easier than the lip repair surgery. They assure me, however, that it is harder for Sean. I am just so glad I feel like I'm in a positive space to best comfort and support my brave baby boy.

While at Doernboecher we couldn't help but notice, however, that there are little ones there recovering from surgery that do not have parents with them. Our nurse explained that in some cases kids have been separated from their parents by the state or sometimes the parents are very young and feel too overwhelmed to stay all the time.  I can't imagine how awful it would be to recover from something like this alone. They would love volunteers to help in these situations, but people rarely give their time at night. I wish I could go and hold all those babies myself!!! If you have the time, please consider volunteering to hold a baby in your children's hospital.

Thank you all for your prayers, love, positive thoughts, burning candles, visualization and supportive e-mails. We are extraordinarily grateful to have such a loving community of family and friends in which to raise our children. We love you back!!

Megan, Matt, Rohan, Pearl and Sean

Surgery day

We are sitting in the surgery waiting room here at Doernboecher. Sean went in to surgery about 8:45. The ENT placed tubes in his ears and then Dr. Kuang started the palate repair around 9:15. He should be done between 12:45 and 1:30.  he has a great anesthesiologist named Andre who befriended Sean making it possible to avoid more drugs and the pre-op sedative. Yay Andre!

I just read my e-mail and was moved by the number of you who wrote to say you are praying or sending love and blessings our way today. Thank you and love right back at ya!!

More later.....

Megan and Matt

Dr. Kuang just came out and said he is out of surgery and that it was a lot of work, but she was able to close his 12 mm wide palatal cleft. yay! She said he has a tongue stitch until tomorrow that looks medieval and is awake but not crying right now. We are waiting for a nurse to tell us we can go back.