Quick recap/update age 2 and 1/2

Sean is adorable, amazing and full of personality. He is more potty curious than potty trained, but that is much better than refusing to use the toilet at all, right?
So far Sean has only had the lip/nose repair (7 mos) and palate repair (12 mos) surgeries, so he doesn't remember anything and is feeling good. :) He is amazing with doctors and is the only two year old most have seen that will sit completely calm and still to have his ears, eyes, nose and throat examined. He seems to feel at home at the Dr. office. Next he will need some cosmetic surgery for his upper lip (the underside didn't stay tacked up when they did the lip repair) and maybe some rhinoplasty for the asymmetry of his nostrils (one is much bigger than the other). You can't see it very well in photos. His speech is good, but he definitely has air (yogurt, banana, avocado) leakage. We are insort of a wait and see mode about more palate work and working hard on his "t, f, d, s and p" sounds ourselves. The speech pathologist at Doernboecher doesn't yet think we need weekly speech therapy, but we do need to encourage him to make the sounds that don't come naturally. We go back to Doernboecher in July to see the surgeon, ENT, speech pathologist and orthodontist and we'll find out more then about what and when to expect the next procedure. They don't seem to be in a rush to do more surgery on him right now which has been nice.

Here are some photos from the past 6 mos or so.

Catching up after almost a year away!

Well, if you follow this blog have probably noticed that it has been quite a while since there have been any posts. I guess after Sean's palate repair I was in need of a break from focusing on the whole thing and was finally able to get one. So, I'm here to give you an update on the last year in photos. I'll add more news and info as soon as I can get back to it. The link above is to the latest in research on the genetic causes of cleft lip and palate.

dance party

A snapshot of many of our winter days

Christmas day (16 mos)

raaarr! I'm a tiger! (18 mos)

I caught Sean like this on the counter in the Kitchen (21 mos) 

Sean Michael 22 mos.

Two down ? to go

Two surgeries down. Sean was in a lot of pain for a couple weeks. The palate repair did not do all we'd hoped. About three weeks post op his palate repair opened up toward the front of his mouth and food started coming out his nose again. Because of this he wore the no-no's a week longer and we kept him on a blended/soft food diet almost two weeks longer than originally planned. 

Sean is a fun and happy 15 mo old. He is walking and climbing and trying to keep up with his big brother and sister. He and Rohan have the sweetest relationship. Of course Sean thinks Rohan is the best thing in the world and Rohan loves Sean to death, so they are so fun to be with. Poor little miss Pearl is in the middle ad with her feisty disposition, there is a lot of sibling rivalry with both her older and younger sibling. On the one hand we are the normal busy parents of three adorable little kids. On the other, we are the worried and sometimes emotional parents of a baby born with a severe cleft lip and palate. What that is like is sort of like being told something really bad is going to happen, but then experiencing it in fragments spread out over many many months and years. We can't tell if we've been through the hardest part or if it is yet to come. We won't know until Sean's January visits if they will be doing another palate repair AND another lip repair surgery when he is two or if those will be just one surgery. We won't know until after that if he'll need a surgery at age three or four. We don't know what comes next or how many extra surgeries he'll need beyond the predictable five they told us about when he was new.  Even then, they don't know he does or doesn't make certain sounds, until his teeth come in this way or that, until his ear tubes fall out, until the first orthodontic work is done, until the palate expander has done some work, .until....until....until...... In short, we won't know what we've gotten ourselves into, really, until he is a teenager and we've already gone through at least half of what they will ultimately do to try and repair what people think to be a simple facial deformity.

But, it cannot be denied, he is cute as a button, super fun and adventurous and a little precocious. We love our Sean Michael no doubt!!

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.

Sean Michael's first birthday

It is hard to believe an entire year has passed since the day we welcomed Sean Michael into our family. I have so many thoughts and feelings about it I hardly know where to begin. One thing is for sure, this is a year I will never forget. Grammy and Auntie Diane came were visiting to celebrate with us. I guess we shot video of the birthday dinner and cake, but here are photos of Sean's birthday morning.

Birthday pancake

Learning to open presents

New water table. The best present for a third baby is the one all three kids like:) Great job Auntie Melissa, Grammy & Charlie!

Sean's birthday was on a Thursday. I got my hair cut that day for the first time in over a year! It was long enough to donate to Locks of Love, an organization that provides real hair wigs to children in cancer treatment. It feels great to have all that heavy hair off my head and not being pulled on all the time. I love that I was able to make my not getting a hair cut because I had too many other more importnat things to do count for something.

We left the next day for a camping trip out the McKenzie River at Paradise Campground with a bunch of friends. It was a perfect place to camp with kids. We shared cake and ice cream in Sean's honor there as well. We'll celebrate in Portland with all the family at the end of the month just before his palate repair surgery. Here are some camping photos:

Sean and Pearl by the fire

Rohan on the trail to Blue Pool

Homebirth of a cleft affected baby

Great!

http://www.youtube.com/watch?v=-YQIcx7tJI4&feature=rec-HM-r2