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

Cleft awareness

July is Cleft/Craniofacial Awareness and Prevention Month!

http://gov.nv.gov/PROCs/2009/2009-07-00_CleftCraniofacialAwarenessMonth.htm

Celebrating; hearing, breast milk and the next surgery date!

Monday we had an appt with the ENT with the craniofacial clinic at Doernboecher. Our first appt since Sean Michael's lip repair and post-op appt. His name is Dr. Milczuk and he is the Dr. that puts the ear tubes in during the palate repair surgery (the next surgery Sean Michael will have). The first thing they did was weigh him......

He weighs 21 pounds!!!

I'd like to pause here and celebrate the wonders of breast milk and the accomplishment of exclusively pumping. Now, context is everything, so allow me to paint a picture:

• He was born with a complete bilateral cleft lip and palate







• He cannot suck, hence he cannot nurse.







• He eats from a Haberman feeder which requires him to allow us to squeeze the bottle nipple and receive the milk and/or bite down on the nipple to make it flow out.







• He had the NAM for 6+ mos and then suddenly did not have it following the lip repair surgery







• He had a major surgery 2 mos ago







• He still has a cleft palate all the way from the front to the back







• He didn't eat more than an oz at a time (that I force fed him) for several days after lip repair surgery







• He had two nasty viruses and an ear infection a few weeks after the surgery







• He seemed hungry from 6-8.5 mos, but couldn't stand the feeling of solid food in his mouth.







• He's been eating solids for about a month, but every feeding ends in sneezing and crying after 4 - 6 bites.







• He has pretty much grown to 21 lbs on breast milk alone.







• I am pumping that milk and, by some miracle, still have enough for him.







• My first two kids weighed about 18.5 lbs at one year.

I'm feeling pretty good. Here is 2 and 1/2 yr old Pearl trying to feed her tiny baby brother. She weighs 26 lbs.

While we were waiting to see Dr. Milczuk, we were taken to Audiology for a hearing test. This wasn't scheduled in advance, but was something I had been wondering about and hadn't gotten around to asking. I had a feeling Sean Michael's hearing was not 100%, but I didn't know for sure. He doesn't ever startle with loud sounds and since he's had several ear infections and always has some fluid when we go to the Dr., I figured he was sort of hearing through water. The test was easy and fun. He sat on my lap in a sound proof booth with two big speakers in the corners in front of us. Noises would come out of the speakers and he'd turn his head to find whatever he heard. There was also some kind of automatic toy that would go off in between testing on each side. It sort of reminded me of Pizza and Pipes, a place we used to go for birthday parties as kids.

Anyway, Sean Michael has a mild to moderate hearing loss. When we saw Dr. Milczuk he confirmed that he recommends doing the tubes during palate repair. I asked him what percentage of kids with cleft palate have their hearing loss resolve after tubes and he said 99%. Phew!! Now I'm sort of looking forward to the tubes. A fellow mom whose baby just got his tubes during lip repair warns me, however, that it is very intense for them to all of a sudden be able to hear everything. She said he'll be dealing with that while recovering from the palate surgery. Poor guy. Definitely better to get both done at once, however, since they have to be put under for tubes.

Palate repair surgery

On the way home from Portland we called scheduling for Dr. Kuang (our surgeon) and were able to get a date for the palate repair. Phew again!! Monday August 31. The scheduler thinks he'll be first that day. Phew again! That was another of my concerns. Dr. Kuang was so exhausted after his lip repair. It would have been nice to be first that day.

So, now we can make plans and schedule lots of fun for summer before we have to hunker down again and nurse a hurting baby again. We plan to make the most of it. Our summer is planned out almost to the hour already. We can't wait to experience music with Sean Michael and lots of outdoor summer fun!!

Did I mention that Sean Michael is pulling himself up to standing? So fun!

Finally enjoying life!

The reason I was so brief in my posts for so long after the surgery is that it took like 4 weeks for Sean Michael to recover from the surgery (I mean, he still had some stitches in at 4 weeks and we ended up having to do that awful cleaning up until then.) Then, we all got struck with two different viruses which took several weeks to run their course through the family. So......here we are just over two months out and life is feeling busy but normal. Yay!! Here are some photos from fairly normal life with Sean Michael.

9 months old!

Getting over a nasty virus, but so gorgeous anyway!

Daddy is a big source of comfort when I'm not feeling good.

Bathtime with big sister

Commando crawling!

I'm gonna get that camera!

Falling in love with a new face

Dr. Kuang, the surgeon, Dr Shazad, surgical resident, & Dr. Garfinkle. Amazing team who gave mt baby a face anyone could love.

I've sort of been avoiding writing because I'm feeling very disorganized and jumpy in my thinking and hate to subject any readers to that experience, but I also want there to be some documentation of this time. So I'm writing anyway. I can trust you to read what you want to, right?

I just came across a letter on the "wide smiles" website that describes beautifully my experience of and reaction to Sean Michael's new face. http://www.widesmiles.org/cleftlinks/WS-462.html I'm sure my mom and Matt would feel the same. I'd say we each went through a grieving and it seemed to hit hardest a few days after surgery. After the initial fear of caring for a baby in pain and with such a fresh wound and after getting in the swing with the intense post-op schedule. Oh. the schedule! Matt got on the computer our first night out of the hospital and made us an excell spreadsheet to help us keep track. Here is a list of what we were tracking:

• Pain medication (Tylenol w/ codeine, or just Tylenol because Ibuprofen causes bleeding) every 4 hours

• A laxative twice a day while he was on the codeine.

• Oral antibiotics every 6 hours

• pumping breastmilk every 5 hours

• Cleaning scabs and applying ointment 3 times/day

Dr. Kuang wanted us to do the cleaning 5 times a day, but we quickly realized we just couldn't do it. I mean, Sean Michael screamed every time we came at him with any medicine syringe, Q-tip or even the bottle those first days. We couldn't bear actually inflicting pain on him. My mom, Grammy, was great. She helped us keep track of that schedule and take care of Pearl. Rohan stayed in Portland a few days with Grandma and Papa. That was a big help too. Matt took that whole week off of work.

Things got easier and easier as each medication ended and his incisions began to heal. He did very well with those arm restraints considering he was almost crawling and putting EVERYTHING in his mouth before the surgery. It was just really cumbersome to take care of him. On the bright side he could play with ANYTHING because he couldn't reach his mouth. We took full advantage and allowed him to feel all kinds of usually forbidden toys like Rohan's legos or tin foil. :)

Nasal stents and arm restraints were removed 3 weeks post op. Above photo was taken then.

More later....

Recovery

I don't have much time to write, so let me just say two things.

One, this has been the most intense 4 days of this whole journey. Seeing my child in pain and getting no sleep is one thing, but having to clean the incision site and remove all the scabs is the most difficult thing I have ever done in my life. Did I mention I've had natural childbirth three times??

Secondly, it is shocking how much I miss that big goofy grin. I never expected his face to change so much. I expected him to have an in tact lip and I felt pretty uncertain about what it would look like. I did not expect perfection, but I am shocked how much the surgery changed his face. Matt and my mom feel the same way. We are actually grieving the loss of that face we came to love. Here are some photos from the past few days.

Scenes from the walk from recovery to our room. This is my sister Brianna who is finishing nursing school in June!

At this point he couldn't sleep so they gave him another dose of morphine. He ended up needing it through that first night, but was off it when they removed the IV the next day.

Surgery is over

Dr. Kuang just came out and said everything went well. She showed us a picture in her camera. He is still out. It looks really different. His whole face is puffy, which a friend had warned me of. His mouth looks like a little pucker instead of that big wide mouth we are used to. He has nasal stents in his nostrils. We will get to see him in person as soon as he wakes up. Soon, i hope.

Surgery Day

We came up to Portland yesterday and stayed the night at Matt's dad's house (Grandma & Papa's). They have the kids today. Our check in time was 10 am with a scheduled surgery time of 11:50. His last feeding was at 6am. I had been so nervous about the long wait from then until noon. At 7.5 mos he's ready for solids, but not eating what I offer, so he'd been waking up every 2.5 hours lately just STARVING. I imagined this being a very hard morning. Last night, in an attempt to ease this situation, I decided to put cereal in his bottle and I think that helped. He slept a 5 hr stretch and still wasn't very hungry at 6 am. He missed his morning nap with all the excitement and was fussy and tired, but not screaming at all while we waited in the pre-op room.

Brianna, my sister, and my mom (Grammy) took turns holding Sean while the various nurses, anesthesiologists, our surgeon and her resident looked at Sean and asked us questions. They were all really great and playful. He weighs 18 lbs 7 oz today. I changed him into a tiny hospital gown with pink elephants.

We handed him to the anesthesiologist at "the kissing corner" at 12:10 p.m. I had imagined this moment so many times and felt the emotion well up. But when it came time, I suddenly remembered my promise to Sean Michael to be present with him and that he could count on me. At the las minute it occurred to me that it would be better for him to see my smiling face than a worried or sad face as he was handed to virtual strangers. I told him the anesthesiologist's name and said "Ready?" then, with a swinging motion, "one...two....threeee!" and he landed in her arms with a giggle. He was smiling excitedly at me over her shoulder as she carried my precious baby down the hall to operating room #3. Phew!

Later we received a ph call letting us know the surgery began at 1pm.

The four of us waited in the lobby at Doernbecher for Jessica. I met jess through a mutual friend. She is a mom of three and lives in the Porltand area. Her baby, Liam, was born in January at home and "surprise" he has a unilateral cleft lip and palate. It turns out Jessica and I have so much in common and lots to talk about. She has totally inspired me. she arrived wearing a buton that said, "Team Liam". Check this out http://www.onetruemedia.com/otm_site/view_shared?p=850254656d293fa610beec&skin_id=1603&utm_source=otm&utm_medium=text_url


At 4pm the nurse called to say they are wrapping up and that we could expect to talk with Dr. kuang within an hour and a half or so.

Anticipating first surgery

Well, Sean Michael's lip repair is still set for March 24. Here are some updates. Notice today sarcasm seems to be my coping mechanism of choice.

We had pre-op visits with the surgeon and anesthesiologist on March 2nd and got more info about the whole deal. Here are some things to look forward to:

• He can have breastmilk until up to 4 hours before our scheduled surgery time. Unfortunately, he eats every 2.5 hours and our scheduled time is the time we arrive at the hospital and then who knows how long we'll have to wait before they are ready to put him under. We are not looking forward to that part.



• They'll give him a sedative and said it will be the first time we'll see our baby drunk. hmmm...



• We get to hold him and walk all the way to the operating room doors before handing him over to the doctors.



• They'll remove his NAM and keep it as part of his medical record. We do not get to keep the NAM. I better take pictures!


• The surgery will take around 6 hours. Dr. Kuang said not to be worried if it went longer. It would just mean they are taking their time. Attn Portland people. This would be a good day to come and visit / distract us at the hospital if you are free. :)


• He'll stay one night in the hospital during which time he'll be on pain meds.



• He'll wear arm restraints called "no-no's" for 3 weeks so that he can't bend his arms and get at his surgery site.



• In the hospital, a nurse will come ever few hours and wash his incision sites and then clean off any scabs that have begun to form. did I say every few hours? It may be as often as every 2 hours. Turns out, my sister Brianna, who is in nursing school, performed this task during a clinical rotation at Shriner's hospital in Portland. She said the baby screams through it. Yeah.


• Even better news! We get to continue performing this glorious task over the following two weeks. The self absorbing stitches will fall out while we are cleaning the scabs between 5 and seven days post op. Good thing we hear good things about this surgeon.


• After two weeks we switch from scab removal to massage. I'm not sure what we'll use to massage the scar. I have some research to do. I heard vitamin E can be irritating to some babies. I welcome any ideas. You can post a comment or e-mail me.
  
  More later!

Sean Michael at 6 mos

Here are recent images. I'm hoping some others with bilateral cleft affected kids who've been through the NAM process will take a look and tell me what you think. Lip repair surgery date is March 24th.