Sean's Smile

Quick recap/update age 2 and 1/2

2011-04-26T14:24:00.000-07:00

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!

2010-08-05T11:02:00.000-07:00

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

2009-11-20T13:35:00.000-08:00

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

2009-09-02T15:55:00.000-07:00

(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

2009-09-02T14:14:00.000-07:00

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

2009-08-22T10:08:00.000-07:00

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

2009-07-20T18:23:00.000-07:00

Great!

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

Cleft awareness

2009-07-15T15:22:00.000-07:00

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!

2009-06-06T13:09:00.000-07:00

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!

2009-06-03T09:12:00.000-07:00

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!

2009-05-13T09:50:00.000-07:00

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

2009-04-17T22:36:00.000-07:00

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

2009-03-28T23:22:00.000-07:00

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

2009-03-24T18:18:00.000-07:00

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

2009-03-24T13:54:00.000-07:00

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

2009-03-07T11:26:00.000-08:00

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

2009-02-18T14:47:00.001-08:00

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.

2008-11-13T09:11:00.000-08:00

About 2 weeks old with lip taping. This taping is meant to bring in the prolabium which is his little lip piece in the middle and premaxilla which is the little chunk of gums just under his prolabium. We did this taping until he got the NAM at about 5 weeks.

I wore him in my wrap (Ellaroo for the curious) while I fed him to give him that skin to skin contact my breastfed babies got and soothe a very fussy little guy.

Matt holds an unhappy Sean Michael. About 4 weeks.

Here is Dr. Garfinkle, the dentist/orthodontist who does the NAM (nasoalveolar molding) procedure at Doernbecher. This is the appt where the NAM was fitted for the first time since the mold wast taken. Sean Michael is about 5 weeks old here. He is not happy with being messed with, but nothing is hurting him at this time.

These photos give a really good view of Sean Michael's lip, nose and palate before the NAM.

Here he is with the NAM and his brother and sister at about 8 weeks

Our first trip to Doernbecher Children's hospital

2008-09-11T14:34:00.000-07:00

Sean Michael was born on a Wednesday and we made our first trip to Doernbecher's craniofacial clinic the following Monday. It was August 18th. We had three plus hours of meetings with: the Nurse Practitioner who coordinates the team approach , our plastic surgeon Dr. Kuang and Dr. Garfinkle the orthodontist who does the NAM. My milk had just come in a couple days before and I felt like crying about everything. Sean Michael was hungry about the same time they called us in for weighing and measuring. He started to cry. You know that kind of crying that is somehow linked up to your nervous system as a parent. I was sweating and near tears myself as I undressed him and placed him on the scale. His cord stump fell off when I removed his diaper and I said, "it is a good thing this is not my first baby or I'd really be upset." They gave me a baggie and I tucked it into the diaper bag.

Feeding Sean Michael:

We had been feeding Sean Micheal with a tube and syringe since he was born. They had shown us how to use the Haberman Feeder before and after he was born, but he had a bit of a tough time with it at home. It just seemed like eating should be enjoyable, not stressful, so we were still using the syringe and tube when we visited Doernbecher for the first time the following Monday. Concerned about making sure he gains enough weight, they urged us to officially make the switch to the Haberman. Maureen, our Nurse Practitioner, was very understanding and patient as we tried the Haberman again in her office.

Sean Michael's first tooth!

We found out that Sean Michael's little protruding premaxilla had a little nub on the end that was actually a tooth bud. Since it was not connected to his gums on top, it needed to be removed. I knew it was minor in comparison to everything that lies ahead so I figured it would be good practice. So, I whispered in his ear that I knew he could do it and that I'd be there for him when it was all done and fighting back tears, I handed my five day old baby over to two near strangers to do a medical procedure I hardly understood. You know, I've never been one to "fight back" tears.

They said it'd be 7-10 minutes, but at 16 minutes I did start to worry a little. Matt and I waited anxiously at the end of the hall and finally the surgeon emerged with Sean Michael all swaddled up in the gauzy summer blanket we'd brought. He gave me a quick teary glance as I cradled him before falling into an exhausted sleep. He had a few little dissolvable stitches on the end of his gums and his sleep was filled with a lot of deep sighs. Matt and I decided that probably so much of newborn life is uncomfortable and that likely he wouldn't notice the diffence between a sore feeling in his mouth and so many other intense sensations like sunlight and cold air. We felt like celebrating on the way home to Eugene. Like having made it through this first trip was a victory which I suppose it was.

Welcome Sean Michael Keenan! Part I - the birth & the hospital stay

2008-08-21T19:00:00.000-07:00

It started around 9:45 pm on Tuesday evening the 12th in Amy-Rose's beautiful back yard. Five long days after his due date and just moments after one of those badly needed heart to heart conversations about life birth and family. The first contraction wasn't that different than the thousands I'd been having for weeks, but just different enough to get me excited. One more hug for a precious friend and I hastily made my way the five minutes to my home. The screen door was latched (so Pearlie won't run out unnoticed) and nobody could hear my knocking as the third contraction came with an added punch that made it clear something was finally happening. My mom (Grammy) had come down five days earlier, because I was sure the baby was coming any minute, and I don't think she or Matt believed me when I said, "I think this is it". But by the fifth contraction it was clear that we'd better get a move on. Colleen, one of my midwives, arrived shortly thereafter and found me moaning on the living room floor, but the subsequent contractions were a good 10 minutes apart and I apologized for having her come so early. I'd been dilated to 4 cm a whole week ago, but had no idea where we were at now. 20 minutes or so later I asked Colleen to check me anyway. Her eyes widened as she announced, "you're 10 cm with a bulging bag of waters. We need to go NOW." As soon as that wretched contraction subsided I forced myself to stand and move toward the car, praying I'd have 10 minutes before the next one came. Colleen got in back with me and we were off. Matt had just put Pearlie and Rohan to sleep. Grammy called Amy-Rose to come be with the kids so she could follow and join us at the hospital.

Now. This is where I pause to pay my respects to the thousands upon thousands of incredible women who have made this journey before me. I had spent many nights wondering how I was going to cope with the pain of labor during the transition to the hospital and now I was ten centimeters in the back of the car. I visualized swearing at people who gawked in the elevator or asked me to sign paperwork in the lobby. I feared I'd alienate the staff in my primal state and then endure days of karmic retribution in the form of angry nurses and doctors. Here is how it really went down:

I finished another wailing contraction in the car (water still in tact and still no urge to push) then scooted onto a fancy wheel chair under the beautiful new car port thing at Riverbend. The chair had handles just low enough to allow me to push up so I wasn't sitting on that bulging bag of waters as they rushed me through the lobby. There was no stopping to sign papers, no passing go, no collecting $200, and, incidentally, nobody but us in the elevator. We entered a brand new stark white room and there was a flurry of activity. "It is so bright," I moaned. I couldn't believe they thought I was going to endure this kind of pain under those hideous lights. "Go into the bathroom and take off all your clothes." Having long since lost my logical thinking mind to my welcome animal state, this order sounded eerily like something a female police officer or guard might say during intake at the prison. Colleen followed me into the bathroom where I began to complain about the lights again, and helped me into a gown. I came back out and climbed onto the bed for another contraction and round of loud moaning and complaining about the lights during which time they also were strapping stuff on me, I presume to track the fetal heart rate and contractions. Then the doctor on call came in and spoke with me. My OB was on the way, but this guy was my second best choice if she couldn't make it in time. He knew my midwives would be there with me and would allow them to catch the baby barring any complications. I discussed with him the possibility of breaking my waters because I wondered if maybe the pain localized in my lower abdomen would be a little less and because I'd started to wonder why I was 10 cm dilated but still had no urge to push. We didn't have much time to chat. As I headed to the bathroom again, I blurted out that this reminded me of, "that party in high school where the cops came and I was too sick to make a run for it." Liz Brierly, my other midwife, had arrived, and she and Colleen were trying to figure out how to turn down or out the lights in the bathroom. (BLESS THEM!) Matt came in and I rested my head on his shoulders and complained about how uncomfortable those straps and that hard plastic thing were around my belly. In spite of my altered state, I clearly remember thinking that later it would be so funny to tell people that the switch to turn off the lights ended up being the intimidating red one that said "emergency". This was the first of many funny little things the fancy new hospital had. One more big one and my waters broke and everyone went into even faster motion as we all knew this meant the baby. I moved back to the bed, forgoing the padded blanket I'd brought and Liz had so lovingly arranged on the floor for me (I labored on the floor with both Rohan and Pearl and couldn't imagine being on that narrow bed during my last trimester, so I made the blanket so I could set aside that fear). No sooner had I positioned myself on hands and knees on the bed than another contraction came, this time with lots of push and I'm pretty sure he was all the way out by the end of it. Matt says that Sean Michael's head was coming and that he was the only one there to notice, so he said, "uh, guys!" and the Dr. said, "get ready to catch him, Matt." Cool, huh! Matt says then that his head emerged with his left hand followed by his whole arm before his body. I was enormously relieved to have the laboring over with and began to be curious about his face. It took a few moments to get him suctioned and the two of us situated so I could hold him, but I knew he was fine because he was wailing up a storm. Time of birth 12:44 am. Just three hours after labor began.It was a marvelous moment. He was huge and fat and looked so healthy. His cleft lip and protruding front alveolar ridge looked a lot like hundreds I'd seen during the time I spent learning about this condition. We were shocked that he had hair, but it looked not red or blonde, but brown. He almost immediately opened his eyes and spent time looking around. I put him to my breast and you could tell how strong is by how voraciously he worked to nurse. I knew already that with this type of cleft he would not be able to create the suction necessary to draw out the milk, but that first moment at my breast was just as precious as with Rohan or Pearl. And so our journey getting to know Sean Michael began.

Once the baby was born and I began to come back to my civilized senses, it turned out that we had the best labor and delivery nurse ever. She had read my birth plan and praised my midwives for making her job so easy. Minutes after Sean Michael was born she brought me all the waivers I needed to sign and was an absolute joy to interact with. She was funny too about all the glitches this new hospital came with, which was much better than being annoyed or stressed. She lovingly delivered us to our mother/baby room where we were handed off to our night nurse. Our night nurse taught us how to use and clean the breast pump, a device I'll spend lots of time with over the next year or more. She made sure Sean Michael's head was always elevated above his hips (to avoid the choking common to cleft palate newborns) and was patient, kind and super knowledgable about caring for and feeding a baby with a cleft palate. You have no idea how relieved and pleased we were to have that kind of support. It made all the harshness and coldness of birth at the hospital totally worth it. I pumped my colostrum and we fed him by putting it in a syringe with a skinny tube attached that we taped to my finger. He sucked on my finger and we pressed the syringe in tiny increments. He did great! From the first feeding Sean Michael never really did all the choking, gagging and spitting up we'd heard so much about. It felt really satisfying to know that he was well nourished.

The next day my mom, Grammy, brought the kids to meet their new brother. Rohan got all dressed up in his sport coat and tie, which he had pick out. They were so precious as they cautiously approached me, but quickly settled in and acted like themselves. Rohan wanted to feel the baby squeeze his finger. Grammy took them to the gift shop to pick out little gifts for Sean Michael and Sean Michael gave them gifts too. Pearlie carried her new doll everywhere imitating me with Sean Michael and Rohan's new nerf basketball hoop is hanging over our front door.

We received an abundance of support from all kinds of professionals while at the hostipal and every one was prepared, knowledgable, kind and helpful. Lactation consulting, great nurses who spent lots of time with us while we learned to feed him and even teaching us new ways to burp him, a pediatrician, an occupational therapist who showed us how to use the Haberman Feeder and I'm sure I'm forgetting something else. It was more than we could have hoped for. The people made it great for us!!

Entering the home stretch! 6-27-08

2008-06-27T18:03:00.000-07:00

* note to those new to reading blogs. Each new post (entry) gets added at the top. You have to scroll down to the bottom to read what I've written from beginning to end in chronological order.

I'm 34 weeks pregnant today and definitely in the home stretch. I can't believe how far we've come since first finding out about the cleft at 18 weeks. From being extraordinarily sad and overwhelmed by the prospect that our precious newborn would not breastfeed and would have to go through lots of unknown and sometimes painful medical procedures, to finding myself pretty much at home with the facts and details of bilateral cleft lip and palate and excited about meeting my new baby. Matt and I have both been pretty avid students of the predictable logistics of life with three kids, one cleft affected, and slowly but surely laying the foundation to be prepared and supported for the best possible experience for our whole family once he is here. Here are details for those who are interested:

In late May we had lunch with Kristy, a colleague of Matt's whose second baby was born with a unilateral cleft lip and palate nearly a year ago. She brought photo albums with gorgeous photos of her sweet boy from birth through lip repair and tons of advice. She said the nurses at Sacred Heart were great and her son was not taken to the NICU; that cleft palate newborns gag a lot on the normal oral secretions newborns deal with and that keeping the baby in a sort of upright position helps; that many cleft palate babies have reflux and keeping them in that position for sleeping is key as well; and so much more about pumping and caring for her son during through those first weeks. Kristy's was one of a handful of families to be the first to experience NAM (click for description of NAM) at Doernbecher and she had great things to say about it as well as useful tips on how to receive the different types of advice on how to do the taping associated with NAM(click to see NAM photo gallery) from the different doctors. She had ideas for making the weekly road trips to Portland fun and warned that one time during her son's treatment, the NAM device (click to see photo of the device) adjustment wasn't quite right and that rather than it being colic, discovered painful sores in her son's mouth. They called Dr. Garfinkle and went back to Portland to correct the adjustment. Kristy's son will have the palate repair soon and we wish her the best as she learns the ins and outs of dealing with that more intense surgery. She will be a great resource for us along the way and we are very grateful to her for extending herself to us about such a personal journey. Thank you Kristy!!

On June 18 we (me, Matt and my two midwives Liz Brierly and Colleen Forbes) met with the head of lactation for Sacred Heart Medical Center and the lactation consultant most experienced with feeding cleft palate babies. I had a lot of apprehension about meeting with her. I feel so strongly about breastfeeding. Not only is breast milk the perfect unduplicatable (is that a word?) food for human babies, but the breastfeeding relationship is the natural way throughout time that mother and baby have formed the bond necessary for healthy human development. Was I going to meet someone who appreciated the power of this magnificent and ancient art or a medical professional that was only concerned with calories and weight gain. Well....I'm not sure how to express how relieved and grateful I was to meet Debbie Jensen. She described in great detail the first moments after my baby's birth which matched identically the first moments after Rohan and Pearl's births. I started to cry. She said, "Bring your baby to your breast, just like with your other children. Your little person doesn't know that his mouth is any different and he'll be born expecting that. He'll root and search for your breast like any other baby. Let him do all those things. They are critical for his learning to feed." I'm crying talking about it now. She said that establishing milk supply with a pump is tricky at best for anyone, but that moms who've nursed before are trickier because our bodies think they know how this is supposed to go and I'm going to have to fake my body out in a way. Debbie came to our meeting with two pages of notes specially prepared for me on what to do those first 24 hours and beyond; when to start hand expressing colostrum, how to feed it to him, and when to start using the breast pump, and the how critical it is to pump more than he'll eat in the beginning to get a running start at that 3 week milk production lull common to all breastfeeding moms. She talked in great detail about the importance of making each feeding as special as a breastfeeding. That I must be calm and have a cozy relaxed connection with him. Feeding him through the Haberman feeder may not be the same as feeding through my breast, but that feeling the feelings that go along with a normal breastfeeding relationship is critical for the release of hormones necessary for milk production. Stress stops those hormones. Yeah!! I don't have to give up all that overwhelming love and joy. I think Liz and Coleen were as elated as I and we've formed a sort of pact to create the most stress free postpartum experience possible, with the help of our family and community, in order to maximize my chances for successful milk production. Did I mention that I LOVE Debbie Jensen?

Then last Monday, the 23rd, we drove to Doernbecher and had a meeting with Dr. Judah Garfinkle (apparently he always wears that bowtie) the extraordinary orthodontic specialist who brought the NAM to Doernbecher last fall. Dr. Garfinkle agreed to meet with us now, before the baby is born, by special request. I just couldn't see having a clear head if I was hearing it all for the first time when the baby is only a few days old. Those early postpartum days are pretty foggy and sore even under the most normal conditions. Turns out he is a very fun, friendly man and very easy to talk to. We watched his power point presentation on NAM and saw the best photos yet of what a unilateral and bilateral cleft palate may look like. I was worried about the mold they take of the baby's mouth (have you ever had a dental mold done? Yikes!) and he has this great method. First of all, he has someone in the room whose an expert at newborn emergent care. He turns the baby sort of upside down so he can see his throat/airway, and he said the palate mold only take a couple of minutes to set. They also take a mold of his nose and face. I'm so glad he agreed to meet with us prenatally. Even just making another trip to the craniofacial clinic at Doernbecher took us a step closer to feeling comfortable with it all. Dr. Garfinkle said he'd be happy to come to Eugene to do a presentation on NAM to lactation consultants, pediatricians or whoever is interested. I'm going to tell Debbie and our ped about that.

Now we just need a minivan so we can haul around this big family. Thanks to Michael, Mary and my mom, Linda for your help. I'm sure we'll have one soon.

More later........ Love, Megan

So...now we just need to

update 6-8-08

2008-06-08T14:43:00.000-07:00

Last Monday Matt and I met with Kristy Kruger, a colleague of his here in Eugene whose 10 month old was born with a unilateral cleft lip and palate. Her son was one of the very first families to undergo the NAM procedure at Doernbecher. He has had his lip repair already and they are anticipating his palate repair surgery in August or soon after. It was really helpful to talk with a parent who has been through NAM. She talked about her son's reflux (also common with cleft palate babies), the weekly trips to Portland and life with the NAM. She warned us that sometimes babies get painful sores in their palate and the device needs to be readjusted. I've read about this from several other parents online too. She believes it was well worth it. It is true that her son's nose looks really good. We have a meeting with Dr. Garfinkle up at Doernbcher to hear the whole NAM presentation on Monday the 23rd. We are looking froward to getting some of our questions answered.

My friend Ginger shared this quote with me. It is her account of telling her 7 year old son Zeal about our baby, "Rohan's baby brother".

"I was showing Raphael(her husband) the site you mentioned, and Zeal walked up. He asked what we were looking at and we explained to him that Rohan's little brother had what was called a cleft palate. He very thoughtfully looked at the pictures, smiled gently and said, "yeah, cause human beings are all like part of a garden and we all grow different." and ran off to play."

Thank you for sharing that, Ginger!! Some of you with kids might find that inspiring as you broach the subject with them. You gotta check out Ginger's new book "Child of Wonder" at:

http://www.gingercarlson.com/Welcome.html

More later!

Megan

From my cousin Chris

2008-05-30T16:47:00.000-07:00

An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck.

One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water.

At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing home only one and a half pots of water.

Of course, the perfect pot was proud of its accomplishments.
But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream.

'I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.'

The old woman smiled, 'Did you notice that there are flowers on your side of the path, but not on the other pot's side?'

'That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.'

'For two years I have been able to pick these beautiful flowers to decorate the table.

Without you being just the way you are, there would not be this beauty to grace the house.'

Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding.

Baby boy Keenan update 5-29-08

2008-05-19T16:12:00.000-07:00

Welcome to my blog!

Note: everything in blue letters is an active link. Just click on it to see more about that thing.

Well, we had our first visit to Doernbecher Children's Hospital in Portland on Wednesday (5-14). We met with the Nurse Practitioner who will coordinate all of the baby's care and treatment with all the different doctors and therapists. Her name is Lisa Crupi and she is with Doernbecher's cleft palate and craniofacial program. We liked her a lot. Here are the major things we learned from Lisa:

- Ultrasound is not a very exact way to diagnose, so they don't recommend we get more scans to try and figure out the degree of cleft in his palate. She thought we should plan on that the baby has a cleft palate, and we'll just have to see how he actually arrives. All the things they told us will happen are based on the assumption he has a bilateral cleft lip and palate (bclp). Here is a website with lots of photos of cleft affected babies pre and post operative so you can familiarize yourself with what a baby with a cleft looks like. http://www.cleftadvocate.org/gallerya.html Since there are several types of facial anomalies on this site, just scroll down to look at children with "bclp" next to their names.

- Given we just won't know about his palate until he is born and the fact that some babies with cleft palate have airway issues, we are going to have the baby here at Sacred Heart Medical Center in Eugene. Matt and I moved our family from Portland to Eugene almost 4 years ago so that he could open an office here for his firm, KPFF Consulting Engineers who have done all the civil engineering work for the new hospital. The ironic thing is that the new hospital opens August 10th. Two days after my due date. Since Rohan was right on time and Pearl 10 days early, we are not expecting to get to have the new fancy hospital. You can check it out here: http://www.peacehealth.org/Oregon/News/Facilities/default.htm

- Although he may be able to nurse in some way (say for comfort) we should plan to pump and make sure he gets his calories via a feeding method that works for cleft palate babies. Lisa recommends the Medela "Special Needs" or Haberman Feeder. She gave us one and showed us how to use it. Good news! The Medela breast pumps and feeders are BPA free. Whew! What a relief.

- My OB will prescribe me a hospital grade pump which are supposed to be best, and my insurance should cover it. We meet with the lactation consultant at Sacred Heart on June 18th to find out more about troube shooting feeding issues and getting a good pump. Those who know me well know that breastfeeding has been very important part of my parenting with Rohan and Pearl so you can imagine I am very sad at the prospect of not being able to have this relationship with our new baby. The most important thing is that he get breastmilk, so I'm glad to find out that there are online support groups for women who must exclusively breastfeed.

- Based on recommendations from several people, we chose the surgeon who will do the lip and palate repair. Her name is Anna Kuang.

- Doernbecher is one of a half dozen centers in the country who have available an orthodontic procedure called Nasoalveolar Molding (NAM). It is a relatively new procedure, so not a lot of research is available, but it is supposed to close the gap of the lip and palate clefts before surgery and improve the shape of the nose over older methods. We are happy that it is a non-surgical procedure, a lot like an orthodontic retainer. The Dr. who does this procedure is named Dr. Judah Garfinkle. We will have an appt with him on June 23 to hear his presentation on NAM.

- Usually, the NAM needs to be adjusted weekly, so during that time we will be making lots of trips to Portland.

- The NAM device may be cutting edge and relatively painless to the baby, but it is pretty intense looking. Here are photos of babies with the NAM. If you plan to spend time with us, you should check them out. http://www.cleftstories.com/cleft-lip-palate-archives/nam-gallery-2/.

- So our baby will wear the NAM 24 / 7 until his first surgery, the lip repair, at 4 - 5 mos.

- Babies with cleft palate usually have chronic ear infections because the muscles of the in tact palate are essential for proper Eustacia tube function. Most doctors recommend tubes as a preventative measure early on, but at Doernbecher the ENT believes tubes are most effective after palate repair. We are relieved we'll have a whole year to try alternative methods to relieve his ear pain before he gets tubes. The fluid in the ears can cause hearing damage, so regular hearing screenings are part of the care at Doernbecher.

- The second surgery will happen at one year. It is the palate repair. They will also put tubes in his ears at that time.

- I don't know much about this yet, but speech problems are also a concern, so speech screenings start around 8 mos.

- Some kids need a palate lengthening surgery around age 4 or 5 in order to make all the normal speech sounds.

- If his cleft is complete (goes through the gums in front), he'll probably need a bone graft so his permanent teeth can properly root around age 7.

Whew!! I think that is a good recap for now.