Entering the home stretch! 6-27-08

* 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

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