Since I’ve been really bad about posting milestones in Hill’s life on here I figured I better start with the basics – his checkups, visiting doctors and finding the perfect surgeons. This is going to be an obscenely long post and will only cover up to before his cleft surgery. Since he has been to many doctors over the last 6 months we have had many experiences, humbling, stressful, appreciative, uncertain, roller coaster of experiences. I want to make sure I document them all the best I can - not only to reflect back, but maybe to help someone that is going through the same experience the whole dark hole of unknowing to feel a little better.
13 DAYS OLD
At 13 days old we drove to New Orleans, LA to visit the Cleft & Craniofacial Team of New Orleans (Monday, January 25, 2010). I had set this up back in December before he was even born. The nurse and team coordinator of the visit was Mary Ellen Alexander. She is precious and very very helpful. She had sent DVD’s in advance and all kinds of pamphlets and education materials. She literally is the person that talked me out of a depression when we first found out of Hill’s condition and unsure of the severity. She made me feel like this happens to everyone and it’s totally not a big deal, which is not 100% true, but it made me feel that way and I love her because of that.
We got to the Children’s Hospital at like 2:30 pm even though our appointment wasn’t until like 3:00. We wanted to make sure we had all our paper work filled out and were there early. We got there and at that very moment my life changed. The tears well up in my eyes just simply thinking about it. It was the most inexplicable environment I’d ever been in. The place its self was cutesy with bright rainbow colors on the wall and color coded hallways. I had to make a pit stop so while Chip and Hill waited for me I had my first breakdown. I walked into the bathroom and there was a lady and a personal nurse changing a little 5 month old girls’ diaper. The little girl had a tracheal tube, an oxygen tank, a feeding bag and a misshaped head. I briskly walked by them and out of the bathroom after washing my hands and fell into Chips arms only to burst into tears. Who am I to feel sorry for myself and my son when there are so many other horrible, inexplicable, life threatening problems Hill could have been born with? I may have been crying because I was so fortunate. I’m not sure, I’ll ever know – it was numbing. From there we found the waiting room to where we needed to go. We walked into the crowded room, checked in, filled out paperwork and felt the germs and lack of cleanliness that surrounded us. The people there were different. The facility was undoubtedly state of the art, but the germ-ex cleanser immediately was applied and didn’t seem like a place for my 13 day old baby. I looked around the room at all the other children trying to find one that compared to Hill and his right incomplete cleft lip, isn’t that what mothers unconsciously do? Compare their kids to others. I didn’t see any, I saw children that had deformed skulls. Chip said he saw 2 kids that had repaired clefts that looked fantastic, but I didn’t see them. I mostly kept my head down staring at my sweet pea as I cried, praying and thanking God for such a sweet miracle. I prayed for the kids in that room, that they know no suffering and a sense of normalcy. We waited for an hour before they called us back around 4:00pm. They measured and weighed Hill and took us back to a room where we waited, again. Even though we were exhausted it didn’t matter. We were there and ready to meet the doctors and hear what they had to say. The process was another 3 hours. A specialist would come in ask us questions but most didn’t even touch Hill. There was an ear nose & throat doctor that came in, the plastic surgeon, a social worker that came in to evaluate all three of us; were we fit parents, was Hill in a positive environment type questions. The speech pathologist came in and then the genetic doctor to conclude the visit. The plastic surgeon seemed perfectly capable, very educated, young and seemed to think “a few” surgeries would take place and all would be corrected no problem. There wasn’t any explanation on how the procedure would work. The genetic doctor was a trip. That is a story in itself. He asked us a plethora of questions like our family medical history to if Chip and I were related. He was the only one that thoroughly evaluated and inspected Hill. Inspected is an understatement. He literally pulled out a magnify glass and looked at his toes and fingers and pinched him and felt his back and tapped on his tummy and gave the curvature of his ears a good looking at. It was so weird. As he looked at Hill’s feet with lights and magnify glasses I had to ask, “What is it exactly you are doing?” He said I’m looking at the swirl patterns in his feet and hands and fingerprints. Oh, yeah…of course. Silly me. He took a picture of Hill with a camera he conveniently had around his neck in a big bulky man purse the whole time that kept getting in his way and then asked for us to all stand together and take a family picture. I asked him if we could use it as our Christmas card…he didn’t get it.
Nurse Alexander came in to let us view the portfolio we requested. We wanted to see the plastic surgeons work. First of all, the book had the doctor we saw and another plastic surgeons photos of their work in it. How do I know who did what? The positive news was that as you know they are only going to display their ‘best’ work and it seemed as though their best work was incomplete cleft lips like Hill’s. Nurse Alexander let us know that that concluded our visit and they would send us a report after the doctors met together and gave their evaluations. It was 7:00 pm and we had a 5 hour drive home. What a day, a life changing, numbing, eye opening, long tiresome day. Would we use these doctors? They are extremely capable. They confirmed it was merely a cosmetic issue. Do we need a team? Am I supposed to get a warm fuzzy feeling about this whole situation? It was a rollercoaster and Chip and I both were exhausted physically, mentally and emotionally.
TWO WEEK CHECKUP
On Wednesday, January 27th (15 days old), Hill had his routine two week check up with Dr. Erwyn Freeman at Children’s Medical Group in Flowood, MS. He was back up to his birth weight by then (around 9 lbs 1 oz) and his umbilical cord that goobed me out the whole time it was attached finally fell off that exact day in the doctors’ office. The nurse asked me if I wanted to keep it. Umm, what? No! Yuck! Really? I mean, what would I do with it? Do people keep it? What? Yuck, No!
His plastic bell on his tt privates in the front from his circumcision was still on there and goobed me out even more than the umbilical cord. At one point I called JJ to ask her the inappropriate question of “Can I come look at Harvey’s penis?” I wanted to make sure Hill’s was alright because I know NOTHING about boy parts and for some reason Chip didn’t know either. Boys are to know about boy parts. It’s the rules. So anyway, back to the doctor visit. Hill’s privates were ok but his plastic bell thing had not come off even remotely so Dr. Freeman sent us back to Women’s Hospital so the pediatric nurse could cut it off - - the plastic bell not his tt. Dr. Freeman said that they put it on there and he prefers them to take it off. Touche. We discussed with Dr. Freeman his thoughts about a cleft repair doctor and he said since it’s cosmetic that he’d recommend anyone we were comfortable with. He would do a little research in the mean time and ask around. No shots were given, just a ‘hey how ya doin’ do you have any questions?’ visit. Hill was beefing up properly since he was on formula and able to actually eat instead of me depriving him of food. Boo, me and my boobies! He was up to 2 oz. of formula and every time we’d go for a weight check up at the hospital (every other day after he was released from the hospital) they’d load us up on some Similac Advanced 2 oz bottles. I never ever wanted them to stop. I had enough sterile packaged bottle nipples to help feed all the hungry children of the world. All in all he had a good check up and was umbilical cord and circumcision bell free. Yay for funky things falling off!
22 DAYS OLD
On Thursday, February 4th we had an appointment with Dr. Dan Shell in Memphis, TN. By this point my son has been to 3 states before he was even a month old (MS, LA, TN.) That’s more traveling than some do in a lifetime. We came by Dr. Shell via a friend of a friend type deal. Chip’s Aunt Dale knows a doctor that knew this doctor. After extensive research, which you know we did, we thought we’d go to him for an evaluation. Dr. Shell has done thousands of repairs. He wrote a book called pediatric plastic surgery. He was over the cleft team at University of TN for years and he also does Operation Smile where he goes overseas to third world countries to repair clefts. Not to mention all the repairs he's done personally through the mission trips he goes on through his church. There is no telling how many repairs he has done in his lifetime. Undoubtedly the experience was going to be there. The question was; would we get the warm fuzzy feeling we were searching for? Were we asking too much and being unrealistic by wanting that feeling?
We walked into Dr. Shell’s office. It was not anything remotely like our New Orleans trip. He was on the second floor of a commercial building in a suite. He had a pitcher of water with fresh lemon and cucumber slices in it sitting out to enjoy. The Food Network was on the flat screen TV and seemed to possibly be a haven for soccer moms and skin care gurus. We filled out the paperwork and lounged on the big poofy couch until they called us back. Dr. Shell came in and he was a big teddy bear looking fella. He took time to get to know us personally, he too was an Ole Miss alum, we talked and he evaluated Hill; by the end of our discussion not only did I want him to come over for dinner, I learned step for step how he would go in and repair the lip. The procedure they would be doing is the Millard operative technique it's more or less a recess of one lip and an advancement of the other lip to where they symmetrically fall into place. I’m a visual learner and so his demonstration and pointing to Hill’s lip was comforting. He pretty much told us what our day would be like from start to finish from 5:30am the day of the surgery until we left the hospital. It’s almost as if he jumped in my head and knew all the things to say without being prompted or asked. We did have one prerequisite in our search for a surgeon. The procedure had to be done in children’s hospital. We wanted a pediatric anesthesiologist, not someone that puts 180 lb men under, and we wanted people accessible that knew how to work on tiny people hearts and lungs in case of emergency. Dr. Shell assured me that he did all his repairs at Memphis LeBonheur. So to conclude our visit he took a picture of Hill and we told him we’d be in touch.
Dr. Shell walked out of the room and immediately Chip and I looked at each other and simultaneously said, “He’s the one.” We both knew. We both felt that warm fuzzy feeling that we were unsure would come. Our search was over. What a weight that had been lifted. Talking about it now makes me relive that feeling of relief. Wow, what a heavy burden that was weighing on our hearts and minds since the day we found out of Hill’s deformation in utero. I’m pretty sure eons went by; December 14, 2009 until February 4, 2010 (7 ½ weeks) is a lifetime when you are worried about your tiny miracles well being and what exactly is wrong, who is going to fix it….then after we found the perfect doctor came the apprehensiveness between February 4, 2010 and April 21, 2010. That would equal 10 ½ weeks of freaking out knowing the day of his surgery is approaching. We had to learn to live life and absorb every second of it in the interim.
TWO MONTH CHECK UP
On Wednesday, February 24th Hill went for his two month check up and the first 1/2 of his shots in Flowood again with Dr. Freeman. He was such a trooper and didn’t even cry but for literally 2.5 seconds.
His head was 39 inches around
His weight was 10 lbs 6 oz
He was 21 ½ inches long
Was able to eat a 4 oz bottle now
We were able to discuss with Dr. Freeman that we had chosen Dr. Dan Shell as Hill’s plastic surgeon for his cleft and we felt good about it. All in all, little man had a great check up and we scheduled his second half of two month shots for Monday, March 8th. We divide them up, just a personal preference. He doesn't see the doctor when we come in for the second half of shots - A nurse administers them.
This concludes our doctor visits for today. The next post on Doctors, Checkups & Shots (Part 2) will talk about his cleft repair, follow up appointments and both his 4 & 6 month shots. Wow, where has all the time gone?