Cleft Mommy

I belong to an amazaing support group, more like a family, of Mommy's and some Daddy's of Children born with clefts (and also some people who themselves were born with a cleft). THis family of men & women have become such an amazing source of love and support for me, and such a source of knowledge!

Anyway on our page we share our cleft journey (as we call it) and I recently updated ours and wanted to share it with anyone else who might be interested in reading it.

 

 

Eastons Birth Story  Luke and I were married on March 19, 2011. On our honeymoon I decided I was so sick of the birth control I was on and stopped taking it, we decided that if it was God’s will for us to have a baby then we would have a baby but that we’d also just be careful and not plan it but not prevent it either. A week before my 28th Birthday I told Luke there were weird things going on inside my body,  I was way more exhausted than usual,  there were some odd little pains in my lower abdomen,  and overall I just felt strange. On Friday July 29th I took a pregnancy test and it was negative, I took another on July 30, my birthday I took another, negative. The morning of July 31 I took one first thing, around 7 AM and it was positive, the second line was SO faint, that Luke definitely didn’t believe it and he went to the store and bought another box of tests. I took probably 5 tests, both the lines and digital and my suspicions were confirmed,  we were most definitely pregnant. The next few months flew by fast and furious I started a new job in August,  and we had to wait until September before we could go to the OBGYN and get a confirmation.  We did just that, went to the Dr in September, and for the first time we saw this little ball of cells and a heartbeat that was almost 10 weeks old and the sound of that heart beat was the most amazing sound I’d ever heard up until that point in my life. We were so proud, terrified, but proud. At 16 weeks we chose to have an elective ultra sound to determine the sex of the baby, and found out we were having a sweet boy. Immediately we narrowed down the names we liked and we decided on Easton Landry, it was actually a pretty easy decision once we knew he was a boy. At 21 weeks we went in for an anatomy ultra sound to measure all of his bones and organs and take a good look at  the babys physical development. We were so excited to see him we were almost giddy going in to that appointment, I just knew they were going to tell us he was perfect and amazing and wonderful and beautiful. Instead we were told the baby has a cleft lip, possible palate,  his kidneys seemed to be enlarged and that his heart had a spot on it. I panicked. My blood pressure shot through the roof and the Dr sent me home to rest. I went home and I bawled, I never ever ever expected to be told my baby would have something “Wrong” with him. We scheduled another Ultra sound a couple of weeks later to look at his heart & kidneys again. When we went in for that ultra sound there were no changes so we were referred to a Perinatologist for further assessments of the babies development.  We went in for an appointment with the specialists and they confirmed that we had a cleft lip & palate, his heart did have an echo but they were not at all worried about his kidneys which gave us a little relief. At this point we scheduled an appointment with a group of fetal heart specialists who come to town once a month. When we had that heart scan, the specialists found NOTHING abnormal with his heart, and I never ever ever have felt the amazing sense of relief like  I did that day. Now we just could focus on the cleft. In February we traveled to Fort Worth and met with the craniofacial surgeon at Cooks childrens hospital who we have decided will work on Easton once he has his surgeries, and we got the info we needed from him. The whole pregnancy we watched and monitored my blood pressure, and how thankful we are that it never got in to high, dangerous levels, it stayed elevated but never shot up enough to be hospitalized for. I never went a day with out worrying about his cleft, what obstacles he would have to overcome, crying over why our baby has to have this “abnormality”, what did I do wrong to cause this? Will people judge him for this? Will he be able to eat or talk….I cant tell you how many nights I cried and cried and Luke so lovingly held my hand and promised me it will be ok.  In the last month of my pregnancy I seemed to be gaining weight like crazy, and my tummy was getting larger and larger. My dr decided to have one last sonogram to get an estimate on his size, and that confirmed what we already knew, he was going to be a big baby. At this time we decided with the Dr to schedule a C-section and not attempt a natural birth. On April 4, 2012 at 10AM we traveled across the street to the hospital to be admitted. They immediately took me in to a room and got me in a gown and started Ivs on me. I was asked a MILLION questions while they prepped my body to go in to the OR. Luke was getting dressed in his scrubs and my family and Lukes mom were all there waiting to meet the newest member. At about 12:15 I walked across the hall to the OR and Luke waited in the hallway while they gave me a spinal and got me numb and got the sheet up. They brought Luke in, there were so many ppl in that room, and I knew they were working on me as I listened to my Dr talk to a medical student who was observing, I suddenly hear my Dr say “Get Dad” and they stood Luke up so he could watch them pull Easton out of my tummy and into the world. Immediately I heard him cry and a wave of relief and love rushed over me and I started crying. It was the most amazing sound I’ve ever heard. I couldn’t see Luke face but I imagine he was grinning bigger than he ever has. All I heard was the nurses/doctors say “he is such a big boy” and “Such good color” My OB told me “Katie he has the cleft, but he looks real good”.  The pediatrician brought him over wrapped in a blanket, told me briefly he looks really good, the cleft looks pretty severe but he looks healthy, I kissed him and they whisked him and Luke away to the nursery. I was in recovery for a few hours, they brought Luke in after a while and he told me how beautiful Easton was, and how wonderful he is, and how all the family cried when the nurses held him up in the nursery for everyone to see. I was taken to my room  around 2:30-3:00 in the afternoon to relax, and my family was all there. I didn’t get to see Easton until they brought him to me at 7:30 PM. He is the most beautiful, incredible little angel I’ve ever seen. I can’t believe that God blessed me to be the mother to this amazing creature.    I don’t even see his cleft. I was so concerned before he was born that I would see it and be upset by it, I don’t even see it, he’s so beautiful and perfect. There are NO imperfections or abnormalities on him, he is not capable of being abnormal or imperfect. Its amazing how God shows his miracles. Easton is definitely our little miracle baby, he is perfect and amazing, and in his own little way has already touched so many peoples lives.

10/10/2012

On October 9, 2012 Easton had his first surgery, lip/nose "repair" as they call it. As I type this I am sitting up, at 5:00 AM on one end of the couch, Luke, Eastons father, is laying here asleep. At this point I can honestly say the "repair" feels like they have dont nothing but ruin his face. THat sweet, amazing smile, that is plastered on  everything I own, is gone. He will never have the smile he was born with again, and it breaks my heart.

THe road to get here has been long and stressful, but the silver lining is we never have to do THIS exact thing again. Never will his face change so drastically, never will we have a "first" surgery again with him. THe first time we were supposed to have this done was in Mid August, we got here to Cooks Hospital in FOrt Worth and they turned us back because of bronchitis that I didnt know he had. After that we had 3 more dates but had to call and reschedule, ear infection, thenanother ear infection, pink eye twice, upper respiatory infection, sinus infection.....finally he was well enough today, sounded good, and they went through with it. Never have I been so scared or worried in my life as I have been leading up to and during this surgery.

But now almost 24 hours after surgery, Easton is doing well, we are giving him tylenol with codeine every 4-5 hours (depends on when he is awake) to keep his pain under control and he is eating about 4 oz od formula every few hours. All things look good, no fever or major swelling or anything, so we should be released this afternoon sometime.

THe outpour of support and words of encouragement is astounding. The sheer number of people who have been praying for us up until this week and today (yesterday I guess) is incredible.

This is our life, this will continue to be our life, and now we have a whole new smile to love.

 

His very first picture the day he was born 4/4/10

One month old 5/4/12

4 months old 8/4/12

The week before surgery 10/2/2012

The day of his surgery 10/9/12

Just after recovery 10/9/12

Released from the hospital 10/10/12

1 week post op 10/16/12