Whitney Taylor King was born on May 29, 2008. I had a pretty "normal" pregnancy with no complications. I had the trisomy testing done and two ultrasounds, one performed by a Perinatologist, which both showed a normal, healthy baby growing inside. After three previous children I assumed my baby would be just as the others had been....perfect! We were so elated to find out that we were expecting a GIRL after three boys! I spent my time planning and shopping for my sweet little girl and loved picking out pink stuff for a change. She was to be the most spoiled baby girl on Earth. Before she was even born, she already had 15 pairs of shoes and a closet full of designer clothing. The only issue I had with this pregnancy was that I couldn't feel her move very often. She took forever to start moving (first felt kicks around 24 weeks) and I only felt her moving about once a day.
Whitney was due on June 12th, Jason's and my 9th wedding anniversary! We couldn't wait for her arrival. However, she and He had other plans. On the morning of May 29th, Hunter's last day of first grade, I started feeling mild contractions. Having been through this three times before I thought nothing of it and got Hunter up and dressed for school. I decided to wake Jason (it was his day off from firefighting) and let him know that I was in labor. I remember him looking at me and saying, "Are you sure?" Um, hello, been there, done that THREE times! YES!!!! I'm in LABOR!!! I asked him to get dressed and call his mom to watch the other kiddos and headed out to take Hunter to his last day of school.
As I was driving to school, a short 5 minute drive, I started feeling contractions every 2-3 minutes and they were growing in intensity. At this point I knew I'd better kick it up a notch and go take a quick shower! By the time I got back home, I was worried that it was happening so fast, but still thought I had PLENTY of time! Boy was I wrong. I barely got out of the bathtub when I just knew that it was time. I yelled at Jason to get in the car (he still thought he was going to take a shower and get ready....ha!) We shoved the other boys in the car and raced to my mother-in-law's house. At this point I am yelling and panting and freaking completely out. As soon as we dropped the kids off and got back into the car, we drove about 2 miles and my water broke! I had never experienced this before, at least not on my own because the doctors always broke my water for me, so I was in full-blown freak-mode. Jason was freaking too because even though he's an EMT, he was not prepared to deliver his own daughter and I was not about to let him! At one point we even thought we were going to have to pull over at one of the fire stations and let them deliver me! It was intense. Jason got on the phone and dialed 9-1-1 and started talking ETAs and a bunch of other medical jargon. Apparently he wanted them to know at the hospital that we were on our way and needed IMMEDIATE help.
As I arrived at the hospital I wasn't sure I could stand up to get into the wheelchair a nurse had brought to the car. I really thought that Whitney was just going to fall out when I stood up, no kidding. I was screaming and yelling and covered in water....not exactly how I pictured my last delivery and completely different than the previous three. In the meantime, the nurse asked Jason to go park the car, but he had this great idea that he needed a towel to clean up the mess from my water breaking before he could park.....men! I got up to Labor and Delivery and everything started going in super-fast speed. I think every nurse on the floor was at my side and sticking me with needles, placing monitors on me, and telling me to calm down :) As one of the nurses checked my progress I heard her say, "She's complete, buuuuuuuttttt......sHe'S BrEeCh!!!!!!!" Holy cow, I had never had a c-section before and I knew that's what that meant. I asked one of the other nurses if I could get my epidural NOW and she just laughed at me! Can you believe it? The next words I heard were something about emergency, STAT, and who the doctor on-call was. My doctor was on vacation as luck would have it. About this time, Jason walked in from parking and cleaning up and I remember looking at him and saying, "I have to have a freaking c-section!!!" I was so scared.
Everything from that point on was a blur. I just remember being in the worst pain I have ever experienced and begging the anesthesiologist to put me out. I literally thought I would die before they put me under. I could hear the baby's heartrate dropping and a lot of commotion.
The next thing I knew I was awake and being told that the baby was going to be okay. Apparently the doctor had to call in a second doctor to assist with the delivery because Whitney was frank-breech and stuck inside me. Jason said they wouldn't let him in the OR, but he could hear what was going on. She wasn't breathing when she came out and they scored her a 3 on her first APGAR which is not good.
The first day with Whitney was wonderful. She was so tiny at 6lbs, 9 oz. and beautiful. She looked just like Hunter when he was a newborn. She just appeared to be perfect. However, we would soon learn that wasn't the case.
On day 2, Whitney wasn't eating like they wanted her to. She was not sucking on the bottle and was sleeping literally all-day long. She was very hard to wake and only taking about 1/2 ounce at each feeding. We just assumed it was the anesthesia from delivery and it would wear off and she would be fine. Not the case.
Later that day, the Pediatrician came in and asked if I had heard about her heart murmur. After I told him I had not, he explained that he heard a murmur and would like to do an echocardiogram. We agreed. He also wanted to do a CT-scan to check her brain activity since she was still so lethargic. We agreed to this as well even though I honestly thought it was an overreaction. She was going to be fine after the anesthesia wore off. I mean, afterall, I was still groggy from the whole ordeal.
The results from the two tests weren't good. The echo. showed 2 holes in her tiny heart and the CT-scan showed cerebellar atrophy. I wasn't sure what all that meant, but knew it wasn't good. We also noticed that day that her little throat looked extremely tiny. I'm talking about the opening in the back where your uvula hangs down. She didn't have a uvula and the hole back there was no bigger than a straw (and I'm not talking about those big McDonald's straws either). We mentioned it to the nurses, but they just kept telling us that she was tiny and that everything on her body is expected to be tiny as well. hmmm....
On day 3 the Pediatrician decided to do a chromosome study on her just to rule out any problems there, but reassuring us that it would come back fine. Not the case either. We found out later that she does indeed have a chromosome disorder. It's a 10q deletion on 26.1. I know this means nothing to anyone reading this, but now that we know all about it, here's what we know.....
This chromosome disorder is EXTREMELY rare. There are only about 25 cases reported and not much research to speak of. From what we have read, we can expect small stature, developmental delays, mental delays, eye problems, kidney/bladder problems, and heart problems.
While still in the hospital, we finally got one of the nurses to take a look at Whit's throat because everytime she cried or yawned and we saw the tiny hole, it scared us. It did not look normal. The nurse took a look and agreed that it did not appear normal. She called the doctor and he took a look and told us that she has a soft cleft palate. This is a cleft on the very back of the throat. It is not apparent from the outside. We were relieved to know that he knew exactly what it was, but so sad because we knew this would require surgery.
Whitney stayed in the hospital for 7 days after her birth. During this time she was poked so many times with needles and went through so much testing including an MRI. It was the hardest thing I've ever done in my life leaving the hospital and going home without my baby. Thank God the nurses and doctors recognized this and made it bearable. I was given the direct phone number to the Intermediate nursery where she was staying. I was told I could call at any hour and could come visit at any hour. This made me feel a little better. After the second night away, they finally gave in and allowed us to "room-in" with Whit. We were given a family room with a bed right across the hall from the nursery and were allowed to stay with our sweet baby girl. Each day in the hospital was a battle. Whit lost weight and got down to 5 lbs. 15 oz. at one point. The doctor kept pushing for a feeding tube, but Jason and I were so persistent and stubborn that we kept her from being tube-fed. We took turns feeding our little girl and learning all sorts of tricks to get her to suck. We tried several different formulas and nipple/bottle combinations until we found one that worked best. She seemed to do better with the Pigeon system which is a Japanese bottle designed for cleft palates. We were able to get her to take an ounce at a time and sometimes up to an ounce and a half! This was huge for her. The doctor was impressed with our persistence and determination. He commented that with any other baby, he would've put a tube in days ago, but he knew that we were strong (stubborn) parents and let us keep trying. Thank God!
Finally, after seven days in the hospital, the Pediatrician allowed us to go home with little Whit. Again, he kept telling us that normally with a baby having all these issues and not feeding well, he would keep them, but he knew in his heart that we could handle this at home! We saw him every day for the first week home. Thankfully, Whitney was just barely getting the minimum required to keep her out of the hospital. She was up to 6 lbs., 3 oz. by the end of that first week home.
After receiving the news about the chromosome disorder I honestly felt like my life had come to an end. I mean, how could this perfect, tiny, beautiful little baby have a chromosome disorder? I kept thinking there must have been a mistake. Jason and I were tested and our chromosomes came back normal, so they said that her case was just a fluke thing that happened when she was being created with no fault to either of us. It was comforting to know that we didn't have to test our other kids since they had basically 0% chance of having the same disorder.
Hearing news that something is wrong with your child is the sickest feeling you'll ever feel. You feel completely helpless and weak. Like you're stuck in a zip-lock baggie with no air, sweating and gasping for air, knowing that you'll never be able to take another deep breath. If you've never read "Welcome to Holland" written by the parent of a child with a disability, please read it. You can probably google it. It is so accurate.
It took about 2 weeks of complete shock and horror before I finally was able to look in the mirror again and hold myself together. Every time I looked into my sweet angel's little blue eyes my heart would break and I would get nauseated. I just couldn't bear to think about her future and how she may never marry or have kids of her own. And then there's that horrible rush of anger you get when you realize that someday that precious angel will be left on this Earth without her mommy. Then what? Who will take care of her? These were the thoughts that lingered in my head all day everyday for weeks. I was crushed and felt like MY life was over. I couldn't talk to anyone, I couldn't read about it online, I couldn't shower or brush my teeth, or even be left alone because I was so incredibly scared. Just scared to death of what was to come. I have always been one of those people who can't bear the thought of a child being injured or ill....it makes my stomach turn. I just couldn't believe this was happening to me.
Then, suddenly, about 15 days after receiving the news, I looked into my baby girl's gorgeous eyes and I saw the perfect little miracle that I had been dreaming of since I was a child. I took a deep breath and finally was able to say to myself, "This is what you've been dealt, Michelle. God chose YOU to be this tiny baby's mom. You have been picked to raise her and to hold her hand through this rough journey she faces. You are the reason she breathes, you are the only love she knows. You are her hero, her mommy, her best friend." That was the day I decided that I was ready to take on this challenge. There is a reason she was brought into my life. I believe that with all my heart. I have never in my life been so in love. Everytime I look at that face and hold those tiny hands in mine, I fall deeper in love and thank God everyday for my PERFECT little miracle.
In the last few weeks, things have been looking up. We have seen a Geneticist, Neurologist, Cardiologist, Urologist, Plastic Surgeon and Opthalmologist. We have learned from these appointments the following:
Geneticist: Whitney appears to be perfectly normal physically. The doctor didn't seem to have much more information than what we had already read since this disorder is so very rare. She will continue to see her every 3 months for now.
Neurologist: He agreed that the prior CT-scan and MRI showed a problem with her cerebellum. He also diagnosed her with hypotonia-low muscle tone. She will have a follow-up MRI under sedation in October to check again.
Cardiologist: Good news! One of the holes in her heart closed on its own!!! She still has a PFO (can't remember what that stands for), but apparently these type holes are pretty common and no cause for concern unless they grow larger or cause other heart issues. So, we're good for now!
Opthalmologist: This doc seemed to think her eyes appeared perfectly normal! Yay...no baby glasses! One of the common features with this disorder is having eye problems and strabismus where one eye looks crossed while the other is looking straight. She does seem to have a lazy eye, but it's still too early to know for sure. We will see him again in a few months to check it again.
Urologist: Not so good news. They did a renal ultrasound on Whit because it also seems to be common for these kids to have kidney problems. The u/s showed an enlarged kidney and possible reflux. She also has what appears to be an ovarian cyst. We are going Tuesday (8/19) to have a second u/s and VCUG, a procedure where they insert a catheter and send dye into the kidney/bladder to see what happens when the child voids (pees). We are praying that the second set of tests will show some improvement and she will not need surgery.
Plastic Surgeon: We knew she would need surgery to correct her cleft palate, so we weren't surprised to hear that the doc wants to operate fairly soon. He suggested we do the surgery around 6 to 9 months of age which scares me. He told us that the recovery is long. She will only be allowed to feed through a syringe for 3 whole weeks in order to allow her mouth to heal. The sucking action with a bottle could cause the incision to heal improperly. I'm not looking forward to that part.
All in all, we feel pretty lucky so far. Whitney is so pretty and it still amazes us that there's anything wrong because she appears so perfectly normal. I honestly don't think we would have known anything was wrong genetically if they hadn't done the testing of her chromosomes. She receives therapy weekly and this is helping with her strength and muscle tone. We have a great support system.
Whitney is still very small. She is weighed every 2 weeks and is up to 9 lbs, 6 oz. as of today! We are pleased. She is feeding better, taking up to 3 or 4 ounces at a feeding and staying awake to feed! She has also started making eye contact with us and she smiles and coos when we talk to her!! Her favorite person right now is Hunter and the feeling is mutual. He absolutely adores his little sis. He holds her all the time and asks to feed her. He is so good with her and she knows that he's her hero! The other boys love her as well. Chase stops to kiss her on his way through the room and Ryder smiles when he sees her and brings her bottle to me when he sees it sitting on the table.
The best thing I've heard anyone say through all of this came from my mom. While talking to her on the phone one night and telling her my worries about Whitney's future, Mom says to me, "Michelle, stop worrying about her future. She has 3 big brothers who are going to take care of her and make sure she's happy!" She also reminds me often that of all the people in the world that could've been chosen to be Whitney's mommy, I was the one that was picked and that is exactly what gets me through each day. Each day is looking brighter. Each smile is becoming easier. My life is good.
I will continue to update this blog as we find out more about Whit or as she progresses. Please continue to pray for our baby and our family and for all the doctors in our lives in Abilene and at Cook's in Ft. Worth. Thanks for being a part of our journey and welcome to Whitney's Journey!
