A Christmas Miracle!

(I can't figure out why Whit is cut off in the photo...I've uploaded 3 times and it looks fine)

We got our Christmas gift a little early this year. And, it was the BEST Christmas present anyone could ever hope for!!!

Whit had an appointment on Monday with her Neurologist. We were supposed to be told what was found on her MRI that was done the day she had her eye and ear surgery. I took her by myself because Jason had to work a double shift in Abilene. I was not looking forward to it because I sort of expected to be told that the cerebellum problem was no better and was just praying that nothing "new" was found on the scan.

The doctor came in and sat down on his chair looking at me. He asked how Whit was doing and I told him she was doing great, surpassing all our expectations, etc. He took a deep breath and began telling me that the MRI that was done on December 9th showed absolutely no evidence that ANYTHING was wrong with her cerebellum!!!!! He also said that a cyst she had at birth was no longer there and that there was NOTHING structurally wrong with her brain whatsoever!!!! I was in shock.

We had been told after the first MRI that the two parts of her cerebellum were not connected/communicating and that they never would. So, you can imagine how shocked her doctor obviously was....as were we! He just kept repeating to me, "Do you understand, there is nothing wrong with her brain?" I just started crying and smiling and kissing Whitney. I couldn't even believe it. It was very obvious that he couldn't believe it either. I don't think he ever gets to tell many people that their child's brain is perfectly NORMAL!!!

I am just so shocked still. I still can't believe it. I keep wanting to call the office and just ask the nurse to tell me one more time so I can hear it again! We are so thankful and feel so blessed. This was defnitely a case of Divine Intervention! There's no doubt.

Whitney had a great Christmas, as did her brothers and parents. We celebrated with my sister and her family in Flower Mound. Whitney got lots of toys and new bows and a beautiful bracelet! As you can see from her photos, her eyes are looking great and seem to be straight at this point. She's such a doll.

Surgery is finished!

Whitney is back home and is doing well.

She went in Monday for her pre-op appointments and we were pretty nervous at that point. They explained what would happen and how the procedures were performed which was scary. My main concern was the anesthesia. I was so worried about her getting too much or not enough and made myself sick worrying. However, I am so glad that we were at Cook's. They really know what they're doing with babies. All of the doctors were really nice and her Opthalmologist even brought her some gifts! He says that she looks like his granddaughter, so he is always talking about her.

The morning of surgery, we left my mom's house near Plano at about 5am and arrived at Cook's at 6am for surgery. Needless to say, I didn't sleep much the night before and was exhausted. Whitney did great. She didn't fuss or complain about not being able to eat. She was happy and pleasant. However, she did not like the drops they put in her eyes before surgery, but they gave her a special vanilla-flavored paci that made it all better! Jason, Gigi and I were able to stay with her until they took her back to the operating room. They did not stick any needles in her until she was asleep from breathing the gas in the OR. It was so hard to say goodbye and watch them take her away. I tried my best not to cry, but that didn't last long!

We were escorted to a waiting room with all the other parents of children having surgery that day. In a short amount of time, the room was full and it was a large room. We couldn't believe how many kids have surgery there every day. The waiting room was nice and had a glass ceiling where we could see the birds flying by. Jason could tell I was a nervous wreck and kept trying to comfort me. We waited for news. Whit's ENT doc visited us shortly after we arrived and told us that the tubes were in place in her ears and that he removed a great amount of fluid from both ears.

We got a phone call in the waiting room from a nurse saying that she was asleep and comfortable and they were starting the eye procedure. We waited for quite some time before her Opthalmologist came to tell us that he had finished and her eyes looked great. We were relieved that the surgery part was over, but knew she would still be a while because they were going to do her MRI while she was still asleep. This took a while. It was 10:30am when they finally called us back to the recovery room.

When we walked into the recovery room, they were wrapping her in a blanket and arranging her IV line. She was dressed in a cute little hospital gown ( we asked if we could keep it, but they said no!) She was just waking up and having a hard time opening her eyes. I could tell that her throat was sore from the tube because she was swallowing really weird. They told us to give her some Pedialyte in her bottle and she took the whole 2 ounces! So, we asked for another and she took about an ounce more. She was doing great. We tried to give her some Tylenol, but she was gagging on it and we decided to wait.

The Anesthesiologist came in after about an hour and asked a few questions, then told us we could take her home when we were ready. The nurse came in and took her IV out and we dressed her in her own clothes, then headed back to Gigi's house. The whole thing was uneventful and we are so happy that she did so well. She is doing great now with just some redness in her eyes and a bit of swelling. Her ears seem to be doing great too. We are using drops in both ears and eyes for the next week. We are so glad this is over. I can finally stop worrying.....for now!

Here are some BEFORE pics and a few AFTER:

Finally downloaded some photos!

Whitney is now 6 months old. I finally downloaded some recent pics we've taken. She had her first food this weekend. It was an okay experience. The poor baby can't swallow solids very well and the cereal just came right back through her nose. I hate cleft palates! I'll be so glad when she gets it fixed. Enjoy the pics!

Surgery set for December 9th

Whitney's surgery for her eyes and ears as well as her MRI will be on Tuesday, December 9th at Cook Children's in Fort Worth. They estimated that she would be "under" for about 3 hours. This obviously will be a hard time for me as it's the first time I've ever had a child put under anesthesia and I'm scared to death. Please keep praying for our little girl! I'll post with pictures after the surgery is complete. Thanks for keeping up with us.

Surgery in the near future :(

Whitney has seen her ENT doctor and her Opthalmologist since the last post. The ENT wants to put tubes in her ears to prevent recurrent ear infections. She has a lot of fluid behind both ears.

She also saw her eye doctor this weekend. He agrees that her right eye turns in. He wants to correct the strabismus. They will be operating on both eyes to allow them to straighten out and improve her vision. He believes that operating early will give her the best chance of full 20/20 vision in the future.

So, we are waiting for the scheduling dept. to call us and tell us when they will be doing the two surgeries. They are hoping to be able to do both together along with her MRI that she was supposed to be sedated for. I asked her plastic surgeon if he wanted to try and do her cleft surgery as well, but he still wants to wait until she's closer to a year old.

Whitney is doing well right now. She will have an eye drop that we will use once a day in her left eye. It will dilate that eye and cause blurry vision forcing her to use the "bad" eye and strengthening the muscle in that eye.

Whitney will be 6 months old on Saturday! I can't believe how fast time flies.

Update

Whitney had some testing done recently. Her Physical Therapist thought she noticed Whit staring a lot. She was concerned that she may be having absent seizures. We agreed that she was staring, so off to her Neurologist we went. They did an EEG and determined that her brain activity seems to be normal and no seizure activity was noted during the testing. This doesn't necessarily mean that she is not having seizures, it simply means that no seizures were noted during this test. We were relieved that they seemed to think her brain was functioning properly according to the waves shown on the test. They commented that there were no low points, which I assume means she is responsive to stimuli, etc. We will keep you updated as we know more. Her next Neurology appt. is set for December when she will have her MRI under sedation. For now, we are nervous about her appointment tomorrow with the ENT doctor in Fort Worth. They seem to think she needs tubes ASAP instead of waiting for her cleft repair. Poor baby. Here are some pictures from the testing, smiling at Daddy while waiting for the testing and from working with her Physical Therapist whom she adores.

Whitney has had a rough couple of weeks. She has had multiple ear infections and coughing, wheezing, drainage, etc. She has been on 4 different antibiotics, breathing treatments, and had 4 shots of Rocephin in the last month. She lost a few ounces while she was sick, but has gained it back now.

Her Pediatrician is concerned with the number of ear infections she's had and the fact that she continues to have fluid behind her right ear. He recommended that she see the ENT doctor at Cook's to discuss tube placement. So, we have an appointment in a few weeks to see what he has to say. Although I don't look forward to her being put under and having tubes placed, I feel like it would really help her to feel better. She also has developed this thing where she favors her left side. If you place her on her right side, she cries and immediately pulls herself to the left. I'm not sure if this is related to the ear or not. However, I'm anxious to see what the ENT doc thinks.

Her physical therapy is going well still. She still is not holding her head erect and has trouble on her tummy. She won't push up or lift her head while on her tummy yet. We are working hard to help facilitate her so that she can gain the strength she needs to do these things. Looking at Whit, you would think she is about 2 months old. She is tiny and her mannerisms and motor skills are characteristic of a much younger infant. People are shocked when I tell them she is 4 months old! However, we are proud of how far she's come. She loves to be held and for us to talk to her.

On a good note, she had her month checkup and is tipping the scales at 12 lbs, 4 oz! She is officially in the 25th percentile for her height and weight, so we are encouraged that she is growing at an almost-normal rate! She had her immunizations at her checkup and didn't even cry or make a sound. I think it's because the Rocephin shots were so painful that these were nothing in comparison :(

The boys are doing well. We've all had our round of the sickness that Whit had, but everybody is starting to feel better now. We've all had our flu shots, so we're just praying that keeps at least some of us well this season. Happy Fall!

Just wanted to share some photos we took this weekend of our little ones. I was actually able to catch Whit smiling :)

Whitney is 3 months old!!

She had her appointment with the Urologist at Cook's in FW. They did a very thorough ultrasound and a VCUG procedure. The findings weren't great. We were told that she has a pretty severe case of kidney reflux on the left side. He rated it a 4 on a scale of 1 to 5. She has been put on a daily antibiotic to help prevent kidney infections. As long as the antibiotic works to prevent infections, then she will just go back in a few months for a recheck to make sure it hasn't gotten worse. If she does, however, get an infection, then we will need to discuss the options for repairing the problem. We were told that they would need to either surgically repair it, which offers up to a 90% chance of resolving the problem, or they could try a catheter/ureter approach which has about an 80% chance of fixing it. We are hoping and praying that the antibiotic will do its job and we won't have to make that decision.

Whitney is smiling and cooing much more lately. She makes such great eye contact with us and she's immitating sounds that we make with the pitch/inflection of her coos! Her smiles are so pretty and she's such a delight. Her physical therapy is going well and her therapist is happy with her progress. She is gaining strength in her neck, but still not pushing up on her hands lying on her tummy. We are working on "ironing" her legs each day which will straighten them out. She keeps them drawn up like a newborn. Ironing them teaches her to relax and lengthen her legs. Don't worry, we don't use a real iron! We use our hands to apply light pressure and move from the hip to the foot 30 times on each leg once a day. She doesn't mind it.

We took a couple of pics of her at Cook's, but our computer had a virus and just now got fixed. I can't find the installation disc to connect the camera to the computer, so until I figure that issue out, I can't post those pics. We are also taking the kids to HSU this weekend to take some photos and I will hopefully have those up soon.

Check back for pics! :)

Whitney's Story

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!