Saturday, July 30, 2011

Featured Child~ Cash

"God is bigger than any statistic!"

On December 23, 2008 my husband, myself and my mom all huddled inside the Ultrasound Techs office to find out the sex of our baby. After hearing that we would be buying blue paint we were also told that there appeared to be some kind of abnormality with the baby's heart. We were sent to St. Louis Children's Hospital the first week of the new year and were told that they did not *think* there was actually anything wrong, but asked us to come back after a month so they could look again. We continued going up every four weeks until I was 32 weeks pregnant. At that appointment we were told that they were confident there was nothing wrong with our little one. The doctors all agreed that the baby's heart was growing in the left side of his chest and that he had nothing actually physically wrong with him. We were given the clear to have him at our local hospital. A week later, I received a call from the Head of Cardiology at STLCH who asked us to come back in for an appointment with a Doctor who had recently retired. She came in as a favor to the HoC and we are so incredibly thankful that she did because she immediatly diagnosed our son with CDH. We were swept away and given a tour of the NICU, held a meeting with the Surgeon that would be treating our child after birth and who also sent us into further emotional turmoil with words like ECMO, 50% Survival Rate and Indefinite NICU stay.

On May 2nd, 2009 at 1:58 AM the most perfect and beautiful creature I have ever laid eyes on came into this world. The clearest memory I have of that night is hearing Cash cry after we were told he probably would not be able to. He was immediately transported next door to St Louis Children's Hospital where he remained for 6 days until his Surgeon decided he was stable enough for his CDH repair. They were able to go in laproscopically and replace his colon, spleen, stomach and intestine and suture the hole closed. He was in recovery after less than 4 hours.


He remained stable until 3 weeks when he started developing SVT's, which were treated with medication.  At 3.5 weeks old my husband and I were able to hold our baby for the first time and at 6 weeks we were able to bring him home. Thank you God!

Cash was cleared from appointments every 3 months when he was 6 months old. At his First year check-up he was taken off all medications. At his 2nd year check up we were told he did not have to come back to see the Cardiologist, but unfortunately his chest xrays did show a small reherniation of his colon. In June of this year, he had his second repair and excessive amounts of scar tissue removed. He spent one night in the hospital and we came home the next day. Two weeks ago, he was once again given the all clear.

No parent should know what it is like to even have to face losing a child and my heart breaks every single time I hear of another CDH baby earning their wings. When I hear of someones pregnancy I pray they never have to know what its like to decorate a nursery and not know if it will be used or to know what it feels like to sit and cry and not  want to go to your baby shower because who knows if you will even be able to hold your child. I thank God for the blessings he has given us through our little guy and I pray for an end to CDH everyday. Cash's CDH experience has been such a journey. I still sit and bawl my eyes out sometimes because of how fresh in my mind his struggles are. I am so thankful for some of the amazing people and groups I've met along the way and I look forward to watching Cash grow and seeing his amazing, bright life unfold. 

~Lerin- Cash's Mom

Monday, July 18, 2011

Featured Child~ Rylee Mae

Rylee Mae East was born September 22, 2010 weighing 5 lbs 1 oz and 17 1/2 inches long.

Our story:

God is not a God of worry or fear...

We were thrilled to find out beginning of February of 2010 that we were expecting our first addition to our family...   Little did I know that this would be a real challenging pregnancy (not only lots of sickness and no cravings).

21 weeks we found out we are having a ♥GIRL♥ :):):)

24 weeks, we had a detailed ultrasound since when we found out the sex at 21 weeks, the main technician wasn't there. So, we had it at 24 weeks to make sure our baby was growing the way she should, etc. Well, we learned her heart was on the right instead of left. They were calling it Situs Inversus (if this was the case, then she would have been perfectly fine with no complications -- just a strange little incident and no problems with her heart). Of course finding this out, I was completely shocked and very upset.

We went to UAB here in Birmingham, AL to see specialists almost a week later and they were calling it Diaphragmatic Hernia which is basically bad news for her (you can google it to see what it says). Basically they were saying part of her diaphragm is not developed and she didn't have a left lung so they were thinking another organ (possibly liver) was pushing up in her chest walls causing her heart to move to the right.

When we went back to UAB almost 2 weeks later to see more specialists (9 doctors and assistants in the room, not including us -- which was really overwhelming and scary), we learned that she could have either Congenital Cystic Adenomatoid Malformation, Pulmonary Sequestration, or still a form of Diaphragmatic Hernia and little did I know (from the pediatric surgeon, cardiologist, etc) that my baby probably wouldn't have survived. Everyone else knew that but me (I'm thankful I didn't REALLY know when I had my suspicions because I would have been more stressed and more sick on my stomach than what I have been for 2 weeks in between doctor visits -- which has been a lot). I NEVER want to think of that possibility, but we're living in reality. I was told I am extremely high risk and can't travel anywhere other than around town that started before my 3rd trimester :( -- when someone tells you "can't" do something, you automatically want to do it! This has been challenging, but not the end of the world obviously. I just get lonely by myself during the day while my amazing husband works. But, it's for the best!

She has her left lung now (blessing) and her diaphragm is there completely (another blessing), but has some type of unknown mass on it (hence maybe the 2 names above). I will have to deliver her at UAB (University of Alabama B'ham Hospital) and they will transport her to Children's Hospital. They will run tests on her, etc. and depending on how big the mass on her lung (as they are calling it) turns out to be then they might can wait until she's 3 or 6 months old before surgery. If not, then they will do surgery after she's born. We will go through surgery to remove this mass that's not meant to be there (only pushing her heart sort of towards the right, but more in center this time). By removing the mass, we wouldn't be stressed to knowing if it could be malignant (which the surgeon said could happen later on). Better news from before, but we're definitely not in the clear just yet. She can't come pre-term or can't come pass my due date. If I hit 39 weeks and she hasn't come yet, then they are inducing me and they would rather me have her vaginally (another scary process for me). She's my everything and always will be no matter what. I'm praying and trying to make it positive for us all, especially our baby.

Another UAB visit on August 11, 2010 changed again (for the 4th time). Every appointment we had changed completely -- God is totally in control of our lives and especially our baby's life (his love overpowers our love for her and this is our blessing). Her stomach is actually pushing up into her chest walls causing her heart to push over to the center of her chest. With this information, she more than likely has Diaphragmatic Hernia which we did not want to hear, but it's not as "bad" as it could be and we are praying/ hopeful it's fixable with surgery -- which now she will probably have to have either be right after she's born, a few hours, or a day later (we won't leave the hospital without her having surgery). In the next few weeks, I'll have to start steroid shots just in case she decides she wants to come "early".

All my plans during this pregnancy have changed (not by choice). I am very hopeful for a healthy beautiful baby girl at the end of this pregnancy. I am trying my best not to "worry" or have "fear"... I'm leaning more on God to help me with my anxiety, worries, fears, and all the unknowns. I'll be 32 weeks starting this coming Thursday (August 19, 2010) and we are just waiting and relaxing for the arrival of our sweet baby girl :)

"God is not a God of worry or fear" and I'm thankful for all the wonderful prayers and blessings so far. More prayers are appreciated as this journey really hasn't even begun yet and I feel like this year will be one of the hardest years I will have to face. If I can do this, then ANYONE can face anything at any given time. I am by far, the one person who hasn't had much struggle in life... nor have I been in a hospital, had an IV, had blood taken a lot, etc. (I'm not such a big fan of "PAIN"). I'm learning as I go :)

[This is just an insight of our life in 2010 -- not ALL the details]

After a long difficult "1st" pregnancy (from sickness each day, no traveling, and not knowing all the "unknowns" with our baby girl), my little Rylee Mae East was born on September 22, 2010 at 11:29am. She weighed 5 pounds 1 ounce and 17 1/2 inches long.

On September 21, 2010 (just 3 days after my baby shower) my water broke at 11pm (I was 36 weeks and 6 days). My original due date was October 14, 2010 (Rylee decided to come about 3 weeks and 1 day early -- my little preemie girl). I always knew I was going to get an epidural (scared out of my mind about any type of PAIN). Come to my surprise (after the fact), the epidural stopped working at 7 cm then shortly after, I was 10 cm (go time) and let me emphasize "I felt EVERYTHING" -- I was terrified of this happening even after we found out we were pregnant at 4 weeks (first thought that ran through my mind was, "oh gosh... how am I going to get through labor")! I suppose God knew what he was doing when the epidural didn't last or my body didn't take all of it (however you want to look at it) because I was not "worried" about what was going to happen to our precious baby girl after she was was born. I was more concerned with the 'pain' and just wanted her to come out. Watching pregnancy shows on TLC may not have been the best idea for me. Good thing is that I only pushed for an hour before she arrived (seemed a bit longer to me). I will have to admit now -- the labor/ delivery experience wasn't as "bad" as what I anticipated, even with the crazy epidural experience.

"Baby Steps"

My Birthday, before surgery
♥ 09.22.10 ♥

Surgery day

Rylee had surgery 6 days after she was born on September 28, 2010 -- she had the Diaphragmatic Hernia that we didn't want to hear. This meant that the surgeon had to remove her small intestine, large intestine, stomach, and spleen from her chest back to the correct areas in her body. Her liver was the only organ that was not in her chest (before she was born, we were told her liver was the only organ in her chest -- ironic how her liver was the ONLY organ not in her chest. Good thing her liver wasn't in the chest with her other organs because the liver is the last organ to move up and we were blessed to hear that it didn't for her sake). Her heart should move back over more to the left side over time. She has both her lungs (her left lung will be smaller than her right one the rest of her life, but at least she has two working lungs and most babies with this condition do not). My Rylee is such a little fighter/ feisty girl :) I wonder who's attitude she has? :)   We are thankful she seems to have my attitude and this is what is keeping her strong during all this :)

Rylee came off her breathing tube about a week or so after her surgery (being on it since she was born) and that's when I held her for the first time, literally (no one can understand my feelings at that time -- joyful, elated, nervous, etc). She graduated to a crib and definitely took "baby steps" through her stay in the NICU at Children's Hospital of Alabama (Birmingham, AL). Our main obstacle by being in the NICU has been the "feeding process". Never did I expect her to have to "learn" to suck, swallow, and breathe (not all at the same time) and to understand that she needs milk to nourish her little body. Took her awhile to grasp the concept, but now she's becoming "hungry" as we continue to feed at least every 3 hours, if not before.

Recovering in the NICU

"Sleeping Beauty" in the NICU

After a little over a month in the NICU, it's 'Home Sweet Home' on Wednesday (October 27, 2010). She finally got to meet her big bro (Reese -- our dog). It's so nice to be home with our little blessing. No words can express how much we are thankful for and how blessed we are with family and friends during this year in 2010. Rylee's surgeon (Dr Scott Anderson) is very special to us and we will be forever thankful for him. He actually has been with Children's Hospital of Alabama for about a month before he worked with us. He came from Shand's Children's Hospital in Gainesville, FL. Anyone who knows me knows that I don't like many "Gators" (>>>---FSU-> all the wayyyy). But, he is ONE of the few "Gators" I will admire! With all the doctor appointments Rylee will have to go to during her life, I am thankful she has wonderful health professionals that is willing to take time to care for our family.

Yes, I definitely thought over and over during my entire pregnancy (from February 2010 to September 2010) -- "why is this happening to me/ us"?? Of course, this doesn't help ease my mind by any means. We realized we should put all our trust in God! This is and was God's intention for Rylee since the day of my birth (almost 29 years ago). I HAD to overcome most of my "worries" and just deal with the situation (when you are faced with life situations, it's harder not to really "worry"). The power of prayer is what we focused on. Without God's love, I wouldn't have survived this year...

We will be going through another obstacle during this Flu Season (she's on oxygen and monitors from the hospital: little does everyone really understand what we are still going through at home. We can't take her anywhere in the house except stay in our living room where we have things set up for her since the machines are taking over our life right now -- I guess our "living room" serves it's purpose...  couches, tv, and my baby. We also can't take her anywhere but her doctor appointments, but I wouldn't get her out much now anyway since we'll be reaching the Winter months). But, we can get through the Winter months if we can get through her stay in the hospital over a month. My husband has been my rock through my pregnancy and after. Without him, I would probably have more meltdowns that what I've experienced. He's going to be the best daddy in the world!! :)

We continue to take "baby steps", but it's for the best for our precious little Rylee! I can't wait to see what her personality will be like or who she'll look like more, but I have a feeling she'll be a strong and independent little person, like she's been so far -- this is the beginning of her life journey! Never did I imagine that I was a strong person myself -- I am stronger than I ever thought possible. Every "baby step" we make is a new milestone we've conquered. Thank you God for showing us the meaning of "true love" ♥

~Allison- Rylee's Mommy

Wednesday, July 6, 2011

Featured Child~ Seth


This is Seth's story. Let me take you back to March 2, 2010. Our youngest daughter's first birthday. I could no longer ignore the signs, and took a home pregnancy test. When it was positive, I have to admit, that both my husband and I felt an immense amount of apprehension. We had two children already, a 2 1/2 year old girl, and a 1 year old girl. Both who had their own issues and concerns. Once I did the math, I was even more concerned. This would be 3 children in just over 3 years. How, as a mom, was I going to handle it? It took me many weeks to get excited. I finally started buying baby clothes, in hope that it would help me build my excitement. It worked, by 12 weeks, I simply couldn't wait to see our baby. When I went for my 12 week neonatal appointment, my Doctor couldn't find the baby's heartbeat, so he sent me to get an ultrasound done, to make sure everything was ok. The ultrasound tech found baby's heartbeat and sent me on my way.

At 16 weeks, I had an ultrasound done on my ovaries due to ongoing pain was I was having. They quickly checked baby, and let me see, but it was too early for the measurements. I missed the next ultrasound since my regular Doctor was on 6 weeks of holidays, and didn't get back until I was 23 weeks. Our youngest daughter had an appointment with genetics at BC Children's hospital that summer, so when I was about 6 months pregnant, we drove the 1600km to Vancouver. While we had our meeting with genetics, the Doctor suggested that I get an ultrasound done, to rule out my daughters condition. So we scheduled an appointment for the next morning. That afternoon, we had a 3d ultrasound done, to see our baby, and find out the sex. We discovered that we were having a boy! We were so excited. We got up the next morning, July 16, 2010, and went in for our ultrasound. We honestly didn't suspect anything was wrong, until the Doctor told us there was, because we were there specifically for an in depth diagnostic ultrasound. When the doctor came in, and said that there was something wrong, a buzzing started in my ears. I was having a hard time processing what he was saying. There were too many facts and statistics that he was telling us. Trying to lighten to mood, he asked what we did "When we weren't sitting there trying to pretend we weren't upset" that’s when the buzzing stopped, and I started understanding. My perfect baby, was sick. Very sick. We were given the statistics for BC Children’s/Women’s hospital, which was 80% chance of survival if we ruled out chromosomal abnormalities.

We were scheduled to leave Vancouver the next day, but we had to delay our departure for an appointment on Monday for an amniocentesis which, though a difficult decision, we decided was best. We also had a non stress test, and an appointment with MFM (maternal/fetal medicine) since I would have to deliver at BC Children’s/Woman’s hospital. Then a fetal echocardiogram on Tuesday. We could leave Wednesday after the initial results from the amniocentesis came back. The amniocentesis came back showing that his chromosomes were 'normal' and he was definitely male. They told me that they would email me when we had to be back to wait for the baby to come. We left, feeling like the ground had been ripped out from under our feet. Our girls now said routinely "Is Mommy sad?"

When we got home, we started fundraising. We decided that since the girls were so young, that they would come with me, and that my mom would take a leave of absence from work, to help me. My husband would stay back until just before baby came, and then he would fly down for 2 weeks before going back to work. This meant that we needed to raise enough money to cover my mom's wages, and extra living costs. It was hard to talk about. Every time I thought about my baby I started crying. After the first couple of weeks back at home, I got upset, I said to myself, and my son "We will get through this! You WILL be fine! You will be strong and stubborn and fight, because there is no other option!" I refused to allow myself to even think about the statistics. We were scheduled for our first round of appointments on September 22, 2010. So we left on September 20 (4 days before our oldest daughters 3 birthday). After 2 days of travelling we got to the Easter Seal house in Vancouver. We started to settle into our small room. Our prenatal appointments were every week. I would have an ultrasound, a non stress test, and then MFM. Each appointment was also followed by blood work, since my blood pressure was high every time I had an appointment. I met with a Neonatologists, to better understand what would happen once the baby was born. When I wasn't at the hospital for that one day a week, we just tried to stay busy. We played tourists right up till I had the baby. I was scheduled for a c-section, due to 2 previous, for October 20. My husband was scheduled to fly in on October 15, to give the girls a couple of days to get used to Daddy again, and to prepare them for Mommy being in the hospital. On October 6, I had a set of appointments, I would be 37 weeks the next day. I was anxious hitting this milestone, since I had gone into labor with our youngest daughter at 37 weeks. I got everyone to do an extra thorough check. I had the doctor check my cervix. Every one said that they were pretty sure that I would make it to the scheduled c-section. Thinking that I had covered my bases, we took the girls swimming. That evening, I was tired, so I told my mom that I was going to go to bed early. I climbed into bed at about 7:50 that evening, and I jumped back out just before 8pm when my water broke. I cannot even explain the panic that set in. I knew that my husband was going to miss the birth, and that terrified me. I didn't know if I would have a baby the next day. I was nearly hysterical. My husband got to arranging an early flight. My mom called my cousin to come and stay with the girls. I got to the hospital, and they hooked me up to all the monitors. Seth was born at 1:32 am October 7, 2010 exactly 3 weeks before his due date. He gave 2 week cries before they intubated him.


After I was released from recovery, I was taken to a room. They told me that someone would come and get me, when I was allowed to see Seth. I laid there, trying to sleep, but every time someone walked the halls I jolted awake, hoping it was someone coming to take me to see him. At 7:30 I finally called the NICU, and the nurse told me to give them a half hour for shift change, and to come on down. Just as I was getting out of bed, and into a wheelchair, my husband walked in so we both went to see our son. It was difficult to see him, he was fighting the respirator. We stayed for about half an hour, before I had to go back to my room for breakfast and a rest. When we went to see him again, they had given him a drug to paralyze his muscles, so that he couldn't fight the respirator anymore. His blood pressure was low, so they gave him a medication to help with that. They were also doing the first of many echocardiograms on his heart. The Doctors were quite concerned about the pulmonary hypertension that he was struggling with. After they took him off the drug that was keeping him paralyzed, they kept him sedated with another. They were also trying a few different ways to help decrease the hypertension. By day 9 (October 15, the day Daddy was supposed to arrive), they felt that he had stabilized enough for surgery. We went and saw him in the morning. They had shaved half his head, and inserted a PICC line. We talked to him, and the Doctors. We then watched them wheel him away. They told us that they would have him for about 4 hours. 8 hours later, they brought him back. They had repaired the CDH with a Gortex patch about the size of a Canadian toonie. During his surgery, they discovered that he had his bowels, part of his kidney, part of his spleen, and part of his liver all in his chest cavity. His post surgery x-ray showed that he had about 1/4 lung on the left side, and about 3/4 lung on the right. He was kept sedated for a few days, but he wasn't receiving any addition oxygen. He was on 'room air'. He continued to improve. He was moved out of his private room, into the nursery where he received 2/1 care by a nurse. He was extubated on day 14 (October 20, the day of his scheduled c-section) and my husband heard him cry for the first time. He did not receive any oxygen. He had his first meal of 3 ml's of breast milk the next day. We were moved again, to a nursery where he received 3/1 care after an echocardiogram showed that his hypertension had resolved itself. He continued improving. His PICC line failed and was removed. IV's were inserted for his medication. We got to full feeds by NG tube on October 31. He drank his first full bottle a few days later. He was completely off all medications on November 7. We were discharged on day 42(November 17). He was exactly 6 weeks old. The Doctors and nurses in the NICU were completely floored by his case. The early days they were talking about ECMO, and then he was discharged at 6 weeks with no oxygen, no medications, no feeding problems, no reflux.

Seth is a true miracle. He is now nearly 9 months old and he is showing no delays or developmental concerns. He is just a normal healthy boy with an incredible story! We saw genetics again, for Seth, and they wanted to get the complete picture of his chromosomes. I only got the results back yesterday. They had found a small duplication on the long arm of chromosome 20. Now we have to see if my husband or I have the same duplication. If neither of us do, then this may be the cause of his CDH.

Seth 2

I have to say that the hardest part for me, was feeling like I had to choose between my girls and my son, and watching them all struggle. Seth with his health, and the girls with the whole experience. We still have monthly Doctor’s appointments, and we are still careful not to be around people who are sick, but we are beginning to just live a normal life again. CDH has changed MY life forever! I hope that it doesn't change my children's.

~Jess- Seth’s Mommy