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
09.28.10

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
10.20.10

"Sleeping Beauty" in the NICU

10.24.10

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