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Thursday, June 27, 2013

Marlee's Heart

Today we had an appointment with a pediatric cardiologist at UAB.  I quickly updated him on all that was going on with our little sunshine and he wasted no time in starting an Echo cardiogram.  It's kind of like an ultrasound where he looks at the heart, aortas and surrounding areas.

Praise the Lord, he said the internal structure of Marlee's heart was perfect! I explained a little about what we were told in regards to her right subclavian artery and aortic arch so he started looking at the external structure. 

He said that Marlee possibly has a vascular ring. "A vascular ring occurs when the aorta (the large artery that carries oxygenated blood out of the heart) or its branches form a complete ring around the trachea (the tube that carries air to the lungs) and the esophagus (the tube that carries food to the stomach). (All of these structures are very close to one another in this crowded area of the chest.) This happens when certain parts of the aorta, which normally disappear during fetal development, persist abnormally." (The Children's Hospital of Philadelphia) You can go here to learn more.  It amazes me how some of the symptoms of a vascular ring are the same things Marlee has been dealing with. 

The cardiologists wants to talk to our ENT and also his surgical team to see how much of an intrusion is being placed on her esophagus and trachea and to see if they think surgery will be required to fix the problem.

So we wait to hear back from him. 

She has her 6 month check up tomorrow. Can't wait to hear what our pediatrician says. I am so so so thankful for our pediatrician! If he had not listened to my mommy "gut feelings" a few months ago, we might not have known any of this.  I am so very thankful he has been an advocate for her and will continue to be! I know not all pediatricians are like that.

Thank you again for praying today! Love you all!!

Love,

~A

Monday, June 24, 2013

Strength In The Struggle

The house is quiet, it's late, everyone is asleep and its just me and my thoughts.....well ok, I do have Friends reruns playing in the background but for the most part, it's quiet.  I'm thinking about this upcoming week and the message I heard at church yesterday morning.  It was for me.

We haven't been to church in a few weeks for various reasons and I was more than tempted to stay at home snuggled up in my bed. David had to work and frankly, the thought of getting myself and 5 kiddos ready for church was exhausting.  Being lazy would have been the easier thing to do, but I missed my church family. I missed hearing our pastor preach. I missed the worship time and the renewing of my heart from just being in the presence of the Lord.  And let me tell you, the evil one sure wasn't happy that I wanted to go to church.  He worked his hardest to defeat me through my children, but he did not win. I was determined. I prayed for strength, God granted my prayer and believe it or not, I was actually 10 minutes early to church. Now, I may have been finishing my makeup in the car but by golly, I was early! :-)

I got the kids to their class and little miss sunshine and I went into the auditorium. I found my seat and breathed a huge sigh of relief.  I was there. I made it.  I have done church with all the kids by myself before but I guess because of the way the morning had been going, it was a miracle I was there. God wanted me there.

We had sweet worship time and then a prayer request and prayer time. I, of course, briefly mentioned Marlee and her appointments this week along with others who shared things on their hearts. Our pastor looked at me and basically said, this sermon is for you.  I mean, I know he didn't prepare it specifically for me but I knew what he meant.  I love being part of a smaller church because it means a lot to me to not get lost in the crowds.....its sad to not even be noticed or cared that you left the church. I want to be a part of a church where the pastor actually knows your name. I've been there and done that with a larger church and no thank you.  Anyway, our pastor prayed a sweet prayer and started on his message.

He had us turn to Matthew chapter 6 vs 25-34.  The beginning of vs 25......."Therefore I tell you, do not worry about your life" and vs 34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble if its own."

Yes, I needed to hear this. I actually am familiar with these verses but they are ringing true for me right now.  This season of unsureness does come with a lot of anxiety and worry. But one thing remains true, God loves me and He wants what is best for me and what is best for Marlee.  You see, none of this has taken Him by surprise. He formed Marlee in that most secret place. He made her just the way He saw fit. If allowing her to be born, chromosome abnormalities and all, brings Him glory then it is worth it and I will choose to accept it and trust it. I may never understand, this side of heaven, why He has allowed this and that's ok. His ways are higher than my ways. He is the creator of all things. Who am I to question how or why He chooses to allow certain things to happen?  I'm just thankful for her life. Thankful for the joy she has brought my heart. Thankful for the many giggles and laughs we all have had because of her cuteness! Thankful for her sweet smiles and little coos she makes. I'm just so thankful.

I am trying not to worry, but I do have moments of weakness. Oddly enough, I do have a peace in my heart, but that doesn't mean there won't be times of uncertainty as to what is next.  I'm not sure right now where this will all lead or what the future holds in regards to her care,  but I do know who is in control of it all! He gives me the strength I need to deal with all of this. My prayer is that I will take this opportunity to continue to praise Him and trust Him with her life.  She has only been loaned to me. I just hope that I am doing all that God has called me to be and do as her mom.  I am blessed.

Today I ask for prayer for her lab work and lab technician and for everything to go smoothly. This past Friday, I drove to Children's South for her lab work. When I got there, the tech told me that there was one test they couldn't do there because after collection, it had to be run within 10-15 minutes and they didn't have the resources there to do it. I was going to have to go downtown. Ok, so I drove to Children's downtown and found the lab. Signed in and was called back quickly. The lab tech got everything ready, found a vein in her left arm and proceeded to stick her.  All of a sudden she "lost" the vein. She was moving the needle all around Marlee's arm searching for the vein and Marlee was screaming. :-(   My heart hurt so bad watching her go through that. The tech finally pulled the needle out and said she couldn't stick her again and she was going to find someone else. After a few minutes had passed and I was able to calm Marlee down, another lab tech walked in. She got to looking at the order for the blood work and told me that they couldn't do the fourth test because it was a send out and their send outs had already gone out for the weekend. Really? You mean to tell me Marlee just went through that for nothing? How come the other tech didn't catch that? Grrrrrrr!!!! I kept my cool because it wasn't her fault but still, I was aggravated.  Sooooo, I will be heading back downtown today for her lab work and for her to see the pediatric geneticist.  I would just like for it to go smoothly with minimal pain.

Thank you again for your prayers.  Hope you have a great day!

~A


UPDATE!!!

Thank you, thank you for your prayers!! The lab work couldn't have gone any better! The lady found Marlee's vein, stuck her, got the four vials of blood and was done. Marlee didn't cry one single bit! She didn't make one single sound!!! She just stared at the lady and sucked on her nuk nuk (paci). Praise The Lord for answering everyone's precious prayers!! I was amazed!! :)

Also, the appointment with the geneticist went well. She was very informative and helpful. She gave me a 20 page document detailing DiGeorge Syndrome and some of the appointments we will more than likely be dealing with in the future.  It's just so hard to tell right now how Marlee will be affected by this.  Thursday is the appointment with the pediatric cardiologists. Hoping all goes well there! :)

Saturday, June 22, 2013

Finally, Some Answers

First off, let me say thank you. Thank you from the bottom of my heart to each of you that have asked how Marlee is doing, how we are doing and how I am doing. Thank you for letting us know that she and us have been in your continual prayers. I have been so blessed by ALL of the support, especially from those people that I wouldn't have expected. It's been amazing to me to realize who truly cares and loves you when you are going through a storm.

To give you an update, I was beginning to wonder about Marlee's blood work from May 24th after her MRI. I had not heard anything and was beginning to think that I needed to call the neurologists, but when I got home from work this past Tuesday, he had left a message for us to call him back. After playing phone tag, I finally had him on the phone.

We said our "Hey's" and "How are you's" and I could tell in his voice that I was not going to hear what I wanted to hear. My heart and mind were racing and I was so nervous to hear what he had to say. What I wanted to hear was, "Amanda, Marlee's blood work came back fine and normal" but what I heard instead was "Amanda, we have gotten Marlee's blood work back and there are some concerning issues."

Our conversation in a nutshell was that Marlee had two chromosomes come back that were abnormal. He gave me each of the specific chromosome names but to easily explain it, she has abnormalities in the chromosome 17 and chromosome 22.

The chromosome 17, not much information out there in google~land, but he said it was an uncertain significance.  Basically the test couldn't see what the abnormality was but that the chromosome was different. The test recognized that there is something different about it.

The main area of concern is the chromosome 22. This is a rare abnormality. He said that Marlee has DiGeorge Syndrome. You can go here to read more about it.

From what I researched this week, each person has 2 sets of chromosome 22, one set from your mom and the other set from your dad. Each chromosome is made up of 500-800 genes. DiGeorge Syndrome is a deletion in one segment of the genes.

When I was reading the symptoms of DiGeorge Syndrome, I realized Marlee had definitely exhibited some of those symptoms. I remember saying to myself, "It's starting to make so much sense now".

I will tell you that DiGeorge Syndrome has a type of spectrum like autism does. Some of the major symptoms are a cleft palette and major heart defects. Marlee does not have those, so she might be considered to be on the lower end of the spectrum. She does have a problem with her subclavian artery (read previous post to learn more) but we won't know if there is anything else going on until we see a pediatric cardiologists.

As of right now, Marlee has to see her pediatrician, a pediatric geneticists, immunologists and a cardiologists, plus have major lab work done before her surgery on July 8th. All of those appointments are scheduled for this upcoming week.

I am assuming the geneticists will tell us more about the abnormalities in the chromosomes and if this was inherited or a sporadic event and also the severity of it. The immunologists will tell us if there is any problems with her immune system and the cardiologists will be looking at her heart. I know some of the lab work is also looking at how her immune system functions.   

I would encourage you to read the link I provided so you will know how to specifically pray. You will read about the challenges she might possibly face in the future, the numerous visits to different specialists she will most likely have to see and so on.

I'm not sure how I feel about all of this yet, as if I have a choice. But I will tell you that God is showing me how much He truly is in control of my little sunshine's life. From her conception (soooo not planned) to her prolapsed cord and emergency c-section (definitely not planned) to what all is going on now. He is in total control and has a very specific reason and purpose for her precious little life. Her sweet smile always lights up my heart even on the hard days. I truly am so blessed to be her mom.

Please continue to keep us in your prayers as we travel this journey in finding out what is wrong with our baby girl. I can feel them and appreciate them so very much!

In other news, Congratulations to my sister and brother in law on the birth of my first nephew, Caleb Jackson (CJ).  He is so adorable!

Trying out the pool!





Playing peek~a~boo after bath time. :)


 Loving on my new nephew!



 Cousins!


 Trying out my new "baby"suit! ;-)


"What is this thing on my head momma?"



Ain't nobody takin' my toes!!



 6 months old!!


Awww! And yes, that is how I found her....toes peeking out!



Trying rice cereal for the first time! This little stinker started pressing her lips together and wouldn't open her mouth. HAHA!



Matthew and Michael went to football camp a few weeks ago and loved it! Matthew won the "Best Pass" award for his age group on the first day!


Getting some CJ love!



Again, thanks for reading and praying for our family! :)



Sunday, June 2, 2013

Marlee's Journey ~ Part 2

Now that we had those test results back, it was time to move forward with something else. The neurologists told us that he wanted Marlee to have an MRI to scan her central nervous system. So, her brain and lower spinal area. The brain for obvious reasons, lower spinal area for a tumor. When Marlee was born, we were told she had a Sacral Dimple. For those that don't know what that is, "A sacral dimple or sacral pit is an indentation or little hole in the crease between the buttocks and the base of the tailbone. this dimple generally develops as the spinal column is forming inside the mother's womb. If the inner tissues of the neural tube that forms the spinal column become malformed during development, then the outside layer of tissue, including the skin, may not be flat or smooth. this could mean that the outside layer formed with some dimples in it, which have no effect on the inner layers. Or, there could be a malformation of the inner layers, which has no effect on the outer layers. So a dimple in the lower back along the spine may be ha harmless indentation in the skin, or it may be a sign of a defect in the lower tissue layers, that involves the spine and spinal chord."  They also told us when she was born, that upon an initial ultrasound, there showed to be a small cyst at the base of the dimple. We couldn't help but wonder if that cyst had possibly grown and might be causing the low muscle tone so that is why he was going to order her lower spinal area to be scanned.

Right before Easter, I took Marlee to our pediatrician because she was running a fever. Now, I'm not one of those moms that automatically runs to the doctor every time my kids have a sniffle or fever. I tend to give it a few days and let the body do what it was designed to do but because she was so little, I was worried. I also thought she had pink eye that wouldn't go away even with the "liquid gold" eye drops I was giving her. Come to find out she had a severe respiratory infection. While I was there I mentioned to the doctor that Marlee sometimes made this weird deep breathing sound. It's like she was struggling to breathe at times. She made the noise while she was in the room so he referred me to an ENT at Children's South. He told me that with her upcoming MRI, he wanted her to be checked out by the ENT just to make sure that her wind pipe was ok because if something was wrong with it, it could possibly collapse during the MRI. Great, just great. Now I was going to be worrying about something else.

We saw the ENT and he decided to scope her that day which means he ran a little black tube with a small camera attached at the end up her nose and down into her throat. It was weird to watch. He said the noise she was making was called "strider" and is caused because of a floppy airway.  There was that word again, floppy. I didn't like it.  After looking at her esophagus, he diagnosed her with Laryngomalacia. Per the ENT, your esophagus is supposed to be flat ( - ) but Marlee's is "U" shaped. There is also a flap that covers the opening of the esophagus and Marlee's flap has a little too much skin on it. He said that most babies outgrow the Laryngomalacia by 18 months but because she was "failing to thrive" (not gaining weight), she would need surgery to correct it. Reflux also aggravates the condition.  Basically, Marlee has been working so hard to eat because of the Laryngomalacia that she is burning up all of her calories trying to eat and what little calories she is getting, she re-fluxes back up. That is why she hasn't been gaining weight very well.

Our ENT's partner is part of an Aero Digestive team which consists of an ENT, a GI doctor and a pulmonary doctor. They were meeting the next morning so our ENT said he was going to present Marlee's case to them to see what they suggested. The GI doctor said he wanted to evaluate her first before any surgery. Back down to Children's I went. I'm beginning to get to know my way around that place a little too much. :-/

We saw the GI doctor and he suggested we change up her formula to get more calories (different kind but same amount of formula to less water) to see if she would gain some weight.  By this point, Marlee weighed 9lbs. So at 5 months old, she has only gained 2 lbs since she was born. He also said he wanted her to have an upper GI test done which is an x-ray of her anatomy.

I took her for the upper GI on Friday, May 17th and watched on a live x-ray them put the bottle in her mouth, her drink and watched the liquid literally go down into her stomach. It really was so neat to watch! They took lots of x-ray pics and then the last picture was of the liquid coming back up into her throat......reflux. I got her dressed and was standing outside the doctor's office about to leave when the x-ray tech called me back in the room. She said that the radiologists had already looked at the x-rays and wanted her to retake the x-ray pics of Marlee's esophagus. So back in the room we went, got her undressed again and then the radiologists came in to do the x-ray pics himself. He really focused in on her esophagus area. After he saw what he needed, he told me (in long medical terms) that Marlee has something pressing against her esophagus (an intrusion) and he wanted her to have a CT scan done. I mentioned to him that she was already scheduled for an MRI on May 24th and would it be possible for him to see what he needed to see from the MRI. He said yes and so he ordered her chest to be scanned as well. After he walked out, I asked the x-ray tech to explain to me in normal terms what was going on. She showed me Marlee's x-ray picture of her esophagus and she showed me where her esophagus is straight at the top and then bent in almost a "c" type shape and then straight at the bottom. So, straight, then curved, then straight again. It should be straight all the way down. :-(

We went back to the GI doctor on May 21st and Marlee had gained 8oz so she was 9lbs 8ozs. Still not where he would have liked her to be weight wise, so his nutritionist told us to give even more less water to the same amount of formula that we were already using.

On Friday, May 24th, David and I arrived at Children's Hospital to have her MRI performed.


Bless her heart, she was so hungry but she wasn't allowed to have anything to eat or drink because they were going to be putting her to sleep. I was so nervous. The nurse let me hold her up until she had to go back behind "the doors".  Of course, I started crying. That was my baby girl and the thought of her being put to sleep made me nervous. We couldn't wait to get her back in our arms.  The MRI took a few hours so David and I waited and waited. We both had said that we weren't going to eat or drink anything before her test if she couldn't have anything to eat or drink so when the nurse took her back, we went upstairs to grab something to eat. Let me just say....they think VERY highly of their sandwiches, chips and drinks. I can't imagine how much people who have to be there day in and day out with their loved ones spend on the food there. But, I digress. After what seemed like forever, we were told that we could go back and see her. She was awake! She was wide awake and taking some Pedialyte. We are sooo happy to see her and hold her and know that she was ok!

After the MRI, we had an appointment scheduled with her neurologist for him to give us the results of the MRI.  Praise the Lord, he did not see anything abnormal on the MRI at all. He said all the parts of the brain were there and everything looked normal. He also did not see any type of tethered spinal cord or any evidence of extra spinal fluid which would indicate some type of spina bifida. No cyst noted either!! God is so good! He also noticed a huge difference in her muscle tone compared to the last time he saw her. He couldn't believe how different she looked! When we saw him at the beginning of April, she would keep her legs drawn up and wouldn't put them down to stand on them. Not anymore!! He was amazed!! Also, both the MRI and neurology department weighed her on their different scales and both said she was a 10 pounder!!! We couldn't believe it!!

The neurologists said that now we would move into checking the blood to see if there were any genetic problems or chromosomal issues. She had blood drawn that day and we have not heard those results yet and are still waiting.

Now, the GI doctor looked at her MRI and noted something with the esophagus and talked to the ENT. The ENT wanted to see us and so we saw him this past Thursday, May 30th. He read the MRI results regarding her chest scan and said, in non medical terms, that basically Marlee has a subclavian artery that feeds her right arm that is coming off her heart on the wrong side and has grown between her trachea and esophagus. That is what is causing the intrusion or the bending on the back side of her trachea and the front side of her esophagus.  As of right now, her surgery to correct the Laryngomalacia is scheduled for July 8th. While they are in there correcting that, they will be videoing the procedure and looking more closely at the artery issue to see if a vascular team or cardiologists needs to be involved. The ENT told me that the cardiologists would be the one who would decide if that artery needed to be moved to the correct side which would involve them opening up her chest and moving the artery which would then cut off the blood flow to her right arm for a while. It would be like a type of major heart surgery. WOW!!!  It may be that as she grows, the artery will less likely push on the esophagus and she may not need to have a major surgery. I guess we will just wait and see what is said after the Supraglottoplasty in July.

Her boo boo's. :( This is where her IV was for the MRI.




We ask for your prayers that the blood work will come back normal, that the surgery in July will go well and that they won't have to do any type of heart surgery.

Thank you to all of you that have prayed,come to our house and prayed over us, given encouragement, offered to help in some way......we have been blessed so much with each of you in our lives!!

We love you!

~A


Saturday, June 1, 2013

Marlee's Journey ~ Part 1

Please excuse the length of the next few posts but it tells what all we have been going through these last few months. I haven't wanted to write about it until now because we simply have been waiting. I hope you will stay with it until the end. :-)

As my friend Lee said, "With all that happened in your life last year, it is only fitting the way Marlee was born".  I can laugh at that statement now because 2012 started with a bang and ended with a bang so David and I were really looking forward to a fresh new start in 2013. Looking forward to life settling down a bit and hopefully no surgeries or hospital visits. God definitely has other plans.

I can honestly say that His ways are higher than our ways and His plans are definitely not ours. It was not in MY plan to have a 5th child. My mind was closed to the idea of another child and I felt "complete" after Mason was born. I often told people when they asked "yes, we are definitely done!". Oh how God has a sense of humor. I know He laughed at me every time I gave that answer.

I love how God will use a decision you make to make you realize that He is in total control. Matthew and Michael both played fall ball this past fall. It was crazy! No seriously, it was! David and I would literally be in two different cities at the same time on the same night so we could support the boys at their games. It was like that almost every game. I was 8-9 months pregnant and constantly on the go. It was such an exhausting time. We made the decision to not allow the boys to play Spring ball because we would have a newborn thrown in the mix and we didn't want our life to be so hectic and crazy when Marlee got here. We needed a break. When the Spring season started, I began to wonder if we had made a mistake. I started seeing everyone's Facebook posts about their teams and games and all the fun they were having. I missed seeing all of my baseball buddies. We have made some great friends through baseball and to not be around all of them was sad for me. I am shy and probably come off as a snooty person at first but once I get comfortable around you then I'm pretty much a ball of laughter. :-) But, not being around our friends making tons of memories and sharing loads of laughs at the ballpark left me feeling very left out. Even being in a crowded room with some of these friends, I still felt out of place. I had to keep telling myself that we had made the right decision for our family. That decision was a huge blessing in disguise.

A few weeks after Marlee was born, I started noticing that the right side of her head looked bigger than the left side. It looked a little misshaped to me. David thought I was being paranoid a little but soon started noticing it too. It was almost as if the front right lobe was protruding out while the back left was protruding out and the front left lobe was smaller while the back right was a little flat. It freaked me out and I just knew she had a brain tumor or something.  Why is it that our minds automatically take us to the worst case scenario?

Anyway, Marlee was scheduled for her 8 week checkup and while our pediatrician was examining her he mentioned it to me first. I was so relieved that he had noticed it too. He told me that he wanted us to go for an x-ray and ultrasound to make sure everything was ok. We went to Children's South and had the tests done that day. The radiologists said that everything looked good. Our pediatrician wasn't convinced and neither was I, so he talked to a neurosurgeon friend of his and he recommended that we see someone at the Cranio-Facial Clinic at Children's downtown to make sure they weren't missing anything.

While we were looking into that problem, our pediatrician was also concerned because Marlee was not gaining good weight. For her to be 8 weeks old and only weighing 7lbs 7ozs, that was bothersome. She was 7lbs when she was born.  I had been pumping breast milk and giving it to her in a bottle (will explain that later) and so we tried all kinds of different ways to get her to gain weight. She has severe reflux so we thought that was the reason for her not gaining weight. All the different things we tried was just not helping.

I took her to the Cranio-Facial Clinic appointment and the Dr there (I did NOT care for his "bedside manner") basically told me that she had a positional issue with her head and that it would probably correct itself over time. What this Dr had to say was reported back to my pediatrician but he was still not convinced.

At Marlee's 4 month checkup she was still not gaining weight like she should and I also had mentioned to him that I did not think she had very good head control. She was kind of floppy. He was also still concerned about the shape of her head. He noted her lack of muscle tone and said that he wanted us to see a pediatric neurologists. While we were waiting for that appointment, I came across a story on Facebook called "Charlotte's Story" and began following it. It was about a baby named Charlotte that had been diagnosed with SMA (Spinal Muscular Atrophy) on the same day that Marlee was born. SMA is basically a genetic disease of the muscles. Most babies who are diagnosed with SMA don't make it past their first birthday. :-(  Her story was heartbreaking. As I was reading her symptoms, I noticed that Marlee had some of the same symptoms they were describing. Low muscle tone, floppiness, lack of good head control and some other things. My heart sank.

We went to the neurology appointment and he too was very concerned about her low weight and lack of good muscle tone. He performed a few tests on her and decided that she needed to be checked for SMA. I started to cry in his office. He knew, at that point, that I knew what SMA was and he handed me several tissues and told me that he wouldn't be a good doctor if he didn't check for this first. If the results came back as SMA then that would be the diagnosis and there was nothing else they would be able to do. He told us that the results would have to be sent to Baylor University and it could be up to two weeks before we heard anything.

David and I were silent for a good portion of the ride home. Our minds were racing. We didn't know what to think.  How would we get through the next two weeks wondering if our baby girl had this horrible disease? How would we deal with that? How would we explain it to the kids? There were many times in that waiting period that I burst into tears. David and I tortured ourselves by scouring the internet researching SMA and reading countless stories of families affected by SMA. We would go from high to low. We tried not to tell the kids about it but ended up telling them because they didn't understand why I was crying so much. Why I didn't want to put Marlee down.....just hold her all the time.

During that time I kept telling myself that God was in control and that I trusted Him with her life. But the haunting thoughts and the what ifs and the how will we handle this or that kept creeping into my mind. My mind had already taken me to places that I didn't want it to go. I know David was going through the same thing and having the same thoughts as I was. He is a private person when it comes to his deep emotions...unless you tick him off (lol) so for him to text me and tell me that it was hard for him to work because his mind was constantly on Marlee was a big deal. I knew it was affecting him in the same way. I knew he was worried. One day at the beginning of April, he was working from home and I was sitting in the living room floor folding clothes with my thoughts on Marlee and all of a sudden David asked me "Would we bury her with her blanket?". Such an innocent question, but I immediately burst into hard tears and told him not to ask me that. Not to ask me that out loud because I had already thought of that same question and I didn't know what I would do. I felt bad for him because I knew he felt bad for asking the question and I knew he wasn't asking me out of ugliness or anything like that. I knew that his mind had gone to that place too. As much as we were saying we trusted God, in our hearts we couldn't help but think the worst. The days waiting and waiting for the results were so hard emotionally. That was all we could think about. It consumed us. I would hear a song and burst onto tears. We were on the edge.

During that week, I wrote this little poem. Please forgive the elementaryness of it, but it is what was on my heart that week.

                                    Marlee's Prayer

              I sit here holding my baby girl so tight,
              Knowing in my heart that she is precious in Your sight,

             You know the plans You have for her, no matter what they be,
             Lord give me Your strength when it's just too hard to see,

             You knitted her together in that special place,
              Those blue eyes and dimple nose on her beautiful little face,

             Her long slender fingers and curled up little toes,
             A smile that lights up my heart, even full of woes,

             Your love for her is more than I can understand,
              Lord help me to accept what is already in Your plan,

             Give me guidance and wisdom and help me to see,
             That trusting in You is the only way to be,

             For You alone are worthy and all my praise I give,
             Safely in the palm of Your hands, she will always live,

             Thank you for her little life and the joy she brings each day,
             May she always know how much I love her, in Your name I pray.

             I love you Marlee Kate!

             xoxo, Mama



A week later, I was sitting at work holding Marlee when my cell phone began to ring. I immediately recognized the number as coming from the neurologists office at Children's.  I was so nervous to answer the call. I answered and to my surprise, it was the neurologists. I had fully expected it to be his nurse telling us that the results were in and that the Dr wanted to meet with us. He had previously told us that he would not give us the results over the phone whether they were good or bad, so you can imagine my surprise when I realized it was actually him calling me. He then told me that he had the test results back and that he was going to go ahead and tell me that she tested negative for SMA!! I was so happy, I held her tight and started to cry. I kept thanking the Lord over and over! He told us that since she tested negative, the next step would be to check her central nervous system by doing an MRI on her brain and lower spinal area. As David said, we can handle whatever it may be as long as it wasn't SMA. I hung up with the doctor and immediately told my sweet coworker friend, Wendy. I saw tears of joy in her eyes and proceeded to also tell my boss who had stopped by our room. She told all of my other coworkers for me and we shared lots of hugs and tears of joy! I then called David and you could hear the huge sigh of relief he gave. We were just so happy and thankful to God! 




Friday, May 31, 2013

Our Little Marlee Kate

I just wanted to sit down and write. Write down my thoughts and feelings. Write about different things on my heart. Things that our family has been going through the last few months. Some of it may seem jumbled and not make any sense and I know at times it may not be very eloquent but that's ok.  Some of our family and precious friends know what we have been going through and have been so helpful to faithfully pray, offer encouragement, pray over us, bring meals, offer to help with the kids and so on. My heart is full and so very appreciative of everything. We love you all so much!

I mentioned in my last post some of the things we went through last year and how we still had one more major thing to go through for 2012. As briefly as I can, I want to share my sweet baby girls birth story. :)

I was diagnosed with gestational diabetes from the very beginning of my pregnancy and almost from the start was on insulin at night. Other than normal pregnancy symptoms and the gd, I had a fairly uneventful pregnancy. Watching my diet closely, I lost weight and really only gained 4 lbs throughout the whole 9 months. Because of the gestational diabetes my Dr. didn't want me to go over 39 weeks for fear of the baby being too big. All my other babies were born at 39 weeks with no problems, so I was totally comfortable when it came time for the day Marlee was to be born.

David and I arrived at the hospital very early in the morning and got settled into my room. My sweet nurse came in and hooked me up with no problems and started me on the pitocin drip. One of my Drs partners came in and tried to break my water but couldn't, so she ordered me to stay on the drip for a little longer to see if that would get little miss to drop some and get the delivery process going. After a little while, my Dr. came in and also tried to break my water. I'm not going to lie, it felt like she was crammer jamming her hand up in my lady business and it hurt....hurt like all get out!! After what seemed like an eternity, she was finally able to break my water and I thought to myself.....ok, here we go. Contractions will start to get harder and harder and I'll wait till I'm at about 5cm and then ask for my epidural. At this point I was still at 1 to 1 1/2 cm so I had a long way to go. The nurse stayed with me constantly checking on things, watching the monitor etc. After a little while she decided to check me and I had only dilated from 1 1/2 cm to 2 cm.  We were both stumped. At this point, I should have already dilated to a 3 or 4. I was tolerating the contractions with my breathing and somehow my nurse misunderstood me and went ahead and ordered my epidural. I was thrown off because I wasn't really ready for it but went ahead and said, "why not? go ahead".  It was a blessing in disguise.  In the past, the nurses have always made David leave the room while the anesthesiologist put in the epidural but this time they said he could stay. He got one look at that needle and the guy putting it in my back and David had to walk out of the room. It made him so lightheaded and this was with him *sitting* in a chair.

The epidural was in and I settled back to rest before I had to deliver. My dad and step mom were there in the room and we were talking and laughing. I noticed that my right side was completely numb but I could still feel my left side. It was definitely different from the four previous epidurals I had had with the other babies. I mentioned it to my nurse and she assured me that it would eventually fix itself. She even had me roll over to my left side so gravity would pull it to the left side. She was constantly watching the monitor for my contractions and baby girls heartbeat. After laying like that for a while, she decided to check me to see how much I had progressed. My dad and step mom went out of the room. My nurse was in the middle of checking me and her face turned to a serious worried look. She pushed a button and literally within seconds, 10 nurses rushed in the room. Just sitting here typing this has me in tears because I remember it as if it were yesterday.

She looked at one of the other nurses and said, "I think she has a prolapsed chord and I want you to check to make sure what I am feeling",  so she took her hand out from down there and the other nurse inserted hers, felt around and said definitely yes. I didn't know what that meant and so I asked what was going on. They told me that I was going to have to have an emergency C-section. At that point my Dr. rushed in and told me the same thing. I have NEVER in my life seen her so serious. I started to cry and they told me that it would be ok but they had to do this because her umbilical chord was starting to come out before she was and her head was laying on it which was cutting off her air and blood supply.  I was terrified and immediately started praying that God would protect our baby girl. Within minutes I was being rolled into the OR with the second nurse laying at me feet (I was holding onto her legs) and her hand still inserted holding up Marlee's head. Everyone was rushing around and I could see them and could hear their serious tone. They let David get scrubbed in and he was by my side. I kept telling them that I could feel my left side. I could feel them prepping my stomach for the incision. I could feel them tugging at my skin and them starting to cut and I was yelling "Ow,ow,ow, I can feel it!". The next thing I knew, everything went white and silent. I couldn't see anything or hear anyone.

I remember praying in my head for God to please protect Marlee and my Dr's hands. And then my mind went crazy. All I saw was white everywhere and my mind was jumping from corner to corner over and over as fast as it could. Crazy as it sounds, it was almost like I was moving back and forth in my mind at the speed of light. Unless you have been through it, there is no way to fully describe the intensity of what I was experiencing. I remember feeling scared because I had never experienced anything like that before. I didn't know if I was dying or not. It seemed like I was in that state for forever. At some point, my eyes started to open. Everything was kinda blurry and I remember looking over to my left and I saw David sitting there texting on his phone. I remember saying "Just go ahead and suck the fat out" (LOL) and then I went back out. Then I remember being cold and being rolled down a hallway to another room and was back out.  I don't know how long I was out but woke up to my family in my room looking at me. I was glad to be somewhat awake and to see people's faces that I knew and loved.

I didn't know if my baby girl was ok or not. I missed her birth, missed seeing her for the first time as she came out.....I missed everything. :-( After talking about what happened with David, he told me that he had never seen my Dr. be so in charge and so commanding and serious. He told me that I was laying there the whole time with my eyes and mouth wide open and my Dr asked the anesthesiologist if I was breathing. He didn't answer. She then yelled "Is she breathing?".  I must have looked like death. Obviously I was breathing but it must have worried her.

We asked the anesthesiologist what it was that he gave me to knock me out and he said Ketamine. Per the Dr, that is a form of LSD. Well, let me tell you, I don't see how druggies take that stuff. It was crazy and I did not like how it made me feel and how it made my mind act.

The emergency C-section has been the most traumatic event of my life so far. BUT God is good and heard my prayers. After coming to, I got to see my sweet little surprise baby. She was good. She was precious. She was a blessing! She was 7lbs of pure sweetness!!





Wednesday, April 3, 2013

Long Winded for the Sake of Journaling

I really can't believe it has been almost a year since my last post. Has life really been that busy? Ummm, yes.  Little did I know that my last sentence in my last post would be so loaded. Let me recap...."I can't wait to see what God has in store for us next."  Wow. Did I really say that?  Looking back, I think I actually prayed sometime at the beginning of the year, "Jesus, bring the rain".  Don't ask me why because I don't know why.  Without sounding like I am complaining, let me give you a rundown of our year last year. Believe me, we were sooo ready to welcome in the year 2013.

 Last January, I was diagnosed with chronic heart palpitations. Scary in itself due to an episode I had while the kids were out for Christmas break. 

In February, I had to have an emergency appendectomy and then less than a week later, my mom had a stroke which was brought on because of a heart attack a few days before.  She had zero signs of what was happening to her until she called me late one night to tell me that she wasn't feeling well. She ended up having open heart surgery, an extended stay in the hospital for weeks and then came to my house to recover.

Sometime during all of that (in March and April), our suburban started acting up. It was in and out of the shop so many times that I had a stack.....a STACK of repair papers from the dealership. They would fix one thing and then something else would go wrong. At one point, they were so lost as to what to do, they had to call the main engineer for GM to ask his advice as to what he suggested they do.  We were so irritated because they would keep our suburban for weeks at a time and it wasn't fun having to get rental car after rental car.  It was like that all through the summer and then one day on October, we were driving down the road and the stupid thing just shut off and then started back up, the locks started going crazy and overall it was acting weird. We finally had had enough so we took it to a dealership that day and traded it in.

In April, I found out I was pregnant. To be honest, I was not happy. I was so mad at David and honestly, probably a little mad at God too. In my mind, we were done. I had closed my mind to the possibility of ever having another baby and I truly felt that our family was complete. We had just gotten Pudgie out of pull-ups and for the first time in 10 years, we were not having to buy diapers and wipes.  David had finally agreed to have "the" surgery and we were discussing when he would do that.   I couldn't stop crying but realized that there was this little precious life inside of me that was a blessing and that needed me.  I forgave David....lol....and accepted the fact that we were going to have 5...FIVE....children. I immediately had to start the gestational diabetes testing and diet which included me having to check my sugar four times a day every day. My fasting numbers continued to be high so I had to go on insulin pretty quickly in my pregnancy. I was not happy about that. Every night for nine months, I gave myself a shot.  :-/

In May, my sister got married to a wonderful guy and within a few months found out she was expecting their first child. Sadly, that precious little life didn't make it and it was hard. Hard to see my twin go through something that I had never been through. I couldn't emotionally understand what she was going through but could only offer love and support. But God was and is good and they are expecting a little boy in June of this year. :) I can't wait to meet my nephew!

Our little Pudgie broke his wrist in Sept/Oct. and had to wear a full length arm cast for about 8 weeks. He did ok with it but I was sure glad when he got it off. Funny thing is....that full length arm cast didn't slow him down one bit. LOL!

The day before Thanksgiving I had to take Boogs to the emergency room. Let me just tell you how my day went that day.  The kids were out of school for Thanksgiving break and we all (my very pregnant self and 4 kids) had to be at St. Vincents hospital (the Orthopedist office is located there) at 7:45a that morning to have Pudgie's cast taken off. I live about 45min away from that office so I had to leave super early due to traffic. We got there, waited, got the cast off, and headed to Aldi so I could get some last minute Thanksgiving dinner items.  We got home, carried the groceries upstairs and I was putting them away while the kids were outside playing. All of a sudden I heard terrifying screaming coming from outside. I will never forget it. It kept on so I immediately went on the back deck where I was met by Boogs with one hand over his eye and the other eye wide opened and he was screaming bloody murder while blood was gushing everywhere. Inside I was totally freaking out but so that I wouldn't scare the kids, I calmly asked him what had happened. Because his hand was over his eye, I didn't know if his eye had been poked out or what. There was sooo much blood. I really thought his eye was gone or something. He told me that Pudgie had thrown a marshmallow shooter gun, made of pvc pipe, at him and it had hit his eye. I brought him inside, ready to see an eyeball-less sight, but thank the Lord, the cut was on his eyebrow.  Who knew there could be so much blood?  I saw meat. I know, gross. But it was there and I was home alone with the kids trying not to freak out so I got a wash cloth to clean it up some so I could see exactly what we were dealing with.  It was deep. I called our pediatricians office and of course, no one was there that could put in some stitches so they had me head back downtown to Children's Hospital and go to the ER. Back downtown? I had seriously just gotten back from being downtown. Ugh. But, it had to be done so I loaded up my very pregnant self and the kids again and we headed that way. David is in a management position at his job and was on a conference call so he couldn't leave. I told him it was ok and that I would handle it. My sister was at work and my mom was out of town (I think...I can't remember #oldage) so I had to go alone.  I know this sounds terrible, but I didn't even think to call my dad and step mom. They could have gone with me, but at that point, I was just trying to stay calm for the kids and for myself.  On the way down there, I was freaking out internally because I didn't know where I was supposed to go, how was I going to do this by myself and God knew what I needed at that point. It was a TOTAL GOD THING. My mom called and said that my aunt was going to meet me at the ER. My aunt? All my aunt's live in Georgia.....how was that going to happen? Unbeknownst to me, my aunt Carol just so "happened" to be traveling through downtown Birmingham at that exact moment on her way to Mississippi to see family. She told my mom that she would meet me there and stay with me and the kids until we left. Isn't she the bestest?? Thank the Lord, she was waiting outside the ER and was able to help me get the kids in.  We were there for several hours and she stayed with the other kids while I was in the back with Boogs getting his stitches. Thank you Aunt Carol for being there!

A few days later, David got the call that his grandmother had passed away. :(

The first week in December,  Pudgie had to have his tonsils out. His recovery was rough that next week but the pain eventually subsided and he is doing much better now!

A week later, haha, I know.....really? David started telling me that his side was hurting and that it was getting progressively worse. He went on in to work that day but soon left and came home, which is NOT like him. He is not a weak man, let me tell you. Not long after we got married, he had to get a wisdom tooth pulled. He did it on a local anesthesia and went back to work after the procedure, even though he was in major pain. He's crazy. HA!  So anyway, when he got home from work he went straight to bed. Sometime during the night he woke up to use the restroom and could barely move because of the pain. Because I had just been through this months earlier, I told him it sounded like his appendix and he needed to go the ER. It was in the middle of the night and I was trying to get in touch with my sister so she could come sit with the kids but he was in so much pain that he said he had to go and he drove HIMSELF to the ER.  I was able to finally get in touch with my sister and she came over to be with the kids and I left, not far behind him and headed to meet him at the ER.  He was already in a room when I got there and after a CT Scan, it was confirmed that he had appendicitis and he was going to be admitted and have it out the next day. Now what are the odds of a husband and wife BOTH having to have their appendix's out in the same year? Don't you know our insurance company loved us? I was a week out from being induced and sat in that ER on a backless Dr's chair during the middle of the night....I was so uncomfortable and tired but God gave me the strength to get through it and to stay calm because at this point, I felt so defeated and constantly asked "What more could we go through?". I just couldn't handle anything else.

Little did I know, at that point, that I/we would have to go through one more big ordeal before the year was over....to be told soon.

Looking back over the year, there was much more that went on that I won't carry on about, but seriously, we had something pretty major happen e.v.e.r.y. single month of last year.  My closest friends can testify to that.

Well, it's late and I've rambled on enough....plus it's 1:11am and I do have to get up in a few hours to get the kids ready for school and myself ready for work.  Sooo, with that I'll say goodnight.  If you are still reading, thanks.

Love,

~A