Two Years.....Wait What?

Two years ago today, our lives changed forever. Two years ago today, my life changed forever. It changed in so many ways....I wouldn't even know where to start.  We are all different in ways. Of course the obvious....a little grayer, a little heavier, a little older....A LOT more loud, busy and crazy! Ha! Despite my opposition to change, it can be good.

When we arrived at the hospital that morning, I never realized the events of that day would never be forgotten and believe me, I can give you every detail of that day. Sadly, I can't say that about the days my other four were born.  But, I can still remember it as if it were today.  The joyous feeling we had to the terrified realization that our baby girl might not make it if certain steps weren't taken immediately to ensure her safety. The trauma of her birth and the things that I was experiencing through all of that won't ever be forgotten. It won't be forgotten that I totally missed her being born or hearing her cry for the first time or hearing the Dr's immediate assessment of my girl, but God knew what He was doing and so that's what I hold onto.

When my sweet girl turned 3 months old, I felt in my heart something wasn't right.  I remember telling an acquaintance at a mutual friends birthday party that I felt we would be told sometime that year that something was wrong with my girl.  Little did I know how true that feeling was.  After talking to our pediatrician and him also noting some issues, his quick response started us on the journey of Marlee's diagnosis. 

After numerous numerous numerous trips to Children's Hospital, seeing many specialists and having numerous blood tests and tests like MRI's, upper GI's, nasals scopes, swallow studies, sleep studies, echo-cardiograms, ultrasounds, xrays, and the list goes on and on...we had a main diagnosis of 2q11.2 Deletion Syndrome or DiGeorge Syndrome. She was also diagnosed with a subclavian artery that comes off the wrong side of her heart, and a vascular ring which was repaired through surgery at 8 months old. She was also diagnosed with Laryngomalacia, Torticollis, and reflux.  The first year of her life was filled with many fears, tears and questions. Here are some pictures of *some* of the things she went through including tests, surgery, physical therapy and a few extras.  Some of these I have shared on facebook, but not most of them. I hold these close to my heart as they are so very precious to me. They show her struggles but oh how I can look back now and see how far she has come. :)

 

And some more......

 

Her first little year of life was hard. But this second year has been good. Still hard, but good. Praise the Lord, she has been released from most of her specialists because she has done so well. She was just released from physical therapy last week and is currently still in occupational therapy for brachial plexus palsy in her left shoulder.  She is also receiving special instruction through the Arc of Shelby County.  You can go here,  http://youtu.be/Y2qI941HuOY , to see a United Way interview I did for the Arc about Marlee.  She does have a speech delay and will more than likely have to start speech therapy in the new year.  I long to hear her say "Momma" and "Daddy" but I know it will come.

Happy 2nd Birthday sweet sunshine!! We love you more than you know!!

~A

A Momma's Heart

As some of you know, 2013 was a challenging year for our family with Marlee being diagnosed with 22q11.2 Deletion Syndrome/DiGeorge Syndrome.

I don't know if you can understand this, but it took me a while to be ok with her diagnosis.  All of the driving back and forth to Children's Hospital and all the different specialists she was having to see left me in a fog.  I was always waiting for more bad news.  Fear gripped my heart.  I also questioned God as to why. Why, after four relatively healthy children, did our fifth have to have something wrong? Did I do something? I didn't feel as though I was being punished but I felt like, why me? I had a lot of emotions running rampant and I just couldn't figure out what to do or how to handle them.  I was very sensitive to things....things that shouldn't have bothered me but they did.  I felt sad. I felt very alone. I felt like no one could understand this momma's heart.  I would go through times where I felt like people didn't understand and they didn't care to understand.  But God did.  During those times that I was seeking happiness through others, God lovingly and consistently asked me if He was enough.  Was He enough in my life?  Did I trust Him? Did I trust Him with Marlee's life? Did I trust Him with my family's life?  Did I trust Him with the future?  I guess He made me look at myself and realize that sadly, I didn't. 

He has been working on me though.  He is showing me that He IS enough. I really don't know how to explain it, but at this moment in my life, I can honestly say that God has given me a complete peace about her precious little life.  He made her just the way she is. He and He alone is in control of every aspect of her life. He has taught me that over and over this last year. He is constantly teaching me how much He loves me through her adorable smile, her contagious little laugh and her precious spirit.  I may not ever know why He chose to bless us this way and yes, I look at her diagnosis as a blessing. This girl has my heart in so many ways, y'all! I can definitely say that it has opened up my eyes at how I took the health of my other children for granted. It has softened my heart to those that do have special needs children.  Her diagnosis has taught me a little about myself too. I am stronger than I ever thought I could be. And it's NOT my strength, but God's strength through me. He is the one who has given me the strength and stamina to go through all that she has gone through.  It is His grace that has gotten me through the scary times. I am so thankful for the hope in Him!

So now, this momma is on a mission! My hope is that others would become more aware of DiGeorge Syndrome! I have been praying that God would show me how to make others aware. That He would open doors for His glory to shine through!  I know He has big things in store for Marlee and for us. I know without a shadow of a doubt that her life and her diagnosis is for a specific reason. I may not know now what that is, but I just know in my heart........

My loves!!

 ~A

 

What A Day!

I am in awe at how this day has turned out!! I didn't get much sleep last night, for obvious reasons plus we had a nice thunder boomer around 245a-300a, so I maybe got three hours of sleep. The 3:15a alarm wasn't too welcoming but I had to get up and get ready for the day.

David and I headed out about 430a so we could stop by Wally World to pick up a few things I would need for the hospital stay.  We got to Children's Hospital around 5:45a and sat in the dark waiting room of the cardiac floor.  Promptly at 6:00a the paperwork lady signed on and I got busy filling out more paperwork.

Not long after, they called us back to the pre-surgery room and we got her dressed in her little hospital gown and waited. Lots of medical staff came and talked to us about what to expect and so on.  Our pastor, Jason, and the hospital staff person from my moms church, Mr. Drew, came to pray over Marlee and us. It was such a sweet prayer time. I was nervous about the surgery but it was almost like a peaceful nervous, if that makes sense. Then it was time.....7:15a.

David and I gave her lots of kisses and then the anesthesiologist took her from me.  I started to cry and kept praying in my mind for God to please protect her.   We went back out to the waiting area where Jason and Mr. Drew were sitting. We chatted for a while and then around 8:00a the receptionists informed us that they had started the procedure. More tears and prayers.

Before we knew it, we were being asked to go into the consultation room to hear from the dr.  He came in and told us that the surgery went well and she was doing well. He had told me the day before at the pre-op exam that in all his years of doing this type of surgery, he had only seen a few vascular rings like Marlee's.

It seemed like forever before we got to see her in the CVICU. When we walked in she was awake but groggy. Bless her heart! Of course, I got teary eyed! I had to know she was ok and she was!

The nurses and nurse practitioners were amazed that she came out of the operating room with NO breathing tube! They all said it was rare for that to happen. She also was able to take a bottle and tolerated that.  She had a chest tube in for drainage and thank the Lord, she did not have much at all! Everyone that we talked to today was amazed at how well she was doing.  She did so well that they decided to move her into the step down unit! They said that was almost never done within the same day! The Lord heard EVERYONE'S prayers and I just want to say thank you to each of you who lifted us all and especially Marlee up in prayer!

We love you!!

Love,

~A

We Have A Date

 Marlee had a follow up appointment with the neurologists this past Friday and when they weighed her, she was 12lbs and 7ozs!! I couldn't believe it. I am so thankful she is gaining some weight! She can still wear 3-6 months clothes but she will get there!!! The neurologists was pleased with Marlee's muscle tone but did tell us that she may always have low muscle tone (hypotonia) due to the DiGeorge Syndrome. She also has a 25% or greater chance to have a seizure. So, that is something else we will have to watch for.  She will roll all over the floor and can sit up with help but not sitting on her own completely, but we are working on it!!

 I finally heard from the surgeons office this past Friday.  This coming Thursday, August 1st, Marlee will have her vascular ring surgery at Children's Hospital.  David and I are already so nervous. It is a relatively low risk surgery with success but it's always easier to say low risk when talking about someone else's child.  To you, it is high risk.

At this point, they will not have to open up her chest. They will make an incision on her right upper side and cut the ring.  I have been told that it could possibly be a 5-7 day stay in the hospital but hopefully all will go well and she will be able to come home in 2-3 days. I will be staying with her at night while David is home taking care of the other kids.

I'm so ready for her to be ok.  At times, I ask why.  Why is she going to have to go through all of this? Why her? At times, I burst into tears.  Sometimes I just don't know what to think.  I tell you what though, she is the sweetest baby! I am so very thankful that she is in my life. Because of the DiGeorge Syndrome, we will forever be opened up to a world of things that we never would have thought, but God made Marlee just the way she is......and that makes her so very precious in His sight!

I am truly honored and blessed to be her mom. She has my heart tightly wrapped around that little finger!

 

 

Thank you for your continual prayers!

Love, 

~A

Change of Plans

I wanted to give an update on what's going on with Marlee. She is doing great! So sweet and precious! I have really been feeling blessed the last few days. Blessed that she is in my life and that I get to be her mom. My heart is so full!

Tuesday, we met with the GI Dr and his nutritionist.  They were both very well pleased with her weight gain and have allowed us to go up on her bottle ounces!

I also heard from the cardiologist yesterday. He met with his surgical team which consisted of other pediatric cardiologists and heart surgeons and they all agreed that Marlee needed to have surgery for the vascular ring. They also said they felt like the surgery (Supraglottoplasty) that was scheduled for this coming Monday, July 8th, should be cancelled.  Sometimes with vascular ring patients, the vascular ring surgery will help to clear up the Laryngomalacia.  They are hoping that will be the case with Marlee. So, I should hear from the cardiologist office this coming up week to schedule the new surgery.

Thank you so much for each of you that continue to keep Marlee in your prayers! Thank you for praying for guidance and wisdom for the Dr's involved in her care.  Love you all!

Love,

~A

Check Up and More Good News

This past Friday, I took Marlee for her 6 month checkup.  This little bundle of sweetness now weighs 11lbs and 7ozs and is 24 inches long!  I'm so excited that she is finally gaining some weight. She is still not where she should be for a 6 month old but she's getting there. I do believe we are going to have to go up to a size 2 diaper! The 1's are getting a little too small. :) That makes this momma's heart happy! 

We also got the results from the lab work she had done last Monday.  With DiGeorge Syndrome, patients can have low levels of calcium and high levels of phosphorus in the blood.  They can also have issues regarding the maturing of T-Cells and poor immune function. Praise the Lord, all of her blood work came back normal which is HUGE! I don't know if it could change in the future, but for right now.....I'll take it!

As of now, she is scheduled to have surgery for next Monday. I do know that the cardiologists is wanting to talk to the ENT so we are just waiting to find out if they will still do the surgery or post pone it.  Please pray for guidance and wisdom between the coordination of the two Drs.  I don't want Marlee going through anything that she doesn't need to go through.

I recently started introducing some solid food to Marlee. So far, she has tried rice cereal, peas and carrots and seems to like all of them!

I love this pic!! Love the way Marlee is looking at me! Sweet little Eli loves Marlee and couldn't wait to hold her!

Precious!!

 Getting big!

She's looking at me like "Momma....seriously?" LOL!

There's that sweet smile!! :)

Yesterday I was able to attend the 43rd birthday celebration of my home church that I grew up in and the church that my mom and brother and his family still attend.  It was so good seeing old friends and meeting new people who have been praying for Marlee. 

I can't thank each and every one of you enough for your continual prayers!! We appreciate it more than you know!!

Love,

~A