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

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

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! :)