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