Brantley's Story - Meme's Perspective

Last week I shared Brantley's story written by Tallan.  Today, I'm sharing Brantley's story written by me. 

Brantley’s Story – Meme’s Perspective

This is Brantley’s story from my perspective, but the story begins in 2007 when I first found out I would be a grandmother.  Ever since Jessica and Rick got married in 2003, I’ve looked forward to grandchildren so when I found out in early 2007 that would happen later in the year, I was thrilled.  I will never forget arriving at the hospital just in time to see Rick entering the nursery and watching as he bathed Phoebe for the first time.  I saw her face and my heart melted.

I was a little stunned to find out that I would become grandmother again just 9 months later and my granddaughters would only be 18 months apart.  My own kids are 9 years apart so I had no idea what I would do with two babies so close in age.  Yet, I saw Sophie’s face and again, my heart melted.  They get to visit our house about once a month and I was a little nervous about keeping them, I’ll be honest.  But I totally adore my little granddaughters and would do anything for them. 

I was equally thrilled when Jacob and Tallan told me I would be a grandmother for the third time.  In April 2011, I found out my third grandchild would be my first grandson.  I was so excited about having a little boy around again.  We also found out about this time that Brantley would have a cleft lip.  No biggie, surgery could fix that.  But after his birth on June 29, 2011, his cleft lip quickly became the least of our worries. 

After his birth, he was taken to the well-baby nursery.  He had been there for quite a while before we realized he was there.  No one had told us he had been born yet.  The blinds in the nursery were closed but we were all peeking in as best we could.  I could tell they were still suctioning him and I thought that was a little odd.  I’ve never been so scared in my life when, all of a sudden, the nurse wrapped him in a blanket and whisked him out of the nursery.  We were finally told he was having problems with his lungs and they moved him to NICU.  Sometime in the wee hours of the next morning we were told that he may have to be transferred somewhere else where they have a special machine that would help his lungs do what they are supposed to do. 

Within 24 hours of his birth, he was airlifted from the NICU at Tupelo to the PICU at LeBonheur in Memphis where he was put on that special machine, ECMO.  We left the hospital late that night and checked into a hotel to get some rest, but after just a few hours we received a phone call from Jacob to tell us that Brantley may not live.  I will never forget the fear I felt and the fear expressed on Tallan’s face.  When you have a child and they hurt or they are sick, you want to do everything in your power to make it better for them.  There was nothing I could do; there was nothing any of us could do for him.  We could not hold Brantley or touch him anywhere except for the top of his head.  All day, each time I was in his room, I would rub his head and cry.  Every time I looked at him hooked up to that huge and scary machine, I cried. 

But thank God he lived!  If my memory is correct, we were told he might be on the ECMO for 2 weeks but he was taken off after 6 days.  We still didn’t know why the ECMO was necessary for him at that point.  We did know he had Pulmonary Hypertension and Pneumothorax but not why he was having those problems.  Eventually we were told he has part of his 4^th Chromosome missing, a pretty large chunk actually.  He’s missing 4q 13.1 – 22.1 and that is quite rare.  His case is only the 5^th in the world.  In the world!  He has Polymicrogyria, Hydrocephalus and tonic spasms also.  He had (and continues to have) trouble swallowing and could not get enough nutrition through a bottle.  He was fed through a NG tube while in the hospital but he came home from the hospital with a G-tube in his tummy.  In addition to the G-tube placement surgery, he had surgery to insert a shunt to help drain the fluid from his brain and he had surgery to repair his lip.  We all hated that surgery because by then we all had fallen in love with his cleft lip, but we knew the surgery was necessary.  He will need surgery to repair a hole in his heart unless it closes up on its own and he will need surgery on the muscles of his eyes. 

With each diagnosis he was given, I felt like I had been punched in the stomach.  I would have to wrap my mind around that diagnosis, research it and learn all I could only to have the doctors come in and punch me again.  The doctors and nurses at LeBonheur were wonderful though.  They kept us informed and took time to explain things to us. 

I grieved for the little boy Brantley would not be.  I was angry, very angry.  It seemed so unfair that he would have to fight to just breathe.  I wanted him to be healthy and happy and run around and play with his cousins.  It took a while to accept the fact that he would not do those things, or at least not in the time frame that a healthy baby would.  None of these facts have ever diminished my love for Brantley.  I adore him just as much as I adore Phoebe and Sophie

I look forward to the day that Brantley cuts his first tooth, when he can sit up on his own, when he crawls, and when he walks.  All in his time though!  In the meantime, I rejoice over each small victory he has.  Just like with Phoebe and Sophie, when I look in his face and when he smiles and laughs, my heart melts.  To me, that is the sweetest sound in the world – hearing my grandchildren laugh or seeing them smile; just knowing they are happy makes me happy. 

I recall one of the doctors at LeBonheur telling us that Brantley will write his own story.  I don’t know what Brantley’s life will hold, only God knows that.  What I do know is that he is a joy and delight and I will do everything in my power to make sure he is happy.  I will do my part to love on him and make sure that he knows he is loved!

 

 

 

Brantley's story

Here is Brantley's story written by Tallan. 

June 29, 2011 started out just like any other day for a woman who was going in to have her first child. I was scared and nervous and had absolutely no idea what to expect. All I knew is that I couldn't wait to get my hands on him and hold him and do all of the other Motherly bonding things that you get to do when you have a child. What I didn't know was that our experience was going to be nothing like that.

 

I had my little miracle, Brantley, at 7:01pm that same day. As soon as he was born I knew something was wrong. The doctor checked his palate to see that it was intact and nothing was wrong with it. (We had found out months earlier that Brantley would be born with a cleft lip, we thought that would be all he would have to go through.) After that, nurses and doctors started rushing in before I could even ask what was wrong. They took him to the side and began doing things to try to help him breathe.

 

One of the nurses came to me and told me that our son wasn't breathing very good and they were going to take him to the Nicu. She let me hold him but only for just a minute. I couldn't understand that something that small and innocent already was having problems and he wasn't even an hour old. When the nurse took him from my arms, I felt my heart drop and sink deep down into my stomach. I just knew this couldn't be good.

 

They took him away after that and I was moved to my regular room. We sat and waited till early in the morning for news, that wasn't anything what we wanted to hear. The doctor told us that he was born with pneumothorax or a collapsed lung, and that he also had pulmonary hypertension which was abnormally high blood pressure in the lungs. They had put a call in to Lebonheur to see if they would accept an emergency helicopter transport.

While we waited on that, the doctors let us see him in the Nicu. I was not at all prepared for what I saw.

 

When my husband, Jacob and I walked in the room, our precious little boy was laying there arms out, hooked up to what seemed like hundreds of different things. I was very overwhelmed. I was not expecting that at all. It still hadn't sunk in just how sick our little boy was. He was on a ventilator to help him breathe, under a vent, under lights, cords going this way and that way. It was too much, "Why my son?" that's all I could think.

 

He was flown to Lebonheur the day after he was born. Once there, the doctors went right to work in the Picu. We had doctors in and out of the waiting room talking to us, telling us what they were going to do next and as soon as they had some results they would let us know. We were hopeful each time the doctors came out, hoping for just the slightest bit of good news. Things just kept getting worse.

In the early morning hours of Brantley's first night at Lebonheur we were told what no parent ever wants to hear. The doctors came in this time and told us to get the family together because they were going to put him on ECMO, a machine that oxygenates your blood through tubing in the machine and then back into your body in other words,life support. They told us that ECMO was a very serious thing I remember the doctor telling us "Your baby is as sick as a person can possibly be." I thought those words were piercing, the doctor only went on to tell us that they couldn't say if our baby would live or die. That is when it really hit me that my son, my precious little baby, was in fact very very sick.

 

He was on Ecmo for 6 days. While on Ecmo, they also put chest tubes in on both sides to help him breathe more comfortably and to suction out the fluid and air that had formed around his heart and lungs. He even hemorrhaged some while on Ecmo and one of the doctors said "It was like walking a tight rope"..."we cant say what will happen next" Hundreds of test were ran to see what all was going on with our precious baby. We even had to give blood to for genetics purposes. It was absolutely one of the worst things a parent could ever go through and still not knowing if your baby will live.

 

Once he came off Ecmo, we may not have noticed then, but looking back that's when things started to SLOWLY progress. He started coming off the sedation medicines they had him on and we saw movement and his eyes started opening more. After a few days we heard him cry for the first time. I felt a bit of relief hearing that precious sound come out of him. I finally got to hold him again and Jacob got to hold him for the first time. We made the best of it even though our hearts were hurting to just have our baby home and healthy.

 

We were still terrified with not having any idea what was going on. The doctors told us all they knew and were so helpful with information if we didn't know what something meant. But going through something so traumatic it was like a train was going by when they were talking or when we read something it was like it was in another language. We just couldn't comprehend why this was happening to our son.

 

Brantley started seeing a number of different doctors at the hospital. Neurology came and after many different test we found out that he had polymicrogyria which was a developmental malformation of the brain. This can cause many different things such as seizures, developmental delays, speech and swallowing problems and even paralysis all depending on the severity.

 

He also seen genetics. Even more test were ran here. After about a month we found out that Brantley has a partial 4q chromosome deletion. These symptoms included growth deficiency,varying degrees of mental retardation,malformation of the skull,face,hands, and feet, heart defects and many more things again depending on the severity.

 

Brantley seen many more doctors who told us more information about his conditions. It seemed like it was never going to end. "I didn't even realize there was a doctor for that?" Is one thing i remember saying just about each time we seen someone new.

 

A little over a month had passed and Brantley got to move to the Nicu at Lebonheur which we were told was better than where we were but still serious. Once there we started trying to feed him. He took to a paci very well at first and I was so excited. Then with the bottle he done okay at first then would start to choke. So it was decided until further notice he would be strictly Ng tube fed. After many test it was discovered that he had poor swallowing muscles from having the polymicrogyria and he was choking on the milk causing him to aspirate a little bit into his lungs. Doctors told us to be prepared that he may need a g-tube.

 

Time passed...slowly. But while it did we found out all the information we could about our little miracle. Brantley's case was so unique that there are only 3 other cases in the world that can be compared to his. And none of them are exactly the same. We knew he was special but didn't realize just how special of a little boy God had sent us.

 

September came and was probably the best month we had since being there. On September 1, after much consideration the doctors decided it would be best to insert a gtube in Brantley's tummy so he would be sure to get the right amount of nutrition. This was his first surgery. He done great and recovered amazingly. Finally, after a nearly 3 month stay we got to come home on September 12, 2011.

 

We were home 2 days and then taking back to LeBonheur by ambulance. Brantley started having seizures. We spent 2 more nights in the hospital. Brantley was put on medicine to control his seizures and we were sent home again. Once home we got on the best routine we could and just went with it.

He was in and out of the hospital with sickness or with us just being paranoid, most of the time we were right and he was sick. His immune system was just so weak and young. Plus he was on oxygen also and that dried his nose out and made him sound a hundred times worse.

 

After a few months home he was diagnosed with hydrocephalus, fluid that builds up inside the skull causing the brain to swell and making the head abnormally large. We were told he would need a shunt placed to help drain the fluids and stop the brain from swelling. In April 2012 he had his second surgery for the shunt placement.

 

He also seen an eye specialist that told us he is going to have to undergo eye surgery before or around the age of 2. He needs eye muscle surgery to help strengthen them and make them straight. He is 19mo old now and we have not had the surgery yet. His left eye is not strong enough for the surgery yet so he has to wear a patch over his eye for 1 to 2 hours a day. Hopefully soon we can get this surgery out of the way.

 

He also had his cleft lip repair in October of 2012. Making a total of 3 surgerys so far. The surgery went great and his lip looks amazing! It only took one surgery because his was not bad at all. I have to admit I do miss his little spit bubbles going up into the side of his cleft it was too cute, but he looks like such a big boy now.

 

Today, Brantley is a happy 19 month old little boy. He doesn't sit up on his own,walk or talk yet but we are slowly working on all of that. He sees speech and physical therapy every other week. We do home exercises with him and see him progressing at his own pace. He will roll from side to side and laugh and coo some. He moves his arms and legs very good. Eats very little by mouth, maybe 5 or 6 spoonfuls of baby food. He hasn't aspirated since being in the hospital. He still chokes quite a bit but we know his limits and never push him past them considering how sensitive he is to oral activities anyway.

 

Its nothing for him to see 2 to 3 different doctors a week. He sees pulmonology, cardiology, pediatrician, neurology, g-tube clinic, plastic surgeon, neurosurgeon, endocrinology, ENT, Opthamology and a few more I'm sure but these are the main ones. Hospitals and Doctors offices have became a normal routine for Brantley.

 

So far, Brantley has been diagnosed with the following problems, Pnemothorax, pulmonary hypertension, polymicrogyria and hydrocephalus. Also he has the partial 4q chromosome deletion. He has chronic lung disease of newborn and also asthma. He has asd (heart condition) which we are hoping that the hole will close up on its own, if not he will have to have surgery to close the hole. He is fed by gtube. He has developmental delays, acid reflux and we recently found out he has a growth hormone deficiency.

 

We are currently going through the growth hormone tests. He has already had 2 test and we have 1 more to go through. After that, I will be giving him a nightly shot that will allow him to make the right amount of hormones in his body to gain the proper amount of weight and height. Right now, he only weighs 20 lbs and 11oz and he is 27 inches tall.

 

I stay at home with him everyday and work with him as much as possible. We still to this day do not know what the future holds. But we are hopeful that he will one day walk and talk and do most of the things that a typical child can do. We just take it one day at a time and work with him on as much as we can. He is a blessing and I am more than proud of him for all he has had to go through. I never knew that a baby could be that strong.

 

Each day with him is cherished. Raising a child with special needs is very hard. But no matter how stressed or exhausted I get, looking into Brantley's eyes and seeing life and a happy little boy makes everything worth it. I can never thank Lebonheur and the workings of God enough. I am grateful that God put him in the hands of some of the most amazing doctors I think I have ever met.

 

Brantley is such an amazing little boy and I am looking forward to sharing his story with the world. He is my "little miracle that could" because just like the book "the little engine that could" Brantley was given hard task to overcome. And once he gets older I will teach him the meaning of the book which is to be optimistic and never give up on anything no matter what you are faced with. Brantley once was faced with near death and he never gave up and he kept fighting no matter how much pain he was in. He is my world, he is my rock and I too because of him have learned to be optimistic. And I will never ever give up on him!

 

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Sleepover and Stuffed Pepper Soup

Friday night, Brantley spent the night with us.  I always put him in the bed with me and surround him with pillows.  It is easier that way.  He pulls the cannula out of his nose so many times during the night that I was wearing myself out getting up to put it back in, so it is just easier to put him in the bed with me.  I felt so bad for him Friday night though.  I think his throat must still be sore because each time he coughed, he would cry.  I cherish the times my grandkids get to spend the night with us.  Priceless moments for us and I hope that we are creating good memories for them.

Isn't he so sweet???!!!

Stuffed Pepper Soup -- this stuff is good -- nuff said!  Here's the recipe.

http://www.thecountrycook.net/2012/11/stuffed-pepper-soup.html

Phoebe's Weekend Agenda

I have this magnetic notepad that lives on the side of the fridge.  It has the days of the week on it but when I was looking for one of these, I figured I could make my grocery list on it anyway.  It did not matter to me what it looked like as long as I could make my list on it.  The last few times the girls have been here they have enjoyed writing on this notepad. Which is fine with me because I'm now using my cell phone to make my grocery list. 

This past weekend, Phoebe asked if she could write on the pad.  After taking it down from the fridge, she tore off one page and then tore it off at Thursday so that only Friday, Saturday and Sunday was left.

Here's her weekend agenda:

Friday:  Go to Meme and Granddaddy's
Saturday:  Go outside
Sunday:  Go to church

Sounds like a perfect weekend agenda to me! 

You're Mean

This past weekend the girls visited us and as always, they were quite entertaining.  On our way home Friday night, Phoebe was trying to get Sophie to do something and Sophie wasn't complying.  Phoebe told her, "You're mean" to which Sophie replied, "Yes, I am."