Nine Month Update

Since our last post Jax had his nine month well visit which consisted of his normal weight check and measuring. He also had to get one shot. Normally he would have gotten two but because of his seizure activity back in the spring he is not allowed to have the DTAP until he is seizure free for six months.

Jax is still taking 1tsp phenobarb a day and 2ml of kepra twice a day to help control seizures. Since he started on the kepra we have not seen any seizure activity and hopefully this will continue as his body naturally weans off the phenobarb as he gains weight. At his last well visit:

Weight: 16 lbs 2 oz--he is in the 5th%
Height:  25 5/8"--he is in the 3rd% (still keeping an eye on his growth)
Head Circumference:  15 1/8"--still not registering on the charts but the size of his head is STILL growing and making progress.

Our pediatrician said that in spite of all Jax has been through and the prognosis given he was pleased with Jax's growth. He is continuing to grow in all areas. Some are slower than we would hope but GROWING nonetheless. Jax is going to be 10 months old on July 13th and developmentally he is about at the 5 month mark an improvement from his last 4 month mark.

It is all bittersweet in that you want so much to see your children healthy, normal and thriving but in this journey we have been learning to grab hold of even the smallest signs of progress and hope that we will continue to see improvement.

Jax has been doing great in his therapy sessions. He actually grabbed hold of a toy on his own this weekend and he has been showing signs of possibly trying to roll over from back to belly. When he is in a good mood, which is mostly in the mornings, he has been smiling a lot more and I even heard him laugh a little. Although it was not the contagious belly laughter that babies have it was a little chuckle and I will take even that!

I finally caught some videos of him smiling and having some play time with Eden this morning. Enjoy!

Looking back at this video I should have just let the boy have a lick of the lollipop but I am so paranoid of germs. Afterall, it was an organic lollipop that should make it okay, right?!

A Wink and A Smile!

I know we have posted some deep heart wrenching things lately so I just wanted to share a little bright spot from today. There were days months ago that we didn't know if we would ever see Jax smile responsively. A seemingly minor milestone for most babies has been a major one for Jax. Every time I see this face my heart melts and it gives me hope.

Re: Breaking the Silence II

You are not alone...
The road you are on is the one I have chosen for you.
You trust Me to hold the very Universe in order, but
you let the seed of doubt begin to sprout. It's vines growing deeper as days pass.
I am your guide...
Surrounded by darkness, you can't see the light, yet I am there.
Am I not the one who healed the blind? the lame?
Trust Me to lead, even when you can't see what is in front or behind you.
I am your light...
The fires are hot. The hammer is hard. It must be this way.
Do you believe I would forge something that is too weak to use?
Do you believe I would make something that isn't perfect?
I am the Maker...
In your very words you say you believe I hold the Sun, Earth, and
Universe in My palm yet, you worry about the ones you love the most.
Can I not also hold them?
Can I not also give them exactly what they need from Me?
Can you let worry drown, and trust that I will keep them afloat?
I am Love...
You say you trust Me, you say you will follow Me, and you say I am your strength
yet, you are contemplating despair while I'm educating you with hope.
It's so ironic, you say you want to believe, trust, follow, and hope in Me.
Then don't change who you are because who you are is how I made you to discover Me.
I am your Creator...
I know you are weary, worn out, and feel like you are bleeding on the roadside.
You may feel alone, robbed, and full of despair, but I won't let you slip away.
On this road you will learn what it means to receive the very hope that you keep denying.
I am your hope...

Trust Me.
Believe in Me.
Let worry die.
Let despair rot away.

Let Me be your rest...

Breaking the Silence II

I've stood by a long time and wanted to write something. I just didn't know what. I think i know now. This is a conversation between me and God. It's the only way i know how to get what i want to say out of my complex thoughts. For me i know can be completely myself with Him. So it begins...

I am not alone...
It's a thought that is hard to swallow considering the road I'm on.
I believe you hold the Sun, Earth, and the very Universe in Your palm,
but in the deepest part of my mind I question the end result of Your actions.
Give me rest...
Are we destined to be in darkness for the rest of our lives?
We walk like the blind, feeling our way through this like people without eyes.
You are my God, my Creator, my King. You know me to the very core of who I am.
Give me rest...
The fires of the forge burn. The hammer striking is now a dull pain, no longer a sharp sting.
The smell of the smoke is now familiar, comfortable even. What am I, nay, What are we becoming?
A Sword to pierce the very heart of Darkness? A tool for binding wounds? Something unknown?
Give me rest...
You know me. You know above all things, i will take your hand as you lead, even to the very fires of hell.
We are tired and numb, broken and worn, yet we still move. I know You are the unseen strength.
What then can i say Oh Lord? Do i question your motives? actions? No, I trust You.
Give me rest...
We are weary, beaten, bruised, and tired. There is beauty in suffering. You know this more than anyone. It must be painful that so many give up, so soon. You know I believe You have a purpose in all things. I feel ashamed when I can't hold on, yet I believe that is when you are holding me. Help me, Heal me, Reform Me.
Give me rest...
Should my flame be snuffed out before my time, Send a smile to my daughters, tell them to never lose the joy of being a kid at heart. Tell my son I'm so very proud of him, he will always be an inspiration to his father. Tell my wife I adore her. She is beautiful and kind, and is the strongest person I've met on this earth.

I trust You.
I don't understand why we walk in this darkness, but
I trust Your decisions.
I'm scared this darkness will snuff out the light of the ones I love the most, however
I trust Your involvement.
I humbly ask of you one thing.
One thing that I believe could alleviate some of the pain and darkness we are so familiar with.
One thing that I believe you could grant if you saw fit, however not my will, but Yours be done- Forever and Ever.

Give me rest...

Jeremy

The Heart of a Mother

I think for the last 9 months I have been operating in survival mode. Pushing through each day and trying not to succumb to the overwhelming fear, disappointment and sadness. I hate to be so doom and gloom but this is how I feel right now in this journey. It is extremely difficult to stay positive and optimistic. I wake up each day and walk through each day because I have to not because I want to. The hardest part is walking this journey with no joy for life anymore. I feel so weak, so defeated, so alone, so angry and the list goes on and on.

Have you ever walked in the valley of the shadow of death? It sucks! There are no other words to describe it really. It is just the honest truth. Jax's injury and his condition is truly this shadow that has been cast over our lives. It is always the pink elephant in the room so to speak. We have been pushed off the mountain or hillside into this deep, dark valley where I am afraid there is no end. It is a valley that I fear we will walk until we take our last breath.  I am struggling with how to find any joy or hope again while facing the possibility that Jax may never be healed.

I know that the joy of the Lord is our strength, and I have read all the scriptures about the kind of peace and comfort that only God can give in times of great trial. I have experienced His love and compassion before but this time it is different. I should be able to go to Him with all of my cares and worries yet I find myself  unable to find rest and comfort in Him.

If you want to be real about it all, I have questioned not necessarily the existence of God but rather His involvement in our lives. All that I believed and all that I experienced before now has been shattered. I really don't know what to believe anymore. The questions I have run deep. On a daily basis I ask myself why God? What is Your purpose in all of this? Is there even a purpose? Is it just part of life?

Today was a hard day for me. Every day brings its challenges some harder than others. I face heartache everyday when I watch my son not be able to do the things a normal 9 month old baby should be doing. It breaks my heart when I see young boys running, playing, laughing, hugging their moms, etc. The pain is so deep that I just don't know how to rise above it. I may never hear my son laugh, he may never utter the words I love you mommy, he may never be able to play with his sisters, he might not ever be aware of his existence.

I am in a very dark and lonely place and my soul has found no comfort. I know there are people who have far worse circumstances. I know that I should probably count it all joy. But this is where I am. This is the lot my family has been given. The fact of the matter is there is no peace, no comfort and no joy in watching your child suffer. You may think differently of me now that I have expressed some of my feelings. But honestly that is okay. I need to be honest. I need to vent. The heart of this mother is silently screaming.

PT (Physical Therapy) or Princess Time?

So far today has been a more mild day with Jax. Our physical therapist and early intervention specialist came this morning to work with him. I love when they come cause it helps me to feel not so alone in this journey. The last time Jax had PT he was not very cooperative so she didn't even get to work with him because we couldn't calm him. However, today was total opposite. Jax was very calm and mostly relaxed this morning so she was able to get some good PT done. She said he looks as if he is making some progress especially with his head control. He is most content on his belly now and he is able to hold his head steady now and look around to both sides. When he first started therapy, Jax was favoring his left side mostly and ignoring his right side. Now when he is on his belly he will turn right and acknowledge sounds and site on his right side!

One area Jax needs strengthening is in his flexor muscles. He still stiffens a lot when he gets upset and straightens his body and twists to the left side. Strengthening the flexors will help keep him more relaxed and also help him to lift his head along with his body rather than his head following behind when lifting him off the floor.

I talked with our therapist today about when or if Jax would be fitted for some type of wheelchair. She said that basically it will be up to us to determine when it is needed. Usually when the equipment we have now (stroller) is no longer working for him. Jax definitely needs help with positioning so this will most likely be something we have to keep in the back of our minds in the coming months. It kills me to think about putting him in a wheelchair and how that too will alter all of our lives yet again. I already don't get out much with the kids but if we have to fit him for a chair soon there will definitely not be any going out alone with three little ones. I wouldn't be able to manage two strollers (Eden still is not mature enough to allow her to walk around out and about). So I am hoping this won't be something that is needed for at least another year. This will give Eden some time to mature and learn to stay close to mommy when we are walking out in public.

As far as eating habits go we are still breastfeeding by day and tube feeds through the night. Yesterday we tried cereal again and he actually ate half a jar of fruit mixed with some oatmeal. I was so excited that he ate with no gagging.

I have been slightly overwhelmed the last couple of weeks and feeling homesick. My family still has not met Jax and though I would love to pack up the kids and drive to PA I know that traveling with Jax that far in a car would not prove to be the wisest of decisions. I am sure it would be miserable for him (he hates his car seat) and stressful for me. So for now, we wait until a better day.

Isabella loves her baby brother. She is constantly in his facing kissing him, hugging on him and yes sometimes she tries to feed him like mommy (lol)! I guess she thinks Jax is her own personal baby doll. I have to watch that one carefully because there are times when she doesn't understand that Jax has had enough of the invasion of personal space. However, he tolerates her fairly well and I think is amused by her silliness. For those of you out there who worry about your daughters growing up in a male dominated household, you could have this to worry about....

 I came back to the living room one day to find that Isabella had dressed Jax up like a princess. She thought it was hilarious and eventually Jax was like "ok mom, get this thing off of me." Poor guy! I absolutely had to snap a picture because I hope that one day he will be able to pay her back like only a little brother could.

I will leave you all for now. Kiddos are up from a nap and I am jonesin for some sweet tea on this hot day!

Breaking the Silence

I have had so many thoughts these last few months, and I figured maybe it would be best for me to write about them in the hope of keeping my sanity. I will go ahead and warn you that I will be very transparent in my posts. There may be things that bother some to read but I hope that by sharing my raw emotions throughout our journey it may help someone else struggling with a similar circumstance and just allow me to vent my frustrations and fears.

If you ever want your faith tested to the point of losing it then ask for something to happen to your children. On September 13, 2011, at 39 weeks gestation our son Jax Macrae was born. He weighed 7lbs 1oz. What was to be a day of celebration ended up being a day of sorrow and fear. I guess we took for granted that our third pregnancy and delivery would go as smoothly as the other two. I never imagined that my child would acquire a brain injury during delivery. All I know is that my pregnancy was uneventful, I was carrying a healthy baby boy and our whole family was excited to welcome this new baby. Little did we know that in that dreadful hour so many things would go wrong.

Jax was born via vacuum extraction, forceps and by our OB pushing his fist into my abdomen and pressing down with his weight as I pushed as hard as I could. During delivery we lost Jax's heartbeat and he was losing oxygen due to what we later found out was because his cord was wrapped three times around his neck. Jax was immediately taken to the special care nursery for observation, and later that evening was transferred to NICU of Childrens Hospital at Erlanger. This decision was made after noted seizure activity, blood in his spinal fluid and apnea episodes. Upon his arrival to Childrens Hospital, Jax received a blood transfusion and platelets to try and stop the bleeding in his brain. We were told by the neonatologist that if Jax did not receive a transfusion he would most likely not survive the night. I didn't get to hold him until 4 days after he was born. Even then it was under supervision while he was connected to all kinds of monitors and iv's. It was not how I had pictured holding my baby for the first time. I was terrified of holding him. Afraid that I would somehow hurt him or cause him more pain. Not sure if there is anything worse than knowing there is nothing you can do to help your children or being powerless to make them better. Before being discharged from the hospital myself, I would lye in bed crying my eyes out longing for my arms and my heart to not feel empty. I longed to cradle my sweet baby next to me and smell of his sweet innocence.

I pleaded and begged God to have mercy on him and let him live through his first night in NICU. The morning after he was born brought with it so much heartache as we learned about Jax's condition. The worst being a brain bleed into the deep tissue of his brain. We basically were told that his outcome would be unknown and only time would tell but that it could bring devastating effects. The doctors told us to be prepared for the worst but hope for the best. How does one do that in the face of uncertainty? I am still trying to figure this out. I keep reminding myself that faith is the substance of things "hoped" for and the evidence of things NOT seen. One thing was for sure and there was no evidence at that point of anything hopeful. Jax was so sedated that for the first two weeks of his life he was rarely conscious.

Each day of Jax being in NICU was a roller coaster of emotions. One day we would see such hopeful signs and the next day we would hear news from the doctors the outlook was dim. This roller coaster of triumph and tragedy went on for the five weeks he was in the hospital and it still continues to this day.

Jax was discharged from the hospital on October 15th with a G-Tube so he could be fed. Because of his injury he had little to no suck reflex and was unable to take food by mouth. He is also on phenobarb and keppra for seizure control.

In January we met with the pediatric neurologist. This was by far one of the worst days of our lives. I felt as if someone had ripped my heart from my chest and stomped all over it. Any hope that I had mustered up to this point was completely gone after this visit. After discussing the details of Jax's condition and what went wrong the doctor told us that we should not expect much from Jax developmentally. The circumference of Jax's head was extremely small. Basically we were told that out of 100 kids Jax had the smallest head. He was barely in the 1%. This indicated that his brain took a huge blow and was not growing normally. He also had a ridge line on the top of his head where the left side of his skull overlapped the right side. The doctor told us that he would never walk, never go to college or basically have any kind of normal life. There was more to discuss but the doctor realized that we couldn't take much more bad news that day.

Jax is now 8 1/2 months old. Since his birth we have seen progress and setbacks. When Jax was 7 weeks old I first tried breastfeeding and to my surprise he latched on immediately and began sucking. To us this was a miracle in itself. He did very well until February when his weight gain started to slow and he fell below the growth chart. At this time our pediatrician recommended that it was time to visit a GI doctor and consider putting Jax back on tube feeds. As much as I hated to do this because breastfeeding was the only normal in our lives, I knew that it would be best for Jax. After our visit with the GI doctor, Jax began 10 hour tube feeds during the night. He is currently still on the tube feeds and is gaining weight and registering on the growth chart again.

Developmentally Jax has met some milestones like holding his head up, rolling from belly to back and finally smiling responsively. Developmentally he is a 4 month old. However the older he gets the more apparent are his deficiencies. The things that we have yet to see and hope for at this point are:

1. sitting unsupported
2. that when lifting up off his back that his head would not lag behind
3. rolling over--back to belly
4. Laughing
5. reaching for and holding toys
6. being self aware of his hands and feet
7. being more content
8. adjust better to transitions cause he hates change
9. getting him to relax more and not be so stiff
10. crawling or being mobile in any way

He is enrolled in a state/federal program called Babies Can't Wait. A physical therapist comes to our home and does therapy with Jax. She is awesome. The program is geared to teach the family how to do a lot of therapy so that we can incorporate it into daily routines. But let me tell you that this is so hard with two other busy children. I have yet to find or manage a balance of two very active, healthy children and one child with special needs.

To be honest I don't have very many good days where I feel positive and happy. Most days are a struggle to get out of bed and face the same challenges day after day. This journey is daunting, depressing and exhausting. It is truly testing my faith. We don't go many places but rather stay at home where I feel more in control of the situation. Getting out can be extremely stressful because we don't know if Jax will scream non stop or have a seizure or anything else. He HATES being confined to the car seat so it makes it near impossible to go anywhere where we can actually enjoy our time as a family. We just never know what to expect so it can be scary. Jeremy and I have faced some of the darkest days of our lives but we are so thankful for those of you who have prayed for our family and who have supported us in some way or another. The love we have felt for our son has been overwhelming. There are people around the world praying for Jax and we hope the prayers will continue.

Jax has been given a very grim prognosis from the neurologist. We don't know what the future holds really but according to this doctor we should not expect much. The only way at this point Jax will  have any quality of life is if God heals him. Though we know God can, we don't know if He will.

                                                                   Jax at 6 weeks old

Jax at 7 months old