Monday, May 21, 2012

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




2 comments:

  1. Misty,
    Thank you for taking the courage and time to share your heart's reflections and cries. We are all journeying with you, seeking God's face on your behalf.

    Aubrey

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  2. I am PROUD to call you my friend. Honesty can heal the body and soul. I will continue to pray for you and the family.

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