Tuesday, January 30, 2007

Our "Wait and See World"

From the beginning:

When I went to bed Saturday night, I felt fine. I didn’t expect to wake up an hour and a half later in labor.

Addie woke me up almost exactly at midnight. I knew as soon as I opened my eyes that I was in labor. Chris woke up but I told him to go back to sleep…he would need it. It wasn’t until 1:30 that I woke Chris up. It didn’t take much to get Julien up and out the door. The prospect of having his little sister before bedtime that day made it easy to get moving. It’s amazing how many cars are on the road at 3:00 a.m. on a Sunday in the pouring rain. Chris drove like a madman and thank God we made it safely. The next few hours went by so quickly.

While laying in the operating room waiting for Addie, I was calm but excited. I kept my eyes fixed on Chris as they announced that Addie was on the way; it was the next few minutes that would change our lives forever. As the nurse announced that Addie arrived at exactly 6:00 a.m., I asked if she was o.k. There was no answer (maybe they just didn’t hear me)…a minute or two went by and I asked again…no answer and I felt my heart dropping. Maybe she wasn’t breathing well and they were just busy taking care of her. I asked Dr. Ingram what color hair she had and she told me that Addie had so much blood in her hair that they really couldn’t tell. I knew then that they had heard me before but were choosing not to answer me. Quite a while passed before the nurse brought Addie to lie beside me. As she placed her next to me, she let us know that there appeared to be a problem. Panic set in. As the next hour passed, we didn’t know what to think. A nurse came in and told us that Addie needed an ultrasound to see if there was a problem with her brain. It wasn’t long before she was back and we were told that there appeared to be “bleeding on the brain”. That’s all the information we had and still didn’t know what that meant.

Addie’s pediatrician came in for her newborn visit and that’s when the news starting getting worse. As Dr. Dudgeon sat in the rocking chair trying to find the words, all I remember him saying is “It’s not good, Jenn”. Later on that morning came the CAT Scan and conflicting results. Ultimately the results of the CAT Scan showed that there was no bleeding on her brain, but a build up of fluid in the ventricles and around her cerebellum. We still didn’t understand what was going on and nobody was very forthcoming with details.

Monday passed in a blur and I insist that I go home Tuesday morning. I can’t stay any longer. Before we are released Addie has to go through another ultrasound (this time on her kidneys), blood work for possible infections and genetic testing. We are released to go home by 7:00 Tuesday morning, but get a call from my aunt who insists that we have a pediatric neurologist consult before we leave the hospital. We request the consult and this doesn’t take place until around 6:00 p.m. We waited at the hospital the whole day to hear the worst news of our lives. The neurologist informed us that Addie had suffered brain damage and that we could expect a bleak future for her. He ordered an MRI and then the waiting began.

On Wednesday, we had to take Addie to Dr. Dudgeon for a follow up since we left the hospital early. As we are sitting in his office and he’s going over details with us he looks at me and advises me that I really need to rest and take care of myself. Next were the words that would stay with me for the rest of my life. He told me that I needed to rest because it was hard enough recovering from having a baby and major surgery, much less having to take care of a “special needs baby”. I went numb. Addie…a special needs baby? I don’t remember the rest of that week.

Monday came around again and we had to take Addie in for her MRI. We were so full of hope, knowing we would receive good news that morning. If the damage to Addie’s brain were just to her cerebellum, surely she would be o.k. Addie was perfect during the MRI (they decided not to put her to sleep), didn’t move an inch, not even so much as sucking on her pacifier…what did that mean? Was she O.K.? I couldn’t go in with her during the procedure because of my staples, but I sat and stood and paced as I watched her through the window. Our journey to the neurologist office for the results went in slow motion, as did the moment that he gave us the news. Addie had suffered complete irreversible brain damage. According to him, we could expect for Addie to suffer seizures, severe mental delay and that she would never function “as a normal child”. I don’t know how we got from his office to the chapel, but I know we did. As I sat praying and hysterical, a nun came to us. Sadly enough, she had no words of comfort, only offered to pray with us. I don’t know how long we were there and I don’t remember the next few days. I remember the words that each doctor had said to me and that was “enjoy your baby”, they said it as if we were doomed.

I can’t bring myself to look at the piece of paper that Addie’s diagnosis is written on and I can’t bring myself to read her prognosis. I know I should research the diagnosis more, but I can’t right now. I’m relying on my aunt to give me the details that I need.

Next, came one appointment after the next and the formal entrance into our “Wait and See World”.

Addie had her hearing evaluation, which she passed…great news!

Her vision test brought about encouraging news; her optic nerves are completely normal! This gives us great hope that she will be able to see. The ophthalmologist warned us that although her optic nerves are formed, the area of her brain that controls vision might not have formed. So, we have to “wait and see”. We should know by around three months but definitely by one year what to expect for her visually. Right now she seems to focus on objects so that is VERY encouraging!!!!

We consulted with a neurosurgeon to determine if surgery was an option for her. We learned that Addie’s sutures were overriding and not fused which means that there is nothing surgically that can be done. This is good news because I couldn’t have imagined putting her through reconstructive surgery. We can expect Addie’s skull to grow as her brain grows, but we will have to “wait and see”.

We got the results back from her blood work and genetic testing and all were normal. This simply means that there was no medical reason why this happened, but simply the will of God.
We are scheduled with another neurologist soon and also a geneticist.

I was “lucky” enough to speak with a Neonatal Nurse at Blue Cross concerning Addie’s condition and was referred by her to The Bell Center. This may very well be our saving grace (I am so glad that I decided to talk to her!). Addie is now enrolled at The Bell Center two days a week for therapy. She will be enrolled there until she is three years old. Addie will receive physical, speech and occupational therapy as well as any other developmental help that may be necessary.

Over the last four weeks I have prayed for peace. I feel that it is coming. I no longer go to bed crying and wake up crying but I have yet to make it any considerable time throughout the day without crying…it’s a start. I continue to grieve for Addie, for the things in life I’m told she will never experience. My baby may never walk or go to school, but the part that breaks my heart the most, is that my baby may never have a baby of her own. Isn’t that what every mother dreams of? Having a child is the greatest gift in this world and my angel will probably never get to know that joy. I know I have to focus on each day but my mind continues to wander down this path daily. My goal is to prove the doctors wrong. It’s possible…right? I feel that Addie will do much better than expected and maybe even go to “normal” school.

We have hundreds of people praying for our precious angel and I know that God will grant us a miracle. I am so thankful for all the prayers and for every gift, card and phone call that we have received.

As I told Dr. Dudgeon: we are “preparing for the worst, but hoping for the best and that God gave Addie to Chris and me because he knew that we would take care of her”.

Addie is our angel and I thank God that we have her.

The Moment I First Saw My Baby Girl!
Our "Wait and See World" one year later.
Addendum A
Addendum B

7 comments:

jennifer said...

As I read "The Beginning" I was so touched. I can feel the confusion, the sense of being overwhelmed. But shining through is Faith in God.

I am going to read one year later. I have already seen beautiful photos of your little girl on your blog. I am praising God for you and your little family before I even read another word!!

The Redhead Riter said...

I am touched by your family's story. She is beautiful. It is so exciting to see her walk. Never under estimate the power of God. If you don't believe me, ask Moses...LOL

Anonymous said...

I ran accross this when looking for my brother's blog - a complete accident. I am in tears. My own little ones are playing on the floor. Jenn, your writing is a gift. Your family's faith is real. God has used your story to talk to me today. Thank you.

jennohara said...

I've read "Our wait and see world" over and over in the past, but today I read again, and it makes me SO happy that Addie IS proving the doctors wrong. She is going to do GREAT things

Susi said...

Your story made me cry.... thanks for sharing. I can't wait to read more of your blog. Addie is a beauty!!!!

Barbara said...

I was touched by your story. You put into words that which is difficult to explain to others. I had a "special needs" daughter too. She only survived 36 hours after her birth. People told me to forget about it and have another, as if I could ever forget her. I had to educate others to help them understand that each of us has a limited lifespan. The fact that hers was so short didn't make her any less valuable, nor did it mean her life had no purpose. It seems you understand that each child is precious regardless of anyone else's expectations for their future. In the end, they will decide what their future will be. We can only be there to help them find their way.

Addie looks like a joyful spirit. She's fortunate to be with a family that sees her life as a series of possibilites.

Kara said...

We have the same story...it took me four months before I could even research or look up things. Calvin is only two and it's encouraging to see your daughter doing so well! I feel like we will never get there but the Lord knows Calvin's path too. Blessings to you!