Month: February 2019

The Start of our Fight

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Freshly home from the hospital I was on a mission to help my daughters Jaundice as much as possible.  Our doctors appointment for the test was Monday.  Throughout the weekend we sat by the window so she could get some sun but to no avail the Jaundice became more and more apparent. Monday morning came and we left for the doctors appointment.  They took her blood and then we waited for the results.  During her appointment I mentioned a few things I had noticed during the weekend.  The doctor took note and sent us home to await the news of the test.

Later that day the doctor called with her results.  The count was high, really high, and we needed to take her to the children’s hospital and have them do a more accurate test.  If the results were similar to the test performed at the doctors office she would be hospitalized.  A danger of having a high bilirubin level is brain damage.  My mind was in overdrive as I went to the children’s hospital to see what the accurate test said.  We arrived at the hospital and had her tested.  The doctor at the children’s hospital arrived, examined my little girl, and explained that the test results were high. That meant we were going to be here for a while.  He further explained that she would be under the bilirubin lights, an IV, bottle fed, and countless lab tests. When she was born the Thursday before she had a hole in her heart but when the doctor checked again today it was closed.  That lifted my spirits a bit. That was one problem I could cross of my list.

As we waited to be admitted to the hospital I was dealing with a torrent of emotions.  I felt helpless, guilty, sad, and alone. I felt I was walking a path I knew nothing about and was trying desperately to learn.  I saw mom’s who looked like they were very comfortable at the children’s hospital as if it were second nature.  I held my baby and wondered if I was every going to get to that point.  My husband and I were trying to juggle all we had going on with a small family and I felt like I already wasn’t keeping up. We were four days into this and she had landed back in the hospital. I tried to do everything I could to keep her out of the hospital but she had still ended up there.  I had failed! I had tried and I had failed!  I wondered if this is what the rest of my life was going to look like.  Trying and failing!?!

After a four hour wait we were finally admitted to the hospital. As the nurses took her to get her settled in her room and under the lights, it was late at night. I had to leave her in the care of her nurses so that my husband and I could pick up my boys from the sitters.  As I left I was numb, I had a headache from crying. We put the boys to bed and waited for the morning to come.  At breakfast my little boys asked where their sister was.  I had to explain that she had to go back to the hospital.  As I said the words I still felt like I had failed her.

As I arrived at the hospital the next morning I walked in and her head was half shaved so they could place the IV. As I saw her I was overcome with emotion and started to cry.  I wish that she didn’t have to be here! All of a sudden a nurse looked over at me and said, “Your baby is handicapped, what are you crying for?”  I was appalled at the callus way the world looked at her.

In the last 4 days I was told by multiple people not to care or worry about this child because she was handicap. I was presented with multiple options on how to “deal” with her. I knew I didn’t know what I was doing and I was not experienced, but I also knew that no little baby needed someone to give up on them right from the start. I didn’t feel like that was fair for her. She needed the love and help of all those around her.  I felt a strong need to fight for this little girl.  Three days into the hospital stay she was so mad at the nurses and the IV cords that she turned over in her bed.  I saw the fight and the stubborn streak she had and my heart grew! Yes, she was handicapped, and yes, she would have her limits, but I was going to push her to those limits. As hard as she was willing to fight, I was too!

-Gail

The Scramble

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As we meet our little girl, the doctors started talking to us a mile a minute. I felt like I was walking into the woods at dusk with fog rolling in. I can see a few steps in front of me and then quickly I can’t see anything at all. I am guessing what I am doing. I am guessing the path but never before had the path been so important. I hear what they are saying but I feel completely inadequate to be the one making decisions for this precious baby. Each decision I made at this point mattered. It wasn’t a choice about the outfit I would take her home in, these were choices that would affect my little baby for the rest of her life. As the doctor’s continued to talk they asked me if I had any questions.

Questions?!?

I screamed in my head. I don’t know enough to have any questions. I am looking at my little girl and I don’t know what to ask, I don’t know how to help, I don’t know what to do. All I know is she is mine and I have to make these decisions for her. My daughter’s pediatrician said we would start with an X-Ray to determine if her heart was on the right side of her chest. The X-Ray would also help determine if she had congenital hips, and any other physical issue we would be dealing with. She also reminded me that I needed to make sure to call her office and order the test for Jaundice as soon as we left the hospital. As she mentioned this I reminded her that both my boys had Jaundice. I was pretty sure she would have it as well. We were off and running and I was holding on for dear life, as I tried to wrap my head around it all.

If dealing with my new baby and her needs and making sure our two boys were taken care of wasn’t enough we started getting the families opinion on the matter. My husbands parents didn’t want us to keep the baby. We were a young couple and they didn’t want us to have to carry the “burden” that this child would bring. They wanted my baby to be institutionalized. My husband firmly let them know there was no way that was going to happen. Our little girl would not be thrown to the waste side before she had a chance to be anything. We would figure this out, the best we could.

As I was dealing with all the immediate needs my daughter had my children’s pediatrician was setting up the beginning of a support system for me. She called the different state agency’s involved in handicap children and parents to get the ball rolling. They called me while we were still in the hospital. We set up a home visit in three weeks and a parent group that would start teaching me how to work with my handicap child. Both the state worker and I were impressed at how fast my pediatrician got the ball rolling. As I got off the phone I was grateful for my pediatrician and the help that she had given me. I didn’t feel as alone knowing she was setting up a way to give me help. I just had to make it three weeks.

After all the tests were done and we were told what we were dealing with it was time to take my daughter home. Her heart was on the correct side of her chest but she did have congenital hips. With this information and a promise of more information to come we were ready. As we were preparing to take her home they asked me again if I had any questions… again, I didn’t know what to say. I hadn’t had time to think of any questions. I am sure I had some but what were they? I told them I didn’t have any questions at this time but I knew the second I left the hospital a million questions would flood my mind. As I buckled her into her car seat I was on full survival mode. I didn’t know what else to do but go home and introduce her to her two older brothers.

-Gail

Getting Ready for Baby

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Excited, YES! My friends all said it looks like I am carrying a girl. With two little boys ages 2 & 4, having a girl would be the cherry on top! I dreamed of her dancing just like her mama, and maybe running track as well. I would have my perfect princess and as my due date approached my excitement to welcome my new little on was mounting.

My labor had a false start. The contractions would start and then stop. More waiting continued, then at 6 a.m. my contractions started but they were hard and they really hurt. This was completely different then both of my boys. I called my sitter and got everything arranged so I could go in as my labor progressed. I wanted to time it just right and labor at home as long as possible. As time passed I got a gut feeling that I needed to see my doctor. I needed his medical comfort and reassurance. I called him and he told me to come right in.

I got to his office, he confirmed I was in labor and the nurse loaded me onto a wheelchair and rushed me across the parking lot to the hospital. It was go time! The time had come for me to meet my little human.

My labor was hard, harder then my boys. There was the typical buzz in the labor and delivery room. My doctor signals me to push and out comes the baby, it is a girl, my friends were right! The excitement of the delivery room quickly changed. My rosy pink baby turned grey, I only saw a glimpse of her before she was taken out of the room. I saw her cute little ears which had a point and her cute tongue that stuck out, that was all. My doctor on the other hand saw far more.

As they took her out of the room, I prayed everything would be okay. I anxiously waited to hear some news about my little princess. I waited, and waited, and waited. I heard no news from 1 p.m. until 7 p.m. when my children’s pediatrician stepped in to talk to me.

“Your baby, we think has Down Syndrome.” The doctor said. She continued, ” Now we have to test for a hole in the heart, obstructed bowls, congenital hips…..” as she continued to speak to me my mind started to recall what I had been learning in my child psychology class. I knew medically it was bad. As she spoke with me she was looking for my reaction. Was I going to reject the baby? Would I not accept the news? Would I be angry? The reason that they waited so long to speak to me was very clear now.

Before the baby was born I had set up the ability to feed my baby through out the night and I looked at my doctor and said, “Do you remember the order I had to feed my baby through the night, I still want that carried out.”

She replied, “Do you understand that your baby is retarded?”

“Yes,” I replied firmly, “But she still has to eat.”

As soon as I said those words the doctor visible relaxed and immediately took us to see our little girl and explain the symptoms of this big unknown, with the name of Down Syndrome.

-Gail

Life Changes in Seconds

Life Changes in Seconds

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A birth, an accident, old age, cancer, a heart condition, a stroke….the list is endless. In a matter of seconds we can all have a life altering event. Just when we think we have life figured out it throws a curve ball and we are now trying to figure out the new world we have been thrown into. When my life has met these challenges I have approached the problem in one of two ways:

#1 – I attack it head on and I am proactive at finding a solution.

#2 – I dig in my heels, hide in my bed, and resist the inevitable. I will get to it in the morning!

My first child was diagnosed with ADHD Extreme. My training started with him. I had to start figuring out the “Problem” (what made him react a certain way, how to change his environment to improve his behavior, where was the limit and line I couldn’t let him cross) I had to study his behavior, create a plan, and carry out that plan.

Many times the plan didn’t work and I had to change the plan through trail and fail, reevaluate and attack it again. My son’s behavior started my training. The mom training for the curve ball, life was about to throw my way.

My son taught me to PERSEVERE.

I have learned to hold my ground.

I have had to figure out and research how to help my child to the best of my ability.

I have learned to implement the plan and if the plan fails to let the plan go and start again.

I have learned to be an advocate in my children’s care and fight for what was best for them, even when the idea wasn’t the typical answer.

And then I learned to pick up my feet and DO IT.

I know how it feels to have life change in a matter of seconds. It started with my son but it didn’t end with him. A few years after I had my first child and as I was learning to work with his behavior I prepared to welcome my third child. Little did I know that my life was about to be completely changed and I would enter a world I know very little about….

Being a parent of a special needs child.

Gail