Mini Seizures

Eddie had a few mini-seizures over the next few days after being warmed up. We were told that any seizure could cause more brain damage (the thought was that there HAD to be some brain damage). When I would come in, it was the first thing I would ask. He also had trouble regulating his own temperature. Everything seems to run together, but it seems that about the time he got taken off of hypothermia he also got a line put in that ran from his foot to his heart. That line made me sooo nervous because it seemed the nurses were so careful around it. And they said that if it was pulled out, it would not be good. He had a bunch of lines still: two in one foot, one in the other, one in each arm and probes on his head. But that line to his heart scared the heck out of me.

A Beautiful Blessing Called the Ronald McDonald House

Every day, at least once, we would ask the nurses to have one doctor or another call us. We, literally, never got a call back from any of the doctors until we were about to go home a couple of weeks later. We only got to speak to a doctor when we would corner one. Funny thing is, when the doctors came through doing their rounds, we were told to leave and we still would not see or talk to them. I realize doctors are busy, but they really need to think about the person and the people behind the patient. We were lost. All we did was take turns going and sitting next to Eddie. Children are not allowed in the NICU and we have two girls who were in school. We really don't have any help from family. Well, we do have one aunt. Aunt Olga, who was an angel during the process and kept our girls entertained on the weekend. She is one of the most loving, nurturing and giving people I have ever encountered. She opened her home to us and never made us feel uncomfortable. She did it all. We stayed with her for the first couple of days until we got set up at the Ronald McDonald House. We live about an hour away from the hospital and this made things so much easier.

The Ronald McDonald House provides lunch and dinner and a little apartment for two adults and two children. This worked out for us perfectly. We were guests there during the holidays and had to run the kids to school from there only a few times. If you are ever asked to donate a dollar to the Ronald McDonald House, please do. We had never used anything like this. Never imagined we would have to. But it was truly a blessing. Everyone there is so welcoming, yet they leave you to yourself. If you miss the meal, it is packed nicely in the fridge for you to warm up. You have a security card to get in and out at any hour. Laundry is free. Food is free. There is a playground, computer access, tv room, kids playroom and a pool table. This place is an absolute heaven for families who need to be able to get to the hospital quickly and want to be near their sick child or children. I love the Ronald McDonald House and we plan to visit as a family one day to provide a meal for another family. You can visit the Ronald McDonald House - Austin website at http://www.rmhc-austin.org/

Doctors Can Not Agree on Brain Function

Eddie's EEG was basically flat. It showed almost no brain function. One nuerologist insisted that this indicated that he did not have brain activity due to the hypoxia he had suffered at birth. But the other doctors did not agree. Or, at first, one other doctor did not agree. A second doctor was called in and now two doctors felt that this did not necessarily indicate that Eddie had no brain activity. They thought there was a strong possibility that this was just due to his being heavily medicated with seizure medication.

We, at this time, had no idea there was a disagreement. We were told by the nurses that the doctors felt it was due to his medication and that he would be re-tested later, when his seizures were under better control. He had had a few more very slight seizures in the few days after his birth.

We had no idea about the disagreements the doctors were having.

We were also getting extremely frustrated by the lack of doctor communication. We would ask for doctors to call us or meet with us, and we never got any follow-through. Everything we were finding out was "unofficially" through the nurses. This had me so frustrated as this was my baby, not just one of their many patients. I wish doctors would understand this.

Brain Function or Not?

Eddie had suffered a seizure right away when he was born. He had a few seizures in the first few days of life. One seizure medication didn't seem to work, so he was on two seizure medications. There was a lot of concern about the seizures causing more brain damage. This was another reason we were not to stimulate him. He was basically sedated to the point of just being a limp body. It was very hard to see. We would lift his little hand and it would just fall back down. The idea was to keep his brain calm so that there would be no seizures. Now, remember, I am not a doctor. I am just relaying information as it was explained to me.

Eddie's first MRI came out normal. We were very excited about that. But when he was tested for brain activity, it showed that it basically did not exist. This is where it got even more stressful and interesting.

The End of Voluntary Hypothermia

The morning that Eddie was to be warmed up felt like a holiday. I was so excited for him. I couldn't wait to get to the NICU to see him. I was, luckily, still in the hospital due to the medical problems I had encountered that had caused me to give birth early. I waited until the warming was implemented and went to the NICU.

It may have been my imagination, but I felt that Eddie looked a little more relaxed and open. He seemed to be comfortable. His body was no longer that slight shade of purple. At a visit a few hours later, his body had a pink hue to it. That made me very happy. Although he still hadn't experienced a hug or a kiss, he was warm. And I could stroke his little hand. My baby was comfortable and, later, even got to be swaddled. Just seeing Eddie in a blanket swaddled and comfortable, filled my heart with joy. Now, I just wanted to get all of the tubes and wires out of him! But that wouldn't happen for a while.

Induced Hypothermia - No Fun!

At this point, Eddie is quickly started with his induced hypothermia. He was placed on a cooling mat, or hypothermia blanket, completely naked and had a cooling mechanism above him. He was cold, full of tubes and naked. It was so hard to see. I wanted to hug him, cover him up....anything! But he had experienced some seizures, and we were instructed to do no more than hold his hand. The doctors did not want us to stimulate him. It was EXTREMELY hard. But we hoped it would have a good outcome for Eddie. The hope is that Induced Hypothermia will reduce or prevent brain damage, which, in our case was made a possibility due to the hypoxia Eddie experienced at birth. He was cooled down for 72 hours and then slowly warmed. The 72 hours seemed to drag on and on and he looked so cold. I wanted to warm him up and hug him. We had to watch our baby just lay there and receive no love. I tried to just be there and talk to him so he would know he had a lot of love waiting for him. My poor baby. That was the longest 3 days I have ever experienced. I wanted him to be warm and comfortable.

Hypoxia? Hypothermia?

I had not seen Eddie yet and it had been a couple of hours after delivery. I really wanted to see him, but now I had to wait until they implemented the voluntary induced hypothermia. I had no idea what to expect, I just wanted to see my baby boy.

When I finally did get to see him, I was surprised. First, I was surprised by the amount of IV's and tubes and wires that they can fit into one little baby boy. He even had a thing covering his nose that made him look like pinocchio. Second, I was surprised by the head of hair on that boy! He was beautiful, tiny and naked. I was shocked to see that he had nothing on. He had a cooling mat, under and was being "cooled" from the top, too. Induced Hypothermia is implemented with the hopes it will reduce the development of irreversable brain damage/injury. I had a hard time seeing him like that.

I wanted to hug him. But, we were told that he had had seizures and we were not to to touch him or stimulate him. That is the hardest thing! I wanted to hug him, kiss him, touch him. I couldn't. My baby was cold and full of wires and no one was able to give him any love or affection. A mother's instinct is to comfort and hold a baby who had to deal with all he had to deal with, I could not. I resolved to be strong and present. It was all I could do.

An Angel Named Grandpa

I am looking at Eddie across the room. He is getting sleepy in his swing, staring at pooh and piglet dancing above his head. He is smiling as he drifts off to sleep. He always smiles as he is falling asleep. I have heard that babies that smile in their sleep are talking to angels. I want to believe that he is talking to his grandpa Ed (his namesake). I am sure grandpa is telling him funny stories or very nice things. That is all grandpa ever did for my daughters. He would love this little boy. I truly believe that his grandpa answered a prayer I sent him asking for him to help Eddie make it through. The day after I asked for my dad's help with Eddie, who had gotten a dismal prognosis that day, Eddie made huge improvements. My precious baby has a very special angel watching over him. What a lucky boy.

Eddie Giggled Today!

I know I am supposed to be continuing the story. But I had to tell everyone that I was changing Eddie and singing (yes, he likes my singing! Or at least he is stuck with it cuz he can't walk OR RUN!) and he smiled a goofy smile. I laughed and he giggled the most wonderful giggle in the whole entire world.

It All Started...

The day before Christmas I was very ill. I had been getting sicker and sicker as each day went on. Finally, on Christmas Eve my body just couldn't take it anymore. I laid in bed all day and felt horrible that I couldn't make it a special day for my girls. I couldn't do anything for them.

When Joseph got home, he insisted that I go to the hospital. I quickly agreed. We dropped the girls off at my mom's house and went to the hospital.

After what seemed like an eternity with the nurse on duty trying to find Eddie's heartbeat and failing, she called for an ultrasound machine and the doctor. I wish she would have done that sooner and not waited so long. I was afraid the baby was dead. The doctor immediately informed me that I would be delivering my child NOW. By that time I was so sick and disoriented that I just nodded my head. I was terrified.

Next thing I knew, I was waking up after delivering my beautiful boy, Eddie. What I did not immediately know is that he was unresponsive at birth, he was in shock and that he had experienced something called hypoxia. Luckily, he was revived. However, he had suffered a period with no oxygen (hypoxia) and had a seizure almost immediately. All of this was told to me later when another doctor came in to ask if he could proceed with treating Eddie with hypothermia (cooling of the body). We agreed. Though we are glad Eddie received this treatment, it was pure hell to watch and get through. All of this was only the beginning of what seemed to be a lot of daily stresses and scares. I will continue Eddie's story next time.

Be Nice to the Newbie!

I am new to all of this. And I will definitely try to be as politically correct and sensitive as I can be. I never mean to be offensive, but at times my ignorance about a subject leads me down that path. So, please be nice! I may not know much at this point, but I am certainly open to being educated. In fact, that is my hope. Those of you with experience with this subject, who I hope will contribute, please be nice as I stumble along on my way to being informed about hypoxia and the development of my child. The purpose of this blog is to be the best mommy I can to my beautiful son. And to help others who want the same for their children but just don't know where to start or what to do.

A Quick Word of Advice

Just a quick note to anyone who has found this blog and is sitting in the hospital faced with all of the craziness, information and confusion after his/her child experienced hypoxia. The one thing I wish I would have found online or been told: TAKE NOTES. Get a notebook and immediately write down the names of doctors and nurses who talk to you. From the smallest details to the specialists who come in for permission for treatments or procedures, be sure you write down the name of the doctor, what day they came in and at what time, and what was discussed. We had so many nurses, doctors, and specialists coming at us that it all seems a blur. Thank God my husband had a clear head and is able to remind me of things. I was medicated and in shock and it all seemed to run together after a while. If for no other reason than to keep everything and everyone straight in your head....keep notes!

Where is Everyone?

My son, Eddie, suffered hypoxia at birth. What do I do now? When I try to find information online I find nothing! I haven't found a message board, an association...NOTHING! I am sure there are others out there looking for info from other parents who have went through the same things. That is the purpose of this blog. I am hopeful that this will be the beginning of a lot of shared information. I would love to communicate with other parents of children born with hypoxia. I will share our story in the posts to follow. But for now....WHERE IS EVERYONE?