It Has Been a Long Time

I just realized that it has been a terribly long time since I updated.

At the point I left off, I was still not able to hold Eddie.  I wish I would have continued writing this as my memories have become more and more general.  I don't remember many of the details.

I do remember the nurses in the St. David's Medical Center NICU were amazing.  Just about every one of them, maybe with the exception of exactly one, were very loving and seemed to really love caring for these babies.  To deal with baby after baby and retain that caring and loving...almost motherly...way about them is a testament to the amazing people there.  Eddie needed professional/medical care...but the care they provided was exactly what he needed in many different ways.  I love those nurses for caring for him with open hearts. And we were always welcomed in with a smile and a full report on what had happened in even the shortest time we were away.

I remember one nurse coming in to bathe him even though he had all of those wires.  She was so tender.  It was incredible to watch someone who was not his mother give him such a warm and loving bath.  She was so careful about his wires and just talked so sweetly to him and handled him with sure, yet loving hands.  I could not hold him yet, but if anyone could hold him...that is the way I wanted him held and touched and caressed.  It did just as much for my heart to see him held and loved like that as it did for him.

When Can I Hold My Baby?

I am getting frustrated at this point.  Everyday when I go in to see Eddie I ask if I can hold him.  I am repeatedly told that he has not been cleared.  This breaks my heart.  I feel like I am letting Eddie down.  He is going through so much and has not been held.  How can I express love to this child of mine without touching him?  I am really struggling with this, it is VERY hard.  I, again, resolve the best thing I can do is BE PRESENT, be around, rub his little hand.  Heartbreaking.  It has been a week, or more, at this point.  I want to hold him!  I want to kiss him.  I want him against me. Don't babies do better when they are held?  Haven't we all seen this?  What if he is struggling due to lack of affection?  I put myself aside and do what the doctors say to do.  I am there.  If I am not there, his dad is there.  If we have to do something with the girls, we are making a phone call to check.  I feel like a third party.  But this is not my time to pout or feel sorry for myself.  I tell myself to be strong and I ask my dad, who is in Heaven, to watch over him.

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.