Monday, July 30, 2007

On our way to the NICU

Well, we are all loaded up and my precious little girl is strapped down in the incubator, heartbreaking, and we are on our way to the hospital.

I guess I should tell you that my oldest daughter was at home, for about a week now with grandma, and doesn't know exactly what is going on. The last thing that she knew was that mom was going to the hospital to have a baby and hasn't come home yet.

On our way to the NICU we stopped by the house so that I could give my sweet little girl a big hug and kiss and tell her that I love her. Have you ever had so many things go wrong that you grab onto the "normal" things so tight just to maintain sanity? My world was out of control and the only thing that I really knew was that when L was hurt all I had to do was kiss her and everything would be better, and now I had M in the hospital and all the kissing in the world could not fix her. Kissing her wouldn't even tell me what was going on. I was out of control and for a control freak like me, I was out of my mind.

Thank goodness for my husband! I had never given him credit before. I had, or at least I thought I had, taken all that life had to offer and filtered what I passed on to others around me, including him. I sometimes felt like I was the only strong one. I soon learned that I was only as strong as my kids were. They are my weakness.

After I went home for a brief moment, we made our way to the hospital. WOW, what a traumatic experience that was. We made our way through the maze of halls leading to the baby NICU and when we entered we were pounced on by all of the nurses working there. "WASH your hands for 1 minute" they demanded. They really didn't even know why I was there yet! After I followed their regimented cleaning system and got sterile, I was allowed to show my pictures to verify my identity and see my daughter. Oh the trauma! The NICU is not a fun place. This is a place where you find the smallest, frailest, sickliest and loneliest babies. It is sad to say that many of the parents for the children in the NICU (while I was there) had abandoned their babies. The nurses, lovely and kind nurses, had taken it upon themselves to hold every single abandoned child in their arms. Rocking and singing and just plain loving the little angels that have no one else.

We found out little M and touched her frail body. She had to lay on a baby bed/table with these heat lights on her. Then we started meeting all of the specialists that were going to be helping her. The started another array of tests and waited and watched for some sign of what might be going on. NOTHING.....that is what we found....NOTHING! I stayed in the hospital for two weeks, right by my baby's side, and all we really found out was that my baby was having seizures and they don't know why. We were put on some medication that was supposed to control the seizures and finally released from the hospital. What was I supposed to do now? How was I supposed to continue on? What was wrong with my baby? Am I going to break her? What if she has another seizure? Is there anyone else out there going through this too?


Sunday, July 29, 2007

In the beginning

I have decided to start a blog and like most people that are new to the blogging world, I will start by saying that I am new and probably not very good. I promise to get better though!
How many of you have a child with special needs or know someone who has a special needs child? Not sure what I mean by "special needs child"... Well let's see...that could really mean anything. Does your child have motor delays, physical challenges, health issues...etc.? If you answered yes to any of these it probably means that you know what I am talking about. If you don't know just keep reading and you will have a pretty good understanding of what it is all about.
I have a daughter with special needs, she is a little over three and has seizures, gross motor delays, fine motor delays and doesn't talk yet, which means that she has speech delays. We have been through every test that you can imagine (would never wish your child to go through) and do not have a diagnosis. It totally sucks! She is truly fantastic and works harder on things that most people take for granted and doesn't complain a bit. I have to push her everyday through physical therapy, occupational therapy, speech therapy and child development classes. As a parent I feel it is my duty to give my little one every possible opportunity to do and be all that she can be. Sometimes I just sit back and ask myself why does it have to be like this. Why does my baby have to go through so much already?
When my little one was born, she was born not breathing. The doctors put her on my belly and I looked at her and saw that she was blue and not crying yet...I panicked and said "why isn't she crying?" The doctors and nurses rushed her off and started to work frantically on her. My husband and I just sat there holding our breath. Could you imagine? Here you have a new born baby lying on a metal table with bright white lights shining all around, about 10 nurses and doctors all around, each doing their small part to figure out what is going on. My heart stopped beating, I held my breath, my eyes filled with tears and all I could hear where the medical jargon going on across the room. What an absolutely horrible 3 minutes. Yes, it took 3 minutes for her to start breathing. The doctors didn't know why she wasn't breathing, they said maybe it was the shock of birth. Have you ever heard of such a thing? All I could do was take the doctors for their word and hope that they knew what they were talking about. Then the "normal" new baby stuff took place. Well, as normal as you can get after being in absolute panic and shock. The doctors went on about their business as it nothing ever happened. After we got put into our mommy and baby room we waited for the hours to pass, getting to know each other, so that after 24 hours we could go home. The only problem was, things weren't normal. After about 7 hours we had these bouts where she would go "dusky grey" and stop breathing. I was the only one who saw these things because by the time the nurse came she was normal again. UGH!! I thought I was going crazy. It continued to happen every so often and after each episode the doctors would start our 24hr clock over. You see we had to go 24hrs with out an episode before they would release my daughter from the hospital. We would go 7 hours then we would make it 12 hours... and then we had our first "seizure".
My little baby was in my arms nursing, wires were attached to her arm and an IV in the other arm (this is something that no infant should ever have to go through)! She had been nursing for about 10 minutes when all of a sudden she started to convulse. Talk about guilt complex! I thought it was me that gave her the seizure. The doctors ran from all corners of the room to see what was going on. That is when the tests began. We were rushed off for a CAT scan, then spinal tap, EEG, EKG, every possible blood test....but no explanation. Then we were rushed off to the NICU (Neonatal Intensive Care Unit) in a different hospital where they specialize in children. My little baby was put into an incubator and strapped down. They took pictures of her and gave them to me so that when I got to our new hospital, they would let me see her (basically this was my proof that I was Mom), because I wasn't allowed to ride in the ambulance with her. Imagine for a moment how lonely it would be for both me and my baby. After she was taken from me, with tears streaming down my cheeks, we ventured off for the 3 hour ride to the new hospital....