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July 11th, 2004
Well, after going in the hospital on July 5th, no sleep since July 6th, our baby girl was snatched from mother’s womb at 10:58 PM. Mommy had no food since Friday and pushed herself through many hours of labor to attempt vaginal delivery. Jonna’s head just was too small. After seeing how small she was, you almost feel sorry for all that pushing we did, however, that stress may have saved her life. Weird, how the body prepares when pushed. The joy of having the whole pregnancy problems finished simply overcome by now having pre-term problems begin. The Journey starts now.
All these days in the middle -
I just began writing down some thoughts and I lost some of them, so in summary of these days, do this:
Apply tape to your hairiest place on your body. Close your eyes, dream of a peaceful place, serene, calm, your future, your family dreams, breathe deeply, relax, feel the earth warmth soothe you, all muscles without tense, all ideas clear------------------then RRRRRRRRRIIIIIIIIIIIPPPPPPP the tape from your body and scream AAAAAAAAAAAAAAAAUUUUUUUUGGGGGGGHHHH.
Now you have the effects of every HOUR from July 11th till July 28th.
July 29th, 2004
You talk about what 18 days will do for you. Two good weeks of progress, the BLAM back to worse than the beginning. You want to know what we enjoy, watching other babies in the NICU “graduate” from our room. If they go from our room on up to quiet rooms, they are closer to graduating completely. That is exciting, I will not know what to do on the day we get to move to another room. Alright, back to my BLAM. We started 4 days ago to have a bad night. Then that bad night went into a bad day. Jonna did not like what we were doing to her, she was tired of attempting to breathe, tired of doing so well, and just probably stressed from all the changes in 14 days. While I am a patient man, I have to realize that some periods in this move nowhere. Nothing. THAT IS A GOOD THING! Understand that if the nurse says we are doing the same, everything is coasting, that is GOOD! Except for when we went backwards and stayed back there. We needed to get from back there, so we agreed to a steroid treatment for the lungs. This has been proven to work in almost every case. Within 5 ours she has been weaned of one blood pressure medication and going down on another. She is making progress off the respirator and is moving forward for the first time in 4 days. That is good. Having a premature baby is much like having one at your house, just without all the cute and cuddling. I do not sleep as I call or go by the NICU all night long. Momma still has to “feed” baby, however, baby is a plastic suction pumping station and we have to make trips to daycare everyday, expect our daycare is a loud, sterile environment that our helpless little girl is being kept warm artificially. Oh yeah, we can’t touch her or do anything right now. Any excitement brings down here stats and we can’t have that. So we wait. Everyday we just sit in there and watch her. Every night I come home and update her journey. I make sure to take a picture of her everyday. I don’t know what is going to happen from day to day, but I want every minute. As a parent you worry about your children getting hurt, stepping on a thorn, talking to bad kids, as a parent of a preemie, you worry that we have enough blood, or our heart rate is good, or how did our x-ray look today?
It is a different world, very different. One I do not wish on one soul on this planet ever again from this moment forward.
Yesterday another proud father brought in his video camera because his baby was up in NICU after being born are 31 weeks. He was so proud taking video of his baby lying there on the warmer bed. His child did not need respiration, just some oxygen, his child will get out very soon. He had all the hopes and happiness of a proud father, and from the looks right now, he won’t have as much as a roller coaster and I hope not. I wanted to help him understand as he was getting acclimated to the environment as I did, but he will get it very soon. They won’t leave the hospital for a few days, so he will be up there a lot. He needs to prepare his life to spend a lot of moments up here. Your children need it.
We are there everyday so that Jonna knows she is not alone. Sometimes it takes a daddy pep-talk for her blood pressure stats to go up, or her oxygen to come back. I need to be there for that. I have to. But there are some children who have no visitors. That is the worst crime I can imagine.
Alright enough blathering for now at 6:00 am, I have to get ready to prepare our day.
July 30th, 2004
Wow, what a difference. She went to a regular ventilator. She is breathing some on her own. She is still feisty. She still gets all mad when the nurses mess with her. It is so funny. I have two Quicktime movies of her that I am going to add to the web site, so you can see her strength. One is her getting up on her knees at only day 6 I think. Wow. She is going to crawl out of that bed one day I swear. I hope to talk the nurse today into laying her head straight up, she has not had that but once that we know of, she has always looked left or right. But we look forward to going today to look at our non-vibrating resting little girl. It is much better when you know they feel better. I will find a way to add the movies this weekend. Come back and look for them soon. Now I am going to cut this short, I have plenty to do so that I can go see here in all her writhing, mad, breathing glory. Maybe I can set off an alarm again. Hee Hee.
July 31st, 2004
Ok, yesterday was not that good. Last night was all right due to sedation, but that was the only reason. She has to be sedated right now because it is best for her. She is too big for her tiny lungs right now. She just does not know it.
Let me try to describe what it is like when you watch your baby de-SAT(de-oxygenate). You watch a number that is supposed to be 91-100 go down to an alarm of 84. That is when the noise starts. BEEP BEEP BEEP BEEP(Please do this the entire time you read this for true effect).
Ok, so that happens and you watch the number to see if your baby will come out of this. (Are you keeping the BEEP’s going?) The number dips down...realize that below 80 is real bad. The number goes down to 74....73.....71. Now her heart rate alarm goes off because what was once 146 beats a minute is now below 100. (Have a friend add an even louder more scary alarm sounding BRAP BRAP BRAP BEEP BEEP BRAP BRAP BRAP, keep this up) So you watch nurses and respiratory technicians zoom over your baby, one of them actually pinching Jonna so that her heart will kick start. They then try to figure out what is happening and they up her oxygen. So you hope that helps, it doesn’t so for the next 1-25 minutes, you sit and watch hoping it does not stay like this. Low oxygen too long cause problems, low heartbeat for too long causes real bad problems. (Are you and your friend still BEEPING and BRAPING, good, because this has not stopped). Now doctors are over, an x-ray has been called, the respirator is removed and reverted to hand-pumping to keep the lungs inflated. Now you have all kinds of things happening, you just want to wonder and help but you can’t. You just hope whatever is happening is a malfunction of the machine. But it isn’t, so you start thinking horrible thoughts and praying and hoping. (PLEASE KEEP UP THE NOISE, IT IS THE ONLY WAY YOU CAN UNDERSTAND THIS EVENT). And so it goes as long as it takes.
Then calm.....alarms stop and you see your baby now in the right numbers for a second....
WAIT start BEEPING AGAIN...she did not come totally out of it. Ok, start the BRAP again, bring more people over to the computer....have another crowd emerge, start the worry train again. Do this for another 10 minutes.
And wonder why you don’t sleep later on. This happened over and over for 2 hours yesterday and all day Saturday.
Take that to your house tonite and relax. It gets better after the calm.
August 1, 2004
Today, we saw our little girl resting for the first time without paralyzation. Our oxygen level is on 50% which is 30% more than you an I breathe, so we don’t have far to go. We are doing quite well when we are relaxed. She lost her breathing tube again today when some water got in her lungs and she choked a little. She is now on her third tube. Good I guess. She held my finger today and did not due any of the D-SAT tht she did yesterday. Well, she did it once, but not when she was holding my finger. You have got to see the pictures of her little hand in mine. Tiny. TINY!!! I can’t describe the tiny. But she will grow. She is still not being fed milk yet, hopefully that is tomorrow. That way we can gain weight on her 2 lb 6 oz body. Yes we have gained some, but not as much as we could. When she gets on the milk she should start gaining an ounce or more a day. Can’t wait to see some meat on them bones. That smooth baby fat look seems so appealing to me right now. I am so excited on the lung improvement, I mean she is close to breathing, but the doctors are taking it a little slower so we don’t have an episode like last week. Can’t wait to go there tomorrow and see what is up. We got some big totes today and are going to be cleaning out closet space for her. Don’t know if we will need oxygen tanks or what so we have to get ready.
We also were informed of how our first year will be. No children of any kind can be around her or us. She catches a normal childhood cough and it is hospital time. We were told to keep every sink loaded with bacteria cleanser and waterless cleansers. We were told to weekly bleach all doorknobs, bathroom fixtures, light switches, sinks, and anywhere where people can touch. It is going to be a clean clean household for our first year, but if it keeps her from getting sick, then we do it. Alright got to go now, keep tuning in and sending our site out to others. I will keep adding more and more information to get this to be the biggest prematurity site on the web. I also want to have yearly fund drives and speak for motivational purposes at NICU’s around the country. This will be the big site. There are plenty and I want everyone to learn all they can, but I will not stop until you can get all your information from here. I know I looked everywhere. We will have meetings where I can help everyone as much as I can. I can’t wait to help.
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