I Need You So Much Closer

>> 11.08.2009

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.
Eleanor Roosevelt

Wow. People say that life is a roller coaster... and I don't think I have ever been hit with the truth of that statement until now. We can go from elation to fear in mere hours and I have to admit that my emotions are getting just a wee bit fried. Have I ever mentioned how much I HATE roller coasters?!

On Friday, Liam was doing absolutely fantastic on 1 liter of oxygen so they decided to take him completely off his cannula. They told me when I called to check on him around noon. Because I cannot drive yet, I was going to have to wait to go to the hospital but I was so excited to see his little face without that breathing tube. I called back around 8:30 that evening... and they told me that he didn't make it; his heart rate started dropping and he was huffing and puffing so they put him back on the oxygen. They put him at 2 liters but that didn't cut it so he had to go back up to 3. They were doing blood work and a chest x-ray to see what went wrong.

His chest x-ray just showed that he lost some lung volume and his blood work came back clean so we took a deep breath and relaxed. We were assured repeatedly that this is just a preemie thing- they might play this game for a few weeks before coming completely off oxygen.

By Saturday, he was back at 2 liters of oxygen but his respiratory rate was rather accelerated. They were keeping a close watch on him and never felt that it was enough to warrant putting him back up to 3 liters so we were feeling grateful for that. He was still gaining weight and looking good so we went home Saturday night feeling settled again.

At noon on Sunday we walked into the NICU and received a very different story. The nurse was standing over Liam's isolette and immediately asked if we had been called by the doctor or nurse practitioner- not a good sign. My heart completely sank.

The nurse explained that Liam is requiring more oxygen, his heart rate is up, and there is green discharge coming from his tummy again. They stopped feedings and had ordered another contrast x-ray for this morning. We still haven't heard the results of the tests. He was headed for the x-ray when Ryan called a few minutes ago. Up. Down. Up. Down. Loops. Twists. Turns... and we are only at the beginning.

One thing that I am having a difficult time swallowing is the nurses' insistence that touching Liam is not good for him. My mother came up to visit yesterday with one of her pastors- we went in to see Liam and he was WIDE awake. I have never seen him so alert and curious. He was looking all around and when I would talk to him he would turn his head and look right into my eyes. It was amazing. Occasionally, he would lose focus and his little eyes would cross and he would make the funniest face. He can usually only make it for a few minutes before sleep claims him again but we were there for over half an hour and he was bright-eyed the whole time. I wanted to love on him so much while he was awake, but the nurse told me that he did not need to be touched because she thinks he is getting sick and to just leave him alone. I have to tell you.. I have only been a mom for a few days and I have not even really had the chance to be a mom in the true sense of the word...but it is still difficult to listen to someone else tell me what to do with my child, especially when I am not sure I agree.

I had recently read this study which talks about the different types of touch preterm infants receive and how it seems to affect their well-being. We have been told that stroking Liam provides too much stimulation to his fragile nervous system; however, when we go during our "hands on" time we are encouraged to "cradle" him by placing our hands gently on him without stroking or rubbing. This study seems to back up this type of touch. It goes on to say that the medical touch that preterm infants receive most frequently (during medical procedures and such) can have negative affects. The problem is that Liam only has 4 "hands on" periods a day... and we are usually only able to make it to one or two of them. Two happen while Ryan is at work and one is at midnight. The only one we make consistently is the one at 8:00 p.m. and often we don't even get the chance to touch him because someone assumed we weren't coming and already took care of it. When we do make it, we take his temperature, change his diaper, wipe his mouth and then have a few minutes to love on him before closing him back up in his little box. Once I am able to drive again [WEDNESDAY!!], I will certainly be there more frequently during the day... but for now the majority of the touch my baby is receiving is cold, clinical, medical touch that cannot possibly be doing him any good. And then when I am able to be there, if it is even five minutes after their set time, I am told not to touch my own child. It just makes me angry.. and I have to remind myself to retract the claws because it does no good to kill the messenger. The nurses are just doing their jobs. But his heart rate and respiratory rate slow down whenever our hands are on him; everything in me disagrees... and sometimes I just want to scream at someone to BACK THE HELL OFF and give me a minute with my baby.

Okay. Thank you. I just needed to get that off my chest. Moving on....

I found this video online today. At the end it says something about a NICU baby's health regressing before it gets better.. and how this is normal. Every time the doctor tells us something new I ask, "Is this normal?" and they say yes. Everything Liam has faced so far is normal for a preemie of his size and gestational age. I also found this article about a miracle baby. I hold onto things like these to keep myself from losing it every time we hear a not-so-great report. We are not alone- other families have faced this. They made it. He will make it. It is normal. Normal. Normal. Normal.

I want so much to be able to look at all of this as a lesson in patience and courage and faith... and to know that we will overcome this and it will soon be a distant memory. I am really trying.



KarmaPearl November 9, 2009 at 12:27 PM  

Look at those perfect little toes in that picture.

I can't imagine someone telling me that touching my baby was bad for her. I think you're controlling yourself better than I would.

One day at a time... Celebrate the little victories and take deep breaths as the setbacks come. That's really all one can do sometimes.

Julia November 10, 2009 at 7:41 AM  

WOW... This must be so hard. I couldn't imagine not being allowed to touch my own child. It IS hard to understand that it helps to leave them be... I hope you can drive soon so you can spend more time with your son. I hope he make great progress in the coming weeks...

Toni November 10, 2009 at 12:31 PM  

*hug* I've been thinking a great deal about you, Michelle. I agree, I think you should polietly express your concerns, even ask your pedi if you could touch him more, or at least ask the reasons why you cant, specially, what will happen to him and can you possibly base it on his heart rate and such.

I agree that touch is very stimulating and yes, Liam wouldnt be receiving as much stimulation right now if he was still in the womb, therefore I understand the long sleep periods and such, but if he is alert and even interacting with you by turning towards your voice, which is HUGE, then you should be able to interact back as well with a touch.

I know some research points strongly to preemies being placed on their moms and dads chest for physical contact.

Please let me know if you need anything. I can also get you in touch with other parents or you can contact Beth Oldam at Siskin Children's Instistute-Downtown. 648-1700

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