9:00 pm - For the first time since entering the hospital on Friday morning, I have no news to report. Nothing. Nada. And I have to say, it feels great. So, good night, friends!
3:00 pm - Sorry this update is so late...I've been busy HOLDING and BREASTFEEDING my baby who has been moved to the high flow nasal cannula!! Yes, I realize that I sound like I have a mood disorder if you read through all of my posts - one minute happy, the next minute sad. But as I have said before, it is all just part of the ICU rollercoaster ride. And although I went through it previously when Hayes was in the NICU, I am having to relearn how to ride the highs and push through the lows. Speaking of highs, I had another miraculous moment this morning that lifted me up more than words can say. While spending time with my favorite little man, a social worker came in to ask if I would mind being part of a story for Channel 11 KHOU. The story is based on an amazing organization called Emma's Hugs which provides random acts of kindness for families with children who are hospitalized. And of course, I agreed. I was blessed to not only receive a pre-paid parking chip to help alleviate some of the costs associated with parking at the medical center, but also to be able to meet an inspirational couple who are honoring their angel in such a beautiful way. If you have a minute, I urge you to check out their organization and read some of their stories of impact. I cannot wait to write one of my own!
9:00 am - Okay, so you know that part of the rollercoaster where you go way up to the tippity-top and feel that rush of excitement pulse through your veins...and then all of the sudden you come barreling down to the bottom while holding back the screams and vomit? Yeah, that's pretty much how the past twelve hours have gone for us. Last night, we were at the tippity-top - losing tubes, getting a chance to hold, feeling great. And throughout the night and into the morning, we have made our way on down to the bottom - problems breathing, little sleep, and tears all around. Hayes has had to be moved from nasal cannula to CPAP. And although I know it is only another minor setback, for some reason it just feels like the end of the world. I guess it is probably because I have just hit my wall. (Ask any NICU or PICU mom and they can tell you - there is a wall, and you will hit it sometime.) I am tired of these four walls, the machines, the tubes and cords, pumping, the lack of sleep, not being able to hold him at my will, and more than anything else - I am tired of that scared and upset look in his eyes. It fills me with the worst feeling in the world. I know that things will get better...and I know that overall we are making positive trends upward...but this is hard. And I am tired.
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8 comments:
Stay strong! You are an amazing mother. You and Hayes will pull thourgh this! I will keep your family in my prayers!
It's harder than I can ever imagine! Sending you LOTS of support and love.
Oh my friend. I have been there. I know exactly what you are talking about - when Quinn was so sick after her first surgery and we seemed to have constant setbacks, the absolute worst was not seeing the usual joy in her face. I am praying for you. You all WILL get through this. Hang in there, momma. And try to get some rest as well. I know it's difficult, but Hayes needs his mommy as functional as possible, especially as all these critical decisions are made. Lean on Him for guidance. I will claim Jeremiah 29:11 for you all as you walk through these difficult days. Please let me know if I can bring anything to you at the hospital or drop off lunch or something.
You and Hayes are in my prayers. I am sure you are to the point that you think this will never end, but it will so keep remembering that Jesus is with your little boy and He has stationed angels around Hayes' bed. You are an amazing mom and I keep thinking about that sweet little girl at Care a Lot Corner. Virginia Greer
Kelly, I know about the wall that you are talking about. I also hit it when Tobias was in the NICU. Try to get some rest, even if is just reading a magazine or wathicng TV for 30min.
I am sure that Hayes will start feeling better in no time and everything will be back to normality. I will pray for it to be sonner than later!!
Carolina
Just finished praying for you and then came over and saw the last update - yay!
I'm so glad things are going better and that you've been able to hold your little one. Keep up the good work. Many prayers.
congrats on hayes! what a special little boy. i am enjoying reading your blog. it brings tears to my eyes becuase i went through this with my daughter fourteen years ago. protocol and procedures were very different but still emotional. my daughter is amazing, smart and active. one would never know her history. i would love to talk to you because i have never spoken to anyone that has been through this. i wish your family all the happiness!
karrie
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