Lucy isn't doing too hot. I took her in to get weighed the other day and she was down 3/4 of a pound. We called the doctor who is in charge of her feeding schedule and I was told it was my fault because I wasn't feeding her enough. I was super annoyed. My life pretty much revolves around feeding Lucy and getting enough food in her. The problem is she throws up a lot. It's not spit up either. It's violent vomiting. It's so sad, she's always so tired and sweaty after she throws up. It's like having a child with the flu, all the time. I'm so discouraged because she never did this before she got her NG tube. I thought that after her surgery she would be able to come off the NG tube or that her weight gain wouldn't be as much of an issue.
The cardiology appointment we had before we left Kansas City didn't go as well as I would have liked. Her cardiologist who is generally pretty optimistic left us feeling discouraged. He thinks Lucy won't be able to make it until she's six for her next surgery like we thought. Lucy is having another cardiac cath in Sept. They'll be able to get a better look at her heart and possibly put in a stent. They will also get rid of her collateral arteries. We hope this will bring her oxygen saturations up. Right now she running in the mid to high 80s. The cardiologist stressed how important it was to keep her weight up. Ug.
My girls are almost a year old. When they were born we told ourselves we just have to get through the year and then things would be so much easier. In my mind I really felt like at a year Lucy would either have died or be mostly better. I was so worried about losing her I never considered how hard it would be to watch her be so sick. Right now I'm working on a mind shift. It's been a little hard to come to terms with the fact the my daughter isn't fixed despite having, "a full repair." I hear so stories of kids with this conditions where the mom will say, "You'd never even know anything was wrong." I definetly don't feel that way and I doubt I ever will but I'm grateful for what we have. We have been very blessed and being in the hospital so much you definetly see others who have it so much worse.
Lucy is extremely jealous of Hazel's ability to crawl. As much as I hate watching Lucy cry because she can't keep up, I know it's motivating her to try harder. Right now she just doesn't have the strength to crawl but she's making progress and she tries so hard.
This time of year is particularly significant to me not only because of the girls' birthday but because July is when my brother was born and died. If he hadn't been born with a heart condition he would have been 25 this year. My parent's never knew why they had to lose their child and go through such a difficult thing. I know that my parent's wouldn't have been able to be there for me the way I needed them to without that experience. Not many people could have given up so much for their grandchild. I couldn't have gotten through this year without my parents. They truly showed what bearing one another's burdens means. I didn't have to worry alone. I really believe that when we carry someone else's burden it becomes easier from them. The day Lucy was put on life support, no one was able to comfort me. My parents and husband were all a mess but for some reason I was okay. I really believe it was the prayers of so many people. Not only the prayers, but the act of carrying the worry for me. I know my brother was around a lot this year. There were special moments in the hospital when I knew he was there. My parent's experience has helped give me the faith that my family's trials will serve a greater purpose.
6 comments:
Oh...I don't even know what to say except that I love you, and if you need someone to cry with, I'm always available. :)
It makes me happy that you are in Utah. I've missed you.
It is hard when what we imagine and reality don't match. I've had a bout or two of that myself in my days. I understand that sense of loss and confusion. I'm sorry it is happening to you. Here's hoping that you find moments of peace and joy in your new reality.
And here's hoping the vomiting stops!!!
Oh girl, you turn me in to a bawl-baby! I'm so glad you're here! I know it's gotta be tiring being in someone else's house with someone else's grandkids always in and out! But we're glad you're here and we can get to be a part of yours and your kid's lives for a little while. XOXO
How great that you have such a loving and supporting family. Those girls have so many people cheering them on and praying for them every day. I know it's been a hard year and it's hard to think ahead to that day when you look back on all of this but it will come. As long as you take one day at a time and trust in the Lord as you go you'll continue to receive miracles and blessings.
Glad you're having a good time while away. And Happy Birthday to those little girls in a few days! I can't believe they're one!
I have a good friend whose daughter has a g-tube--has had it for about a year now. I mentioned to her how Lucy was throwing up so much, and my friend got tears in her eyes and asked me to tell you this: Her daughter began to throw up with every feeding when the g-tube feedings began. She said she'd get sweaty palms and cry every time she had to feed her daughter because it was so horrible to watch how sick she'd get. The doctors said the same things to her as yours say to you--Get more calories into that baby! She has to gain weight!--but all of the throwing up was so traumatic and pointless that her baby didn't gain. But then she did the opposite of what the docs said--she reduced the amount of food in the tube. The smaller feedings helped her stop throwing up and the baby begain gaining weight. She now feeds her daughter about 3/4 of the calories the docs have told her to give her, but she's gaining weight and is healthier than she ever was when she tried giving the full amount because she stopped throwing up.
I don't have any experience with the struggles you're having, Eliza and Chuck, but my friend asked me to relay this information to you because she does understand. She was very passionate about asking me to send you her story. We both hope that Lucy feels better and grows big and strong!
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