I second-guessed myself today. Yes, I took that road where I wondered if Dave and I have done right by Lily, if we've made the right choices, including that decision to let her live. My second-guessing had nothing to do with how difficult life has become for me. My second-guessing had everything to do with how difficult life has become for Lily.
Her CT scan was today. With the doctor's suggestion, we opted not to have Lily sedated for it. I guess that meant that she would have to be awake for the IVs, and awake she was. All four tries. It was heartbreaking, and as I tried to calm her cries and endured her begging eyes, I couldn't help but wonder what are we doing to this child? And I had to be the strong one and tell her it was ok and convince myself that it could be worse and continue to let them prod to find the vein that would allow the fluid into her little body. I had to remind myself that exercise hurts, but it's good for us and think of today in the same way. How many times did I say I'm sorry? I choked back tears a number of times. I finally had to tell the nurses that's enough for today. But when is it really going to be enough? How much are we going to put Lily through to find this or solve that?
I'm letting her rest now. I'll probably pay for it tonight. Oh, I will pay for it tonight. But she had a pretty traumatic day, so I'm letting her sleep the incident away. Hopefully, when she wakes up, she'll have forgotten that it all happened, and I'll get those smiles that light up the room and my heart.
On a happy note. . .Lily weighed 10' 12" on Wednesday! That means she's gained a whole pound in a month. The nephrologist appointment went well. The connection between the urethra and the bladder is good. He'll see her back in three months. Blood work did reveal that her calcium levels in her kidney is a little high, but the doctor thinks it's because of the Zantac. Also, her liver seems to be inflamed. I don't know yet what that exactly means, I was hoping to find out after today's scan, but it looks like we're going to have to wait for that.
i find myself wanting to "fix" this right now..finding myself searching for the words i'd want to hear if i was you..is that ok? to tell you what i'd want to hear? even if i'm wrong? because i want to reach thru the computer and tell you I am so proud of you. God is SO proud of you! 4 or so months ago, another blogger i follow gave their baby girl back to God and my husband and i were thankful that God had saved us from that sorrow of having our girl for so long only to have to let go. BUT...we also realize others have said the same thing to us, having lost their babies at 13 weeks gestation, etc. And we say we wouldn't trade our 9 months with her safe in my womb..or the 27 hours we got to watch her tiny pink chest rise with every breath. I am so grateful for you...that you get all this time with your lily. She blesses me..and as a mom who lost a t18 baby girl, when others tell me that my daughter's short life blessed them...it really does count for something.
ReplyDeleteI will be offering up my days ahead for your heart..and for lily's. peace to you.
I'm sorry that Lily had a hard day. It must be so hard on you. I think about you and Lily so often. And I just love seeing her pictures.
ReplyDeleteHave you ever heard of Emla cream? It is a topical cream that can be placed prior to blood draws/and IV pokes to completely numb the area. You can ask the dr if he would be willing to use it for her. It takes about 1 hour to take affect and you might have to have it placed in more then one spot in order to increase the chances of a failed attempt but it really works.
You have to use it right so it will work affectively... you must place a LARGE glob on the area and secure it for at lease 1 hour using "opsite" (a transparent sticker used with an iv)
Try Jennifer's suggestion about numbing the site. When my daughter was treated with IV drugs to battle a blood disorder, the doctor started numbing the area with Lidocaine. Anyway, it was so hard before watching/listening to her cry with each stick. Sometimes it took 5 sticks. Our pedi was great at getting it on the first try, so we had to stop letting the nurses try and would wait on him. The surgical nurses are sometimes better than the floor nurses, too. Anyway, Shelbi had to be treated (the only treatment when the steroids didn't work) so we had to learn to accept it. :( BTW She was 1 1/2 and was hospitalized with an IV at least a dozen times for 2 years until they got it under control. She's been delivered for 10 or 11 years now and it's all a distant memory (for HER).
ReplyDeleteStill praying for Lily a healing. In the meantime, we'll pray for as little discomfort/pain as possible. God bless.
Oh I know that pain...it's so hard sometimes to find a good vein in our babies. But they are so resilient - and able forget what happened!
ReplyDeleteI too love this photo. Jill, ask if you can call ahead to have the trauma team, kangaroo team, whatever it is called. If you are at a medical hopsital they should get this for you. They have a small ultrasound machine that will identify the better viens. Beside how tiny their veins are, Annabel's pops as soon as they are found. She has been stuck up to 21 times after being put to sleep. That is unforgivable. You are her mommy and just if there is ask for the ultrasound machine. Praying for you heart and your worries. Just recently after her surgery I had these same thought. I wanted God to reassure me that I need to keep trying. There are times that I pray he just take her if I am to stop trying.She is so beautiful.
ReplyDeleteYou're in our prayers.
ReplyDeletePlease don't second guess yourself. Lily has experienced love and that is something she never would have felt if you guys hadn't made the choice you made. I know it must be so hard to see Lily suffering at times like this and can only imagine how strong the two of you must be. You're in my prayers.
ReplyDeleteThis may be one of my favorite--if not my very favorite--pics of Lily. That face is alive with truth and hope. Wednesday I was able to catch my Bible study ladies up on how she's doing, and they were on the edge of their seats. I know the prayer-God connection gives them a special love for her. May we be the first to wish Lily a happy 9-month birthday and many, many more. What a doll!
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