For three months I’ve been hanging on. I felt like there was something going on with Haddie’s health, but I was ignorant to what it was. We would go the doctor and find out she had this or that, but nothing life threatening, all manageable and she would be gaining, so all was well. Her feeding, I thought, seemed primarily difficult. Even changing her diaper was a huge task.
Peter and I kept telling ourselves it would get better. One night we finally laid in bed and he said to me, “Well, if it doesn’t get better, we’ll be fine.” Shaylea took notice. In all of the hard days, she only once said, “I didn’t know having a sister would be this hard.” She said it with a smile. In all the hardship of caring for Haddie Joy, there is such fun in it too. We are still all so thankful she is here.
The last week and a half have been a blur. I remember some of it only vaguely. There were the two nights, three days in the ED getting 1/2 hour to and hour sleep at a time between long, exhausting feeding. Picture yourself camping out with a special needs infant – only with constant beeping, screaming, talking, lights, etc. Honestly, we were just thankful for a room and a shared bathroom . . . there were several children in the hall. And I took great comfort in the fact that we were under the supervision of great care.
Moving into a regular room, which was the Hilton comparatively, last Saturday was wonderful! By this time there had already been about 7-8 (great) nurses. Peter and I weren’t exactly sure what all we were responsible for versus those caring for us. After hanging on for three months, I didn’t easily let go of managing some of her needs. The nurses or care partner would be changing her diaper, and I would tell them they were doing it wrong and if they did it that way it would make her rash worse. It was frustrating for me and the staff! But after a few days I think we began working as a team a little more. Now, when I show off the bag with all of the diaper creams we’ve tried I think I’m believed. 😉 And I also have a whole new respect for nurses. Y’all rock!
All of the staff here are great. There are A LOT of them. Haddie has more than one team tending to her needs, so that means a lot of people in and out. But I think Peter and I are finally getting the hang of life at Vanderbilt Children’s Hospital. (Ha! I say that on a weekend!) It is stressful with the load of traffic in and out sometimes and we sort of go through information overload and get overwhelmed, but we do realize (more and more each day) that is just all a part of what has been best for Haddie Joy. Everyone wants to help and they ARE helping her . . . and us. They’ve been extremely patient with Peter and me as we question everything so that we have a good idea of how to care for her once we get her home.
There have been dark days. Very dark. I miss Shaylea. I miss home. We have wondered what the quality of Haddie Joy’s life will be like if she doesn’t resume eating after her surgery. We’ve felt helpless, defeated, overwhelmed, confused and inadequate all at once.
I wrote this update during the darkest day yet . . .
There are a lot of unknowns, even from the doctors’ perspective. Peter and I are struggling. It IS more than we can bear to see her in pain. We wonder often if our decisions are right. We feel completely inadequate. We are not strong as some of you think, we are actually pretty much falling apart But in all of that, there is the Truth that we cling to: God is working this somehow for His glory. It has never been about us being good parents or strong or anything like that. When you pray for God to use you, you open yourself up to life bigger than you can handle. I am struggling and am a mess, but I can’t help but be thankful. Thankful to be here, broken, scared, anxious -all of it. Here is where I end. I’ve never given more of myself, or been more diligent or loved more in all of my life and it is simply not enough. Praise God. I’ve ended, there is nothing left- but God is still God. He is more than able to take care of it all. Praise Him for the miracle of Himself.
Then came rest. Haddie Joy had the same nurse for the 3rd night in a row and she was tolerating feeds much better, so we took everyone’s advice and got away for the night. It’s pretty bad when you tell the care providers you left for the night, and they already “heard”. Ha!
Peter and I were able to go to chapel together this morning. It’s the first service we’ve attended together since Haddie Joy was born.
The hymn we sang, really ministered to me.
The Gift of Love
Though I may speak with bravest fire,
And have the gift to all inspire,
And have not love, my words are vain,
As sounding brass, and hopeless gain.
Though I may give all I possess,
And striving so my love profess,
But not be given by love within,
The profit soon turns strangely thin.
Come, Spirit, come, our hearts control,
Our spirits long to be made whole.
Let inward love guide every deed;
By this we worship, and are freed.
Haddie Joy will be having surgery Tuesday. It is a big deal for a little bitty body. After a lot of prayer and questioning doctors, we feel we are doing what is best for her. In all that we’ve been through I pray that we have ministered this kind of love to others. I know you all have to us – so none of any of this has been in vain. God is good.
Pray for Dr. Bichelle and his team this coming week.
Love you all,
PS – Thank you for caring, reading, loving, praying, serving, giving – all of it – THANK YOU. You are all making a difference in our lives everyday and we are so undeserving, but very grateful.