• Jessica and Liam’s Update

    Date: 2016.03.12 | Category: Adoption, Elyse, Jessica | Tags:

    Life has been interesting since we got home on the 4th.  We arrived home Friday night and Sunday morning Jessica awoke with a temperature.  We  already had an appointment scheduled for Monday morning with the pediatrician so we started antibiotics and planned to see the pediatrician Monday morning for some lab work.

    Her lab work was worse than we had hoped. Dan called the nephrologist and urologist at the children’s hospital and they fit her in for an appointment on Wednesday.  Grace and Elyse, who were trying to belp, had told Jessica that this was just an appointment and that she would not be admitted to the hospital.  Jessica was comforted by that.  She had been hospitalized and gone through surgery alone in China.  She was very fearful.

    We had her appointment where they changed her Foley catheter and drew labs. We left with a plan in place to get extra tests and go from there.  Unfortunately, as we finished eating, our phone rang and they asked us to come back to have her admitted. The lab results had come back and they were worse than Monday’s. She is extremely anemic and her labs were showing her kidneys to be working at about 15%.  We needed to start an IV and try to stabilize her electrolytes

    The good news is that Jessica (JJ) had a few good days at home and had bonded with Gracie and Elyse.  JJ did not want to be part of much that was going around the house.  She doesn’t like American food. She doesn’t necessarily like adults. It’s been interesting to say the least.  We have never had a child that wasn’t at least pretty comfortable by the time we got home from China.  It’s going to take JJ a very long time to trust us and to know that we truly love her and will never leave her. Add on a hospital admission and the time to trust us extends even further.


    On the other side of the coin is Liam.  He looks like he has been here forever.  He is right in the middle of the littles all the time.  He likes the food, especially the treats big sister, Cassie, bought him.


    He likes the kid’s schedule. He likes the toys they play with.  He likes to snuggle up with them to go to sleep.


    He likes pretty much everything.


    I am thankful that he has adjusted so well. It would have been horrible to leave him otherwise.  He loves to FaceTime and show me what he has been doing.  He is the happiest, silliest little boy.  Everyone adores him!

    The prognosis for JJ is complicated.  We don’t know where her baseline will ultimately end up.  Today her labs were better and her kidney function was about 20%.  The formula they use to figure your GFR takes many things in to account.

    Dan was at work today and the nephrologist sat and talked with me for quite awhile about what was to be expected in the future.  Of course there are many variables but we know for certain she will need dialysis and ultimately a transplant. There has been too many years of damage and scar tissue.  We had hoped to get to her in time to reverse some of the damage and avoid a transplant. I know now that isn’t possible.

    Her bones are almost see through from calcium loss and lack of vitamin D.  She is extremely anemic and will need weekly shots to help her produce red blood cells.  The doctors are trying to avoid transfusions because of the need for a transplant.

    She’s very sad and hasn’t been eating or drinking very much.  Elyse reminded her that she has to be able to take all 5 meds by mouth and drink and eat well to get to come home.  This afternoon she did much better.

    The nephrologist said he isn’t sure whether she will need dialysis in a month or a few months.  We will know more in the coming days.  We know anything under 50% kidney function leads to dialysis at some point in your life.  We know she will lose approximately 3% kidney function a year. We know lower than 20% and they start talking transplant.  We know a number of 15% gets you dialysis.

    She will have a sedated MRI and CAT scan on Monday to look at her back and hips.  We were lead to believe she had spina bifida but that isn’t true.  Her little legs are very contractured and very, very small.  Her back has many fused and misshapen vertebra.

    Genetics, orthopedics and neurosurgery have been called for consults and they have ordered the tests they need to figure this out.

    From her X-ray, we know she has pretty severe “s” scoliosis.  From the renal ultrasound we know her kidneys are very small.  At one point the lab tech left to get the physician and the physician informed me the kidneys were the size of a newborns and he wanted me to get my husband, who is a physician, so he could talk to him.  They aren’t quite that little, but they are very small.

    She needs urodynamics and other tests to see what else is going on. It’s a lot for a little girl, who is already hurt and fearful, to go through.

    She will let me comfort her after her procedures.  This picture is after they placed her PICC line.  When I rub her head or hold her hand, she pretends to be asleep so it isn’t like she is giving in.   You will see her look out under her closed lids and shut her eyes really fast and she sighs and leans into me.  It’s her way of being comforted without acting like she likes it or needs it or giving up control.


    She is one tough little girl.   She is spunky and stubborn and a fighter.   I know this is what has kept her alive and fighting.  I respect that and will give her the distance and time she needs to feel safe.  Someday she will accept our love and know what family means.

    We knew the possibilities going in.  We were as prepared as we could be.  We were hoping we were wrong but knew in the end it didn’t matter.  She is our daughter and you fight for your children.

    Hopeful for more time for her to adjust before dialysis needs to start but we will do what is necessary to give her the very best chance at a happy, hope-filled life.

    Because she is worth it!!!