Heading home and into the holidays

Hi everyone,

I'm so sorry for the delay in giving an update. Evelyn and I came home from the hospital Thursday afternoon. After many tests and procedures here's the summary. Evelyn had a UTI which was probably causing her body to struggle with her already low hematocrit and platelet levels.
The vomiting was probably because she was getting too much food at night and the blood in it was probably from her body's inability to heal her delicate stomach effectively. As much as I hate being in the hospital (which is only half as much as Evelyn hates it), we are so relieved we stayed. Again, I credit our great and caring God for helping the doctors put symptoms together. The visit was, in the words of her nephrologist, a tune-up. She had a blood transfusion, which immediately perked her up. We also adjusted her existing medications and finally added some long anticipated ones--blood pressure medication, red blood cell hormone shots, growth hormone, and acid suppressant. The most difficult part of the visit was realizing this was not the last and that many of the medications she's starting at two years old (blood pressure and growth hormone) are either for life, after transplant, or until the end of puberty. On the other hand, the best part of the visit was watching Evelyn get sillier and happier as she felt better. I'm now very motivated to get Evelyn potty trained (I can't take holding her down for another catheter). My shingles are feeling much better. I'm guessing they will disappear within a week and there is no sign of Ada coming in contact.

We are again so grateful to everyone for meals, childcare, prayer, and notes of encouragement. We are indebted to you all for caring for us on His behalf.

Love from all of us,

Julianne

Thanksgiving and transfusion

feeling better

Email sent 11/28/11

Hi friends,

Well, after a brief hiatus from drama we're back in the thick of it. Evelyn was admitted to Children's today with very low platelet levels, low blood count, raised creatnine (an indicator of her kidney function), and unexplained vomiting of blood. And while Keith was at the ER with Evelyn I was at the doctor's office investigating a mysterious rash on my back and chest. It turns out it's just good old fashioned shingles. It's uncomfortable but that is not really a big deal. However, the doctors are concerned that Ada could get chicken pox from contact with my rash. Please pray for our sweet babies and for health all around.

Mentally and emotionally I think we're holding it together. I go between weeping and laughing within moments of each other. I've got Western State on my speed dial :o). As I was driving to the doctor's office today I thought back on my last year of Regent when I experienced a lot of difficulties and found Psalm 13 very comforting ("How long, LORD? Will you forget me forever? How long will you hide your face from me?"). I realized today I don't feel forgotten. I'm perplexed and sometimes without words to say why all these things have continued to push us to our limits but somehow I have begun to understand the end of that Psalm "But I trust in your unfailing love; my heart rejoices in your salvation. I will sing the LORD’s praise, for he has been good to me." I'm glad you all are walking with us because I believe, in this life or the next, we will see His goodness in all of this.

Julianne

Normal chaos returns home

Email sent 9/17/11

Hi everyone, After more than 30 days in the hospital our latest addition came home Thursday afternoon. She seems happy and healthy (7 1/2 lbs at 39 weeks!) and her sisters adore her. Thank you for all your love and concern. Please pray for a smooth transition (as smooth as a newborn allows). Our life seem to be returning to its usual chaos.

love, Julianne & Keith

The wait is over

Email sent on 8/13/11

 Hi Everyone,

Ada Claire Sherman was born at 2:29pm today. She weighs 5 lbs, 4 oz, is 18.25" long, and looks marvelous. She will most likely remain in the NICU until her due date (Sept 25), but we are encouraged with the initial prognosis. Julianne had another blitzkrieg natural birth and as usual she bounced out of bed and took a walk. Thanks to everyone for all your prayers and support.

-Keith

A "bump" in the road

Email sent 8/11/11

Hi Everyone,

For those who haven't heard, Julianne came to Swedish Hospital in Seattle yesterday morning after her water broke. Since the baby is six and a half weeks early, the doctors have tried to cool down the process but the contractions have grown stronger and we expect we'll have a new addition to the family in the next day or so. Julianne is in good spirits and the baby appears to be above five pounds in weight (a decent size even for full-term).

It's been an eventful week so far, a capstone to an eventful year. Between Evelyn's kidney disease, ML's medical issues (we had to postpone her operation yesterday), several scary accidents on the job, my loss of eyesight (which I have now fully regained), losing our last baby, and Julianne's troubled pregnancy, we have had our hands full. In spite of all this, we have an powerful sense of God's presence and overwhelming grace. I do ask that you would pray for us now however, as there are concerns with a premature birth.

It is hard to hold back tears now as I think all for your encouragement and support. We are profoundly blessed with an amazing family and good friends. I'll keep you posted as to Julianne's and baby's progress.

"God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
though its waters roar and foam,
though the mountains tremble at its swelling."
       -from Psalm 46

-Keith

First hill of our journey

Email sent on 5/29/11

We've been trying to finish an update for a few days now but haven't got a chance. I'm unexpectedly sitting in Children's at the moment. Having awoken from a fitful rest on a hospital cot I am seizing the opportunity. Evelyn was admitted yesterday for an installation of an NG (nose feeding tube). She was a bit dehydrated (for those of you who care about details her creatnine levels were up from .7 to 1.1 and her potassium was low) and of course her growth is in crisis (she lost weight since her last appointment even while giving her supplements and restricting protein). So to avoid a health crisis while we wait for the g-tube (stomach feeding tube) installation (which should happen in the next month) we decided to give her little body the help it needs right away. She's doing really well--she's such a trooper. Both Marilouise and Evelyn had fevers yesterday. So in the midst of being ill (have you ever seen a very active and happy 18 month old wilt like a flower in some heat and have to endure poking and prodding?...I started crying at 2:00 and stopped around 6:00). The installation went as well as can be expected when you are stuffing a tube down a child's nose all the way to her stomach (think gagging and sputtering). They've been running the pump at the level we'll run it at home since about midnight and she seems to be tolerating the amount well. We hope to go home today with a pump and newly acquired skills. Good news: After a long night of nurses checking vitals, talking to momma, crying and asking to be held little Ev is sleeping. I've had a latte from downstairs and I'm about to steal away to the cafeteria. I feel peaceful. My parents are saints and drove down to take care of ML last night. My friend Kirsten is a NICU nurse and is willing to help me in this new adventure. Immediate prayer requests: Pray Evelyn doesn't pull out the tube because guess who got trained and gets to put it back in the event an 18 month gets curious. Pray that she reaches her normal weight and height with the help of the tubes and that eating in general becomes joyful in our house again. Longer term prayer request: Pray for a transplant match. We did find out at the appointment on Tuesday that it is only a matter of time before Evelyn will receive a transplant. We already knew this in theory but now the doctors are trying to help us understand the road map as if we are actually driving not just talking about a trip we might make some day. She's currently hovering at just below 18 pounds and she will need to be 25 pounds to receive a transplant. Pray that she reaches the minimum weight before she needs dialysis (preemptive transplant is an option and if it is right then we'd like to consider it). The doctors are sort of hinting at transplant in the next few years. Thanks for praying and loving us through this.

 Love, Julianne

How family pictures are made

WWF

The starting line

Email sent on 3/23/11
We didn't know at the time this was the start of a long marathon.

Hi, family,

I only had the energy to call mom yesterday but I wanted to let you know what we found about Evelyn on Monday and Tuesday. We're startled and worried and would appreciate your prayers.

• Evelyn's in stage three chronic kidney disease (50% function). They're not sure the cause yet but we have another appointment the end of April so we'll be investigating for a while. They'll do her blood work again to see if reducing the protein in her diet (i.e., removing cow's milk from her diet) reduces the stress on the kidneys. At this point, the doctors are saying this is most likely as good as it gets for Evelyn and that all the work we are doing is to maintain her kidney function, not so much to improve it. We're fortunate in many ways because stage four usually means kidney dialysis and state five usually means transplant so we're thankful for where we caught it.
  
• She's anemic, which is another indication of the disease. Her body is probably not producing the hormone that signals the body to generate enough red blood cells. Most likely, we will start giving her shots of the hormone next appointment and then they will teach us to administer them every couple weeks.
• The most critical issue at the moment is her growth, a bi-product of the disease. Since our largest growth spurt is from 1 - 3 years old, which is entirely dependent on caloric intake, and she has a lot of catching up to do, they want us to consider a G-tube to help us tackle this (installing a feeding tube into her stomach). We've switched some things in her diet (lowering protein, raising fat and carbohydrate). She's not very excited about rice milk and she misses yogurt but I'm persisting.
  

Her prognosis is not good but I want to maintain hope and belief that things will be better than expected. We're just really tired. We've been living an emotional roller coaster. We'd appreciate prayer against anxiety and doubts that God cares (because in my mind I know He does but I feel myself slipping into despair that I'm going to lose my baby). Prayer for thankfulness and peace, that she'll eat really really well and that I wouldn't fixate over every bite and sip. Wisdom in decision making and hope for the future (no matter what is in it for us).

I'm sorry for not calling each of you individually I'm just feeling really worn out. I'll resurface very soon and call each of you.

Love,
Julianne