Tender mercies

All along "our Journey" with Hyperinsulinism we were blessed over and over again with

 Tender Mercies from the Lord.

When we first were admitted to the PICU at Cardon Children's hospital, and were going through many tests to figure out what was causing Ruth's hypoglycemia, we worked with many gifted doctors and nurses. The obvious thing to test first was her insulin levels. But at first check they didn't seem higher than normal, so other things were checked. When everything was coming back normal, they decided to see if a continuous feed would stabilize her blood glucose. When it didn't work and her levels dropped very low again they tested her insulin level again and it was high this time. This pointed to Hyperinsulinism, which is very rare. In fact, our regular pediatrician said that she is the first child with HI that he has ever had in his 30 years of practice. BUT, just a few months before us the hospital had had another child come in with Hyperinsulinism! So the endocrinologist and other doctors on the team had just experienced this and knew what drug to try for her. And when it didn't work, they knew that we also needed to be transferred to the Children's Hospital of Philadelphia, just as the other little baby boy had done. And they already had experience with getting insurance approval, scheduling a medic flight, and dealing with the people at CHOP about transfer. Wow, it was so great! That alone was a Tender Mercy, but on top of all these blessings that came from being at Cardon Children's, verses being somewhere else, there was another truly sweet tender mercy. I was able to talk with the mother whose baby had gone to CHOP just a few months before us. She called me on the phone and told me all about her experience with being in Philadelphia. She told me about CHOP and what to expect there. She told me how long it took them to get a PET scan, then surgery, then how long they were in the NICU afterwards and then what to expect next. It was a great comfort to me knowing somewhat to expect when I got there with my sweet little baby too. It was a blessing to me to be able talk with someone who knew EXACTLY what I was going through.

Secondly, Ruthie was HAPPY. 

The whole time we were chillin in the hospital, Ruth was on an IV that stabilized her and she was perfectly content and happy. Actually, she was a real JOY to be around. 

It was good timing because it was before she got to a stage where she was wary of strangers or anxious about being separated from me. So the nurses loved her, which softened the hospital experience. 

We found a lot of great friends in those nurses. They often offered to hold her if I needed a "break" from being in that hospital room with her ALL DAY.

Another blessing was having such a huge support group from our church family (our "ward"). People in my ward watched my other children many many times and days so that I could be with Ruth in the hospital. And they came to the hospital to be with RUTH too so that I could go home and be with the other kids every day. I never had to worry about my babies. Wonderful ladies from church even came over one day and cleaned my house! That evening when I got home to spend time with my two older daughters, I didn't have a single care to worry about with the house, I could just enjoy being with the kids. It was such an amazing blessing and Tender Mercy from the Lord.

When the doctors told me we were being transferred to CHOP I didn't fear going across the country all by myself because I knew I would have The Church there. And I knew it would be the same as it is back home, just as it is the same all over the world. I was able to contact the local leadership in the ward there in Philadelphia for The Church of Jesus Christ of Latter-day Saints and they found someone in the congregation who lived close to the hospital that could pick me up for church. I couldn't have asked for a greater blessing. The ones that came to get me that first Sunday from the hospital was a young couple from Washington. Jeff and Amber were so nice to me. Going to church gave me a sense of normality, a battery-recharge and spiritual uplift, and a chance to get out of the hospital. Then it turned out that Amber and I had so much in common; so when Jeff was busy with school and football she came to visit me in the hospital. Many times. She brought me food. We went out to dinner. She took me shopping to an actual store for the first time in like 5 weeks. She visited me when I was lonely there and loved my sweet baby. She even brought me a manicure set and nail polish to fix the ugly state of neglect my toes were suffering from. And she picked me up for church every week.

Amber, you beautiful girl, I get emotional every time I think about how Heavenly Father blessed me with you as a friend when I was so far away from home and family. 

Thank you. I hope I get to see you again some day.

this is Amber and me in Ruthie's room at the Children's Hospital of Philadelphia.

Another fun thing that happened was going to church there that first Sunday and seeing the TWIN SISTER of a friend that had been in my ward in AZ. They look exactly alike so it was easy to tell who she was. I went over to talk to her and she got my number. She came to visit me twice in the hospital as well and she even brought me a gift bag with treats, movies and magazines. 

Talk about a tender mercy :) My spirits were lifted so much.

I just keep thinking of more blessings in my life!

When Ruth and I first got to CHOP we were put in a shared room. 

Which isn't really convenient when you have babies waking up throughout the night. 

But for me it was a blessing because the family we were sharing with was also dealing with Hyperinsulinism. They were from Washington state and had a sweet little girl too.

 We shared our stories and experiences with each other. 

They were my first friends there and someone I could talk to when I knew NO ONE. 

Then we met another mom and baby girl down hall who ALSO had HI. The interesting thing is that our three girls all had different forms of the genetic mutation and were all going through different treatments.

 But we talked and commiserated together. I didn't feel lonely when I had these other moms to talk to.

Sadly, they both went home WEEKS before Ruth and I did.

 Another huge blessing from my Father in Heaven was having family that was able to come to AZ to take care of my girls while I was across the country. While Ruth was at the Hospital here in Mesa I was staying at the hospital with her all day but I was able to go home each day to visit the girls and Logan for a little while and then I would head back to the hospital to stay the night. So Logan would get the girls up and out the door early before he left for work and take them to a friend's house for the day. (My sister and sister in law both took turns watching them as well.) Thankfully Logan was only working 3 days a week then and school hadn't started yet so Annalee and Phoebe didn't have to be shuffled around THAT much.

 But I was leaving town just as he was starting school again and his new job, which meant he would be gone every day all day. 

At that point my little sister Kate had just finished her summer job and still had a week to go before she had to head back off to BYU so she came to AZ to stay at my house and watch the girls for me for a week. Then right when she had to leave my Tia from California was able to come for TWO weeks! 

And then right when she had to leave, Logan's little sister Kimber was able to come for two weeks also!

They each stayed at our house to watch the girls so that Logan wouldn't have to get them up early and take them somewhere each morning.

 This was more than I could have asked for and such a miracle to me, as a stay at home mom, that my girls would still be taken care of in their own home while I was away.

Kate, Tia and Kimber, you are my HEROS. I LOVE YOU. 

My two year old and four year old were happy and well taken care of while I left them to take care of Ruth in Philadelphia.

Then I was there for many. long. weeks.

 I had met friends and was thankful for their visits. 

But one day, when Ruth wasn't getting better, and I was feeling lonely and sad... just when I felt like I couldn't bear it any longer, my sweet husband surprised me and bought a plane ticket to come see me and Ruth for a few days. 

HOORAY what a Blessing! It was certainly a Tender Mercy that he was in a position to do that and also that his sister Kimber was very willing to watch the other girls all by herself so that he could come.

in the NICU

On the University of Pennsylvania Campus right next to the hospital. 

I didn't realize how heavy the burden was on me until he came and lifted it. 

I felt so light and optimistic again. 

The day he left to return to AZ, Ruth was moved from the NICU back up to the regular endocrine floor. 

PROGRESS! 

Over and over again I saw miracles in my life through the whole ordeal.

And I am so blessed in so many ways!

Before and After

 This was her idea.

 I told her about donating my hair to people that don't have any and she was all gung ho to do it too. 

 She wanted to tell everybody about what she was going to do with her hair.

she even chose the style she wanted. (she knows another little girl Lia with adorably short hair.)

 Once we got there her shyness and timidity won over and she got a little nervous.

But she still went through with it.  

Before:

During! 

 After!

 10 inches for Locks of LOVE!

Our awesome neighbor Lindsay who cut her hair for free since it was for Locks of Love. 

She is also the one who cut Lia's hair, so it was easy to tell her exactly what we wanted.

Some "after" shots.

She looks so grown up with this hair. It even makes her look taller and skinnier. 

This was the year for Peter Pan. We had at least 4 at our own ward party and many others I have seen too. Oh well. It was fun. 

Our family theme started because Annalee got a Pirate dress so she became Captain Hook.

 And it snowballed from there. 

Ruthie was our little "lost boy" since they wear animal skins. I know none of them were "cows" but it was the closest we got. haha 

And of course I was Tigerlily.

Phoebe naturally was our Tinkerbell. My sis helped me make her costume. It was super easy and fast.

Our Journey

 

July 7- Take Ruth to the emergency room for seizure 11pm. Blood work reveals a blood glucose level of 32

July 8th- 1am admited to hospital. EEG to test for febral seizures. EEG is normal.

July 9th-Ruth gets a PICC (peripherally inserted central cathetar--basically a long IV that is threaded up the vein to the central vein in her abdomen) She is put on Dextrose 30 solution to keep her blood sugar level stable. They are very careful with PICCs and change the dressing on it weekly with everything sterile to keep from getting a central line infection. She hated being held down for these dressing changes, which happened more than 10 times.
 

She was also put on D50, which I think is the highest concentration of sugar that they can make those IV solutions. It was taking quite a lot to maintain her blood glucose.

 

Tests, Tests and more Tests.

We did a lot of waiting around the hospital for test results.

We were at Cardon Children's hospital for so long the nurses started calling Ruthie their mascot. They loved her.

 

Ruth was finally Diagnosed with Congenital Hyperinsulinism, A rare disease that comes in multiple different forms. After genetic testing for her, Logan and I it was determined that her specific gene mutation was a focal lesion of beta cells on the pancreas that over produce insulin, causing severe Hypoglycemia. (the opposite of Diabetes, which is a lack of insulin causing hyperglycemia)

 



This girl got poked SO many times to get her blood glucose tested over and over again during her 11 week stay in the hospital. Her poor abused feet! This picture was taken after just the first little while.

 So once we had the diagnosis, there is really only one drug, called Diazoxide, that treats this disease, Hyperinsulinism. She was given this drug treatment for 6 days and it was declared a failure. (we later found out that Ruth's specific gene mutation is unresponsive to this drug treatment.)

  The next step was to be transferrred to Children's Hospital of Philadelphia (CHOP).

Congenital Hyperinsulinism Center

 

Aug. 14th-Ruth and I were picked up by Ambulance and taken to an air strip in Scottsdale where we loaded a tiny private jet and were flown across the country to Philadelphia where another ambulance picked us up and took us to the hospital. She was on an IV and couldn't just leave the hospital on a regular commercial flight.

 

 

The Children's Hospital of Philadelphia (CHOP) is the only place in the country to do the PET (positron emission tomography) scan using a radioactive isotope created right there at the University of Pennsylvania. This PET scan located the position or location or the focal lesion of cells in her pancreas causing the problem. Check out this video:

PET: A Breakthrough in Testing

Aug. 23rd- The surgeon there was able to surgically remove that small portion of cells, which on Ruth was 5% of her pancreas. (He is the only surgeon in the nation that performs this sugery.) See this video for surgery on Focal Disease. Very cool.


Surgery went well but recovery was very painful and miserable process.
The casts on her arms are to protect the IV she had in each arm.

Now Ruth and I have matching belly scars since I have had a Cesarian section. And she even had an epiduarl! The wire coming up over her shoulder is the epidural they put in to give her lasting pain medication after she woke up from surgery.

We had many blessings and answers to prayers that it went well and that the surgery was as uncomplicated as it could be.

 

Since surgery we have been working towards recovery. She got pancreatitis right afterwards, which means it was inflamed but not infected. She was constantly throwing up. For many days she had to have "bowel rest" to heal the pancreatitis and she was on a full nutrition IV-but no eating for a whole week. Each day after that we worked on getting better at eating so they could take out the IV. She had to stay in the NICU until she could keep down full volume feeds, which was about a week and half longer than normal.

This is hanging out the NICU.

September 10th- They took the PICC out of her. I was kind of scared for them to do that. It had been her life line for two whole months!

Then we went back up to the Endocrine floor where they had to monitor her blood glucose levels for 5 days to see that she is stable and then have her do a "cure fast" to see that her body can now function properly. The problem is that half the time she still didn't feel like eating and had to be administered the breast milk through NG (nasal gastric) tube.

 

The other thing that took so long is that she was still occasionally throwing up large volumes which put off doing her Fast for an extra few days. Then she didn't do so great on the first cure fast and she had to redo it to prove she was safe enough to go home. She did slightly better on the second round of fasting, but still not perfect. She has evidence of some residual disease but not life threatening enough to demand a return to the operating table. So it was decided that we could go home!

 

September 19th- Our last procedure she went through before leaving the hospital was a Gastic Emptying study with some nuclear medicine. That is how she was finally diagnosed with the severe Reflux.

September 20th-Finally left the hospital with Ruth in my arms.

Sitting in the Philadelphia airport waiting to go
HOME!

11 weeks after first entering the hospital, Ruthie and I finally slept in our own beds at home!

I never realized my own pillow was so soft.



We surprised the other girls and didn't tell them I was coming home.
I got home at 11pm and they woke in the morning to find me and Ruthie!!

 

Recovery has been a long road. I still test her blood sugar with my Glucometer at home several times a day. And we still have the feeding tube. About 50% of her milk is fed by NG and we have no idea how long it will take her to have a full-blown appetite. Since birth eating has been a painful situation with her severe reflux (she is on Zantac and Prilosec). Plus with all the throwing up after surgery, it has taken her a while to want to eat again.

Tube feeding her on the airplane.
I just connect it to the syringe and it drains in by gravity.

 

But My sweet girl is home and we are all together again!