Being Home

As you can see from this picture I really have my hands full. Thankfully my parents are here helping with the twins, because there is no way I could manage them alone right now with Henley while Kyle is at work. So here's an update about what we've been doing! 

The twins were thrilled to see Henley. I think more happy about her being home than about me being home! All we hear from them is HENNY HENNY HENNY... Henny cry! Henny poop! Henny eat.... etc. 

Saturday Kyle and I went car shopping. The idea of driving the 1 ton long box back and forth to Minneapolis is just not realistic. I am fairly certain, although we haven't tried it yet, the big truck would not fit in the parking ramp at the U. With the help of selling a few horses last week, we were able to buy a nice used Ford Taurus that previously belonged to an 82 year old lady. All three car seats fit in the back and it has a big trunk, so we're set. 

Henley was surrounded by family and friends on Sunday at Our Redeemers Lutheran Church, where she was welcomed into the church and baptized. (I'll post some pictures on the blog) We had a small family luncheon afterwards at our house. 

Monday we did labwork in Dickinson. When the results showed up on mychart, I just called one of her doctors in Minneapolis and consulted over the phone. We were thrilled to see her red cells up, but as expected her neutrophils had dropped again. Arrangements were made to get the medication to Dickinson so she could have another shot to boost those numbers into a safer zone today. We will now get the medication and give Henley the shots ourselves as needed (likely 1 or 2 times a week). Her next blood check is Friday.

As long as things continue to go well she does not need to be seen in Minneapolis until next week. This could of course change at anytime... so I just drive around with the car packed and ready to go for now. 

One other thing I did today was register Henley with the Shwachman Diamond Syndrome Registry. I've been doing a lot of research at night trying to collect more information and here are a few interesting numbers. There are 154 SDS patients "pinned" on our support group's map (of the world). As of July 2017, there are only 192 SDS patients registered with the SDS Registry. 

Trusting in Him

We got our hopes up a little bit too high... blood work today showed that Henley just is not stable enough to move home to SW North Dakota, not even for a short time. She was started on neupogen today. It's a shot that we give her. It's unknown how frequently she will need these shots, every day, every other day, once a week... we just don't know. Her blood work will be checked again on Wednesday and we will re evaluate then. 

We also learned information from her skeletal survey (a full body X-ray). The results show that she has many of the markers typically seen in patients with Shwachman Diamond Syndrome. Most notably are where her femurs and hips attach. At some point in the future she will need surgery to correct this and help her walk normally without pain. 

In some ways today was harder than the day she was officially diagnosed. I think it was harder for me, because I was so looking forward to going home, seeing the twins and being in our house, on our quiet dead end road. I know it was hard for Kyle to head home, once again without Henley and I. All we want more than anything right now is to have our happy little family of 5 under one roof. Please pray God will give us that soon. We are trusting in Him.

Diagnosis Day

We have an answer… today we learned that Henley has a genetic disorder called Shwachman-Diamond Syndrome. It is very rare and characterized by exocrine pancreatic insufficiency, bone marrow dysfunction and skeletal abnormalities. There is no cure, but we will be doing everything we can for Henley. One of those things started today with enzyme therapy. A new normal for her will be a tiny teaspoon of applesauce with enzymes sprinkled on top before every meal. This will help her body properly absorb nutrients and grow. 

We met additional doctors today that will be a part of her care team. We are scheduled to go back on Monday for some more blood work. Hopefully we will get the ok to sneak home for a few days. 

Our need for prayer will continue. Prayers that Henley stays as healthy as she can be. Prayers that God gives Kyle and I strength for this new journey and prayers for comfort. God gave us Henley. He trusted us with her and knew that Kyle and I would have the strength to go through this storm. We are so thankful for the blessing that she is to us and the lessons that she is teaching us.

"I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

It is well with my soul

It is well, it is well with my soul"

https://www.youtube.com/watch?v=B6fA35Ved-Y

Angels Everywhere

an·gel

ˈānjəl/

noun

1. 1. 

   a spiritual being believed to act as an attendant, agent, or messenger of God, conventionally represented in human form with wings and a long robe.

   
   

   "God sent an angel to talk to Gideon"

   • 
     

     
     

     
     
   • 
     
2. 2. 

   a person of exemplary conduct or virtue.

There are angels everywhere. We pass them everyday and sadly, for the most part they go completely unnoticed and unappreciated until you really need them. If you are reading this, you have been one of our angels. You have prayed for us, thought of us while you went about your daily routine, mailed us cards, sent us messages, cooked for us and called to simply say "Hi!" Each of you have helped provide us strength, energy and given us comfort during this journey and we will forever be grateful for that. You have all inspired Kyle and I to be better, to give more and to go the extra step. I want to take a minute and tell you about two particular angels.

After we left the hospital and Kyle went home, Henley and I were left to make the most out of being left in Minneapolis. We didn't come to the cities with all our "baby stuff" from home, so I decided to look online for a few creature comforts. Our friend Cassandra from Iowa had brought us a co-sleeper and a ring sling to use. I thought if I could find a stroller and maybe a baby swing of some sort to use I would be set.

Since birth Henley has really disliked being anywhere other than my arms. That meant she wasn't thrilled about our baby swing, but when we were at Children's Hospital in Minneapolis we had the opportunity to use a Mammaroo. She wasn't in love with it, but she was far more content in it than anything else we had tried.

There were a number of them for sale on Facebook marketplace, but the average price for them was around $150, used. I found one nearby and sent the seller a message, making him an offer. A few minutes later he messaged me back and said he and his wife read Henley's story and wanted to give it to us. I was speechless. I didn't know what to say. Shortly after that, I received a message from his wife, full of love and support and asking what other baby items Henley needed and what personal items I might need. When we met that evening to make the exchange, not only had they brought the mammaroo, but they also brought a bag full of items they had just bought for Henley. Some baby books, toys and fuzzy blanket. I was in tears. I didn't know how to accept such generosity. We sat and visited for awhile and just talked about normal things. It was so refreshing.

A week later they invited me over for supper and while Ben cooked, Nicole and I went for a walk with our babies. The conversation and great laughs made me feel like we had all been friends for years.

By now you're probably thinking - Wow! What special people, to go above and beyond for a complete stranger...  but I'm not done yet. Nicole saw a picture I posted on Facebook of Henley and I. I truly looked like a new, tired but elated "fresh" mom. I said I loved the picture regardless of how I looked, because it was likely the only non-selfie, mommy and me picture I have of Henley and I. So what did Nicole do? She shared our story with another set of angels and a week later a special photo shoot and priceless photos were gifted to us.

God has heard our prayers and He has sent us angels. Each of you have arrived at just the moment we needed you. You have each inspired us, lifted our spirits, lightened our load, nourished us and brightened our day. He has also given us time. Time to meditate about our lives, what we are doing or not doing and think about who we want to be and how we can use the gifts he has given us. With His help, our tiny Henley is taking us on a journey to be difference makers. Thank you for being a difference maker in our life.

 

Almost 9 lbs

We had our Monday appointment yesterday. The positives are that she gained weight again! She's ALMOST 9 lbs!! Her hemoglobin went up just slightly, but is still far from normal. Her white blood cell count has gone down again and her neutrophils are still at zero. Her energy level and disposition are good, so we can smile about that! We are still waiting for the diagnostics tests to come back. To be honest, I have quit asking and just trust that as soon as the doctors know something they will tell us. I'm thinking about one day at a time and that is the easiest way to cope. My focus is knowing that she is happy and as normal as can be on a daily basis. I'll focus on the other stuff later, for now I'm enjoying my baby and living in a world where she is perfectly healthy.

Ebb and Flow

The ebb and flow of this journey continues. We were feeling pretty optimistic on Monday that Henley had stabilized enough to consider transferring her follow up care to Bismarck or Fargo. This would include continued blood work and weight checks twice a week, while we wait for the genetic tests to come back. On Tuesday, Henley didn't have her usual energy and didn't eat as well. Wednesday's blood worked revealed her hemoglobin has dropped again, so it's possible she may need a transfusion this weekend. I have a great app on my phone that helps me track her eating, activity, sleeping and diaper changes. Looking at the patient in combination with the numbers has been an important key to determining when we will do a blood transfusion. Wednesday and this morning (Thursday) her energy has been much better, active and smiling and cooing. The Henley we love to see!

I've been doing pretty good at patiently waiting for the genetic tests, but with today's decline - I'm feeling really anxious again and praying the lab will get us some more answers by Monday so we have a clear direction.

SaveSaveSaveSave