It's Hard to Wait!

Like last week, Henley and I will be checking her weight and blood counts with her doctors this week  at the U of M. We were excited to see her weight has increased from 3.75 kg on Thursday to 3.9 kg today! Her blood work continues to be below normal ranges, but we are reminded by the doctors that looking at those red and white cell numbers on paper are just one piece of the puzzle. Her doctors feel it's not necessary to do another transfusion at this time because her energy level is relatively good, she's eating every two hours and she's continuing to gain weight. Developmentally, it's been a lot of fun to watch her smiling more and more and trying communicate by cooing at me. This natural progression her in her development is very encouraging to us and to her doctors. Our next check up will be on Thursday this week.

Although a few test results have come back, we are still waiting for two tests that relate to Shwachman-Diamond syndrome and another that is looking for Fanconi anemia. It is hard to wait, but these genetic tests take time, so we are exercising patience and celebrating the positive bits of news we are getting - like weight gain and some stability in her blood work.

While we wait, Henley and I have been doing lots of walking... so much walking that I actually got blisters on my feet! That encouraged me to break down and buy a new pair of tennis shoes. The ones I have wearing for the last two years were actually a pair I stole from Kyle! lol

We will share more, as soon as we know it. Thank you for all your messages, cards, encouragement and support. It means so much to us. ♡ Jess, Kyle, Henley, Coven + Everly

Waiting for Diagnosis

Henley was discharged Friday night with the condition that we remain in the area for outpatient care while we wait for a diagnosis. Fortunately, Kyle and I both have family in the twin cities area and we decided to "move in" to cousin Nathan's house while we wait. 

What we do know about Henley's condition is that it can be described as both pancyntopenia and neutropenia. One description I found online describes pancytopenia like this: "Pancytopenia occurs when a person has a decrease in all three blood cell types. This happens when something is wrong with the bone marrow, where blood cells are formed."  Neutropenia is described on the Mayo Clinic website as "an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria." The puzzle is trying to figure out exactly what is causing these problems in her body and then deciding how to treat it. It is difficult to wait for those answers, but we understand the testing process takes time, therefore we will patiently wait. 

Saturday morning Kyle got up early and drove to Fargo to get the girls so I could spend some time with them over the weekend. 

Monday morning Henley had a check up with her doctors. They did blood work and saw a slight increase in her hemoglobin, but otherwise things remain mostly unchanged. Her next appointment will be on Thursday. 

Henley has received some really nice cards in the mail. There is something very special about getting "snail mail." It really brightened our day to open the mailbox and see the bright colored envelops. 

Kyle headed back west on Tuesday morning with the twins and Henley and I are just settling into a new normal for now. I'm doing my best to get caught up on responding to messages, texts and phone calls - but it really is tough with a baby that insists on being held ALL the time. So please hang in there with me as I try to catch up with each of you individually and get THANK YOU notes in the mail! (The only way I am able to type this at the moment is because she sleeping on my chest.) 

Day 11 - Celebrating Small Victories

Day 11 - God is GREAT! Today's blood work results have us celebrating. Henley's hemoglobin and white blood cell counts have both improved! However, her ANC (absolute neutrophil count) continues to be zero. She will not need a blood transfusion today (as that would only work to improve her hemoglobin) and a decision has been made that she is stable enough to move to out patient treatment for now. A few things have to happen before we can be discharged though. First, they need to remove the current IV line she has. Second, we have to stay in the area - close to the hospital. We will have regular appointments and blood counts done until we have that official diagnosis. Third, we'll have a lot of rules surrounding Henley's exposure to other people and our friends and family will have to bear with us as Kyle and I fully exercise our "overly protective" parent skills. 

The plan right now is that we will go to Cousin Nathan's house. Kyle will go get the twins and bring them to see me for a couple days and then he will return home until we get the call to come in for a team meeting with Henley's team of doctors. 

To those who have signed up for the meal train we are SO THANKFUL for the meals and food we have received so far. It's allowed Kyle to stay here with Henley and I since he arrived in Minneapolis. Even though we are working towards discharge in the next couple days, I'm hoping we can still utilize the help that has been offered in terms of meals. I will be reaching out to those individuals who are on the calendar to see what we can arrange logistically. 

Henley loves each of her "Henley Helpers" so much. I tell her about all the people that have been praying for her, from those people back home, to friends in Spain, Sweden, Australia, Canada and Uruguay and so many states around the country. I'm trying to figure out how to make a pin map for her that marks each of those places. Thank you all so much!!

Day 10 - Still Waiting

Day 10: Despite everything she's been through over the last 10 days of being hospitalized, Henley still manages to coo and smile at her nurses and doctors. 

Today's update is short. It will be another 5-10 days before all the results are back. We are praying for a firm diagnosis and treatment plan at that time. During our meeting with her care team today there was a lot of discussion about future out patient care. It appears that having Jess and Henley stay near the hospital in Minneapolis will be a key component to this plan.

Her blood counts have been closely monitored and tomorrow may be another transfusion day depending on morning results. 

Thank you for all the prayers and support we've been given.

Resting on the beautiful prayer quilt made by the ladies at Our Redeemer's Lutheran Church

Little Henley finally got to meet her Uncle Sam! No touching or holding her, but we were so happy to have a visit from someone on the "outside." :)

Day 9

Our #happyhenley time yesterday afternoon.

A lot of people have been messaging and asking us how they can send a card or gift or something and I think the best solution we've come up with for now is to have those things sent to Kyle's cousin's house.

Nathan Johnson
C/O Henley Johnson or jess johnson
14779 Jersey Ave South
Savage MN 55378

We are anxiously waiting for morning hospital rounds and to talk with her team of drs.

On another note - It's Henley's Grandpa's birthday today! Sure wish we could be celebrating with him... hopefully that day is coming soon!

Day 8 - The Trip to U of M Masonic Children's Hospital

 Day 8: This is going to be a lot longer post – it seems the longer this journey goes on, the more information there is to share. 

Yesterday morning after reviewing bloodwork in Bismarck a decision was made by our pediatric oncologist and pediatric hospitalist that it was time to move us to another care team where there would be more resources and specialties available. Sanford Airmed came from Fargo to transport us. Heather, Justin and Michael came to our room and the transition of care from the hospital to their team went pretty flawlessly. Michael immediately sat down and started talking with me about what would happen, Heather gathered information from the Sanford staff that had been caring for us and Justin took care of getting Henley ready. Henley LOVED Justin. She had been sleeping in my arms, but woke up and immediately had this huge smile on her face, was cooing and gooing over him and batting her eyes. I had to tell her NO FLIRTING!! You’re too young to date. It was so wonderful to catch a glimpse of our super happy girl.

Henley was tucked into her isolette, Michael grabbed my bag, I carried my pillow and jug of water and we were off to meet the ambulance that transported us to the airport. It was extremely difficult not to hold Henley, but she was sleeping in her little box and seemed content.

The flight took about 1 hour and 20 mins to get to Minneapolis, where another ambulance team met us. Before we left the airport, the crew took Henley out of her little box and allowed me to nurse her and then we were on the road to the hospital. It was really tough transitioning to a new space, with different providers, repeating the story, and adjusting to different procedures etc. We eventually started to get some rest around 11pm.

This morning Henley and I met part of the team of doctors that will be caring for her. I felt really good after that meeting. Today they are running some additional tests and working on putting her plan together.

Unlike the hospital’s we have been at so far (St. Joe’s for delivery and Sanford Bismark) – this hospital does not provide me with meals. If Henley was old enough to eat on her own, she would get meals, but since she depends on me solely for her nutrition she does not. The other hospitals provided me a “mother’s tray” – since nourishing me, means nourishing her. At this point I don’t feel comfortable leaving her room, so I can go get something to eat – plus she has been breast feeding about every hour. Today Sam and Anna brought me a fantastic smoked salmon sandwich and some healthy food from a nearby grocery. I am SO grateful for this! Anna has also taken the initiative to set up a “mealtrain” site, to help organize some meals for us. We are fortunate to have a lot of family and great friends in the twin cities and my heart really breaks for any woman in my position that doesn’t have that support. I just don’t understand the hospitals policy on this issue.

Lots of you are probably wondering who has been caring for the twins – my parents actually jumped in their pick up last week when I told them we were being admitted to the hospital. They were on the road within an hour – we’ve so thankful for this, because it allowed Kyle to be with Henley and I as much as possible. Auntie Beth and Uncle Ryan will take over today and Kyle is on his way to be with Henley and I as we work through getting a diagnosis and treatment plan together.

It is YOUR messages of encouragement and God’s unending willingness to hear my cries for comfort that are getting us through. Last night there was a point where I was really, really upset. I had to sit down and just started praying, asking God to help me calm down and to help Henley. At that point more staff came in to the room, including another nurse who started talking to me. Through our conversation I learned that her Uncles live very close to us and that her mom grew up in New England. She told me her mom had seen on FB that a baby from New England was going to Children’s Hospital. Here I am, all alone, a long ways from home, needing some comfort and God had just the right person to send in the room who would bring me some comfort.

I will continue to post some updates and work at replying to each of your thoughtful messages.

Day 7 - First Plane Ride

Day 7 - Henley is about to take her first plane ride. Sanford AirMed is on their way to get us and fly us to University of Minnesota Children's Hospital in Minneapolis. 

I'd say this is the second hardest day we've had since she was hospitalized. Your prayers and God's unfailing love helped us get through the first one. I know it will get us through today and the rest of this journey as we seek answers.

"Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You" - Matt Maher

Later that night.... 

Saying our prayers and getting some rest for the busy day that lies ahead of us.

Day 6

Day 6- Someone was pretty happy to see her daddy today! We will draw labs in the morning and meet with her doctors. It's still a puzzle that we don't understand. Despite everything she's gone through the last few days, she has still managed to gain weight! At just over 7 weeks old, we have finally hit the 8 lbs mark!

Day 5 - Happy Birthday Angel Sarah

Today is Sarah Joy's birthday... for her heavenly birthday gift I believe she asked God to give Henley a miracle here on earth. Today's labs show an improvement far greater than we expected! Henley does not require a transfusion today, in fact we won't recheck lab work until Monday morning. We still have a long road ahead of us, but there is reason to celebrate and thank God for this blessing!

I miss you everyday Sarah. I've been surrounded by wonderful nurses and am constantly reminded of you. Thank you for watching over us and being Henley's guardian angel.

Day 4 - Transfusion Day

Day 4 - #happyhenley update: I’ve been trying to type up an update- but Henley has REALLY wanted her mama holding and rocking her today. So I am going to keep this quick. For the most part today has been a really good day. We are extremely thankful for the PICC line that was placed this morning. This gave us critical access and allowed us the ability to give her a blood transfusion, as her hemoglobin has now dropped to 5.5. She has had so much happen to her tiny body that she seems more uncomfortable today than any other day. The biopsy did come back and is negative for leukemia, which we thank God for. However, we still don’t know why her bone marrow is not functioning. She remains severely vulnerable due to her lack of white blood cells, because of this it is far too risky to have visitors. 

When we have news to share we will do our best to get that news to YOU! We know our journey would be so much more difficult if we didn’t have a great support system of people like you and most importantly our faith in God. We believe that we are witnessing a miracle in Henley. She is truly defying the odds right now because God is on her side. God would not quiet his voice in my ear or my mother’s intuition. He led us to Bismarck and the care she desperately needed. She will be healed and when she is, the Lord will have to help us again because this kid is about as tough and stubborn as they come!!

PS- she has continued to nurse and refuse a bottle THROUGHOUT this ordeal AND she felt so good after her PICC line procedure that she pulled out her feeding tub! lol

Day 3 - IV's

I am writing this 7/21, looking back at how absolutely terrifying and difficult our night was on Thursday, July 13. This is the day that was our lowest so far during this journey. We rallied all our friends, family and their extended friends for prayers. It was a gut wrenching night as the doctor tried for 3 hours to get an IV line into Henley and ultimately failed. I won't ever forget how awful Henley looked when they brought her back to us. My heart was breaking but our strong little solider looked at me and still tried to nurse and laid on my chest for comfort.

A plan was made that night to have a surgeon look at attempting to place a line the next morning.

July 13 Facebook post at 11:08pm

Today’s 💕Henley 💕update – this is kind of a long one: The day started out with the Neonatologist trying to get an IV. They weren’t able to get an IV placed in her arms or legs, but did have success in her scalp. This was good because they were able to give her some pain medication for the biopsy procedure, which went good. We are waiting for those results (they had to go a lab in TN). Unfortunately, we lost that IV line shortly after the procedure. After that they were able to do several heal pokes and obtain enough blood for some bloodwork that revealed she did need a blood transfusion. Next they placed a feeding tube through her nose to help get more nutrition and fluid into her body with the hopes that would plump her veins up and give us success in another IV attempt. Those attempts, including a cutback procedure, failed. Our next step is meeting with the pediatric surgeon early tomorrow morning in hopes that he can place a PICC line. 

She has slept and cried a lot today, but this picture is a perfect example of our happy sweet girl who we are still get little sneak peaks every now and then.

We are so grateful for all the thoughts and prayers from each of you. Kyle and I have moments of feeling exhausted, but then remind ourselves that there are people like YOU that are helping us through this journey. We are praying that God guides us and gives us strength, courage and wisdom.

Day 2

Henley was bright, smiling and busy making conversation with me this morning at 0430, anxious to eat. Today we met with the pediatric oncologist and talked about the bone marrow biopsy, which is scheduled for 8:30am tomorrow. Full results will take a little while to come back, possibly not until Monday. We expect to be closer to a diagnosis then. Our battle today has been getting an IV placed. Please pray that God will make one of her tiny veins strong enough to accept the catheter as we prepare for tomorrow. 

We are so grateful for the messages we have received from so many of you. I am doing my best to keep up with responding. 

Day 2 - July 12 - Amazing Grace

Facebook Update - July 12

A more complete update later- but I had to share this. I'm laying in the recliner with Henley, and bored with TV. Decided to put on one of my favorite iTunes play lists and try to rest. The first song came on- Chris Tomlin, Amazing Grace. I stare down at my precious sleeping baby and she immediately gets this big smile on her face. Throughout the song, as she slept she would smile every time it came to the chorus. Thank you for all your prayers....

Day 1 - July 11, 2017

Facebook post: July 11, 2017

Our family is asking for your prayers. Henley was admitted to the hospital today in Bismarck. Her little body isn't working like it should be. She will likely be having a bone marrow biopsy in the next day or so. We will know more tomorrow when we meet with her doctors and I will post updates here as I'm able. This seems like the easiest and fastest way to provide information. Please pray that God gives Kyle and I strength and patience, gives Henley comfort and healing and her doctors the knowledge to diagnose her and treat her.