Monday, September 22, 2014

More mysteries

Today, Little Dorrit's breathing has again remained stable on the oscillator. This morning we had a call from the NICU telling us that her platelet levels had dropped again so they gave her blood and platelet transfusions which brought her platelet levels back up. And somehow, she has three toes on her left foot that have turned very dark purple and then she has started getting purple spots on her right foot. The doctors and nurses are mystified as to why this is happening along with why her platelet levels keep dropping. Little Dorrit had another ultrasound done of her head and body and we were told the preliminary findings were that everything seemed normal - no clots and no abnormal bleeding. That's great but it still doesn't explain why her poor little feet are turning purple and I'm really worried about her feet. They look really bad.

Yesterday, we were discharged from Barnes Jewish Hospital. After several days in the hospital, it was time to leave, yet it also made things a little harder because Barnes Jewish is connected by a bridge to the St. Louis Children's Hospital and it was very easy to go visit our daughter in the NICU every day with Mr. Rochester pushing me in a wheelchair.

After being discharged from the hospital, thankfully, we were able to get a room at the Ronald McDonald House which is still very close to the children's hospital. If I could walk far, it would even be an easy distance to walk.  I have never been inside a Ronald McDonald house before so this is a new experience for me. Here are a few of the pros and cons I've noticed about staying here:

Pros

  • The building is beautiful. It's an old renovated building with very nice and clean facilities.
  • Proximity to the children's hospital - it is super close. 
  • They serve dinner every night at 6 pm for patrons.
  • It is only $15 a night. 
  • It is relatively quiet. 
  • Every room is designated a locked cabinet with a mini fridge in it where you can refrigerate items and keep food.
  • The bed is comfortable. 
Cons
  • Sharing bathrooms. None of the rooms have their own bathrooms. This wouldn't really be such a big deal for me except being just barely post C-section, it is harder to walk down the hall to a bathroom than to just have one in the room. It is also more difficult to wash out the breast pump accessories in the middle of the night as we have to go down the hall to the bathroom to wash them out and then downstairs to put the milk in the mini fridge. 
  • The rooms are very small. Our room really just fits a bed in it - which would normally be okay but again, it is a bit difficult to maneuver being barely post C-section and also trying to use a breast pump in a tiny room. 
  • The walls are thin. You can hear everything. 
Overall, we are so grateful we were able to get in a room at the Ronald McDonald House. The meals we've had at night have been delicious and are brought in by volunteers. The affordability and the nearness to the children's hospital are just a huge blessing for us right now. 

Mr. Rochester and I are doing our best to stay positive about everything. Today, I was more emotional about things with the new challenges Little Dorrit is facing. Leaving the hospital yesterday was also hard for me. I tried to put it out of my mind and think of happier things, but for a few moments, all I could focus on was how this was the third time I've left the hospital after having a baby without the baby. Although this time our situation is not final and we can hope and pray for the best still, I just need to keep telling myself that miracles can happen. And, we hope in time, that they will happen for us. 

6 comments:

Jani said...

My mom managed the Ronald McDonald House in Missoula, MT for a while. They can be a wonderful place, I'm so glad you can be close to Little Dorrit. Though I can't imagine trying to recover in one from a c-section.

We will continue to pray for your miracle. If you can't tell, I am checking inconstantly all day for updates on your sweetie's condition. Prayers for her doctors to discover the why of her circulation issues and help her little feet to recover. Grateful for the good news of no bleeds or clots anywhere. Love you Aria. I'm praying so hard for you all.

Jenny said...

Thanks so much for the updates. Both Alex and I appreciate receiving them. We hope the platelet problem is soon figured out and resolved. I think that reading to her is a wonderful thing to do. I'm sure she is at some level aware of your voices, and I'm sure it must be very comforting to hear the loving voices she heard all those months before she was born.

Cormorant said...

Thank you for sharing your thoughts and updates on sweet LD. I'm sorry things have been difficult today. There is so much you are dealing with, and you are doing fabulously. This is not easy. You are a strong, courageous, faithful woman, Aria--and that strength is magnified by God's love for you. With Him, your little family is doing great things. Keep hoping for miracles. Keep going. We love you!

Kristina and Eric said...

Loves. Nothing else can be said.

Mrs. Cinnamon said...

Your posts are always so beautifully written. I love every one. Are you guys on normal sleeping schedules? I'm always afraid that my texts will wake you. All of you are continuously in our prayers. I hate being so far away. MANY Hugs and Kisses!! Love you.

Kel said...

Positivity is good, and crying is good, too. They're not really opposites. I love you! Let us know when that donation page is up. There's so much going on for y'all. The last thing I want is for you to worry about the extra stuff that creeps up from the background. I keep thinking about you and Little Dorrit. You're a lover, she's a fighter. Good combo.