Wednesday, December 17, 2014

Happy three months!

Little Dorrit is three months old today! Happy three months in the NICU! Momentous things that happened today:

  • She drank 10 ml of formula from a bottle! First time she's shown interest in eating by mouth in a long time!
  • She wore pants for the first time. 
  • And she looks super cute in headbands.
On Tuesday of this week, she was supposed to have eye surgery but that did not happen. I will write more about that in another post. For now, I will leave you with a cute sleeping baby photo. 

Sunday, December 14, 2014

Smiles and dressings


That's right, folks! We finally saw some smiles this weekend. Mr. Rochester worked some magic and was able to charm a few smiles out of our girl this weekend. I. Loved. It. I had started to wonder if it might be a long while before we saw her smile since she has been through so much in her short life in the NICU. And would she know she has something to smile about? Seeing her smile this weekend lifted my heart.

This weekend, we successfully learned about working her G-button and how to change the dressing on her Broviac. Mr. Rochester changed the Broviac dressing on a doll while I assisted and then we also watched a nurse change the dressing on Little Dorrit's Broviac with Mr. Rochester assisting. It takes two people to change the dressing! I still need to practice more on the doll and then at some point Mr. Rochester and I will both be able to change Little Dorrit's dressing on her. The whole process gives me a bit of anxiety because it is a sterile procedure and if we mess up and dirty up the process somehow, she could get an infection in her bloodstream. Also, I try not to freak out about living so far from a children's hospital if something goes wrong. In time, I'm sure I'll feel better about things, but right now it's hard not to feel worried and anxious about taking care of her after she gets home.

The liver transplant team met on Friday with a bunch of Little Dorrit's doctors to discuss her candidacy for a liver transplant. They concluded that a liver transplant probably is not in her best interest at this time although that does not exclude her from being a candidate in the future. Basically, if hematologists can control her current condition, why swap one disease (homozygous protein C deficiency) for another disease (all the lifelong issues involved in a liver transplant)? Honestly, I'm relieved. I want to do what is best for her, and if that means a liver transplant, then by all means, let's do it. Yet, the thought of getting her through these last few months just to have to put her through a very serious and major operation where she could still die was really scary.

I'm sure there is more I could say but this post is long enough. So, I'll leave you with another cute baby photo:
She is getting a little chunky (which is good). I doubt we will get to take her home before Christmas because there is still much Mr. Rochester and I need to learn and a lot of arrangements still need to be made for her care at home such as doctor and therapy appointments, home healthcare, etc. Even though she will likely not be home before Christmas, when she does come home, it will feel like Christmas all over again.

Wednesday, December 10, 2014

She's keeping an eye on it...

This weekend, Mr. Rochester, Trotwood, and I will be heading to St. Louis. Mr. Rochester and I have a packed weekend scheduled full of training with central line and liver transplant nurses. We should learn how to give Little Dorrit her feedings through her G-button and also learn how to change the dressing on her Broviac catheter. Last week, when I first started learning about all that would be involved in Little Dorrit's care at home, I felt a bit overwhelmed. Different medical professionals we've been working with have assured me that taking care of her Broviac and G-button is definitely something we can do and eventually feel comfortable doing. In fact, they said they won't send her home with us until we feel very comfortable with everything we will have to do.

Next Tuesday, Little Dorrit has her eye surgery scheduled to remove the hemorrhage in her right eye. Hooray! After the surgery, she should be able to see out of her right eye again although she will have a case of amblyopia (lazy eye). We hope with the right types of therapy, she will be able to strengthen the muscles in her eye eventually. Little Dorrit's nurses are also working on getting her down to bolus feedings which is only giving her food a few times a day, like a normal baby would eat. She has been on continuous feeds for a long time where she gets her food over a two hour period with a one hour break. Getting her used to bolus feedings before she comes home would be a great help to us. But, again, everything is up to her because she is the big boss. 

This week, Little Dorrit is also being evaluated as a candidate for a liver transplant. After her condition was diagnosed, we'd discussed the possibility of a liver transplant for her eventual treatment, as the liver is where protein C is produced. When her hematologists brought it up to me again a few weeks ago, I guess I just didn't realize that they would want to have her evaluated while she is still so young. This Friday, a group of doctors will discuss Little Dorrit's candidacy for a new liver, and Mr. Rochester and I will be meeting with a liver transplant nurse on Friday to learn more about all of this. Sometimes, I just have a take to take a deep breath and focus on one thing at a time so I don't feel completely overwhelmed by all of the decisions we have to make concerning her care. A liver transplant sounds great because if it is successful, it could completely fix Little Dorrit's protein C issue. And yet, a liver transplant can have many risks involved with it and it's another condition where she would have to be on medicine most likely for the rest of her life. So, that's us for now. I can't wait to see our little girl this weekend and I hope we can bring her home soon!   

Saturday, December 6, 2014

Progress

So hard to leave this sweet face today. This afternoon, I left St. Louis to go home and see my boys in Arkansas for a few days and sleep in my own bed. Little Dorrit is doing well since her surgeries. We still don't have a discharge date from the hospital but I keep hoping she will be well enough and that we will have all of her care needs at home worked out soon so she can spend the Christmas holiday with us at home. I just think it would be nice to try to start having a normalish life again. We are so grateful for the progress she has been making! Some of the nurses that have taken care of her for the last few months refer to her as the NICU's miracle baby because she has overcome so much so quickly. We keep hoping for more miracles!




Thursday, December 4, 2014

One step closer

So Little Dorrit's surgeries and eye exam went well today! Hooray! She now has a Broviac catheter and a Gastronomy button. She still has a hemorrhage in her right eye so she will have to have another surgery to remove that but today's successes bring us one step closer to coming home. We are hoping her eye surgery can be scheduled soon. Because of her surgeries, Little Dorrit has not had anything to eat since 2 am this morning. I worried that she would be really upset all day because she was so hungry. Although she has definitely had her moments, she has not been inconsolable. I didn't think I would be able to hold her for a few days because of her surgeries but the nurses said holding her shouldn't hurt her and there was no medical reason not to hold her. Good enough for me! About mid-afternoon, Little Dorrit got really upset and as soon as I held her, she calmed right down and went to sleep. That happened again tonight so either she has really great pain meds or me holding her really doesn't bother the areas where she had surgery. It feels nice to be doing mom things too. Here we are tonight:
Don't mind the mask and yellow gown. Everything is fine. There is a baby in Little Dorrit's area of the NICU who has a cold causing her entire section of the NICU to be on isolation for 72 hours. This means whenever you enter a baby's room, you have to put on a mask, gown and gloves. It is super.fun. <--sarcasm>   At least it is only for 72 hours.

Tuesday, December 2, 2014

Surgery date

Little Dorrit will be having two surgeries on Thursday morning - the G-tube and Broviac. She will also be having an eye exam while she is under general anesthesia but the eye surgery will need to be done on a different date for various reasons. In the meantime, the discharge nurse is working to figure out how we can give Little Dorrit her care and medications at home and how home health will work with our insurance. Apparently, Ceprotin, the protein C concentrate Little Dorrit needs, is ridiculously expensive and not traditionally available at your neighborhood pharmacy so the discharge nurse is working on figuring all this out for us. Today, we had a good day at the hospital and I continue to hope for more of these.

Monday, December 1, 2014

Surgeries

I love Little Dorrit's wild eyes in this photo. Again, I don't want to jinx anything by saying this but Little Dorrit is really doing well. She is finally stable enough to go under general anesthesia for some surgeries she will need before she can come home. Yes! That's right! People are actually daring to say the word "discharge" now regarding her situation. It truly is a miracle! 

She needs to have three surgeries and the plan is to do them all at once, possibly this Thursday. One surgery will be to insert a Broviac catheter which will provide us with a way to give her the Protein C she needs intravenously. We did discuss giving her daily shots instead of the Broviac but the doctors concluded the Broviac would be better while she is so young. Another surgery will involve removing the hemorrhage from her right eye so she can see out of that eye. At this point, I'm not sure if ophthalmology will actually be performing this surgery on Thursday or just doing an examination of her eyes while she is under general anesthesia. I should find out more about this soon. And the last surgery will be to give her a feeding tube called a G-tube or gastronomy tube in her stomach. Because she was on a ventilator for so long, Little Dorrit seems to have developed an oral aversion and shows little interest in eating by mouth. She is making progress taking a pacifier and should eventually learn how to eat by mouth again but giving her the G-tube will ensure she is getting the nutrition she needs and get her home more quickly. 

So, lots of changes and some exciting stuff happening. Today, Little Dorrit was taken off of her diuretics and I'm hoping her little body will be able to regulate itself without them. Last time when she was taken off of her diuretics was when she developed the chylothorax and that was really scary. I feel like she is in a better place now and we are hoping nothing strange happens with the removal of her diuretics. She continues to be weaned off of her morphine and only gets it twice a day now. The goal is to continue to wean her off of medications so she doesn't have to go home with so many. Hooray! Home is in sight!