Saturday, December 27, 2014

FP Time



This little darling is wearing me out! Last night, Mr. Rochester and I arrived at St. Louis Children's Hospital to stay with Little Dorrit in the FP Room. Honestly, I'm not sure what FP stands for but I like to think of it as "family practice." It's a hotel-like room in the NICU where parents can stay with their NICU baby in more of an environment that simulates being at home. Parents are in charge of providing care for their infant but have the ability to call nurses, etc. if they need help. So, it's practice for parents before taking their baby home. Here is what our room looks like:

So far, this has been good practice for us and I feel like I have called on the nurses this morning more than I would have liked. Like any parents of a newborn, Mr. Rochester and I are tired and I am trying not to feel overwhelmed by everything regarding her care. Today we've had a fussy baby, a super blown out diaper, and a Broviac dressing change which was a bit traumatic for both the dresser (me) and the dressee (Little Dorrit). Thankfully, Little Dorrit is sleeping at the moment, hopefully recovering the energy she spent screaming about my attempts to change her Broviac dressing.

Yesterday, on the drive up, we weren't sure if we were going to make it to St. Louis because we got caught in a random ice/snow storm in southern Missouri and the roads quickly became treacherous. We stopped for a few hours and the weather eventually cleared up although according to the weather radar, it looked like we would be traveling just behind the bad weather. We took a chance and kept going and we were blessed with no other weather issues the rest of the drive. Among other things, we left our bag of toiletries at home. So, as always, it is an adventure coming to St. Louis and we are trying to laugh at our little mishaps and count our many blessings.

Thursday, December 25, 2014

Merry Christmas!

Merry Christmas from our family! This is about as good as our Christmas cards will get this year. With everything going on, I didn't put together a card this year (until today) and I'm not going to print and mail any out. It's been a crazy year full of surprises but we are so grateful to have each other, for all the small miracles we have seen since Little Dorrit came into our lives, and especially for the gift of the birth of the Savior Jesus Christ.

We spent the holiday at home with Trotwood and will be heading back to see our sweet girl in a few days. Although we couldn't be with her today, one of her wonderful nurses took photos and sent them to us. Hooray for instant technology! We sure miss her on this special holiday but are excited at the possibility of taking her home sometime after the beginning of the new year!


Sunday, December 21, 2014

1, 2, 3, 4, 5

I started this post earlier in the week...I think I needed a few days in between everything before I could finish it...rationally.

On Tuesday, Little Dorrit was scheduled to have eye surgery so I drove back up to St. Louis on Monday to be there for it. Her upcoming eye surgery had been explained to us many times and she'd already had an eye exam under general anesthesia when her Broviac and G-button were placed. So, I was a little confused when the doctor who was going to be doing the eye surgery talked about doing another exam on Tuesday and used the word "if" we do the surgery. Hadn't they already done the exam to determine that the eye surgery was needed? Apparently, a different doctor performed the previous exam than the one who would be doing the surgery. This new ophthalmologist, who was a retina specialist, told me that he would do another exam under anesthesia and then come see me in the OR waiting room to let me know if they needed to do the vitrectomy, which they would be able to do right away. For the past three months, we've been told a vitrectomy would clear up the blood in her right eye allowing her to see out of that eye so I had no reason to think otherwise. She just hasn't been well enough to go under general anesthesia until these last few weeks.

About 20-30 minutes after Little Dorrit was taken back to the OR, I saw the doctor quickly walk out into the waiting room searching for me. I called out his name and he asked if we could find a place to talk. My heart sank. We found an empty corner in the OR waiting room where he then drew a diagram and explained to me his theory of what was happening with Little Dorrit's eye. Here is what he drew with some of my notes written in:
Instead of a just a hemorrhage in Little Dorrit's right eye, he believes that during the first week of her life, a blood clot formed blocking the blood flow to her right eye, much like what happened with the three toes on her left foot. Because of the blood clot, the blood flow was cut off to her eye. Since then, scar tissue and abnormal blood vessels have formed in her right eye and her retina is now detached and misshapen. I sat there listening, feeling numb, since this was not at all what I had expected to hear - that she will never be able to see out of her right eye and will probably eventually need to have it removed and replaced with a glass eye. The surgeon told me that he could attempt the surgery, but the chances he would be successful were very low and that if it were his own child, he would not do the surgery. At this point, I didn't really know what to do and couldn't talk to my husband about it because he was back in Arkansas literally at the very moment in the middle of giving a final exam. So, I told the surgeon not to do the surgery. Why put Little Dorrit through unnecessary trauma if the surgeon does not even think he can be successful? Now that I write this, I'm unclear whether the surgery he was referring to was the vitrectomy or a surgery to reattach her retina.

As odd as this may sound, since Tuesday, I feel like I have experienced all of the five stages of grief over the loss of her eye. You think, it's an eye, and it's not even my own eye, but I still grieved that my daughter will have one more thing to struggle with. I felt the same way about her toes when we found out she would lose the three toes on her left foot. The five stages in a few days:
  1. At first, I felt numb when the surgeon was explaining his theory about the blood clot.
  2. The bargaining phase of grief is not exactly what I thought it would be but WebMD explains exactly what I felt:
    • This stage of grief may be marked by persistent thoughts about what "could have been done" to prevent the death or loss. Some people become obsessed with thinking about specific ways things could have been done differently to save the person's life or prevent the loss. If this stage of grief isn't dealt with and resolved, the person may live with intense feelings of guilt or anger that can interfere with the healing process.
    • Throughout this whole experience, it's been hard not to feel guilt, guilt, guilt about everything...like feeling that I did this to my child and wondering what more I could have done to prevent this or even how we could have been more prepared for her birth. In the instance with her eye, I keep wondering if the doctor had operated earlier then would this have fixed the problem?
  3. Depression: How can you not be incredibly sad when something like this happens? 
  4. Of course, I felt angry, mostly at the doctors, that no one had mentioned she might have a blood clot in her eye instead of a hemorrhage. Also, there are discrepancies between her two eye exams. In the first one, her retina wasn't detached and now it is. What is that about? I'm sure I just need more education on this to understand it better, but it's hard not to think, if they had acted sooner, then perhaps her eye could have been saved.
  5. And acceptance...If this is another challenge she will have to face, then we will face it together and she will be fine. However, I am working on getting a second opinion on this, not because I don't trust the doctors who examined her, but because I feel like I need to do everything in my power to find out if the vision in her right eye is salvageable at all. Also, if any of our friends working at the Moran Eye Center in UT have any suggestions or opinions on this (or know someone who might), I'd love to hear it.
So, now it's an eye and some toes that she is losing, but Little Dorrit is still alive and kicking, ha! literally - she really loves to kick her little legs. She is three months old and has pulled through so much already. And, it is looking like we will actually be able to take her home someday.

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!