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!

Sunday, November 30, 2014

One week

It has been a week since my last post. We spent that week together in our home and I think it was good for us, especially Trotwood. This whole experience of having a new baby that is in the NICU has been hard on all of us but I feel like it has been especially hard on Trotwood. For the first few weeks of Little Dorrit's life,Trotwood stayed with friends and family off and on and then we were with him during the week and away on weekends. Because of changes in his behavior throughout all of this, Mr. Rochester and I decided we needed to be with him more, despite the difficulty of keeping an active five year old entertained at the hospital. So, now, we either all come up to St. Louis together or only one of us does so the other parent can be at home with Trotwood. A wonderful and generous friend and home teacher is letting us borrow a car temporarily so yesterday I drove up to St. Louis and Mr. Rochester and Trotwood will have another "boys week" together. We are hoping Trotwood's behavior will start to improve at school as we've seen a vast improvement at home these last two weeks. Little Dorrit is doing well and I'll write a longer update on her tomorrow.

Sunday, November 23, 2014

Always an adventure

Going to St. Louis is always an adventure for us. We traveled up to St. Louis on Friday and then came back on Saturday, a bit sooner than we planned, due to an unexpected visit to the ER early Saturday morning. In the wee hours of the morning, I woke up feeling very sick and after the loss of much bodily fluids, we went to the ER. Normally, I wouldn't go to the ER for this sort of thing and in fact, in all my 34 years, I have never been to the ER before for myself, but that morning, my body was almost completely numb and my hands cramped up so much I couldn't move them. It was pretty scary. So we went to the ER and they told me I was severely dehydrated and that my potassium levels and electrolytes were really low. After getting IV fluids, potassium tablets, anti-nausea medicine and some rest, I feel much better and hope never to experience gastroenteritis again.

Consequently, our trip this weekend became much shorter than we originally planned. Of course, we were disappointed that we were unable to spend much time with Little Dorrit, but we also tried to recognize the little tender mercies bestowed upon us this weekend, such as:

  • We got to spend about 3 hours with Little  Dorrit on Friday night. She continues to do well in her recovery. That evening, we had an encouraging talk with one of her doctors about the possibility of scheduling in the near future some surgeries Little Dorrit will need before she comes home. More on this another day.
  • Trotwood had a great time playing in the hospital's sibling playroom while Mr. Rochester and I visited with Little Dorrit on Friday night. Afterwards, Trotwood wanted to say goodnight to his sister and  then didn't want to leave her stating, "She's just too cute to leave." We agreed, of course, and it warmed my heart to hear him say that about his sister.
  • We stayed at a place called the Haven House this weekend. It is a little more expensive and farther in distance from the children's hospital than the Ronald McDonald house, but we can usually get a room there as they take reservations - it's the same type of lodging for families with children in the hospital but you have your own bathroom in your room. It would have been so.much.worse to be so sick somewhere like Ronald McDonald where there are communal bathrooms.
  • There is a hospital and emergency room literally across the street from the Haven House.
  • There was absolutely no one in the waiting room at the emergency room when we got there at three in the morning so we did not have to wait.
  • So far, thankfully, Trotwood has not gotten sick and Mr. Rochester has not fallen severely ill although he did get sick.
So, tender mercies. We miss Little Dorrit and are sad we didn't get to spend a lot of time with her this weekend. But we remain hopeful for her continued recovery and more peaceful stays in St. Louis in the future.

Thursday, November 20, 2014

Quiet

I know the blog has been quieter lately. We have not been with Little Dorrit since Friday but we do receive daily updates from her nurses and sometimes even  photos from her nurse practitioners. She is doing so much better than she was just even a few weeks ago. A few days ago, she began receiving breast milk again and the hope is to transition her from the special formula back to breast milk completely. So far, there has been no sign of a return of the pleural effusion. Hooray! She still needs to learn how to eat again and unfortunately she has not shown much interest in her pacifier or in using a bottle since her initial tastings a week or so ago. I am hoping that when we can take her home that she will not have to come home with a feeding tube in her belly which will probably happen if she does not show signs of wanting to eat. I feel mostly recovered from my cold and we are heading back to see Little Dorrit in the morning. Thank you all for your love, support, and prayers!

Monday, November 17, 2014

About the same

I haven't written an update for the last few days because not much has changed with Little Dorrit's situation. She seems to be doing about the same and her nurses are trying to work out her feeding schedule with her feeding tube and also working on decreasing her morphine, which I believe will be a long process. We are all still home together while we attempt to recover from colds. I am looking forward to being healthy once again so we can return to visit Little Dortit in St. Louis.

Friday, November 14, 2014

Keepin' on

Mr. Rochester spent this past week in St. Louis with Little Dorrit and here is a brief update:

  • Little Dorrit is slowly being weaned off of her morphine and other drugs that keep her "comfortable" and she seems to be handling that change well so far.
  • She is still being fed her special formula through a feeding tube and gets her feeds at 1.5 hour intervals.
  • Her three toes continue to go through the natural process of necrosis and have begun flaking. (I'm writing this more for my own benefit so sorry if it grosses anyone out.) Her toes still get treated with Betadyne a few times a day to help them stay clear of infection throughout this process.
Because of impending winter weather, I drove to St. Louis to get Mr. Rochester today and we are on our way back now. I hate to leave Little Dorrit alone at the  hospital, but Mr. Rochester has to get back to work and in the last few days, I have contracted a nasty cold so I can't even go into the NICU to see her. Maybe this is the Lord's way of telling me to slow down. I know Trotwood will be glad that we can all be together again at home, for a little while at least. It is also a comfort to me to know that Little Dorrit has some amazing caretakers where she is. When I am at the hospital, I can see that these medical professionals actually love my little girl and that makes leaving her in their hands a little less hard.

We are so grateful our little girl is making strides. Here is a sweet photo Mr. Rochester captured of her "smiling" in her sleep. I think she kind of looks like a little smiley marshmallow baby in this photo.


Although she has been making progress, we do realize that she is still very sick and has many challenges ahead of her. We truly appreciate your continued prayers.

Tuesday, November 11, 2014

Another difference

Notice any differences today?
Apparently, Little Miss Dorrit is getting particularly talented at grabbing and pulling on things. Last night, she pulled out her nasal cannulas and her caretakers decided to see how she would do without them. Mr. Rochester said that so far, Little Dorrit has been  doing well although she will occasionally desat when she is sleeping. I keep praying that she will successfully be able to breathe without any assistance or future lung mishaps. What a miracle that would be! We are so grateful for the small miracles we've seen and the recent progress she has been making! 


Monday, November 10, 2014

Speech therapy

This weekend, Trotwood's wish to hold Little Dorrit came true! We talked with one of his nurses and she helped him get all situated in the chair in Little Dorrit's room. Basically, he sat in the chair with a Boppy pillow and another pillow on his lap and he had his arms underneath her. She just kind of laid there on the pillows and stretched out her neck a little. I think he was a little nervous to do it but also excited to hold his little sister.  

Little Dorrit is slowly coming down on her nasal cannula flow. Most of her medicines are also being transitioned so she can take them by mouth through her feeding tube. Today, they went down on her morphine just a little and I think she is tolerating it alright. A speech therapist also began working with Little Dorrit today to start her on "tastings" which will hopefully help her want to use her mouth to eat. Until this experience in the NICU, I had no idea there were speech therapists for babies! Because she has had so many tubes down her throat, she might associate eating with past "trauma" so the tastings are a way to help her understand that eating using your mouth can be pleasant. Tastings involve letting the baby taste or use a pacifier dipper in formula or breast milk which should eventually help them have "pleasant oral experiences." Today, Little Dorrit successfully sucked on 5 ml of formula! Hooray! 

Mr. Rochester is staying with Little Dorrit this week and Trotwood and I came home today. We were supposed to leave yesterday but it was around five pm before we were ready to leave so we opted to stay another night with Mr. Rochester. I'm so glad we were all able to be together this weekend. 


Saturday, November 8, 2014

Holding steady

Mr. Rochester and Trotwood came up to St. Louis this weekend. The plan for next week is for Mr. Rochester to stay the week with Little Dorrit and Trotwood and I will return to Fayetteville and come back up on Friday to get him. So far, Little Dorrit is holding steady still with no sign of any more pleural effusions. I am trying not to worry too much about these coming back but I just feel paranoid about it. Her nasal cannula flow has been reduced to 3 liters per minute and she seems much more comfortable now that the chest tube is out. She also seems to have adjusted to the decrease in morphine. Hopefully, as she is weaned more off of the morphine, she won't have such a strong reaction as she did before. Oh, and she's back in a big girl crib. Hooray!

Mr. Rochester got to spend some time holding Little Dorrit and Trotwood had nothing but love for her. When he saw his daddy holding the baby, he said, "I wish I could hold her!" We told him he might be able to hold her with one of us at some point and he seemed ok with that (and a bit nervous about it too). She is just attached to so many wires still.
Trotwood was so sweet to Little Dorrit. He kept stroking her head and would try to capture her attention by making faces and waving toys in front of her. At one point, we thought we saw her smile when Trotwood was talking to her in a funny voice but she was also working on filling her diaper so...who knows? When I changed her diaper, she started crying and Trotwood would tell her, "It's okay little baby." My heart was so happy to see him finally be able to interact with one of his siblings. He loved it. And so did I.

Thursday, November 6, 2014

Small strides

Little Dorrit made some small strides today. Instead of the RAM cannula with so many puffs of air a minute, she is now on a flow of room air. Her chest tube output is still zero which is a good thing because late this evening after I left the hospital she somehow managed to rip out her chest tube. I imagine that probably didn't feel great but neither does having a chest tube from what I understand. So, in the morning, we'll have to see what the doctors say about this. I doubt they will put the tube back in unless they think another pleural effusion has formed. Speaking of which, since her pleural effusions have thankfully not returned, they are going to hold off on sending her records to Boston Children's. I'm taking this as good news and a tender mercy and hoping her little body is healing itself.

For a lot of the day today, Little Dorrit seemed pretty uncomfortable. I'm wondering if that was from the chest tube, the decrease in morphine, or a combination of the two. I keep praying she can get the rest she needs to recover. Here is a photo from today:
See the neat trick the nurses did with her pacifier? They taped it to a rolled up burp cloth so it doesn't fall out of her mouth when she is swaddled. Those NICU nurses are full of great ideas!

Wednesday, November 5, 2014

To withdraw

"To remove or take away something from a particular place or position."

Little Dorrit continues to do well with her RAM cannula even with her caretakers weaning her down some. Still no signs of reaccumulating pleural effusions. Hooray! She seemed pretty peaceful to me until this afternoon. I left her room to get some lunch and when I came back, instead of sleeping peacefully, she was tossing and turning in her bed (to the extent she can) and crying out in her sleep. She was trying to sleep but for some reason, she couldn't. And she was sucking really hard on her pacifier, almost like she was hungry. To try to soothe her, I held her hand with one of mine and with the other, I put slight pressure around her head to help her know I was present. That worked for a little bit and she would relax, then she would tense back up again and cry out.

I was puzzled. Little Dorrit's diaper was clean and she wasn't hungry because she gets continuous feeds of 26 ml per hour of her special formula from a feeding tube. Her behavior seemed abnormal to me and right as I was trying to figure out who to talk to about this one of her doctors on the PAC (pediatric advanced care) team stopped by. I mentioned this behavior to her and she observed it as we were talking. Then she asked me if Little Dorrit had runny stools and I told her she'd had at least two today. At that moment, Little Dorrit sneezed (which is cute) but also something new in the last little while. After gathering all this information, the doctor said that Little Dorrit was showing symptoms of withdrawal. Apparently, during the doctors' rounds this morning, which I didn't hear well since I was changing a poopy diaper, they decided to  start weaning Little Dorrit off of the morphine drip she has been on. They only went down a little on the drip but it was enough to cause her little body to dislike the change. Poor sweet, little drug addicted baby.

I asked what I could do to help her feel better and the doctors and nurses both said to just try to comfort her. They are also watching her and will give her a boost if she really needs it. I imagine she will need something tonight to help her sleep as her little body had a very difficult time relaxing earlier. I asked her nurse if holding her might help and she thought it would. So, I was able to rock her to sleep and hold her for about two hours today. For the most part, she slept peacefully in my arms and I was able to reassure her when she started to fuss in her sleep. Although I hate that Little Dorrit has to go through this, I am glad I can help comfort her and help her through this. I wish I had the stamina to stay with her at the hospital all night so I could comfort her when she needed it this evening. By the end of each day, I'm exhausted. I know her nurses love her and always take really good care of her so I continue to put my trust in them.
Sleeping in mommy's arms.

Tuesday, November 4, 2014

New looks

Check out my new looks!

Little Dorrit's breathing tube was successfully extubated today and she looks like a new woman! I haven't seen her sweet little pink lips since the day she was born and we heard her cry today too! I say "we" because with the magic of FaceTime, Mr. Rochester was able to be present while the tube was being extubated and he got to hear her cry too. Her poor little cry is a bit hoarse from having a breathing tube next to her vocal cords for so long but she is still not afraid to make some noise. Her breathing tube was replaced with a RAM cannula that still provides some respiratory support which they will probably start weaning her off of in the next few days. 

AND, amazingly enough, this girl also took a pacifier for the first time tonight. She is back up to full feeds and has not spit up once since her breathing tube came out. Her chest tube had zero output today and the pleural effusions are still gone. If they stay gone over the next few days while she is on full feeds, I bet that chest tube will come out! All of her recent progress is very encouraging and I just pray she doesn't throw us anymore curve balls. Thank you for all your continued prayers!! She is taking baby steps in the right direction to getting better.

Monday, November 3, 2014

Hoping

I almost don't want to share this for fear of jinxing everything, but since I arrived in St. Louis on Saturday, Little Dorrit has been doing really well! When we got to her room on Saturday, the nurse asked me if I wanted to hold her. I was really surprised because I didn't think I could hold her while she had a chest tube. The nurse said it was ok so I got to hold her again Saturday and have been able to hold her every day so far!
One of the best parts about holding her this time is that Little Dorrit is having more longer periods of being awake and alert so I actually felt like I was interacting with her as she just looked around all wide-eyed. 
There is some talk of possibly extubating her ventilator tomorrow and replacing it with nasal cannulas. This is very exciting as it just provides more steps to her breathing on her own! She is back up to full feeds on her special formula with minimal spitting up. And the best part is the pleural effusions have not reappeared...yet. The chyle fluid output in her chest tube is very minimal right now so much that as long as she continues on full feeds with no more pleural effusions, they might even take out her chest tube! See, I'm telling you all this and none of it may actually happen but it's given me more hope and helped my heart feel lighter. The team at Boston Children's is still going to review Little Dorrit's records to help make determinations about her lymphatic system but this will probably take several weeks for them to do. In the meantime, we continue to hope and pray for her body to heal.

"Hope has the power to fill our lives with happiness. Its absence—when this desire of our heart is delayed—can make 'the heart sick.' Hope...is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear." Elder Dieter F. Uchtdorf, The Infinite Power of Hope

Sunday, November 2, 2014

Something new

I meant to post this yesterday - here are some photos of our little Supergirl!
The nurses had to make a few cuts to her costume to get it on her and accommodate all of her tubes and wires but they did it! I'm so glad we have some pictures of her first Halloween! We sure think with all the fighting she continues to do that she is a superhero fighting illness one malady at a time.

This weekend, Mr. Rochester and I are trying something new. When we brought Trotwood with us last weekend, we had our hands full with him although we were all glad to be together. It was difficult to try to keep him entertained at the hospital and also visit with Little Dorrit. Really, there is only so much sitting in a hospital room a five year old can do (even with video games). So, this weekend, I came up to St. Louis with my mom and Mr. Rochester and Trotwood stayed home. I'm planning on staying all week. My mom will leave in the middle of the week and Mr. Rochester and Trotwood will come get me on the weekend. This is our first time trying this out where we are all split up and I'm thinking this may end up being the best way to do things, especially so Trotwood can get back to having a little more parental stability in his life. The only problem with continuing this pattern of being split up is that we only have one car. We've been a one car family since 2006 and we've made it work all these years. With this new adventure in our lives now, I think we  will have to seriously consider getting another car, which is something that will allow us more flexibility in our schedules but is definitely not an added expense I am excited about. So, we'll see how this new arrangement works out this week before making any major decisions.

Friday, October 31, 2014

Happy Halloween!

I always thought it would be fun to be one of those moms who made all of their kids Halloween costumes. Sadly, my sewing skills are lacking much and I have a bad tendency to start projects and not finish them. For the past few years, Curious George has been a huge part of Trotwood's life and I just love how much this kid loves George. About a year or so ago, we bought Trotwood a stuffed Curious George and he still sleeps with it every night. So, this year for Halloween, we suggested that he be the Man-with-the-Yellow-Hat and he got really excited about it. We actually suggested this before Little Dorrit was born and at the beginning of this week, I was pretty sure his Man-with-the-Yellow-Hat costume was not going to happen mainly because I'd unsuccessfully scoured the internet for a pair of boys yellow pants or white pants that I could dye in his size. Whenever anyone asked Trotwood what he was going to be for Halloween, he proudly told them he was going to be the Man-with-the-Yellow-Hat so I really wanted to make it work. On Monday, I had a moment of revelation and looked on the internet for any children's yellow pants and found some available via Amazon Prime (which is a procrastinator's best friend). Just don't tell Trotwood that we didn't purchase the pants in the boys section. 

The pants arrived about an hour before our ward's Trunk or Treat on Wednesday night. I used yellow dye to dye a white dress shirt that was almost too small for him. The hat took several hours to make and I may have shed a few tears in the process. It hat is made out of a felt hat, floral styrofoam, yellow felt, quilt batting, black ribbon, and lots of hot glue and duct tape. Mr. Rochester saved the day and helped me finish up the hat after I had a minor crisis and he also made the tie out of yellow felt. 
Trotwood loved wearing his Man-with-the-Yellow-Hat costume at the Trunk or Treat and when he heard me criticizing my work on the hat, he told me several times how much he loved the costume and what a good job he thought we did. He can be such a sweet boy. For trick-or-treating tonight, he decided he only wanted to wear his Man-with-the-Yellow-Hat costume for a little while and then he wanted to change into an Iron Man costume that we've had for a few years. I suspect his desire to be Iron Man stemmed from the Trick or Treat bag that his Meme sent in the mail. Trotwood had an eventful night and literally ran from house to house trick-or-treating making his own sound effects and pretending to fly as Iron Man. 
--
In an effort to focus on the "happy" part of Halloween, we decided to establish a few new fun traditions. We made this potato soup and ate it in bread bowls while watching part of the movie Hocus Pocus. Then, we went trick-or-treating for a little while and came back so we could pass out candy while listening to spooky Halloween music. I think one of Trotwood's favorite parts about Halloween is passing out candy - every time the doorbell rang, he got so excited and ran to the door saying "Let me! Let me!" In between answering the doorbell, we played a board game together called King of Tokyo and then finished up our Halloween movie. All in all, it was a great evening. Just what we needed today.  

We did get Little Dorrit a Supergirl costume and I'm looking forward to getting photos of her in her costume from the nurses. 

Thursday, October 30, 2014

Mystery...

Today, we found out that results we received yesterday of Little Dorrit's MRI were inaccurate. The initial results proved to be inaccurate as later in the day, the chief of radiology reviewed her MRI study and disagreed with the radiology team that initially reviewed them. He believes, as does our current neonatologist, that Little Dorrit's lymphatic system did not form properly and they have requested permission to send Little Dorrit's records to Boston Children's hospital to consult with a team of Harvard doctors who work primarily with the lymph and vascular systems. We were told there is one experimental drug that can been used  to possibly help her live with this lymph/vascular system issue but there is no surgery or anything else that could fix this issue. There is one drug and it may or may not help her and she may or may not be a candidate for it. The doctors believe this new challenge is unrelated to Little Dorrit's protein C deficiency. We asked the doctor we spoke with today about the worst case scenario and it is bad. I need to stop thinking about the worst case scenario, but my heart truly breaks at the possibility of parting with yet another child.

I don't really have any positive or inspiring words to share tonight. A friend of mine shared this video with me recently and I thought I should share it now as it taught me more about faith. Thank you for your continued love, support, and prayers.

Wednesday, October 29, 2014

Mystery or miracle?

Many of Little Dorrit's caregivers keep referring to her as a mystery. I keep wondering if perhaps we are experiencing small miracles. For the first few weeks of her life, Little Dorrit had ultrasounds of her head every day to try to monitor blood clots and flow in her head. At that time, she was too sick to move to get an MRI and the ultrasound was all they could use to look for clots despite it not being the most accurate technology to use for this. Successive ultrasounds revealed no blood flow in Liitle Dorrit's superior sagittal sinus indicating that she had a clot in her head. We worried about this and what it could mean. When she was finally able to get an MRI of her head, no clot showed up on the study. Mystery or miracle? Or mistake of the ultrasound? 

The last week or so Little Dorrit has had  unexplainable pleural effusions. When she had her lymphangiogram, for some reason, the dye that was injected in her that was supposed to move through her lymphatic system and reveal leaks, etc. never actually made it to her lungs. It seemed to get stuck below her chest area. This indicated a problem or even a malformation of her lymphatic system which is why she had an MRI of her chest and abdomen yesterday. According to a nurse practitioner we spoke with today, the results of yesterday's MRI did not show any abnormalities or clots in Little Dorrit's lymphatic system. Mystery or miracle? 

Little Dorrit is slowly beginning her feeds again of the special Enfaport formula and she is still slowly bring weaned from her tidal volume pressure on her ventilator. Even though I know Little Dorrit is still very sick and that she may continue to encounter even more challenges to her recovery, I'd like to think that small miracles are happening for her and that any mysteries or mistakes will be solved and resolved. 

Monday, October 27, 2014

Awake

We got home from St. Louis last night. Most of the time we were able to visit with Little Dorrit, she was asleep. Today, one of her nurses sent me this photo of her awake with her eyes open. I just love it! The swelling in her face has gone down so much.
Tomorrow Little Dorrit has an MRI scheduled to image her chest and abdomen. Hopefully, this will give us a better idea of what is happening with her lymphatic system. We are hoping and trying to stay positive about this. One of her nurse practitioners told me today that she could no longer see the pleural effusion on Little Dorrit's chest x-ray. That is good news, however, it doesn't mean it is completely gone. We are hoping it diminishes soon and stays gone. As of yesterday, Littke Dorrit is breathing "room air" although she is still on her ventilator for the air pressure (which they are going to slowly wean down). 

Sunday, October 26, 2014

40 Days

Just a quick update. Little Dorrit's swelling has gone down quite a bit which is great! Her face looks so much better! However, she is still leaking fluid into her pleural cavity at about the same rate. All of this fluid is being measured when it drains from the tube in her chest. This condition is still being monitored and Little Dorrit should be getting an MRI of her abdomen in the next few days to help provide answers as to what is happening there. For some reason, I am really worried about this. Poor Little Dorrit has already faced so many challenges in her 40 days of life, I hate that more keeping coming at her. This morning when the doctors were rounding they mentioned she was 40 days old. I can't believe it's been that long - 40 days seems like such a long time and yet it has all just flown by.

Friday, October 24, 2014

Regression

Not the best day. Last night we drove up to St. Louis and this time Trotwood came with us. When we saw Little Dorrit this morning, she had been downgraded from a crib to one of those open tables she was on previously. Bummer. This was mainly because of the chest tube she has now that continues to drain fluid from the cavity around her right lung. Apparently chest tubes and cribs don't mix well. A nurse practitioner also informed us that the area around Little Dorrit's left lung is also filling with fluid. If the fluid fills to where Little Dorrit has difficulty breathing, then they will insert a chest tube on her left side as well. And even just having one chest tube  means we can't hold her. And she could have the tube(s) in for weeks until the fluid stops accumulating. 

They have also stopped her feeds temporarily because she started spitting everything up today. And they don't know why. The lymphangiogram did not tell us anything because for some reason the dye has been very slow to move through Little Dorrit's lymphatic system. And they don't know why her system is so slow. So, we do not know why she is leaking fluid around her lungs. She is also on lots of sedatives and medicines to help her manage her pain and keep her comfortable, including a morphine drip. Why is it discouraging to me that my infant is on a morphine drip? This is all just very frustrating because a week or so ago, it had seemed like Little Dorrit was getting better and now she seems to be regressing and facing new challenges. I hope she can overcome these new challenges and avoid anymore roadblocks to her recovery.


Wednesday, October 22, 2014

The Flow is a Go

Yesterday we had our big meeting with the doctors. It was Aria and I and 12 others representing neonatology, hematology, genetics, neurology, pediatric advance care team (pact), nurses, and one social worker. (We talked with ophthalmology earlier in the day because Little Dorrit's attending physician thought there might be too many people at the meeting). The meeting was a bit overwhelming at first.

Neurology went first and gave us the results of the MRI.  Little Dorrit has blood flow in her superior sagittal sinus! We are so happy about that! There are not clots in her brain. She does have some small bleeds but they are on the outside of her brain and neurology is not terribly concerned about those for now. Unfortunately, she does have some damaged white matter throughout her brain. White matter is the nerve cells that connect grey matter which work together to carry nerve impulses between neurons. The neurologists are unsure what the impact of this finding will have on Little Dorrit.  She is young and her brain is still forming so with early and consistent therapy, they believe it is possible to mitigate a degree of the trauma her white matter has suffered.

Hematology is still trying to find the right levels and intervals of medication for her situation.  The pact team is trying to manage her pain. Genetics had Aria and I provide more blood for further genetic testing. Often, people with Little Dorrit's condition only have one gene error but she has two and they are trying to find out why. The results of all three of our tests should be known by the beginning of December.

The doctors have now tapped and drained her pleural effusion twice. The fluid returned yet again overnight so today they installed a permanent line to drain the fluid out. Since doing so, they have already collected 210 milliliters! Tomorrow, Little Dorrit will undergo a lymphangiogram which is a special x-ray of the lymph nodes and the lymph vessels. Hopefully, this will tell us exactly where and why her lymphatic system is leaking and filling up her pleural space. Tomorrow, they will also take out the SICC line in her groin and give her a PICC line in her arm.

Ophthalmology is concerned about the hemorrhage in Little Dorrit's right eye. The fellow we spoke with said that when he examined her eye he could not see the back of it because of all the blood which means that she can not see out of it. They want to perform a vitrectomy as soon as she is stable enough. The vitrectomy will remove the vitreous gel from the middle of the eye thus allowing her, hopefully, to see out of that eye.

There is some progress and hope but Little Dorrit is still very sick and new conditions continue to arise thus stalling or retarding her progress. She continues to be a mystery to her doctors but we continue to hope, to varying degrees, that things will generally trend upward. In this seemingly never ending cycle of hoping, worrying, traveling, meeting with doctor after doctor after doctor (then studying our notes from our discussions with them so we kind of know what they are talking about) we continue to feel your love and support and are grateful for it all. Thank you. -EA

Tuesday, October 21, 2014

Stay tuned

This morning we had our big meeting with a bunch of different doctors and we got the MRI results.  The meeting wasn't terrible. Mr. Rochester will write up a blog post about everything tomorrow so stay tubed.

Monday, October 20, 2014

Finally...

Little Dorrit finally had her MRI today. Tomorrow we have a big meeting with doctors from neurology, hematology, neonatology, and a few other disciplines to discuss Little Dorrit's health and the MRI results. We'll write a more detailed blog post about the results once we have them. As far as we know, Little Dorrit is doing ok on her ventilator for now and the fluid accumulation in her lungs is minimal.

Saturday, October 18, 2014

A feeling of normalcy

For a few hours today, our life almost felt normal despite spending the majority of our day with our sick baby in the NICU. I got told hold Little Dorrit for about two hours while sitting in a recliner in her room. She slept in my arms. I put my feet up and dozed with her. Then, she and Mr. Rochester also did the same thing for about an hour. During this whole time, I don't recall a single alarm going off in her room. It just felt...normal. And it was nice.

Around noon today, Litte Dorrit had the procedure to drain the fluid in the space around her lungs. She did fine and they removed 140 ml which is a lot of fluid, especially considering that 120 ml was removed just two days ago, and she's a baby. In the morning, she will get another chest x-ray to see if any more fluid has reaccumulated. If all goes well, she should be getting an MRI on Monday or Tuesday.


Friday, October 17, 2014

Happy One Month!

Today is Little Dorrit's one month birthday! Although since her birth, we have not experienced with her the traditional first month of a baby's life including late nights at home and daily interactions, we have still tried to get to know her and learn who she is to the extent that we can. In the spirit of celebrating her one month of life, I'm going to share a few things we have learned about her so far.
  • She does not like having her diaper changed.
  • Her left hand is her "grabby" hand as termed by her nurses. Little Dorrit has tried to yank out various tubes with this hand on many occasions.
  • She likes to kick her little legs.
  • She looks good in peach.
  • We think she will probably have brown eyes.
  • She has her mother's toes (well, seven of them).
  • She likes music.  
  • She has quite a temper (which she did not inherit from her mother).
Little Dorrit was scheduled to have an MRI today but that was delayed because more fluid has accumulated in the space around her lungs. The plan is to drain that fluid again tomorrow morning. They were going to do it tonight but her INR (blood levels) are not where they should be yet to do this sort of procedure. Once again, her poor little body is super swollen, especially her head and she looks like a little marshmallow baby. 

Thursday, October 16, 2014

Under Pressure

Yesterday was challenging. We received a call in the morning that Little Dorrit's lungs were full of liquid and that the resulting pressure was preventing her right atrium from working. Despite this, her heart was still able to circulate her blood but it just had to work overtime to accomplish its task.
They told us the procedure to drain her lungs would not happen until 9 p.m. that night and that afterwards someone would give us an account of the procedure. After a nerve-racking day with our stomach in knots, we received a call somewhere between 11:30 p.m. and midnight explaining that the procedure was a success and that they removed 4 ounces of fluid from her lungs.

Little Dorrit suffered from, yet again a rare condition, called chylothorax which is a type of pleural effusion (excess fluid that accumulates in the pleural cavity or the fluid-filled spaces that surrounds the lungs). It is most commonly a complication of thoracic or cardiac surgery. As for why this is happening in Little Dorrit, the doctors are stumped. Chylothorax usually results from a leak in the thoracic duct or one of the main lymphatic vessels that drain to it. The doctors have taken Little Dorrit off all breast milk and formula and have placed her on a special diet fed to her intravenously and later will be moved to a special formula until the doctors determine she can have breast milk again.

In a bit of good news, Little Dorrit has almost returned to all her pre-proceedure levels regarding respiration.  The doctors could not get out all the fluid of the pleural effusion but feel she should not have any serious setbacks as a result of yesterday's issues. Her cardio echogram and X-rays do not show any blood clots or issues.  

Little Dorrit has an MRI scheduled for tomorrow at 2 p.m. if everything goes well. We have been waiting a long time for this imaging to take place as it will give us a clearer understanding of what exactly is going on in her brain. The blood clot in her superior sagittal sinus is still there in addition to spots that may be small bleeds. Tomorrow's exam will help us better understand the extent of the bleeding or clotting that has been happening in Little Dorrit's head. I am a little nervous to find out the results of the MRI and can only hope that the treatments they have been administering are having a positive effect even though they do not know exactly what is going on in her head. 

As always, thanks to everyone for their prayers and well-wishes and please keep Little Dorrit in your thoughts tomorrow. -EA

Tuesday, October 14, 2014

SLCH Cribs

In my last post, I mentioned that Little Dorrit was moved into a crib this past weekend. She went from this setup:
(can you find the baby in the photo above?)
to this
We also did some minor attempts at decorating the room for by putting up some of her outfits and colorful blankets throughout the room. Trotwood's contribution includes Superman and Wonder Woman "guys" and a few Scooby Doo coloring pages taped to the windows. We added a few little lovies to Little Dorrit's crib and the NICU found a nice little mobile to hang that also plays music (which she seems to really like). Most of what we have for Little Dorrit are things that were given to us for her older sisters and we have just kept it all throughout the years hoping we'd be able to use them at some point. And we are keeping that hope alive!

Monday, October 13, 2014

No more nitric

Just a quick update. Little Dorrit came off of the nitric oxide yesterday and seemed to do fine. They are working on weaning her down on her pain medications but they also want to make sure she is still comfortable. This seems like a slightly tricky process but I am sure it will get worked out. Little Dorrit graduated to a crib in the NICU which is something patients are moved to when they are more stable. Yay! And she can wear little nighties and hats and the nurses will swaddle her with our own blankets. Each weekend we slowly try to add more color and decoration to her room to make it more her own. I'll try to post some photos tomorrow of her new bed and her room. It's been so wonderful to finally be able to hold her these past few days. Although she is still very sick and has many challenges ahead of her, we still  continue to hope for more good news as more tests and imaging will probably be done over this next week. 

Saturday, October 11, 2014

Thank you

I just wanted to say thank you to everyone for all of the love and support we have been receiving lately. So many people have provided service or donated to the gofundme page our friend Amber set up for us. At some point I would like to individually thank everyone who donated - for those who remain anonymous and those who didn't, please know how grateful we are for your generosity. Your generosiIty will help us immensely as the medical bills continue to come in and as we continue to make trips back and forth to St. Louis for Little Dorrit's care. We are so thankful for the continued prayers on behalf of our family and I know we draw strength from them.

Little Dorrit continues to do well on her ventilator and I have high hopes she will be weaned completely off the nitric oxide this weekend. I'm so glad we're getting to spend some time with her this weekend.

Friday, October 10, 2014

Due date

Today was Little Dorrit's original due date and we got to hold her for the first time tonight! It was wonderful...I cried a little. When I mentioned to the nurse that today was Little Dorrit's original due date, she said something like "Today would have been the day you would have held her for the first time!" It's neat it worked out like that.


We are so glad she is doing so much better and keep hoping she continues to recover quickly. 

Thursday, October 9, 2014

Good news!

This morning we received good news from the NICU and one of the nurses texted me this photo of Little Dorrit with her eyes open. I just love that her eyes are open and she is all swaddled up! We've mostly seen her with her eyes closed and just sprawled out in froggy style on her NICU bed with a tons of tubes attached to her. Also, her head still looks swollen but it is a vast improvement from where we left her on Sunday. Her face used to be so swollen, she could barely peek out of her eyes - this is the widest I've seen her eyes open so far. So, more good news is that Little Dorrit continues to do well on her conventional ventilator and she has been weaned down to 5 from 20 on her nitric oxide. Over the next few days, they will slowly try to wean her off of the nitric oxide completely and I know our doctors are working on trying to figure out what her long term care will need to be to deal with her protein C deficiency after she leaves the hospital. I still feel like, even after she is off the ventilator, she will still need to be in the hospital for some time until her toes are as healed as they are going to be and we have a long term care plan for her. But, we are making progress and that is encouraging!!
Mr. Rochester and I are planning on heading back to St. Louis in the morning. I'm really excited because I'm pretty sure we will get to hold our baby girl this weekend, as long as she continues to do well on her conventional ventilator. My sweet co-workers at work put together this huge basket of goodies for us to take with us on our trips back and forth to the hospital. We were so touched by the thoughtful gift and plan on putting it to good use this weekend.
We are still trying to count the tiny victories and keep hoping for larger ones (I'm trying not think negatively about impending MRIs and what that may reveal to us). Trotwood will be staying with some friends from church this weekend and although I feel sad leaving him again, I know we need to spend time with Little Dorrit this weekend and Trotwood would not be content at the hospital at all. All this back and forth is exhausting and I am so grateful for the love and support we have been feeling from friends and family. Thank you for all your thoughtful actions and continued prayers for our family. 

Wednesday, October 8, 2014

Trotwood Time

The last few days since we've been home from St. Louis, we've tried to make an effort to spend some quality time with Trotwood, especially since we decided not to take him with us again this weekend. As of last week, I'm cleared to drive again as long as I stay away from the Percocet, and I don't really feel like I need the pain meds as I haven't been in much pain and feel like I'm healing well. Yesterday, Trotwood and I made a visit to his old preschool where he got to visit with a few of his friends that did not move up to kindergarten this year. Some of the children also asked him questions about what you do in kindergarten. Mostly, Trotwood just nodded or shook his head to answer the questions but it was still funny to see what the other kids asked him. Then, he got to play with some of his friends at a few of the different centers.
Today, Mr. Rochester and I went bowling with Trotwood. Well, Mr. Rochester and Trotwood bowled while I watched. I still don't think I'm supposed to pick up anything heavier than 10 pounds and I didn't want to chance anything with a 6 or 8 pound ball. It was still fun to watch them though.
I'm glad that Trotwood has had this week off of school. It's been nice to spend more time with him since our lives have been so crazy lately. It's so hard to leave him when we go to St. Louis...but then it's also hard to leave Little Dorrit in St. Louis when we come home to Trotwood. Either way, you feel a little torn in two. 

Little Dorrit is still doing well on the conventional ventilator and the medical professionals working with her still continue to try to wean her down on her ventilator and nitric oxide support as she can tolerate it. Her three necrotic toes are being treated with Betadine with the goal to have her body naturally reabsorb what tissue it can while getting rid of the dead tissue. After that happens, a plastics team will come in and clean up her toes however they can. Although I've mostly come to terms that Little Dorrit will lose three of her toes, sometimes, I still feel sad about the impending loss of her tiny digits and how it might affect her throughout the rest of her life. How will it affect her when learning to walk? Will she be able to run or dance? Will she need to wear special shoes? Mr. Rochester continues to remind me that her toes do not define her. And honestly, even writing about this, with all Little Dorrit's other serious issues, it almost sounds trivial to be so concerned about her toes which really will have little bearing on her cognitive development. 

We still have no idea what effect her bleeding and clotting issues have had on her poor brain and I don't think we will know until she is completely off of the nitric oxide - then they should be able to move her enough to take her to do the necessary imaging. Thankfully, we have not had one of those middle-of-the-night NICU calls in awhile and I'm so glad about that. Most of our updates right now involve little changes that are being made to her care. Each time I call the NICU to check on her or receive a call from a 314 area code, I feel a little less nervous about the news I may be receiving. We continue to hope and pray for the best but realize she will need much time to heal and for her doctors to determine what care she will need in the future. 

Monday, October 6, 2014

Sunshine day

Trotwood attends a year round school and does not have school this week. The weather outside is beautiful with just the right amount of sunshine and coolness in the air and Trotwood spent a lot of time outside today. He built fences for his cars and then would wreck them with his scooter. Although I feel anxious to go back to St. Louis and see Little Dorrit, it has been nice to be able to spend the day with Trotwood.



Little Dorrit has done well on the conventional ventilator since yesterday and we just hope that the medical professionals can be successful weaning her off of her oxygen. What usually seems to happen is, they start to wean her down and then she gets really mad and worked up about something, like when they change her diaper, and then they have to go all they way back up to 100% on her oxygen while giving her some extra sedation or pain/anxiety medication to get her to calm back down. So, it's almost like two steps forward, one step back. As far as I know, it seems like they are keeping her blood clotting and bleeding under control but I think we will know more about all of that when Little Dorrit is well enough to have an MRI and other tests.

Sunday, October 5, 2014

A museum and a ventilator

Although I don't think we can bring Trotwood with us every time we go to St. Louis, Trotwood sure seemed to enjoy being with us this weekend. He got to spend some time with our good friends and their kids - they went swimming at their hotel, played games and also visited the St. Louis City Museum on Saturday. On Saturday, after Mr. Rochester and I said our good-byes to Little Dorrit at the hospital, we met up with our friends at the City Museum. That place is amazing! It's an old warehouse that has been turned into a giant indoor playground full of tunnels and slides and all sorts of things to climb on, over, and under. I just mostly sat and watched but when I'm not just two weeks post C-section, I think it would be super fun to go back and climb around with Trotwood there.

I'm also glad we brought Trotwood with us because I got to see random things like this - Trotwood slumped in his seat with his monkey backpack/leash on trying to sleep against the window while clutching a stuffed Spiderman guy. 
Also, he grabbed our phones at different times and took photos in Little Dorrit's room from his perspective. I'll have to post some of those on the blog at some point because they are kind of neat.

We arrived home again tonight and I feel like this time our visit to St. Louis was more encouraging, at least for me. Yesterday, we sat down for probably an hour with a neonatologist who is working with Little Dorrit and although, the doctors don't downplay how sick she is, they also tell us when she is making improvements and at least, today, I'm finding comfort in that. As of 3 pm today, she has been moved from an oscillator to a conventional ventilator and we are hope hope hoping she will be able to tolerate that. So far, so good. Pray that she can tolerate the ventilator as being on this type of breathing apparatus will help her get better, be a bit more mobile, and allow the doctors to do different tests on her that they are unable to do when she is on an oscillator. Also, if she stays on the conventional ventilator, the next time we see her, we can probably hold her! Exciting!