Monday, March 30, 2015

Little D and a Duck

Little Dorrit continues to do about the same. She is really just her normal, happy self. No fever. We should hopefully know by tomorrow her final blood culture results from Sunday. If they are negative, we can start our 10 day countdown to go home. Unless for some reason, her doctors decide that we can just give her the antibiotics at home with home health monitoring. That would be nice but I feel like they are going to make us stay in the hospital just to be safe. Apparently, this type of infection can be really bad. And, honestly, there is no way we would have known she was even sick if she hadn't had that fever on Friday. So, I'm hoping we caught it early and we get rid of it quickly. 

Today, almost as soon as her therapy team in Fayetteville found out she was sick, they sent over a balloon and a stuffed animal (duck) from the gift shop. It was so sweet! They are the greatest. Then about an hour later, the lady from the gift shop showed up again with a gift card from a friend of mine from high school who actually works at the hospital. We haven't seen each other in years and are planning on visiting tomorrow. This evening, we had a few different visitors and it was nice to just visit with friends for awhile. During the day, I'm not sure what to do with myself when Little Dorrit is napping. And her daytime naps are hardly long enough for me to nap as well. I'm just glad things seem to be going well, so far, and hopefully this infection goes away soon.



Sunday, March 29, 2015

ER Adventures

Before putting Little Dorrit to bed on Friday night, she felt a little warm to me so I took her temperature. As I watched the digital thermometer jump from 99 to 100 to rest on 102.4 degrees, I groaned inwardly. Because she has a central venous line, we have been instructed to take her to the local emergency room if she had a fever of 101 or above. So, I took her temperature three more times, just to make sure and then Mr. Rochester also took it. Same result. So, off she and I go to the emergency room at 8 pm on a Friday night. Of course, when they take her temperature there, it is only 100.7. A big part of me really wanted to just drive back home, give her some Tylenol and put her to bed because her temperature wasn't 101, right? However, after consulting with Mr. Rochester, we decided it was best to see the ER visit through and follow the protocol Little D.'s hematologists established. So, we stayed 4.5 hours at the ER so Little Dorrit could get some antibiotics and some blood work drawn. We went home that night and the ER folks said I would get a call if her blood cultures came back positive. I went to sleep that night, confident I would not be receiving a phone call the next morning. Ha! I was so confident, I even turned on the "Do Not Disturb" function on my phone, so when the call did come, I missed it and wasn't able to return it until an hour after it came in.

When I called back the ER nurse, she stated that she had spoken with Little Dorrit's hematologists in Little Rock and that we needed to be seen in the emergency room at the children's hospital. Little Dorrit's blood had come back positive for gram negative rods meaning she had a blood infection. Mr. Rochester and I decided it was best that I go since I am still on intermittent leave with my work and he can't really miss work. So, I quickly packed and drove the three hours to Little Rock. My mom met me at the ER and we spent another five hours in an ER where it was decided that Little Dorrit should be admitted to the hospital. 

Now, this whole day Little Dorrit has been acting completely normal, actually better than normal! She smiles and coos at everyone and just wants to play. She doesn't look or act sick and she has no fever! By the time they figure out she needs to be admitted, it is late and I am just exhausted and let's be honest, a little bit of a mess. But, there are some angels working at children's hospitals, and they helped us get to where we needed to be and my mom also helped a lot to me settle in. So, here we are in a room on the hematology/oncology floor. (Thank goodness it isn't the PICU!) Little Dorrit is on antibiotics and still acting normally (hooray!). She has to have a negative blood culture before she can be released but they are also saying she may need to stay up to 10 days after her negative blood culture so she can be monitored for fever and so they can ensure her blood cultures stay negative. Right now, I am grateful for the little blessings we have and for having friends and family who live around this area that are willing to help and just come visit.




Saturday, March 21, 2015

Six months

This past week, Little Dorrit passed her six month mark! And, side note, Mr. Rochester and I decided that we really need to start celebrating half birthdays. Not just Little D.'s half birthday but all of ours...and I believe mine is next. *wink wink* Sometimes, our days and nights all seem to run together and finding little reasons to celebrate or things to look forward to has really helped our little family these last few months and helps me see through the next few. Things like visitors and surprise visitors (last weekend!), themed family movie nights, and half birthday celebrations are just a few. Oh, and these amazing photos that Lissa Chandler Photography took for us (check out her blog link for more of the photos)! Seeing them just makes me happy. Here's a few of my favorites:




At six months, Little Dorrit is growing and gaining weight. I think she is about fourteen pounds now and about 23 inches. Sometimes, it is hard for us to see Little Dorrit's progress because it just feels so gradual, which can be discouraging. She still doesn't roll over or hold her head up well although I know all the therapy and tummy time we make her do must be helping her strengthen all those muscles. In the area of bottle drinking, she has kind of regressed and we're not sure she will get catch on to the point she takes all of her nutrition through a bottle. Thank goodness for G-buttons! I think we could probably start trying some sort of solid food with her but Little Dorrit's life has been so regulated up until now, I feel like I need someone to tell me to do it...like a dietitian, pediatrician, or speech therapist. This all sounds a bit dreary so I'll mention some positives:
  • Little Dorrit's protein C level came back last week at 38%. That lab was taken eight hours after her morning dose of Ceprotin. We've switched to every 12 hours now and Little D.'s hematologists feel like she should be fine even as low as 25%. They feel like her percentages would not deteriorate that much more if we continue to give Little Dorrit her medication every 12 hours. 
  • We've heard a few little laughs from Little Dorrit. They still sound a little like a cough-gasp-hiccup rolled into one but we're pretty sure it's a laugh.  
  • We've all made it through random illnesses in our house and have managed to by-pass the flu so far.
On this blog, I do try to stay positive but as I'm sure you've noticed, we do have many rough and worried moments with Little Dorrit and life in general. Just today, Mr. Rochester and I were talking and I said, "I feel like all she does is cry and sleep these days." Obviously, that is an exaggeration because at this very moment she is happily playing in her activity gym (which may last for 10-15 minutes). We, often, do feel the strain of our situation and try to deal with it as best we can and we are so grateful for the love, prayers, and support of our dear family members of friends.

PS The secret package was from my sweet sister in Japan. Love her.

Tuesday, March 10, 2015

Just a few things

Yesterday, Little Dorrit had an appointment with her hematologist. Thankfully, the appointment was at a local(ish) clinic so we didn't have to drive all the way to Little Rock. At the appointment, her doctor said that we could start giving her the Ceprotin medicine twice a day (every 12 hours) instead of three times a day (every 8 hours). We will be increasing the dose a bit but her doctor thinks that her lowest protein C level will be okay if we do this. Giving her the medication twice a day will definitely make our lives easier but Mr. Rochester and I were still really nervous to start doing this yesterday. Little Dorrit won't have her labs drawn until Friday sometime so it will be next week until we know the results of her protein C low level, or trough. So far, everything seems to be fine. We just worry about blood clots if her protein C levels get too low. I would feel a lot better if we could have the labs drawn a day or so earlier so we could find out the results earlier.

Physical and occupational therapists have also begun seeing Little Dorrit in our home. She seems to be doing well in both areas, although, of course, because of her time in the NICU, she is developmentally behind. She doesn't roll over and has weak muscles, but I know she'll be able to catch up at some point! Her physical therapist also recommended that we get a scan done of her head. Because she's spent so much time lying on her back, the back of her head is pretty flat and she may need to wear one of those baby helmets. I don't know much about this but after doing a google search, it seems like there is some controversy on whether or not these helmets are actually effective.

Little Dorrit is also supposed to be starting speech therapy but for some reason we've been having trouble getting the doctor's script back for her on this and she can't start speech therapy until the therapy team has this. The amount of food she takes by mouth has decreased to about 15-25 mls and before we had it between 30-50 mls per feeding. So, that is a little discouraging. Every three hours during the day, she gets 100 mls of formula. Whatever she doesn't take by mouth, we put through her feeding tube. I hope that once she starts speech therapy, she'll do better at taking a bottle.

Two nights ago, Little Dorrit pulled out her G-button but this time we did not go to the emergency room. Mr. Rochester and I just followed the instructions to put it back in and I think we did it correctly...but I feel like I still need to call a doctor or someone to confirm. What if we did something wrong somehow? She's had her feedings since then and I think everything is okay...but it's still hard not to worry that we messed something up somehow. Sometimes, all this medical stuff makes me weary.

Today, I started back to work part-time. I'm still able to be on the catastrophic leave program and working part-time will allow me to stretch out the hours I have left in that leave program. I'm hoping working part-time for awhile will help us get everything more figured out to where we can  manage it when I have to go back to work full-time. Who knows? Maybe by that time Little Dorrit will be using just a bottle for all of her feedings!
I seriously can't believe how much she loves the little Lamaze horse she is grabbing in this photo. It's one of her favorite things. 

Saturday, March 7, 2015

Three for three!

On Tuesday, Little Dorrit's last two toes came off! While this sounds sad and grotesque, it's actually progress for her! It's just one more medical challenge she is progressing through. For months, the second and third toes on her left foot have been fused together in a sort of hardened, mummified state. I'll tell you the story because part of it is just funny.

After changing her diaper on Tuesday, I was about to put socks on Little Dorrit's feet when she kicked her left foot out and hit the knuckle of my hand with her mummy toes. She is an active little kicker and one of her favorite things to do these past few months has been to just lie on her back and kick her legs out. Anyway, she cried out immediately, and I saw a little blood seep out under the toes. After a few minutes, Little Dorrit calmed down so I didn't worry too much about it since her toes still looked pretty much the same and the bleeding appeared minimal. Even so, I thought it would probably be good to talk to the plastic surgeon's office at the children's hospital. So, I call and I'm on the phone with a nurse from the department while I'm holding Little Dorrit and the nurse is asking me questions about her toes. I look down at Little Dorrit's feet and am a bit shocked to see that her two toes are gone! I gasp into the phone and say, "Her toes just fell off! Just now!" I think I probably also said something like, "And I don't know where they are!" Because I didn't! I had been walking around the house holding Little Dorrit with one arm and talking on the phone with the other when her toes fell off. Not that it was important that we hang on to the fallen-off-mummy-toes but I didn't want to horrify someone who could possibly "accidentally" find them at my house. As the area-on-her-foot-formerly-known-as-toes had only bled minimally, I put Little Dorrit down and got on my hands and knees in the living room to look for the absent toes. After just a few minutes, my search came to an end as I found the toes camouflaged among the multi-colored print of the rug in our living room. And, no we aren't keeping her toes. We took pictures and that should suffice. 
So, that was exciting. Oh, another exciting thing. We had our first trip tot ER with Little Dorrit last Saturday during a snowstorm (well, an Arkansas snowstorm). That morning, Mr. Rochester was in the the midst of unbuttoning Little Dorrit's pajamas and unintentionally "unbuttoned" her G-button and her G-button popped out! Normally, I think replacing her G-button is something that we will be doing in the future but when we left the hospital in January, they told us to take her to the ER if her button came out. So, we did. We haven't actually been trained on how to replace the button ourselves although I've watched a few videos on how to do it and talked to some other moms. Before going to the ER, we were able to put the button back in and just put some gauze over it with tape to keep it secure. All the ER doctor did was replace her old button with a new one (which we brought with us) and used saline to fill the balloon on the inside of her stomach that secures the button to her. Something I think we can definitely do in the future on our own. Funny thing, this happened on Saturday, February 28th. She was supposed to have an appointment five days later on Thursday, March 5th with gastroenterology to check her button. But, that was cancelled due to more ice and snow so it's probably good we got it replaced when we did.

As you can see, we've had an exciting week full of new and exciting medical adventures! Ha! That's all for now.

Sunday, March 1, 2015

Lately

Well, it seems February flew by and I only wrote two blog posts the entire month. I guess that pretty much sums up our lives at the moment - each day (ha! and night) has been full of taking care of babies - five year old and five month old ones. Little Dorrit hit her five month mark last month. Although we've only been home from the hospital with her for almost two months now, it kind of seems like it has been forever. Mr. Rochester and I are getting more adjusted to her routine at home while taking her to her many medical appointments. Thankfully, her physical, occupational, and speech therapies will all be done at our home so that is one less place that we  need to take her. We, hopefully, will only need to travel to Little Rock every few months. 

A few weeks ago, I took Little Dorrit to Little Rock for her eye exam under general anesthesia with an oculoplastics ophthalmologist. In reality, I guess that went okay. After the appointment, I was really frustrated again, but this time, I realized I was mainly upset because I wanted someone to tell me something different about her eye, and also to tell me more about what happened to her right eye and it just doesn't seem like anyone can. Back in December, I really felt like maybe there would be hope for her to see out of her right eye if we acted quickly enough but now, it seems like there is just no hope in that area. And I guess, I just need to accept it. I think I go through phases of accepting and not accepting it. Really, I should just focus on that fact that she can see just fine out of her left eye. The oculoplastics doctor said that her right eye is a good size and we shouldn't need to remove it. So, that's good. 

Trotwood seems to be doing okay with everything. Honestly, I think he is enjoying having a sibling and Little Dorrit loves to just watch or interact with him. Trotwood always wants to be near her and the photo above is of the two of them snuggling in Trotwood's bed. Most of the time, he's just sweet to her. Mr. Rochester and I are doing okay. We are still trying to figure everything out with school and work and what is best for our family. It would be nice if there were easy answers to all of our difficult questions, but I still have hope it will all work out somehow. 

Wednesday, February 18, 2015

Secret package

A mysterious package from Amazon containing this arrived today at our home:
There was no card or any indication who it was from but I'd just like to say thank you to whoever sent it. It made my day and I'm excited to take some "me" time (at some point) to play with it. So, thank you to my anonymous gift giver. I feel loved. 

I know it's been almost two weeks since my last update. Things have been going as well as they can and I'll write a Little Dorrit update in the next few days. (She's five months old now!)