Friday, April 24, 2015

Helmethead

Little Dorrit's physical therapists have suggested that she be fitted for a baby helmet because she has a flat spot on the back of her head. And, even though she has rolled over, she doesn't roll over a whole lot and isn't moving as much as other babies her age (seven months old now!). Although I will say, this past week, she has made vast improvements in that area and actually seems to want to roll over. Anyway, because of all of this, we went to Little Rock last week and Little Dorrit was fitted for a baby helmet. I thought she was going to get really mad during the head scan but she was actually super happy when the head scan was being done.


We introduced Little Dorrit to some solid foods (rice cereal, pears, and sweet potatoes) a few weeks ago and that is going okay. I think I've come to the conclusion that she just doesn't love food/eating/drinking. She doesn't have oral aversion because she will suck on her pacifier all day long and want to put toys in her mouth like any other baby, but trying to feed her from a spoon or bottle can be very difficult. She only takes a bottle if she feels like it and even then we are lucky to get her to drink 20-30 mls. Concerning baby food, she doesn't seem to like having the actual food in her mouth and will often push it right back out with her tongue. Luckily, we have a speech therapist who is working with us on all of these issues and we keep hoping for improvement. This past week, we tried a sippy cup with her and I am hoping that will work better for her.

Despite her dislike of eating, she is gaining weight, thanks to her G-button! On April 15th, she had a well child checkup and she is 16.5 pounds (47th percentile) and 24.5 inches long (2nd percentile). We have a short, chubby little baby and boy, does she have some thunder thighs (and they are so cute)! Trotwood was always such a long, skinny baby, having a tiny, fat baby is a new thing for us. But she is very squeezable and we just love it. That's all for now!

Monday, April 13, 2015

Our January 2015

So, it seems our lives have been crazy for a long time now...and I haven't been able to do much scrapbooking. Each year for the past few years, I've started to do project life to document our life but usually around April, I've been unable to continue project life for one reason or another. This year, I decided I would try again but this time, I'm using the project life app to start my layouts and then I'm exporting them out and adding a few things in Photoshop. They're simple pages and I'm using Becky Higgins' project life cards. I'm still way behind this year already but I'm hoping to catch up. Here is our January:





Sunday, April 12, 2015

Movements

Well, Little Dorrit and I arrived home from the hospital a week ago Friday night and we were able to spend Easter with our two favorite boys. Everyone we encountered at Arkansas Children's Hospital was super helpful and just nice. I think Little Dorrit got a little spoiled from all of the attention she received from every nurse, doctor, and staff member that came in her room for something. I think the antibiotics she was on must have really been helping her to feel better because she really perked up and continued the smiley trend since we've been home! Tonight we gave her the last round of antibiotics and we are hopeful she doesn't end back up in the hospital again anytime soon. For some reason, this picture didn't upload with my last post so I wanted to share it here from when we were in the hospital.
We had a nice Easter at home where we watched LDS General Conference and just spent time together as a family. Thankfully, this last week has been pretty uneventful except for a few things. Little Dorrit rolled over last Sunday! I'd left her on her back in the living room under her little activity gym while I washed some dishes and I heard her yelling off and on. When I went back in the living room, she was on her belly! Hooray! She did it again later in the week at her occupational therapy session and then on her own a few more times. She still hasn't mastered it to where she can just roll back to front and front to back whenever she wants but this is progress and it is encouraging! Hooray for movements!

Also, we finally took Little Dorrit on a few outings (well, out of the house and not to a doctor's office)! Saturday, we all went to Trotwood's T-ball game and today we all went to church together for the first time. I can't believe I forgot to take a photo of all of us together today...Oh well. Here's one of Little D. in her cute, smocked dress after the fact. 
And, can I just say, watching five year olds play T-ball is just...the most entertainment I have had in awhile. During his game, Trotwood kept trying to tag kids out on the other team but he didn't have the ball in his glove. He seemed to think it was just a game of tag (and so did about half of his team) so there would be this gaggle of little boys all running in a pack toward a little five year old on the other team who was scared out of his wits because this massive pack of boys was running at him. It was impossible not to smile while watching all of this play out. 

Thursday, April 2, 2015

Freedom!

Little Dorrit is doing great and we were told today that we can actually be discharged from the hospital tomorrow (if all continues to go well and all the discharge details can get worked out)! Hooray! (Don't tell Trotwood if you happen to see him because we want to surprise him.) Little Dorrit still has to remain on antibiotics until April 11th but apparently, it was determined that this medicine is something we can give to her at home through her broviac. This week, we learned that Little Dorrit is growing two different kinds of bacteria in her blood: stentotrophomonas and Klebsiella oxytoca. Honestly, I don't know a lot about these bacteria except that her doctors seem to have found the right antibiotics to combat it. Her blood cultures have been negative since Sunday and she has been fever free all week.

Our stay at Arkansas Children's Hospital has been great and all the hospital staff on the hematology/oncology floor have been absolutely amazing! Little Dorrit has absolutely loved getting so much attention from nurses, doctors, and techs and she has been full of smiles and excitement whenever they walk into the room. Despite our great stay, we have missed being at home all week and I cannot wait to try to get back into a routine again with everything just in time for Easter and conference weekend. I miss my boys. Thank you to everyone who's called or stopped by for a visit or brought me a meal or sent Little Dorrit a gift! We could definitely feel the love and it was so nice to be able to catch up with friends (and my mom) when they could spare a minute. Also, it kept me from going crazy from being stuck in a hospital room all day for the last six days. I'm not sure I would have lasted 14 days. Although, I will say, I have enjoyed all of her smiles and cuteness and all the snuggle time we've shared. She really is a sweet baby.


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.