Friday, January 23, 2015

Appointment marathon

This week has flown by and I.am.tired. On Wednesday, I left Fayetteville around 7:20 am with Little Dorrit and went to Little Rock for what seemed like a marathon of doctor appointments. We were there all day and didn't get back home until 10 pm that night. Because I knew it would end up being such a long day, I didn't want to ask anyone from Fayetteville to go to LR with me. Mr. Rochester had to work and my mom had planned on meeting me that day but she got sick. Although I did feel a little nervous about going alone, I thought I could do it and that it wouldn't be a problem. I mentioned this to one of my best friends who lives near Little Rock and she volunteered to accompany me. I am so glad she did because there was no way I could have made it through that day alone and with my sanity. We were so busy that day we didn't even have time to eat anything! Having my amazing friend there proved invaluable because, among other things, she thought of bringing snacks because she thought we might not have time to eat in between appointments, she helped me refocus when I freaked out because I'd forgotten an attachment to Little Dorrit's G-button which she absolutely needed to be able to eat (of course, we were at a children's hospital and the nurses found what I needed but I did experience a few moments of panic), and she calmed an upset Little Dorrit when doctors and nurses were asking me questions. From this experience, I learned I need more help than I think I do. Also, how did I forget to take a photo with her to commemorate our exhausting day!?

That day we visited with plastics, ophthalmology, and the medical home team which included a pediatrician, speech therapist, and social worker. When we arrived at the eye clinic, I heard someone call out my name only to see a dear friend I hadn't seen in years! She and her husband had recently adopted a baby who was also being seen in the eye clinic that day. What a fun and joyful, brief respite during such a busy day!
{Isn't Little Dorrit getting big? She's 13 pounds now!}
Our appointments went well for the most part and we didn't really find out any new information. Plastics said to just continue to let her toes self amputate and that it could take several more months. Ophthalmology was a bit disappointing...I'm not sure what I expect but I feel like every time I talk to a new ophthalmologist they can't tell me anything until they do an exam under general anesthesia. It is frustrating and makes me wonder if something had been done earlier on, if vision in her right eye may have been saved. And this guy was...not my favorite. So, we now have yet another eye exam scheduled to be done under general anesthesia in February. The more I think about it, the more I want to switch ophthalmologists too. Also, I am certain St. Louis Children's sent down everything about our daughter and I didn't feel like plastics or ophthalmology had looked over any of the information that had been sent. 

Although we visited with very capable doctors in plastics and the eye clinic, the Medical Home folks outshined them all. They were up-to-date on Little Dorrit's situation and actively trying to help us. The nurse who is our case manager is top of the line. Aside from being a genuinely nice and cheery person, she really is the type of person who goes above and beyond what her regular job description. And, I love it. She called me several times before we came to Little Rock to make sure they had everything they needed and to help coordinate all our appointments. She came and got us at the eye clinic and walked us over to the Medical Home clinic and also escorted us out of the building afterward. She brought us snacks because by the end of the day when we met with them, I am sure we looked a bit starved and depleted. The morning after our appointments, she even called me to make sure I'd gotten home safely because! Seriously. What amazing care management! 

Saturday, January 17, 2015

Four months

Happy four months today to our sweet Little Dorrit! We've been home with her for almost two weeks now and we're getting to know her more every day. Sometimes, I still can't believe we finally have two kids living at home with us. So far, here are a few things we know about her:
  • She's pretty sassy even at four months.
  • When she gets mad, she won't open her eyes at all until she calms down but once she does finally open them, she stops crying.
  • She isn't stingy with her smiles...when she feels like smiling. Sometimes, she will just start smiling when she is on the changing table and we aren't sure what she is looking at that is making her smile. 
  • She actually sleeps a lot which is a blessing. (But also sometimes, it worries me. Has anyone else who's had a NICU baby experienced this? I mean, it only seems like she is awake for literally 6-8 hours a day. I know all babies are different and I should just stop worrying and see it as a blessing...and she is not a normal baby...and she is on a pain medication that may make her drowsy.)
  • She absolutely loves her little activity gym and will just kick her little legs while has using both hands to grab at things that hang down.
  • She really likes music, especially when Mommy sings to her. It's true! And when Daddy plays the guitar for her.
  • She pretty much hates tummy time, (Seriously, does any baby like this?) but she really needs to do it because even at four months she has very little muscle control in her neck
This past week, we started our slew of doctor appointments in Arkansas and have to travel to Little Rock this coming week and the week after for several appointments. Little Dorrit is currently a little over 12 pounds and around 22 inches long. She is short little thing. Her three toes on her left foot are still hanging on and we have an appointment with a plastic surgeon next week to monitor her toes while they continue the process of self-amputation. Also, I really am not sure what is going on with her right eye or if anything can be done to help it - we are meeting with ophthalmology this week as well. She doesn't always open her right eye and it seems to stay closed more when she is getting sleepy. It also leaks tears throughout the day, her eyelid seems red sometimes and I swear her eye itself is red...but she doesn't cry or anything if you gently touch her eyelid or the area around her eye.

We feel like she is making great strides at home and next week we should also start having physical, occupational and speech therapy appointments in our home. Because of flu season and Little Dorrit being such a tiny thing still (and having just gotten out of the hospital), we have been advised to keep her home as much as possible to minimize her exposure to disease. If Little Dorrit contracts so much as a fever, we have to take her to the ER because it could mean she has an infection in her Broviac and that is a central line to her heart. And, an ER trip may likely send us to the children's hospital in Little Rock three hours away and we'd rather not have to stay at another hospital anytime soon. So, we are just going to play it safe for now.

Thursday, January 15, 2015

The gold


So, this is the gold at our house. Every eight hours, we go through the routine of giving Little Dorrit her Ceprotin and it goes something like this:
  • Remove the Ceprotin from the refrigerator 30 minutes to an hour before using to let it come to room temperature.
  • Prepare your space by cleaning with Clorox wipes and washing your hands. Set out all your materials including: 1 vial of Ceprotin powder, 1 vial of sterile water, 1 empty syringe, 1 red syringe cap, 1 filter needle, 1 transfer needle, 2-3 alcohol preps, 2 prefilled syringes of saline, 1 prefilled syringe of heparin. (Thankfully, everything but the prefilled syringes come in a sort of single use kit already packaged for us).
  • Pop caps off Ceprotin and sterile water vials and scrub tops with alcohol preps for 30 seconds. Let dry for 30 seconds.
  • Uncap the transfer needle (pink) and pierce the cap of the sterile water vial. Pull off other end of transfer needle cap. Invert sterile water vial and pierce the vial containing Ceprotin powder with transfer needle. The water is sucked into the Ceprotin vial.
  • Gently swirl the water with the powder until the powder is dissolved. Because the Ceprotin is a human product, you cannot shake the vial to dissolve the powder or the proteins could be damaged.
  • Twist off cap to filter needle and attach needle base to empty syringe. Pull off the other end of the filter needle revealing the sharp needle.
  • Pull back on the syringe. Pierce the now reconstituted Ceprotin in liquid form and fill the syringe to 4 ml. This can actually be a little tricky because the vials we are working with are little vacuums and will suck in air from the syringe even as you are trying to pull out the liquid. Obviously, we are still amateurs at this and will hopefully figure out our own set of best practices.
  • Remove filter needle and remove bubbles from the now filled syringe. Cap with red syringe cap.
  • Remove bubbles from two saline syringes and one heparin syringe.
So, that is just preparing her medication. After that, we administer it:
  • Scrub the Broviac cap for 30 seconds with alcohol prep. Let dry for 30 seconds.
  • Uncap syringe containing saline and twist onto Broviac. Slowly push in 5 ml.
  • Uncap Ceprotin syringe and twist on. Push in 1 ml per minute over four minutes for a total of 4 ml.
  • Administer 5 ml more of saline and .5 ml of heparin.
And that is what we do every 8 hours. It takes about an hour from start to finish although at least 30 minutes of that time is waiting for the vials to come to room temperature. The rest takes about 20-25 minutes. We've found it is easiest to give Little Dorrit her Ceprotin when she is asleep, if possible. Besides giving her Ceprotin every 8 hours, she also gets a pain medication three times a day in case she is feeling any ghost pains in her three toes that are in the process of self-amputating. And she also gets 1 ml of vitamin D each day. 

In between all of the medication, she gets fed every 3 hours. If she is awake, we try to give her a bottle and she's been doing great taking a bottle although she gets tuckered out after drinking about 1 ounce and she is supposed to have 3 ounces at every feeding. Whatever she doesn't take through a bottle we give her through her G-button. For her feedings, we are using breast milk during the day and at night when she is on a continuous feed, she gets formula. I am still pumping but not sure how much longer I will continue to do that. We are adjusting to Little Dorrit's schedule but at some point I will need to go back to work so we will need to make more adjustments at that time.

I know this was a super long and probably rather boring post since much of it reads like an instruction manual but I just wanted to give everyone a picture of how she is doing and what we are doing every day. Yesterday, we saw her local pediatrician for the first time and her Protein C levels are doing well. So, yay, us! And yay for staying out of the hospital for more than a week!


Sunday, January 11, 2015

Surviving

Since we've been home with Little Dorrit, we've had a busy week but we are surviving! It has been wonderful to all be home together and my anxiety level about everything is slowly decreasing as we learn and adjust to Little Dorrit's sleep, feeding, and medicine schedule. Wonderful church members helped make the transition to coming home with her less stressful for us by bringing in meals every single day this past week! It was such a blessing for us not to have to worry about meal preparation as we were trying to keep up with everything. With this new change in our lives, we are just trying to take everything one day at a time. That seems to make it less overwhelming for me at least. I have lots more to share about our first week but it will have to wait. Little Dorrit is on a rather demanding a schedule and at this point, when we get a break, we usually sleep.

Wednesday, January 7, 2015

Finally...home.

We made it home yesterday! And survived the first night. Little Dorrit looked pretty much like this for the entire car ride home:
We had to wake her up twice to feed her and change her diaper. Although all the stopping did make the trip longer, we did make it home by 2:30 to meet with the home health and medical infusion folks. We spent a few hours with them and then Mr. Rochester picked up Trotwood from where he had stayed the weekend. And then we celebrated Christmas with Little Dorrit and Trotwood got to open all of her presents for her. He was so excited to give her the little plastic monkey he bought for her at school.
And super excited to open the rest of her presents:
Over the next many months, Little Dorrit will be seeing many specialists and therapists. Mr. Rochester and I are trying to figure how to manage everything between medications, G-button, doctor appointments, bills, and normal baby stuff. In the meantime, we are all just trying to get to know each other better, establish a routine, and take things one day at a time.

Thank you for all the love and prayers in our behalf! We still have a challenging road ahead of us but we are so grateful to have our little miracle home with us.

Sunday, January 4, 2015

Big day!

Tomorrow is the big day! We are being discharged from the hospital shortly after Little Dorrit's first dose of Ceprotin and we have to be back in Fayetteville by 2 pm so she can get her second dose then. Home health and medical infusion services will meet us at our place then to dispense her medications and work with us on a few things. Mr. Rochester and I are both experiencing a mix of emotions and despite our nervousness and anxiety, we are excited and grateful we can finally take her home. 

Thursday, January 1, 2015

Four days and counting...

After staying with Little Dorrit in the FP room for two nights, Mr. Rochester and I were pretty exhausted. I feel more prepared now to take her home although I know I still have a lot to learn. This past weekend, we provided all of her care except administration of her Ceprotin (the name of the protein C drug) and the only reason we didn't do that is because the way we do it at home will be different than how it is done at the hospital. Home. That's right. If all goes as planned, we are scheduled to take our sweet baby home from the hospital on Monday, January 5th. I can't believe this is actually happening. I'm excited and nervous and feeling overwhelmed all at the same time. 

The last few days, we have been working with home health and medical infusion services to learn about the equipment and care Little Dorrit will need when she gets home. She has to have her Ceprotin every 8 hours (3 times a day) and we learned the process of how to give it to her. It is a refrigerated powder that we have to combine with sterile water by gently swirling it together (not shaking it) until it is dissolved. Then, we administer it through her Broviac. Before giving it to her, we have to flush her Broviac with saline, then give her the medicine, then flush with saline again, and then flush with heparin. And after the powder is combined with the water at room temperature, it is only good for three hours. Honestly, I felt a little overwhelmed learning all of this, especially realizing we will have to schedule practically every minute of our lives around her medication. Oh, also, we found out how much her Ceprotin costs. Everyone had told us it was outrageously expensive, but I had no idea. For the dose of Ceprotin that she needs, it costs $2500 per day. Per day. I still feel a little sick when I write that. And this is something she will need for the rest of her life...unless she is just put heavily on blood thinners as she gets older...or has a liver transplant but that procedure and the immunosuppressant drugs aren't cheap either and involve other risks.  

Although it's easy to get caught up in thinking about all the medical costs and changes that will have to happen in our lives, I'm not going to focus on that. I. just. can't. If I do, or perhaps I should say, when I have focused on those things, I find myself alone and in a very dark place and that is not where I want to be. I have no idea how we will be able to make this all work or how we will be able to afford her medical expenses year after year, even with insurance, but somehow, we will make it work. I'm not going to let myself sink into the "depths of despair" and focus solely on how difficult our situation may be (although I'm sure I'll have days like that). This year, I want to embrace life with all of its beauty and hardships, come what may and love it. And I'm going to try to remember and focus on that. 

And on that note, Happy New Year! Our new year was pretty uneventful as far as new year's activities go although Mr. Rochester and I did stay up late to ring in the new year which doesn't happen most years. Honestly, I appreciate my sleep. Usually, at the beginning of each year, I try to make SMART goals, but I've come to the realization that having measurable and specific personal goals kind of stresses me out, especially when I don't reach my goals (which happens frequently). So this year, I'm going to make broader goals/ideals focused around general well-being, peace and happiness. Because that's what I need in my life right now. I hope the new year is full of blessings and happiness for all of us.