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.