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.