Saturday, October 18, 2014

A feeling of normalcy

For a few hours today, our life almost felt normal despite spending the majority of our day with our sick baby in the NICU. I got told hold Little Dorrit for about two hours while sitting in a recliner in her room. She slept in my arms. I put my feet up and dozed with her. Then, she and Mr. Rochester also did the same thing for about an hour. During this whole time, I don't recall a single alarm going off in her room. It just felt...normal. And it was nice.

Around noon today, Litte Dorrit had the procedure to drain the fluid in the space around her lungs. She did fine and they removed 140 ml which is a lot of fluid, especially considering that 120 ml was removed just two days ago, and she's a baby. In the morning, she will get another chest x-ray to see if any more fluid has reaccumulated. If all goes well, she should be getting an MRI on Monday or Tuesday.

Friday, October 17, 2014

Happy One Month!

Today is Little Dorrit's one month birthday! Although since her birth, we have not experienced with her the traditional first month of a baby's life including late nights at home and daily interactions, we have still tried to get to know her and learn who she is to the extent that we can. In the spirit of celebrating her one month of life, I'm going to share a few things we have learned about her so far.
  • She does not like having her diaper changed.
  • Her left hand is her "grabby" hand as termed by her nurses. Little Dorrit has tried to yank out various tubes with this hand on many occasions.
  • She likes to kick her little legs.
  • She looks good in peach.
  • We think she will probably have brown eyes.
  • She has her mother's toes (well, seven of them).
  • She likes music.  
  • She has quite a temper (which she did not inherit from her mother).
Little Dorrit was scheduled to have an MRI today but that was delayed because more fluid has accumulated in the space around her lungs. The plan is to drain that fluid again tomorrow morning. They were going to do it tonight but her INR (blood levels) are not where they should be yet to do this sort of procedure. Once again, her poor little body is super swollen, especially her head and she looks like a little marshmallow baby. 

Thursday, October 16, 2014

Under Pressure

Yesterday was challenging. We received a call in the morning that Little Dorrit's lungs were full of liquid and that the resulting pressure was preventing her aorta from working. Despite this, her heart was still able to circulate her blood but it just had to work overtime to accomplish its task.
They told us the procedure to drain her lungs would not happen until 9 p.m. that night and that afterwards someone would give us an account of the procedure. After a nerve-racking day with our stomach in knots, we received a call somewhere between 11:30 p.m. and midnight explaining that the procedure was a success and that they removed 4 ounces of fluid from her lungs.

Little Dorrit suffered from, yet again a rare condition, called chylothorax which is a type of pleural effusion (excess fluid that accumulates in the pleural cavity or the fluid-filled spaces that surrounds the lungs). It is most commonly a complication of thoracic or cardiac surgery. As for why this is happening in Little Dorrit, the doctors are stumped. Chylothorax usually results from a leak in the thoracic duct or one of the main lymphatic vessels that drain to it. The doctors have taken Little Dorrit off all breast milk and formula and have placed her on a special diet fed to her intravenously and later will be moved to a special formula until the doctors determine she can have breast milk again.

In a bit of good news, Little Dorrit has almost returned to all her pre-proceedure levels regarding respiration.  The doctors could not get out all the fluid of the pleural effusion but feel she should not have any serious setbacks as a result of yesterday's issues. Her cardio echogram and X-rays do not show any blood clots or issues.  

Little Dorrit has an MRI scheduled for tomorrow at 2 p.m. if everything goes well. We have been waiting a long time for this imaging to take place as it will give us a clearer understanding of what exactly is going on in her brain. The blood clot in her superior sagittal sinus is still there in addition to spots that may be small bleeds. Tomorrow's exam will help us better understand the extent of the bleeding or clotting that has been happening in Little Dorrit's head. I am a little nervous to find out the results of the MRI and can only hope that the treatments they have been administering are having a positive effect even though they do not know exactly what is going on in her head. 

As always, thanks to everyone for their prayers and well-wishes and please keep Little Dorrit in your thoughts tomorrow. -EA

Tuesday, October 14, 2014

SLCH Cribs

In my last post, I mentioned that Little Dorrit was moved into a crib this past weekend. She went from this setup:
(can you find the baby in the photo above?)
to this
We also did some minor attempts at decorating the room for by putting up some of her outfits and colorful blankets throughout the room. Trotwood's contribution includes Superman and Wonder Woman "guys" and a few Scooby Doo coloring pages taped to the windows. We added a few little lovies to Little Dorrit's crib and the NICU found a nice little mobile to hang that also plays music (which she seems to really like). Most of what we have for Little Dorrit are things that were given to us for her older sisters and we have just kept it all throughout the years hoping we'd be able to use them at some point. And we are keeping that hope alive!

Monday, October 13, 2014

No more nitric

Just a quick update. Little Dorrit came off of the nitric oxide yesterday and seemed to do fine. They are working on weaning her down on her pain medications but they also want to make sure she is still comfortable. This seems like a slightly tricky process but I am sure it will get worked out. Little Dorrit graduated to a crib in the NICU which is something patients are moved to when they are more stable. Yay! And she can wear little nighties and hats and the nurses will swaddle her with our own blankets. Each weekend we slowly try to add more color and decoration to her room to make it more her own. I'll try to post some photos tomorrow of her new bed and her room. It's been so wonderful to finally be able to hold her these past few days. Although she is still very sick and has many challenges ahead of her, we still  continue to hope for more good news as more tests and imaging will probably be done over this next week. 

Saturday, October 11, 2014

Thank you

I just wanted to say thank you to everyone for all of the love and support we have been receiving lately. So many people have provided service or donated to the gofundme page our friend Amber set up for us. At some point I would like to individually thank everyone who donated - for those who remain anonymous and those who didn't, please know how grateful we are for your generosity. Your generosiIty will help us immensely as the medical bills continue to come in and as we continue to make trips back and forth to St. Louis for Little Dorrit's care. We are so thankful for the continued prayers on behalf of our family and I know we draw strength from them.

Little Dorrit continues to do well on her ventilator and I have high hopes she will be weaned completely off the nitric oxide this weekend. I'm so glad we're getting to spend some time with her this weekend.

Friday, October 10, 2014

Due date

Today was Little Dorrit's original due date and we got to hold her for the first time tonight! It was wonderful...I cried a little. When I mentioned to the nurse that today was Little Dorrit's original due date, she said something like "Today would have been the day you would have held her for the first time!" It's neat it worked out like that.

We are so glad she is doing so much better and keep hoping she continues to recover quickly.