Wednesday, October 22, 2014

The Flow is a Go

Yesterday we had our big meeting with the doctors. It was Aria and I and 12 others representing neonatology, hematology, genetics, neurology, pediatric advance care team (pact), nurses, and one social worker. (We talked with ophthalmology earlier in the day because Little Dorrit's attending physician thought there might be too many people at the meeting). The meeting was a bit overwhelming at first.

Neurology went first and gave us the results of the MRI.  Little Dorrit has blood flow in her superior sagittal sinus! We are so happy about that! There are not clots in her brain. She does have some small bleeds but they are on the outside of her brain and neurology is not terribly concerned about those for now. Unfortunately, she does have some damaged white matter throughout her brain. White matter is the nerve cells that connect grey matter which work together to carry nerve impulses between neurons. The neurologists are unsure what the impact of this finding will have on Little Dorrit.  She is young and her brain is still forming so with early and consistent therapy, they believe it is possible to mitigate a degree of the trauma her white matter has suffered.

Hematology is still trying to find the right levels and intervals of medication for her situation.  The pact team is trying to manage her pain. Genetics had Aria and I provide more blood for further genetic testing. Often, people with Little Dorrit's condition only have one gene error but she has two and they are trying to find out why. The results of all three of our tests should be known by the beginning of December.

The doctors have now tapped and drained her pleural effusion twice. The fluid returned yet again overnight so today they installed a permanent line to drain the fluid out. Since doing so, they have already collected 210 milliliters! Tomorrow, Little Dorrit will undergo a lymphangiogram which is a special x-ray of the lymph nodes and the lymph vessels. Hopefully, this will tell us exactly where and why her lymphatic system is leaking and filling up her pleural space. Tomorrow, they will also take out the SICC line in her groin and give her a PICC line in her arm.

Ophthalmology is concerned about the hemorrhage in Little Dorrit's right eye. The fellow we spoke with said that when he examined her eye he could not see the back of it because of all the blood which means that she can not see out of it. They want to perform a vitrectomy as soon as she is stable enough. The vitrectomy will remove the vitreous gel from the middle of the eye thus allowing her, hopefully, to see out of that eye.

There is some progress and hope but Little Dorrit is still very sick and new conditions continue to arise thus stalling or retarding her progress. She continues to be a mystery to her doctors but we continue to hope, to varying degrees, that things will generally trend upward. In this seemingly never ending cycle of hoping, worrying, traveling, meeting with doctor after doctor after doctor (then studying our notes from our discussions with them so we kind of know what they are talking about) we continue to feel your love and support and are grateful for it all. Thank you. -EA

Tuesday, October 21, 2014

Stay tuned

This morning we had our big meeting with a bunch of different doctors and we got the MRI results.  The meeting wasn't terrible. Mr. Rochester will write up a blog post about everything tomorrow so stay tubed.

Monday, October 20, 2014

Finally...

Little Dorrit finally had her MRI today. Tomorrow we have a big meeting with doctors from neurology, hematology, neonatology, and a few other disciplines to discuss Little Dorrit's health and the MRI results. We'll write a more detailed blog post about the results once we have them. As far as we know, Little Dorrit is doing ok on her ventilator for now and the fluid accumulation in her lungs is minimal.

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 right atrium 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!