Friday, October 31, 2014

Happy Halloween!

I always thought it would be fun to be one of those moms who made all of their kids Halloween costumes. Sadly, my sewing skills are lacking much and I have a bad tendency to start projects and not finish them. For the past few years, Curious George has been a huge part of Trotwood's life and I just love how much this kid loves George. About a year or so ago, we bought Trotwood a stuffed Curious George and he still sleeps with it every night. So, this year for Halloween, we suggested that he be the Man-with-the-Yellow-Hat and he got really excited about it. We actually suggested this before Little Dorrit was born and at the beginning of this week, I was pretty sure his Man-with-the-Yellow-Hat costume was not going to happen mainly because I'd unsuccessfully scoured the internet for a pair of boys yellow pants or white pants that I could dye in his size. Whenever anyone asked Trotwood what he was going to be for Halloween, he proudly told them he was going to be the Man-with-the-Yellow-Hat so I really wanted to make it work. On Monday, I had a moment of revelation and looked on the internet for any children's yellow pants and found some available via Amazon Prime (which is a procrastinator's best friend). Just don't tell Trotwood that we didn't purchase the pants in the boys section. 

The pants arrived about an hour before our ward's Trunk or Treat on Wednesday night. I used yellow dye to dye a white dress shirt that was almost too small for him. The hat took several hours to make and I may have shed a few tears in the process. It hat is made out of a felt hat, floral styrofoam, yellow felt, quilt batting, black ribbon, and lots of hot glue and duct tape. Mr. Rochester saved the day and helped me finish up the hat after I had a minor crisis and he also made the tie out of yellow felt. 
Trotwood loved wearing his Man-with-the-Yellow-Hat costume at the Trunk or Treat and when he heard me criticizing my work on the hat, he told me several times how much he loved the costume and what a good job he thought we did. He can be such a sweet boy. For trick-or-treating tonight, he decided he only wanted to wear his Man-with-the-Yellow-Hat costume for a little while and then he wanted to change into an Iron Man costume that we've had for a few years. I suspect his desire to be Iron Man stemmed from the Trick or Treat bag that his Meme sent in the mail. Trotwood had an eventful night and literally ran from house to house trick-or-treating making his own sound effects and pretending to fly as Iron Man. 
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In an effort to focus on the "happy" part of Halloween, we decided to establish a few new fun traditions. We made this potato soup and ate it in bread bowls while watching part of the movie Hocus Pocus. Then, we went trick-or-treating for a little while and came back so we could pass out candy while listening to spooky Halloween music. I think one of Trotwood's favorite parts about Halloween is passing out candy - every time the doorbell rang, he got so excited and ran to the door saying "Let me! Let me!" In between answering the doorbell, we played a board game together called King of Tokyo and then finished up our Halloween movie. All in all, it was a great evening. Just what we needed today.  

We did get Little Dorrit a Supergirl costume and I'm looking forward to getting photos of her in her costume from the nurses. 

Thursday, October 30, 2014

Mystery...

Today, we found out that results we received yesterday of Little Dorrit's MRI were inaccurate. The initial results proved to be inaccurate as later in the day, the chief of radiology reviewed her MRI study and disagreed with the radiology team that initially reviewed them. He believes, as does our current neonatologist, that Little Dorrit's lymphatic system did not form properly and they have requested permission to send Little Dorrit's records to Boston Children's hospital to consult with a team of Harvard doctors who work primarily with the lymph and vascular systems. We were told there is one experimental drug that can been used  to possibly help her live with this lymph/vascular system issue but there is no surgery or anything else that could fix this issue. There is one drug and it may or may not help her and she may or may not be a candidate for it. The doctors believe this new challenge is unrelated to Little Dorrit's protein C deficiency. We asked the doctor we spoke with today about the worst case scenario and it is bad. I need to stop thinking about the worst case scenario, but my heart truly breaks at the possibility of parting with yet another child.

I don't really have any positive or inspiring words to share tonight. A friend of mine shared this video with me recently and I thought I should share it now as it taught me more about faith. Thank you for your continued love, support, and prayers.

Wednesday, October 29, 2014

Mystery or miracle?

Many of Little Dorrit's caregivers keep referring to her as a mystery. I keep wondering if perhaps we are experiencing small miracles. For the first few weeks of her life, Little Dorrit had ultrasounds of her head every day to try to monitor blood clots and flow in her head. At that time, she was too sick to move to get an MRI and the ultrasound was all they could use to look for clots despite it not being the most accurate technology to use for this. Successive ultrasounds revealed no blood flow in Liitle Dorrit's superior sagittal sinus indicating that she had a clot in her head. We worried about this and what it could mean. When she was finally able to get an MRI of her head, no clot showed up on the study. Mystery or miracle? Or mistake of the ultrasound? 

The last week or so Little Dorrit has had  unexplainable pleural effusions. When she had her lymphangiogram, for some reason, the dye that was injected in her that was supposed to move through her lymphatic system and reveal leaks, etc. never actually made it to her lungs. It seemed to get stuck below her chest area. This indicated a problem or even a malformation of her lymphatic system which is why she had an MRI of her chest and abdomen yesterday. According to a nurse practitioner we spoke with today, the results of yesterday's MRI did not show any abnormalities or clots in Little Dorrit's lymphatic system. Mystery or miracle? 

Little Dorrit is slowly beginning her feeds again of the special Enfaport formula and she is still slowly bring weaned from her tidal volume pressure on her ventilator. Even though I know Little Dorrit is still very sick and that she may continue to encounter even more challenges to her recovery, I'd like to think that small miracles are happening for her and that any mysteries or mistakes will be solved and resolved. 

Monday, October 27, 2014

Awake

We got home from St. Louis last night. Most of the time we were able to visit with Little Dorrit, she was asleep. Today, one of her nurses sent me this photo of her awake with her eyes open. I just love it! The swelling in her face has gone down so much.
Tomorrow Little Dorrit has an MRI scheduled to image her chest and abdomen. Hopefully, this will give us a better idea of what is happening with her lymphatic system. We are hoping and trying to stay positive about this. One of her nurse practitioners told me today that she could no longer see the pleural effusion on Little Dorrit's chest x-ray. That is good news, however, it doesn't mean it is completely gone. We are hoping it diminishes soon and stays gone. As of yesterday, Littke Dorrit is breathing "room air" although she is still on her ventilator for the air pressure (which they are going to slowly wean down). 

Sunday, October 26, 2014

40 Days

Just a quick update. Little Dorrit's swelling has gone down quite a bit which is great! Her face looks so much better! However, she is still leaking fluid into her pleural cavity at about the same rate. All of this fluid is being measured when it drains from the tube in her chest. This condition is still being monitored and Little Dorrit should be getting an MRI of her abdomen in the next few days to help provide answers as to what is happening there. For some reason, I am really worried about this. Poor Little Dorrit has already faced so many challenges in her 40 days of life, I hate that more keeping coming at her. This morning when the doctors were rounding they mentioned she was 40 days old. I can't believe it's been that long - 40 days seems like such a long time and yet it has all just flown by.

Friday, October 24, 2014

Regression

Not the best day. Last night we drove up to St. Louis and this time Trotwood came with us. When we saw Little Dorrit this morning, she had been downgraded from a crib to one of those open tables she was on previously. Bummer. This was mainly because of the chest tube she has now that continues to drain fluid from the cavity around her right lung. Apparently chest tubes and cribs don't mix well. A nurse practitioner also informed us that the area around Little Dorrit's left lung is also filling with fluid. If the fluid fills to where Little Dorrit has difficulty breathing, then they will insert a chest tube on her left side as well. And even just having one chest tube  means we can't hold her. And she could have the tube(s) in for weeks until the fluid stops accumulating. 

They have also stopped her feeds temporarily because she started spitting everything up today. And they don't know why. The lymphangiogram did not tell us anything because for some reason the dye has been very slow to move through Little Dorrit's lymphatic system. And they don't know why her system is so slow. So, we do not know why she is leaking fluid around her lungs. She is also on lots of sedatives and medicines to help her manage her pain and keep her comfortable, including a morphine drip. Why is it discouraging to me that my infant is on a morphine drip? This is all just very frustrating because a week or so ago, it had seemed like Little Dorrit was getting better and now she seems to be regressing and facing new challenges. I hope she can overcome these new challenges and avoid anymore roadblocks to her recovery.


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!

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. 

Thursday, October 9, 2014

Good news!

This morning we received good news from the NICU and one of the nurses texted me this photo of Little Dorrit with her eyes open. I just love that her eyes are open and she is all swaddled up! We've mostly seen her with her eyes closed and just sprawled out in froggy style on her NICU bed with a tons of tubes attached to her. Also, her head still looks swollen but it is a vast improvement from where we left her on Sunday. Her face used to be so swollen, she could barely peek out of her eyes - this is the widest I've seen her eyes open so far. So, more good news is that Little Dorrit continues to do well on her conventional ventilator and she has been weaned down to 5 from 20 on her nitric oxide. Over the next few days, they will slowly try to wean her off of the nitric oxide completely and I know our doctors are working on trying to figure out what her long term care will need to be to deal with her protein C deficiency after she leaves the hospital. I still feel like, even after she is off the ventilator, she will still need to be in the hospital for some time until her toes are as healed as they are going to be and we have a long term care plan for her. But, we are making progress and that is encouraging!!
Mr. Rochester and I are planning on heading back to St. Louis in the morning. I'm really excited because I'm pretty sure we will get to hold our baby girl this weekend, as long as she continues to do well on her conventional ventilator. My sweet co-workers at work put together this huge basket of goodies for us to take with us on our trips back and forth to the hospital. We were so touched by the thoughtful gift and plan on putting it to good use this weekend.
We are still trying to count the tiny victories and keep hoping for larger ones (I'm trying not think negatively about impending MRIs and what that may reveal to us). Trotwood will be staying with some friends from church this weekend and although I feel sad leaving him again, I know we need to spend time with Little Dorrit this weekend and Trotwood would not be content at the hospital at all. All this back and forth is exhausting and I am so grateful for the love and support we have been feeling from friends and family. Thank you for all your thoughtful actions and continued prayers for our family. 

Wednesday, October 8, 2014

Trotwood Time

The last few days since we've been home from St. Louis, we've tried to make an effort to spend some quality time with Trotwood, especially since we decided not to take him with us again this weekend. As of last week, I'm cleared to drive again as long as I stay away from the Percocet, and I don't really feel like I need the pain meds as I haven't been in much pain and feel like I'm healing well. Yesterday, Trotwood and I made a visit to his old preschool where he got to visit with a few of his friends that did not move up to kindergarten this year. Some of the children also asked him questions about what you do in kindergarten. Mostly, Trotwood just nodded or shook his head to answer the questions but it was still funny to see what the other kids asked him. Then, he got to play with some of his friends at a few of the different centers.
Today, Mr. Rochester and I went bowling with Trotwood. Well, Mr. Rochester and Trotwood bowled while I watched. I still don't think I'm supposed to pick up anything heavier than 10 pounds and I didn't want to chance anything with a 6 or 8 pound ball. It was still fun to watch them though.
I'm glad that Trotwood has had this week off of school. It's been nice to spend more time with him since our lives have been so crazy lately. It's so hard to leave him when we go to St. Louis...but then it's also hard to leave Little Dorrit in St. Louis when we come home to Trotwood. Either way, you feel a little torn in two. 

Little Dorrit is still doing well on the conventional ventilator and the medical professionals working with her still continue to try to wean her down on her ventilator and nitric oxide support as she can tolerate it. Her three necrotic toes are being treated with Betadine with the goal to have her body naturally reabsorb what tissue it can while getting rid of the dead tissue. After that happens, a plastics team will come in and clean up her toes however they can. Although I've mostly come to terms that Little Dorrit will lose three of her toes, sometimes, I still feel sad about the impending loss of her tiny digits and how it might affect her throughout the rest of her life. How will it affect her when learning to walk? Will she be able to run or dance? Will she need to wear special shoes? Mr. Rochester continues to remind me that her toes do not define her. And honestly, even writing about this, with all Little Dorrit's other serious issues, it almost sounds trivial to be so concerned about her toes which really will have little bearing on her cognitive development. 

We still have no idea what effect her bleeding and clotting issues have had on her poor brain and I don't think we will know until she is completely off of the nitric oxide - then they should be able to move her enough to take her to do the necessary imaging. Thankfully, we have not had one of those middle-of-the-night NICU calls in awhile and I'm so glad about that. Most of our updates right now involve little changes that are being made to her care. Each time I call the NICU to check on her or receive a call from a 314 area code, I feel a little less nervous about the news I may be receiving. We continue to hope and pray for the best but realize she will need much time to heal and for her doctors to determine what care she will need in the future. 

Monday, October 6, 2014

Sunshine day

Trotwood attends a year round school and does not have school this week. The weather outside is beautiful with just the right amount of sunshine and coolness in the air and Trotwood spent a lot of time outside today. He built fences for his cars and then would wreck them with his scooter. Although I feel anxious to go back to St. Louis and see Little Dorrit, it has been nice to be able to spend the day with Trotwood.



Little Dorrit has done well on the conventional ventilator since yesterday and we just hope that the medical professionals can be successful weaning her off of her oxygen. What usually seems to happen is, they start to wean her down and then she gets really mad and worked up about something, like when they change her diaper, and then they have to go all they way back up to 100% on her oxygen while giving her some extra sedation or pain/anxiety medication to get her to calm back down. So, it's almost like two steps forward, one step back. As far as I know, it seems like they are keeping her blood clotting and bleeding under control but I think we will know more about all of that when Little Dorrit is well enough to have an MRI and other tests.

Sunday, October 5, 2014

A museum and a ventilator

Although I don't think we can bring Trotwood with us every time we go to St. Louis, Trotwood sure seemed to enjoy being with us this weekend. He got to spend some time with our good friends and their kids - they went swimming at their hotel, played games and also visited the St. Louis City Museum on Saturday. On Saturday, after Mr. Rochester and I said our good-byes to Little Dorrit at the hospital, we met up with our friends at the City Museum. That place is amazing! It's an old warehouse that has been turned into a giant indoor playground full of tunnels and slides and all sorts of things to climb on, over, and under. I just mostly sat and watched but when I'm not just two weeks post C-section, I think it would be super fun to go back and climb around with Trotwood there.

I'm also glad we brought Trotwood with us because I got to see random things like this - Trotwood slumped in his seat with his monkey backpack/leash on trying to sleep against the window while clutching a stuffed Spiderman guy. 
Also, he grabbed our phones at different times and took photos in Little Dorrit's room from his perspective. I'll have to post some of those on the blog at some point because they are kind of neat.

We arrived home again tonight and I feel like this time our visit to St. Louis was more encouraging, at least for me. Yesterday, we sat down for probably an hour with a neonatologist who is working with Little Dorrit and although, the doctors don't downplay how sick she is, they also tell us when she is making improvements and at least, today, I'm finding comfort in that. As of 3 pm today, she has been moved from an oscillator to a conventional ventilator and we are hope hope hoping she will be able to tolerate that. So far, so good. Pray that she can tolerate the ventilator as being on this type of breathing apparatus will help her get better, be a bit more mobile, and allow the doctors to do different tests on her that they are unable to do when she is on an oscillator. Also, if she stays on the conventional ventilator, the next time we see her, we can probably hold her! Exciting!

Saturday, October 4, 2014

Back again

We drove back up to St. Louis yesterday. This time we brought Trotwood with us. We were nervous about taking him with us because he is such an active little five year old but I feel like he actually behaved himself very well, especially at the hospital. Some dear friends of ours whom we consider family also came yo St. Louis this weekend with their family. Last night they watched Trotwood for us so Mr. Rochester and I could go to the St. Louis temple. We caught the very last session and I think we were the last patrons to actually leave last night.

Going to the temple helped me feel more at peace. On Thursday, our call from the NICU told us that Little Dorrit will most likely lose her first three toes on her left foot. The toes have been black with only some pink flesh since the day after she was born, likely due to tiny little blood clots that have blocked the circulation to her toes. Now, the toes are necrotic and although the medical professionals we are working with aren't certain she will lose her toes, they think it is very likely to happen. Perhaps, because this is such a physical manifestation of her illness, I just fixated on this and really began mourning the loss of her toes. Who doesn't love little baby toes and feet? Now, along with all her other health issues, if Little Dorrit pulls through, she will have to go through life with "different" feet. In the grand scheme of things, the loss of a few toes isn't too terrible, I guess. Really, we are lucky it isn't a whole arm or leg. 

She is still very sick and we keep looking for and trying to appreciate the small improvements she does make. Like, yesterday, she had her eyes open for a long time while we visited with her. That's the first time I've seen her with her eyes open for more than just a second. And, she's being fed breast milk through a little tube now. Also, good. 

Thursday, October 2, 2014

Today is Thursday

My heart is heavy tonight. I will write more about it at another time - it is just too much for me right now. 
Please pray especially for Little Dorrit's toes as they are not getting any better. 

Wednesday, October 1, 2014

More service

Wow. Tonight all of the youth from church came over to our house to do a service project for their Wednesday night activity. So many people showed up to work in our yard and do some deep cleaning in our house. Many of the young men and women planted flowers and added mulch to our flower bed out front while others cleaned baseboards, dusted inside our house, and did various other cleaning. Another friend from church led an effort to cut down the Bradford pear tree in our front yard we've been wanting to get rid of since we moved into this house four years ago. We are so grateful to everyone who provided yet even more service to us. With being two weeks post C-section and having a baby in the NICU, pretty much the last thing on my mind is what our house looks like on the inside or outside, but having it look and smell clean and feeling like our yard is trimmed and neat really does make a difference. Plus, it was really nice to visit with our friends from church and once again feel their love and support. Here's a group photo (I know I cut some folks out by accident). And, yes, that is my son in the superman shirt on the front row - he was in absolute heaven tonight with all of the youth everywhere at our house!
Our update on Little Dorrit today was that she is in a stable condition and seemed comfortable with the sedation she is currently on. She is very swollen from all of the fluids she has been getting and her lack of mobility because she is always sedated. The focus today was on trying to get some of the fluid out of her by giving her diuretics. The thought was that getting rid of some of the fluid would better enable her to begin being weaned off the oscillator. We keep praying that the protein C concentrate and blood thinners she is getting will help her regulate her clotting and bleeding factors.