Tuesday, September 30, 2014

Acts of Service

I'm not sure what to write tonight. We received a call from the hospital earlier this evening giving us an update on Little Dorrit's condition. She is very edamatous because of all the fluid she has been getting and she is back on 100% oxygen. It seems the priority right now is to help her drain the fluid with the use of diuretics. Her head ultrasound was still the same today and she is on her Protein C concentrate and heparin to help thin her blood. Sometimes, when I think about her condition, I do not feel like she is getting any better...other times, I feel much more hopeful that she could make a recovery.  

Since returning home, we've had so many people show their love and support to us through phone calls, texts, and acts of service. While we were gone, some angels mowed our yard and weeded our planter and we've had people bring us meals the last few nights. A dear friend of mine who is an amazing quilter and blogger at Swim, Bike, Quilt sent us this beautiful baby quilt for Little Dorrit. 
Circles Quilt 1024x845 Finished Quilt: 100 Quilts for Kids
I plan on taking it back to St. Louis with us when we go next and using it in Little Dorrit's bed/room where I can. We truly do appreciate all the love and kindness being sent our way.

Monday, September 29, 2014

Leaving

We left St. Louis today. All our doctors and nurses were very supportive of our decision to go home for a few days. I know Little Dorrit is in good hands where she is and that I can call and check on her any hour of the day, but my heart still broke a little when it was time to leave. I've missed Trotwood so much - when we were all reunited this evening, it felt so good to hold him in a tight hug. He was curious about his sister and asked if she was still at the doctor's. We told him yes she was and she would have to be there for a long time.

Our call from the NICU today told us that Little Dorrit's head ultrasound showed improved flow in the area where a clot was thought to be. Unfortunately, some other "dots" showed up on the ultrasound that could be bleeds...the neurologists don't know for sure though because Little Dorrit is too sick to move. And because she is on an oscillator and not a conventional ventilator, she cannot get an MRI or CT scan. Those scans would tell us more about her brain/head condition. Even if we knew for sure that the dots were bleeds, her treatment at this point would still be the same. Please pray that she will be able to get her clotting, bleeding, and breathing under control. 

Sunday, September 28, 2014

Blessings

After Little Dorrit's procedure yesterday, Mr. Rochester and I were worried she would have a bad night or some adverse reaction to the procedure such as bleeding, clotting, or something else we hadn't encountered yet. We went to bed last night and went the entire night without getting a call from the NICU. Relief. This morning, I felt like I should call but I was nervous to call. I guess I thought the NICU would give me bad news even though I knew they would have already called me if something had happened.

Mr. Rochester and I found a local ward building very close to where we are staying and attended sacrament meeting this morning. At one point, Mr. Rochester and I just exchanged looks - the first speaker spoke on Elder Uchtdorf's April 2014 conference talk "Grateful in Any Circumstances" and we noticed that the last hymn was "Count Your Blessings." Both the reference to the talk and the words of the hymn were good advice for us today and I'm sure things we needed to hear. So, here are a few blessings from today I want to count:

  • Little Dorrit is slowly being weaned from her oxygen. This will be a very slow process for her but we are glad she is tolerating the change in her oxygen.
  • The blood thinners and Protein C dosages the doctors are giving Little Dorrit seem to be working so far. 
  • So far, I've helped the nurses change Little Dorrit's diapers three times. Ha! Not sure I'd ever thought changing diapers would be a blessing.
Mr. Rochester will be returning to work this next week and I've decided to come home for a few days. I did not make the decision lightly to leave my daughter in the hospital and have been mulling over this for several days.  I now feel peaceful about my decision to come home for a few days. I miss Trotwood and I know he misses both of us. Throughout this whole experience, I have been very emotional and I feel like I gain strength from being here with Mr. Rochester. I think I would probably be more of an emotional mess than I am if I were to stay by myself. Going home for a few days will allow me to recover more from my surgery and I know I can call and check on Little Dorrit at any time while I am away. So, tomorrow, I'll be returning home for a few days and later this week, we plan on returning to St. Louis on Thursday afternoon if we can work everything out. In the meantime, we will keep hoping and praying for Little Dorrit to make more improvements.

Saturday, September 27, 2014

An unexpected procedure

Little Dorrit had an unexpected procedure done today. Well, it was unexpected for us. The lines in her umbilical area were no longer good to get the labs needed for her care and the doctors thought they found a blood clot in a vein in her head. So, to give Little Dorrit the medications she needs and be able to take labs, the doctors surgically inserted a venous line near the top of one of her thighs in her groin area. As soon as the line was put in, they began administering a blood thinner as well as the protein C supplement she needs. The surgery today was successful but everything right now is still very risky. Because Little Dorrit's condition is so rare, the doctors are unsure of how much of each - protein C and blood thinners - to give her as too much or too little of one or the other could cause bleeding or clotting.

This was another exhausting day for both of us. At one point, we had to go into a consultation room with a neurologist and the neonatologist so they could tell us about the procedure and why it had to be done today. Sitting down with the neurologist is always nerve wracking for me because what good news is a neurologist really going to deliver to me? In the past, we have always gotten bad news from the brain doctors. It is very scary not knowing if Little Dorrit will make it through these medical issues and what side effects may occur because of this treatment and her condition. Mr. Rochester and I are trying to stay positive and have faith and I will admit, at times we are lacking in both. I keep hoping for a miracle and try to take comfort in words spoken by Elder Jeffrey R. Holland in his recent general conference talk "Like a Broken Vessel:" 

"Believe in miracles. I have seen so many of them come when every other indication would say that hope was lost. Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead...Let us remember that through any illness or difficult challenge, there is still much in life to be hopeful about and grateful for. We are infinitely more than our limitations or our afflictions!"

Although we find it difficult at times, we are trying to have hope, believe in miracles, and count our blessings. Please keep Little Dorrit in your prayers tonight that she will sleep well through the night with no complications from her recent surgery. Despite having a diagnosis now, the doctors are still learning how to treat her condition especially the dosage she needs of protein C and anticoagulants. 


These flowers are outside the Ronald McDonald House we are staying in and their bright colors help lift my spirits whenever we walk past them.

Love, prayers, & support

Since the birth of our daughter, we have been surrounded physically and virtually on the web with love and support from family and friends. We appreciate so much all of the texts, emails, and phone calls we have received. One of our dear friends even asked if she could set up a fundraising page for us to help us with medical bills, travel costs, and other expenses. We are so thankful to her for starting this as it is something that we would never have done. She named the page Aid for the Andrus' and since others have asked me about this, I wanted to post the link here: http://www.gofundme.com/ewx97s. Please feel free to share this link however you like. The photo of Little Dorrit on this page is the only photo we have posted of her so far as she is so hooked up to machines and tubes.

Friday, September 26, 2014

A NICU Distraction

After our rough morning on Wednesday and before we found out our protein C test results, we took a break from the NICU and did something that helped me feel somewhat normal again. Laundry. Who knew that doing laundry would actually help me feel relaxed?! Usually, laundry adds to the stress factor in my life. This time, I just think doing laundry gave me something else to think about other than what was happening in the NICU. While our laundry was going, we played two games: Bananagrams and Boss Monster.  Both games were fun to play and that, of course, didn't have anything to do with the fact that I won them both.


Although, I love being able to be close to Little Dorrit and see her, being in the NICU every day for hours is very hard. The doctors have lightened up on her sedation so she is moving around more. Sometimes, her little face scrunches up into a grimace and it looks like she is trying to cry. But, she can't cry because she is intubated. Just seeing her little grimaces makes me wonder how much pain she is feeling and it breaks my heart to not be able to hold and comfort her.

Last night, the nurses started weaning her off some of the oxygen she was on. She went down from 100% to the low 80s now so that's good. Oh, in yesterday's post, Mr. Rochester didn't mention that Little Dorrit also suffers from pulmonary hypertension but this is thought to be unrelated to her Protein C deficiency. The pulmonary hypertension is the reason she cannot currently breathe on her own but we are hoping this will work itself out as she gets bigger and stronger. Little Dorrit had some more scans today and so far, she still does not have any clots. With the Protein C deficiency, there is a chance of blindness and this evening, ophthalmologists looked at her eyes. Her left eye is okay but they noticed some haziness in her right eye and believe there is a slight hemorrhage there which may cause vision/eye muscle problems in the future. Next week, they will check her eyes again. 

Thursday, September 25, 2014

I am more deficient as a parent than I thought

Today was a bit better, though at this time my mind is swimming as Aria and I have spent the evening immersed in hematological journal articles and medical texts. I apologize if this post is not very cogent. We met with the team of doctors and the hematologist had some news for us.  They received the results of yesterday's blood test and discovered that Aria and I are both low in our protein C production (Aria was a 59, I was a 53, and the low end of normal is 60). Protein C aids the blood in cloting. Sadly and statistically uncommon, Aria and I are both recessive for protein C deficiency and it is hereditary, meaning each of our children had a 1 in 4 chance of becoming protein C deficient.  Little Dorrit's test was unable to detect any protein C in her blood.  She has been diagnosed as protein C deficient which increases the risk of developing abnormal blood clots.  In severe cases, such as Little Dorrit's, it is characterized by the formation of blood clots in the small blood vessels throughout the body.  Due to the blood clotting the body uses up all the available blood clotting proteins.

This is an incredibly rare disorder. According to the U.S. National Library of Medicine, severe protein C deficiency affects an estimated 1 in 4 million newborns.  Additionally, due to the blood work done on Little Dorrit and my wife and I, in conjunction with the medical records of our other girls, the hematologists believe our first girl suffered from the same condition.  The second may have also but due to the limited data involving her case they are unable to make that ruling. The numbers are staggering for one child to have this issue, let alone two, maybe three of our four children being protein C deficient. Trotwood will need to be tested at a later date as he may be recessive for it also.

Due to Little Dorrit's deficiency she has also developed Disseminated Intravascular Coagulation (DIC). DIC is a condition in which blood clots form throughout the body's small blood vessels, this clotting uses up platelets and the clotting factors in the blood (hence her need for two platelet transfusions a day). Due to DIC her blood becomes over active and with fewer platelets and clotting factors in the blood, serious bleeding can occur even without the presence of injury, such as in our first daughter.

As you can imagine we are thankful to finally be getting some answers after six years of wondering what has happened with our girls.  Conversely, we are saddened that Little Dorrit has such a serious issue and remains very sick.  Due to the rarity of her issue there is little literature on the subject.  Her doctors have never seen a case of this, thus a prognosis is yet to be made. She continues to need prayers and inspired medical care.  We are thankful for all the prayers, sacrifices, and well wishes of everyone out there and are hopeful that Little Dorrit will be able to participate in our family in mortality.   -EA