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

Wednesday, September 24, 2014

Chimes and Chirping

Today began roughly.  After weaving in and out of sleep all night due to several nightly alarms from our neighbor's room (which sounded like chimes mixed with birds chirping), to remind him to take his heart medication, we were jolted awake by a frightening call from the NICU.  At 5:30am we received word that Little Dorrit had been bleeding from her nose, developed new bruises between her eyes and on top of her head, and her platelet count had dropped significantly.  Desptie our best attempts to remain upbeat and hopeful throughout the past week this news brought us crashing down to slosh around helplessly in the dregs of despair.  Sleep was fitful over the next tortuous couple hours until we went to the hospital.

Upon our arrive, Little Dorrit's doctors were making their rounds, they rehashed the night's activities and introduced us to the hematologists who were assisting in solving the modern medical mystery that is our daughter.  The hematologists explained to us that they were beginning to develop theories regarding aspects of Little Dorrit's condition but needed to run more tests on her and her parents.  We had some blood drawn and are anxiously awaiting the results.....

On a more positive note, they did another echocardiogram and an ultrasound.  Her heart looks good and there is no bleeding in her head.

-EA

Tuesday, September 23, 2014

A quick update

This is just going to be a really quick update. Little Dorrit's three toes on her left foot looked slightly better today! Better equals less dark purple with a slight pink tinge. Hooray! Mr. Rochester and I hope that her little toes continue to get better. As far as we know, her platelets are still okay since her last transfusion which was yesterday. Her breathing is steady on the oscillator still. Today we finally got to talk with a few of the doctors that are working with her - we usually just see the nurses and nurse practitioners. Overall, I feel like the doctors are positive about her case although they are still very puzzled as to her platelet and circulation issues. Hearing them be positive helps me feel more positive. We keep hoping and praying her little toes will get better and that she won't have any more platelet issues. After several ultrasounds of her head and body, doctors have found no bleeds or blood clots. Of course, this is a great thing but there is still no explanation why her toes have turned colors (if she'd had a blood clot, that could possibly have explained the toe issue).

Sometimes, I think of the NICU as such as a sad place but I have to keep reminding myself that it is a place where miracles can happen. It's a place where babies get the treatment they need to become as well as they can be and even recover fully. We met a new mom a few days ago and she delivered her baby around 28 weeks. Even at 28 weeks, parents can have hope that their baby might still grow and recover in the NICU. I am amazed at how much modern medicine can help little babies recover and I hope the doctors we are working with will have a "light bulb" moment to help our little one recover from whatever it is that is causing her these issues.

Monday, September 22, 2014

More mysteries

Today, Little Dorrit's breathing has again remained stable on the oscillator. This morning we had a call from the NICU telling us that her platelet levels had dropped again so they gave her blood and platelet transfusions which brought her platelet levels back up. And somehow, she has three toes on her left foot that have turned very dark purple and then she has started getting purple spots on her right foot. The doctors and nurses are mystified as to why this is happening along with why her platelet levels keep dropping. Little Dorrit had another ultrasound done of her head and body and we were told the preliminary findings were that everything seemed normal - no clots and no abnormal bleeding. That's great but it still doesn't explain why her poor little feet are turning purple and I'm really worried about her feet. They look really bad.

Yesterday, we were discharged from Barnes Jewish Hospital. After several days in the hospital, it was time to leave, yet it also made things a little harder because Barnes Jewish is connected by a bridge to the St. Louis Children's Hospital and it was very easy to go visit our daughter in the NICU every day with Mr. Rochester pushing me in a wheelchair.

After being discharged from the hospital, thankfully, we were able to get a room at the Ronald McDonald House which is still very close to the children's hospital. If I could walk far, it would even be an easy distance to walk.  I have never been inside a Ronald McDonald house before so this is a new experience for me. Here are a few of the pros and cons I've noticed about staying here:

Pros

  • The building is beautiful. It's an old renovated building with very nice and clean facilities.
  • Proximity to the children's hospital - it is super close. 
  • They serve dinner every night at 6 pm for patrons.
  • It is only $15 a night. 
  • It is relatively quiet. 
  • Every room is designated a locked cabinet with a mini fridge in it where you can refrigerate items and keep food.
  • The bed is comfortable. 
Cons
  • Sharing bathrooms. None of the rooms have their own bathrooms. This wouldn't really be such a big deal for me except being just barely post C-section, it is harder to walk down the hall to a bathroom than to just have one in the room. It is also more difficult to wash out the breast pump accessories in the middle of the night as we have to go down the hall to the bathroom to wash them out and then downstairs to put the milk in the mini fridge. 
  • The rooms are very small. Our room really just fits a bed in it - which would normally be okay but again, it is a bit difficult to maneuver being barely post C-section and also trying to use a breast pump in a tiny room. 
  • The walls are thin. You can hear everything. 
Overall, we are so grateful we were able to get in a room at the Ronald McDonald House. The meals we've had at night have been delicious and are brought in by volunteers. The affordability and the nearness to the children's hospital are just a huge blessing for us right now. 

Mr. Rochester and I are doing our best to stay positive about everything. Today, I was more emotional about things with the new challenges Little Dorrit is facing. Leaving the hospital yesterday was also hard for me. I tried to put it out of my mind and think of happier things, but for a few moments, all I could focus on was how this was the third time I've left the hospital after having a baby without the baby. Although this time our situation is not final and we can hope and pray for the best still, I just need to keep telling myself that miracles can happen. And, we hope in time, that they will happen for us. 

Sunday, September 21, 2014

Whispers of Fairy Tales

Before Little Dorrit was born, I truly had high hopes that she would be born healthy and we'd be able to leave the hospital with her within a few days after she was born. I'd heard stories where babies were born at 36 or 37 weeks and had very few issues, if any at all, and were able to go home soon. Or if they had an issue it was just that they needed a "little" help breathing and then were able to go home. Our baby needs a lot of help breathing. In fact, if there were no ventilators, oscillators, surfactant, nitrous oxide or any of the other various medicines and machines assisting our baby, she would not be alive right now.

Little Dorrit has her own room in the NICU and having been in other NICUs before, Mr. Rochester and I were very surprised and impressed at this. Besides just having a child in the NICU, something that has been very hard for me is that we haven't been able to hold her yet and we aren't really even supposed to touch her. On the door to her room, there is a sign that says "Minimal Stimulation Please." Because she has been poked and prodded so many times, her oxygen saturation levels go down and her heart and blood pressure rates quickly rise if she is overstimulated and it takes a long time for them to return to normal. She is actually sedated most of the time to help her keep her oxygen at a good level. The lights are dark in her room and all the nurses speak in whispers. It is so hard because I just want to hold, hug, and touch her and I haven't even seen her with her eyes open yet.

The hospital where she was born actually has a Barnes & Noble in it and two days ago, Mr. Rochester came back to the room with this book of fairy tales.

Despite the low stimulation rule in Little Dorrit's room, yesterday, Mr. Rochester and I began reading to her from the book in whispered voices. I don't know if she can hear us over all of the machines or if it even makes a difference, but reading to her and just being present in her room when I can helps me feel like I am doing what I can to show her how much I love her.

Little Dorrit continues to be in a stable condition. The nurses were unable to get the arterial line in yesterday and have other plans to take care of her and monitor her blood gases without the arterial line. If her oxygen saturation levels  stay high, the nurses will eventually try to move her back down to a normal ventilator but I think it will be awhile before they start to do that. She still needs to keep up her levels steadily.

Saturday, September 20, 2014

Stability

Little Dorrit has remained stable on her oscillator today. Yesterday, we had another small victory when an arterial line was put in her umbilical area but today they had to take it out again. For some reason, the arterial line affects circulation in her feet and they start turning purple. When this happens, her poor toes almost look like a victim of frostbite. This also happened the day she was born when she had a line put in there, which is one of the reasons she was moved to the NICU. So now the arterial line is out but they need to put in another one to get lab work from her every 6 hours. I feel so bad for her because without the line, she will continue to get stuck with needles even more to get the needed labs. Please say a little prayer that she will be able to successfully keep an arterial line in without it affecting her circulation or causing other issues.

Tomorrow, I will be discharged from the hospital. Mr. Rochester and I have been lucky enough to get a room at the Ronald McDonald house about 5 blocks away. The last several days we've had dear friends who we really consider family staying in St. Louis with us and it has been wonderful to have them here. They have helped us focus on our blessings and even just helped us laugh (although I try to only chuckle being a few days post c-section). My dear friend Amber even gave me a "Jamicure" (Jamberry manicure - in my case pedicure). See. Don't mind my funky toes.
I have more to post but it's late and I'll do that tomorrow.

Friday, September 19, 2014

Improvements & Names

With the help of many medical professionals, our baby girl has made some improvements! Her blood sugar is back to normal as well as her platelet counts. A brain scan revealed that she does not have a brain bleed. Hooray!! Mr. Rochester and I were so relieved to find that out. We are trying to celebrate these small victories even though she is still a very sick baby. Our team of doctors is still working to figure out what caused all of this.

She is still completely reliant on a machine to help her breathe. Yesterday, she was on a ventilator but needed more help with her oxygen saturation so now she is on a high frequency ventilator called an oscillator. We are so thankful for all of the medical technology and talented specialists that are helping our baby keep fighting.

Good news on the name front! Our baby does finally have a name and her pseudonym on this blog will be Little Dorrit as in Charles Dickens' Amy Dorrit.  I will post her real name on Facebook and if you're not on Facebook and would like to know, just text or email me.

We continue to hope and pray that our baby will soon recover and be able to breathe on her own. From the way the doctors are talking, I have a feeling we will be in St. Louis for awhile.

Thursday, September 18, 2014

A bit too soon...

So, yesterday, I wanted to update everyone with our great news and the few issues our little girl was having. Well, yesterday, she did make some great improvements but then took a turn for the worse last night. Last night she was transferred from the special care nursery at the hospital where I delivered to the NICU at the children's hospital which is connected to this hospital. The baby is still having trouble breathing so she has now been intubated. She also began having some circulation and blood clotting issues. We were also informed that mysteriously her platelet count is low but it was normal when she was born. The circulation issue seems to be resolved. We are waiting to hear about the blood clotting and platelets. Her blood sugars seem to be normal now so that is good! In my opinion, a few of these blood related issues seem similar to issues our other girls had...there are lots of great doctors and nurses watching over our baby and even comparing this baby's case with our other girls' cases. Thank you for your continued love, support, and prayers. We're trying to stay positive!

Wednesday, September 17, 2014

We had a baby.

Today, we had a baby. Here's what we know so far:

We had a baby girl.
YAY!

She cried when she was born. A lot.
Double YAY!

She weighed 8 lbs 7 oz and was 20 in long (at 36 weeks and 5 days),
Holy cow, fat baby.

She is in a special care nursery because she has experienced some respiratory distress and has low blood sugar.
Boo.

The doctors all seem very optimistic that all of her issues are "fixable."
HOORAY!

She still does not have a name.
Shame on her parents.

We are hopeful that the respiratory and blood sugar issues will be resolved quickly. The doctors and nurses we are working with have all been amazing. We are so grateful for all of the fasting and prayers that have been offered in our behalf.