Daddy's Little Girl

The last few days: A Synopsis

This is Dan, Alicia's husband. I imagine that I will be updating everyone via this blog for the time being. I know Alicia would do a better job, but you have me so hang in there.

I hope that giving these updates will somewhat satiate the desire I know that many have for information on Alicia's feelings and for her current condition, yet I know that my description will not be enough for the far majority. I therefore beg your patience. If you know Alicia, you know that she would be mortified at the thought of sharing the most important events of her life on the viral world. The loss of Lydia is such an event.

Before I go through the progression of the last few days I will say that there have been many many peaceful moments. There have also been many heart wrenching moments. I will not explore our emotions here except to say that we are grateful and we hurt, we feel much peace and great sorrow. Thank you for your prayers and fasting and hopes on our behalf. They are making the difference.

We knew that the procedure of removing the tumor from baby was a very difficult procedure.On tumors like the one Lydia had (very rare) the survival rate has been 50%. If we did not do something there was no chance of survival. Her chances of survival if she was born at 25 weeks and with the tumor were extremely low. Not only did we choose the statistically best option, we felt immense peace that it was the best direction to go.

Last Thursday the doctors successfully removed as much of the tumor as they could in the very small window of time that they had. They put her back inside of Alicia and then monitored her from outside the Uterus hoping that she would handle the surgery alright. The problem was that Lydia's heart was used to pumping blood for twice her size (the tumor was as big as she was.) Her strong little heart could not withstand the substantial change of and she started to go into heart failure.

I was informed of the problem and later told that they would have to deliver and attempt to resuscitate her. They told me the probability was low and they would likely call me in to hold her in during final moments.

I was brought into the room with Lydia for the last few minute of their work on her and I got hold her hand. I honestly felt like her spirit was already gone even though her heart was still valiantly struggling on. When her heart began further giving out they swaddled her up and let me hold her. It is something I never thought I would have to do, it broke my heart and I'm so grateful I got to do it. It felt like a great privilege. I only wish Alicia could have been there to hold her herself.

I got to carry her to the room where Alicia would recover and I called our parents with the sad news. I was also able to clean her up and dress her in a beautiful white dress the nurses gave me.

Alicia was wheeled in after about an hour and though she was heavily drugged she was coherent and understood the hard news I gave her. All she could do was shake since her physical pain and the drugs would not allow more. I held Lydia up so Alicia could see her for about an hour until Alicia could move her arms enough to hold her herself.

Even in her weakened condition Alicia held her like only a mother could. She is a very sweet mom.

The nursing staff was so nice and watched out for us and took pictures for us, so that we would have something to remember her by. We know that it was not an easy job for the doctors and nurses but it is one that will be appreciated for the rest of our lives.

After a few hours and when Alicia was too tired to remain awake any longer we said our goodbyes to our dear daughter, even though we never wanted to let go. I was able to wheel her away to the room they placed her in until she could be taken to the morgue. It was the last thing I could do for her.

We sure love our little girl and can't wait to be with Lydia more someday. God must love her a lot too.
________________________________________________________________________________

Here is some on Alicia's recovery.

It took a couple of days for the anesthesia to fully wear off. This mean't that she has been sleeping a ton and in pain or getting meds the other part. Since she didn't have a normal C-section (it was more like a double C-section) the doctors and nurses were not exactly sure how to treat her.

The real problem with this is that they could not manage her pain like we were hoping. Often times she would spend an hour in excruciating pain before she had the right dose of medication she needed. The medical staff was trying to get her digestive system working and the drugs they were giving for pain would put that system back to sleep. Ultimately, this mean't they would try to have fewer pain meds for longer time and that left her in agony.

After several attempts to sort this out with the nurses I finally had a half-hour pow-wow with our nursing staff  (that isn't to say they have not done a great job, because they have) about how her pain was top priority and we needed better care and communication on the subject. Things have since been much better.

Because her digestive track was not working that means a build up of gases in Alicia's abdomen so that she still has pressure and a belly and that causes her more pain. After days of hoping that she would be able to pass gas (yep we know that is a strange thing to hope for) she stayed up all night last night and her digestive track finally started working.

Hurrah!!!

Alicia went almost 5 days without food. That blows my mind, but then I love my food. We got her walking around and eating broth and jello so we will hopefully be out of the hospital by tomorrow or the next day. She is the ultimate trooper.

Her physical health has improved her emotional one though she still can't cry like I know she needs to. We have had some good 'us' moments and we know there will be more. Many of our tears are also tears of thankfulness to those who have done so much.

Our room is full of flowers. Thank you to everyone who did that for my wife. You are the salt of the earth to us. Those kind acts do make a  difference. Thank you for all the emails and phone calls and texts. We have answered almost none of them, but Alicia asked me to read them to her the other night and they were a wonderful comforter and sign that God often acts through others. Thank you for being his hands.

We love you all and are again most grateful for your prayers.

Families are Forever

Lydia Ditto

Born July 19

We will love you forever and look forward to seeing you again.

Mom and Dad

D-day

The decision has been made and we feel SO good about it. Open fetal surgery occurs tomorrow! Essentially they will remove as much of the tumor as possible without delivering the baby (we have GOT to give her a name. . . we're working on it . . . I've discovered I'm very non-committal when it comes to naming my children). They'll put her back inside the uterus, stitch us up, and she'll hopefully "cook" for at least a few more weeks. (Thank goodness for pain medications. Amen.)

While there are a lot of risks, we feel this is our best option and we're glad that we finally get to DO something. (While sitting in the house, taking 2 naps a day, and eating a lot of ice cream has been fun, I'm ready for something to happen!) Thank you all for your prayers!!! We'll try to keep the blog as updated as possible, but do not fret if you don't see anything for a couple of days.

And for your viewing pleasure - this is what my swollen feet look like (this picture doesn't do it justice).

"What Happens to One, Happens to All"

For whatever reason I have never wanted to turn my non-private blog into anything similar to my private journal, but as circumstances in our little family's life are progressing, I have felt stronger and stronger there are things that need to be shared with those who are so concerned for us.

7 weeks ago, Dan and I went to the doctor for our monthly check-up, greatly anticipating finding out the gender of the little baby we affectionately called "Lou" (we do live in St. Louis after all). We were both shocked (but super excited) to find our hunches were incorrect and we were having a girl!! (New fetus name: Loula.) But something just didn't seem right. While we waited to see the doctor, we just assumed that whatever was wrong had something to do with the placenta previa I had been diagnosed with one month earlier. A couple of doctors returned, and after another 20 minutes of ultrasounding (totally just made up that word), we were told our baby had a tumor.

They didn't have many specific details for us - just a lot of generalities. We were referred to a specialist and had to wait 3 weeks before the baby was big enough to do any further testing. Dan left for his internship in Utah just days after we heard the news - so for over a month we kept in touch via skype, while amazing friends from the ward rallied around me in St. Louis.

Of course the prayers and messages of concern began pouring in from the beginning. We didn't shout it out the world, as we didn't know much about our specific situation, but somehow people began finding out, and we were lifted by the prayers and fasting of so many family and friends.

After extensive testing, we have learned more. This tumor is rare (about 1 in 40,000) but our specific case hits the extremely rare button with the way this tumor is developing and growing. It is based off her tailbone and is growing (mostly externally) at an alarming rate, due to the 2 arteries that are feeding it blood. We affectionately call it her "ghetto bootie" as the mass is now slightly larger than the size of her head.

These tumors have a mind of their own and no doctor can predict how one will behave differently from another. The biggest cause for concern in our case lies in the fact that her little heart has to work over-time to supply blood to her body and this tumor, and without intervention she will eventually go into cardiac arrest. This process has been a watching and waiting game as we watch for signs that lead to heart failure.

Last week, Dan and I felt strongly that it was time for him to return to St. Louis. Through a miraculous chain of events, he made it in at midnight the night before our appointment last week. At this appointment they saw signs of anemia in the baby (not enough blood for both baby & tumor), so we underwent an operation where the doctors gave her a blood transfusion through her umbilical cord. At the same time they reduced the crazy amount of amniotic fluid I had been carrying (another result of the tumor - they took out more than half a gallon!). Teams of doctors were on stand-by during the procedure in case anything went wrong, so they would be ready to deliver our baby at a moments notice. Answers to prayers came in a big way that day - everything went as smooth as it possibly could have. Both mom and baby tolerated everything well, and the doctors were extremely pleased with the results and the fact that it bought is at least a few more days.

Dr. Ditto! Possible career change in the future? :)

 I cannot describe to you the tender mercies of how blessed we are to be in St. Louis with a team of doctors who can actually handle us. While we are far from family, we are close to excellent care, and are extremely grateful for that huge blessing from the Lord. They are incredible and have been conversing with doctors throughout the country on the best course of action (I often wonder if our head doctor ever sees his family with how much time he puts into us - and we're only one patient!)

Despite the positive outcome of last week's procedures, things are developing in a way that heart failure will occur if we don't intervene soon. Decision time has come. We could deliver early and remove the tumor once she is stable (usually within days), or the doctors perform fetal surgery by removing as much of the tumor as possible without actually giving birth, which would give her more time to grow and develop inside the womb and a more invasive surgery would occur after birth.  All options are risky for many different reasons, but it's looking like something will happen either by the end of this week or beginning of next. Continued prayers are that the doctors will be guided to the best course of action for our family.

If anyone is actually still reading this eternally long post, this is for you:
I was reminded this morning of a talk given at General Conference a few years ago by Bishop Richard C. Edgley - titled "What Happens to One, Happens to All." He described several instances when wards and neighbors rallied around those who were facing difficult trials - ward members helped and felt compassion as if the trial had happened to them. As one who in years past has felt the effects of prayers from others, the St. Louis Ditto's extend our deepest appreciation to those of you - known and unknown - who have petitioned the Lord in our behalf. Your prayers and fasts have been heard and we are being sustained by an incredible unseen power that is stronger than if you were all here to offer physical hugs and words of comfort. We are grateful to the Lord for His kindnesses in dealing with us, and know He is aware of our tiny little family and our needs at the moment. We have faith that through the atonement of Christ, all will be made well, and all will be made right. We have hope and faith that our little girl will live a full and long and healthy life. But if not, we know the Lord will take care of us as He always has, and as He always will.

school.is.out

Here's a little rundown of what we've been doing since Dan finished his first year of bLaw school (a feat in itself, if I do say so):

We finally took some time to do the "touristy" things in the city. This place is totally worth a visit.

 

Camping AND a float trip all in one? Yes, PLEASE! (Isn't he a hot Pocahontas?)

Of course we had a heat wave while we were camping. These fat sausages were the reason Dan did all the paddling.

If anyone could find a rope swing it would be Dan! (but this is Rob - Dan's in the next pic)

Dan

Devin

Holly

Crystallyn (and me and Holly)

Since the prego couldn't rope swing, this is what I did. (Totally LOVE our waterproof camera!)

best.food.ever - and bless the husband for cooking it. Did I do ANYTHING on this trip?

Nauvoo in one day? Totally do-able

What is it with men and flexing?

Bathroom break - as my Dad would say, "Seeing a man about a tractor" (tee hee)

Family reunion in Boise!!! Marcus the Carcus

Meganita

"Uncle Dan is the coolest!" (direct quote from one of the kids)

Bean!!!

Extreme Ice Blocking (seriously intense - too intense for the prego lady)

That ice must be real heavy

No, Dan does not smoke licorice.

BABY SHOWER!!!! Thanks to all the cousins & aunties for the amazing gifts! Can you tell what we're having?

It's a girl!!!!!!!!!!
and yes, we're stoked about the batman pj's from Cuzin Erica :)