Recovering

I've decided I'm getting old. While I do recognize that I went through a very major surgery, I am here to tell you that my body is not bouncing back like it would have 5 years ago. I'm a mere 6 weeks from turning the dreaded 30. Woof.

Anyway, I am definitely recovering, and I no longer look like Tim Allen in the movie The Santa Clause (remember how he has to wear sweats to a business meeting to cover up his embarrassing weight gain and he tells people he got stung by a really big bee? That was me!) I'm done retaining water and am now just waiting for my uterus to get back to normal size (apologies to my dad for the use of the "u" word). I don't have energy to run a marathon (or walk one) - so my days are filled with random things: lots of reading, I have to get in at least one episode of Lost each day (thank you netflix), and lots of sleep (I realized the other day that I am like a 2 year old. I sleep at least 10 hours each night, and if I don't get my afternoon nap I get grumpy.) But all in all, I'm doing well and the doctors say I'm coming right along. :)

Here are some random pics for your viewing pleasure:

 This picture doesn't do it justice, but during one of our hospital visits, my i.v. blew and my hand swelled to gargantuan size in a matter of minutes. Dan thought it was cool.

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Just in case you're lucky enough to never have been in the hospital for an extended period of time, flowers really do help brighten the dreary rooms. I'm not exaggerating when I say that every person who walked into our room commented on how beautiful the flowers looked, and how wonderful they smelled. They were right. THANK YOU to those who contributed to this floral blissfulness.

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Lydia's burial dress. Isn't it BEAUTIFUL? Custom-made by a wonderful family friend in Utah. She's amazing enough that she even made us 2 identical dresses, so I have one to cherish forever. THANK YOU!

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My "Lydia Shrine." People have been extremely kind and generous to us during this difficult time. A roommate from college painted "The Lydia Tree" you see on the left. The blanket is the very same one we wrapped her in at the hospital. And the list goes on - so many amazing things to help honor our little girl. THANK YOU!

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And who knew? Apparently my husband should quit school and start his own sandwich-making shop. Seriously - he's a genius when it comes to crafting a delicious masterpiece. Here's what he said moments before I snapped this photo: "It's kind of like holding a giant fish!" Love.Him.

14 in 2!

It's true. I lost 14 pounds in 2 days and am now considering a debut on the Biggest Loser. :) We are home from the hospital and I think it's safe to say that I am now recovering like a normal person. I still have some more water weight to lose, but all-in-all, it feels good to have my body back to normal-ish size. Oh that losing weight after the holidays could be as quick!

Alive and (mostly) Well

If I had things my way I would have my amazing husband continue the blog from here on out. He is my hero and has been my rock through all of this, but I'm not sure I could convince him to do the blogging for much longer. And since it gives me something to do while I recover, you are stuck with me.

Dan put it well when he said I am not a fan of publishing my personal thoughts and feelings on the world wide web (not sure why . . . you'd think the technology teacher in me would be all over that kind of thing) but I will say a few things here.

We feel immense heartache at losing our little Lydia. But we cannot deny that we have been blessed beyond measure.  Those blessings help keep us going during the hard moments. But what has really kept us going is the knowledge we have that we will see Lydia again. I take comfort in the fact that Dan and I were not only married for this life, but sealed to each other and to our children in a Temple of the Lord for time AND for all eternity. And I don't know about you, but I can't wait for eternity.

The Salt Lake Temple where Dan and I were married

I was thinking I might go ahead and list all the blessings we've received (which would mostly include a long list of what people have done for us) but I know I would leave someone or something out, and many items would be much too personal or sacred to share. But once again we extend our gratitude to those who have reached out in any way with words of comfort, support, and love. They do make a difference to us. We thank you and we love you.

And now a little update on us:
After my week-long stint in the hospital, we had a couple badly-needed days of "us" time in our little apartment in St. Louis before we headed to Utah. Both families were awaiting with open arms to comfort and mourn with us. We held a small service for Lydia while there. It was perfect in every way and I will never forget it. Remember how I said we have seen so many blessings? One huge blessing is that we were able to bury Lydia in the same plot as my mom. Which also means she is only a few feet away from my sister. It gives me so much comfort as a mom to know that she is surrounded by family.

My beloved cemetery

After such a major surgery, I of course was not up to 100% when we left, so we spent a lot of time resting for my sake . . . which means we've watched a LOT of Olympics. Go USA! We headed back to St. Louis and went to the doctor  for a check-up . . . . and since I can't do anything the easy way, the doctor quickly admitted us back into the hospital. And we just HAPPENED to be put in the same room as before. The doctors say my water-retention is getting much better (I won't tell you how huge I was) and I should be able to leave tomorrow. Once again, thank goodness for the Olympics to get me through this visit! And hopefully by the next time I write, I won't have to update you on anymore hospital visits. Amen.

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.
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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).