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.