Week of Blessings

This has been a good week. Considering where I was only a year ago at this time, we have come through a lot and are still coming through a lot, but we are at least getting somewhere I do believe.

After posting pictures of what all we received at Tori's Celebration and letting you know that we would be going that next day to deliver them, a lot has happened. We did go that next morning and met our nurse and friend, Amanda, there at the hospital and loaded all of our stuff onto a cart and wheeled it up to the unit. When the doors opened, it was sudden, but there we were, back in this place that I had come to know so well. Where I had spent hours and hours at, literally.

We saw several of the nurses and one of Tori's doctors, all of whom we recognized and they recognized us...when you're there as long as we were, you kind of have to get to know people! :) In a way, I felt like I had never left because as Josh and I walked around the unit, we immediately thought and told Amanda that all the beeps, alarms, smells, sights, etc. made us feel like we had never left. All at once, time seemed to stand still. Six months since we'd been in this type of atmosphere...it's hard to believe it's been that long when honestly, I always think it's just been a couple of months.

As we walked around, we had the chance to see and talk with several parents. I was afraid I would become too emotional, and didn't want to discourage any parents by saying, "Hi, I'm here because my daughter died." I wanted them to have hope, to know that their daughter or son DOES have a chance. I simply told them that we were there doing this because we have been where they are, walked in their shoes, and felt what they feel during this emotional roller coaster. Amanda was very good at helping me get out at times; I didn't really realize just how difficult it may be emotionally at times. It was healing for me, though, I truly believe.

We saw babies that were the same exact size as Tori was...one was 1 lb, 6 oz, almost exactly what she was when she was born. Although she had changed so much by the time she died, I could still see her face on that baby laying there, so tiny and petite. He had a long, narrow face with a tiny feeding tube out of his mouth...just like Tori did for so long in the beginning.

We saw another baby in the EXACT spot where Tori FIRST was in the unit, and I am not exaggerating, it looked JUST like her. It was a little girl that was very swollen just like Tori was when she got real sick and I literally had to do a double take. I could NOT take my eyes off of her. There are SO many different bed spaces in the unit, and she was in the exact one that Tori was first in when she was still in the Giraffe Omnibed!! It was weird, but sentimental to me.

The first mom that we talked to had a baby boy in the EXACT spot she was in her last few weeks there. I remembered sitting right where this mom was standing when they didn't give me much hope for my baby girl, and that is when we decided to do the transfer to Vanderbilt. That spot was where the Flight nurses and EMT came in and loaded my baby up. That was her last night at HH NICU. I truly, truly remembered it all like it was yesterday. It was very surreal.

It could have been very difficult, but I made it into a positive thing in my mind. It made me want to do more, somehow, in some way. I so badly wanted those families to know how much I cared about them, how bad I wanted to reach out and hug them and cry with them. For the sake of not looking crazy, I didn't yell out what I was thinking deep inside! I wanted to tell them so much, to encourage their hearts. I hope we were able to do just that in some small way. We gave each parent that was there a bag, with a note inside of Tori's story and how they could contact us if they would like. I told them what all of YOU had done by raising these items just for them. These parents were blown away and so thankful that a complete stranger (and many unseen others) would give of their time, money and resources to give to them and their precious baby. So again, thank you from the bottom of my heart.

Sorry, just hold on through this post, it's going to be a lengthy one I can tell. I haven't filled you in all week, so I have a lot to tell...bear with me.

That day as we were getting in the car, Josh asked me a question we have asked ourselves several times, and that was, "So when are we going to hear something from Vanderbilt?!" Being there got us both to thinking about everything in the world I'm sure, and that was still a question on the top of our list we've had unanswered, and that is, what was Tori's diagnosis??

If you followed Tori's story for any time at all, you will recall her being so incredibly premature in the beginning, 712 grams to be exact. She was so small that she could not tolerate her feedings. I remember them telling us countless times that her body is not truly ready to be doing this just yet, so we are trying to force and train it to do something that it's just not ready for yet.

She just never could tolerate it. Every time we would try to increase how much feeds she was getting, she would vomit and have different issues. Needless to say, she was on TPN more than she was feeds. We tried everything, from breast milk to several special formulas, everything. Nothing worked. We wondered why she had so many feeding issues, and really, this was her only issue until we transferred to Vanderbilt and that is when she got real sick.

Back to our unanswered question, we were still waiting on Tori's autopsy results. We had it made up in our mind, because of all the unexplained things to so many physicians and specialists, that this was some type of metabolic or genetic issue. We had done several tests before she died, and everything had come back negative. They tested for everything they could possibly think to test for. If she matched a similarity in the smallest way, they tested for it. Well, they did the same thing after she died. They did extensive and thorough tissue sample testings which is what has taken so long. They tested for other genetic or possible causes and that's what we've been waiting to hear about.

Well, I say this has been a week of blessings because first of all Tori's party was a blessing to me. It was a blessing to see all of the people come and do something good in her name and in her memory. Then Sunday, we had a WONDERFUL time of praise and worship at Church. We did the musical, "Thank You, Lord," by Don Moen and it was powerful for me. I enjoyed it immensely and felt like I was at the throne of Jesus Himself, right with my daughter, praising Him together. Then Tuesday, we were able to go back into the NICU, a hard, but wonderful thing we got to do. I was so blessed just to be there and be a blessing! I would do that all the time if I had the money and the time. I love to give! Anyway, that afternoon was also a blessing in disguise.

I got a call that afternoon, out of all afternoons, from Vanderbilt, and it was Tori's main attending physician wanting to give us the results of her autopsy. I was shocked. We had waited for months, and now, out of all days and weeks, it was today. I somewhat dreaded it to be honest, because I expected to hear the worst. He proceeded to tell me that it was NOTHING genetic. Did you hear me? Nothing. Everything they had tested for, both before and after, had come back negative. There was absolutely nothing else they could think to test for he said. He said all of her problems were linked from extreme prematurity. Let me explain.

I already told you above how she never could tolerate feeds. She never could get off the TPN. The report he sent me which I got today says that some infants experience liver damage as early as 15 days of being on the TPN. When I used to ask you all to pray for her to get off the TPN because time was not on her side, this was why. It said liver failure can actually occur in infants within just a few months of being on TPN for sole nutritional purposes. Her little liver was just not strong enough to take so much TPN. She needed it to keep her alive, but to be on it that long, it is not good for you. Because she was so premature, it was even worse and was like we never could counteract the damage it had already done.

Her cause of death was cirrhosis of the liver. Her liver weighed 354 grams when she died, which was half of what her whole body weighed when she was born. Because it affected her liver so badly, it in turn affected her spleen, which weighed 205 grams at death. This is why her stomach was so big. Her heart, bowels and everything else looked fine for the most part, except that they had fluid buildup and were a little inflamed because of all the bile backup in the liver. Her liver had affected everything else and was the main issue.

There are several other notes in the autopsy, but that's the gyst of it. After hearing this, Josh and I both were shocked. We expected, and even wanted, a firm diagnosis. We wanted a "REASON" of why this happened. We needed closure, it seemed, from these results. Instead, we were left with, "well, nothing genetic was wrong after all, no storage disorder or anything that we suspected. Instead, it was just her extreme prematurity and inability to be off the TPN which affected her liver and then it was too bad until it was irreversible and affected everything else." WOW.

After having some time to digest it, I felt like a heavy burden was lifted off of me. The doctor told me that this was hopefully "the silver lining in the midst of everything dark." I thought, you know, he's right. This means that nothing is wrong with Josh and I, praise God, and that if we chose to, we could have more children. I am too weary at this point to go there, because of how sick I was, and need some more facts about my health before I would even venture in that direction again, but it was just good to know that we could, if we wanted to. What a blessing.

It was then that I told Josh in so many words, "I know it could be easy to be mad at God for this, since it wasn't a disease or some type of disorder like we suspected, and wonder if we could have done something different, helped her in some way, but we couldn't have. God knew her EXACT number of days on this earth. He knew exactly what was going on with her body. He knew that nothing was genetically wrong, but none of these doctors did. He knew her purpose and everything that would take place during her journey. We saw firsthand all of the technology they have available, all of the wisdom these doctors have, and we expected and trusted they would "fix" our daughter in some way. The reality is, she was under 2 pounds, and although many babies have made it, it is still VERY hard for a baby with so many of the odds against them at 712 grams. (I had complete faith that God could have healed her, there was never a doubt in my mind. I'm just talking about the logic of when a baby is born that small and the prognosis they possibly give.) With her having strong lungs, no brain bleeds and looking healthy at birth other than her size, we expected and hoped for the best. Just as we should have as her parents. However, it was not what happened, and it's a blessing to know that I can still have children. That not one in four of my children may have something wrong with them." We talked about a lot of other things, but that was the highlight of it.

I called a few friends and family members to tell them the "good news," to know nothing was really "wrong," and while telling one friend, she brought to my attention, which I had not thought of at the time yet: "What a blessing to get this phone call TODAY, out of all days, out of all the months of waiting; the day you go to the NICU and do something for someone else; being a blessing to others." It hit me, that yes, when we are faithful, He shines His favor and blessings on our lives.

Now that statement is NOT to draw attention to myself or my actions, it is simply to testify to what God can do when and if we are willing to serve Him with what He gives us. I never, ever, ever expected to have a baby in the NICU and months later trying to encourage others who are now at where I've been, but I've tried to take what He's given me, and do what I think I should with it. I am NOT perfect, I WILL mess up, but I give HIM all the glory for any of the good that does come out of my life. Isn't that what we're here for...to love others as He's loved us, and bring others to Him as well?? I need to do a better job at it, but Lord willing, He will give me many more years to serve Him and attempt to do a better job at it everyday. The statement has never meant more to me before than it has this week..."Blessed and Highly favored."