Wednesday, August 15, 2007

Onion rings & Neurologists

I have a confession. There is one part of Tessa's story I didn't share, until recently. I guess you could say this is "the rest of the story."

I was discharged from the hospital Thursday night and planned to come back into town Friday on the train. I was a bit slow getting things taken care of the next morning and didn't head to the train station till about 4-ish. I stopped to get some cash and I got a phone call from the NICU. The doctor on call nonchalantly asked if I was planning on coming in that day. I felt a bit chastened and let her know I was. She wanted to discuss Tessa's prognosis with us and after she quickly got off the phone I realized I should have verified everything was okay, I tried not to be too alarmed in the hour it took to get to the hospital. Then when I get there Meredith (Tessa's primary nurse) wouldn't really look me in the eyes and was very concerned with when Aaron would get there from work. So I called him, he was on his way and when he got there we were taken into "the patient consult room."

Yes, in case you were wondering, that isn't a good thing. We were very gently told that a routine head ultrasound (u/s) showed that Tessa had bleeding in her brain (IVH). There are 4 grades of IVH, grade 1 and 2 aren't generally worrisome, grade 3 causes concern, grade 4 is the worst. Preemies very often have these IVHs because of the stress the delicate tissues of the brain are under. Tessa had a grade 4 on one side of her brain and a grade 3 on the other. This bleeding occurs in the ventricles and grade 3 means the whole ventricle (that is where the spinal fluid is made, i think) was full of blood and grade 4 means that blood had escaped into the gray matter of the brain.

At first we just heard them talking and accepted what they were saying. They would say that it was serious, and then in the next breath say that babies are very resilient and that this could mean nothing in the long run. Her health overall was good, they were going to do bi-weekly u/s to monitor the ventricle sizes and head growth. Hopefully the bleeding would stop, or had already stopped and as long as there was no swelling than any further damage could be avoided.

Brain damage. That is why we didn't share this with everyone. Our baby had brain damage. And it was my fault.

We really sort of continued on, holding onto the hopefulness of the NICU staff. Of course they said hopeful things but acted like it was a tragedy, so I really felt like they were sugarcoating it for us.

The following Thursday we met with the neurologist. I had thought I would be meeting with her by myself since it was during the day, but Aaron showed up at the very last minute and we went together. I am so glad, if I had had to repeat the things she told me I couldn't have done it.

She did not sugar coat things. She showed us the three u/s they had done so far and showed us the bleeding. She also showed us some cysts that were indicative of previous bleeding, these cysts take 2-3 weeks to show up after the blood recedes. Tessa had been alive a week. Her brain had been bleeding while she was still inutero.

Until then I had been mourning that she was now "outside" of me, instead of "inside" when it was safe, and turns out that wasn't the case. She hadn't been safe inside of me either.

The neurologist also told us the truth. With a grade 4 IVH we should count on Tessa having some form of cerebral palsy. Hopefully it would be mild, most likely affecting her left leg but we shouldn't think that there would be no effect, it was realistic. "If we prayed", she said "we should pray that there would be no blockage of the ventricles leading to swelling." If that happened they would have to drain the fluid and put in a shunt, which she would have for life.

Does devastated describe well enough how we felt? The most overwhelming feeling was sorrow that our sweet baby had such a malignant force inside her tiny little brain. It was horror at the idea of brain damage. Brain damage. We never said that out loud to each other. Bleeding in the brain sounds bad, brain damage is unimaginable.

We went back to Tessa's bedside. She looked so good. It didn't matter what the her prognosis was, when we were with her we felt calm. There was the information they doctors told us, and then there was the facts we could see, and those facts won over the dreadful things we were told.

So that was day 9 of life. Over all she had 17 u/s in 13 weeks. At first they were bi-weekly. Then as the bruised area stayed the same and the ventricles miraculous drained the blood without becoming clogged, the u/s were weekly then every other week.

Finally, after she was discharged we went in for the MRI. This was to be the ultimate diagnostic answer. Already we could see that Tessa was moving her body equally on both sides and had normal reactions. But what would the MRI show?

A week after the MRI we met with the neurologist. We were had the familiar feeling of hopeful dread.

And the neurologist was practically dancing. "Do you want to see the MRI tape?" she asked. She took us to her office, the same place she had told us that we should count on Tessa having some sort of disability, and showed us that...

...there was no bruising, no swelling, no notable damage visible. Tessa's brain was 99% perfect. She said if she hadn't seen the previous u/s she wouldn't have known Tessa was a "26-weeker" or that she had any bleeding. She said she had heard of but never seen a recovery like this

And she told us to go home and celebrate. Of course we had a baby who wasn't supposed to be around a lot of people and Aaron had to work late that night. So I went to the grocery store on the way home and bought all of the freezer appetizers they had. Onion rings, potato skins, mozzarella sticks and ice cream (the doctor had suggested beer and ice cream so I was improvising). We ate that for dinner, in addition to the 2 pints of Ben and Jerry's that Aaron brought home. Doctor's orders.

In the previous three months Aaron and I had talked a lot about miracles. We had definitely already been blessed with more than we deserved. So I wasn't expecting another one. My prayers were (and still are of course) that we could deal with whatever was in Tessa's future.

Aaron prayed for a miracle. I am so glad he did.
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Brea said...

Em...that brought tears to my eyes. I'm so sorry you had to endure such pain, no one should ever have to know fear like that. I'm so thrilled that Tessa made such a miraculous recovery. She most certainly had BOATLOADS of prayers. Your sweet baby girl is absolute perfection...nothing less. Many hugs to your wonderful family!

-Brea (bopsvw)

Liz said...

Thanks for sharing! MIRACLES HAPPEN!!! ...and I'm so glad you guys got one!

Melissa said...

thanks for sharing your story. It truly is amazing. I hope you have the complete story written down sonewhere-for it is a miracle. We pray for the best for you all. the Fehrenbacker's

Ericka said...

I just want to say thanks for a dose of perspective. I am one of those moms from the opposite side of the fertility-challenged group - I can't stop having kids long enough to finish my degree. (My kids are two, 10 months, and a twin @ 10 months.) I maintain that having kids faster than you can provide for them IS a challenge. But I consider myself SO BLESSED that everyone is healthy. Especially since all went well with the birth of the twins. Thanks for reminding me to be grateful, and I hope the miracles continue for your little family.

Traci said...

Em -
I have one thing to say...architect or writer...hmmm could go either way..

submit it to parenting or something - Tessa is is her parents

Love Trci

Maria said...

Wow. You are incredible. I can't believe how amazingly patient and...and...and...I don't even know how to describe it. You and Aaron are a couple of rocks in the stormy seas of life. And after all you had to go through to get Tessa here... I'm sorry that I burdened you with any of my craziness during that time. I think you're amazing and wonderful. AND, THANK HEAVEN. No other way to say it. She is absolutely beautiful! I love you guys!
Love, Your Tear-Streaked Friend.

Maria said...

It's time for another's almost been a month!!

And PS, kudos to LIZ for the rockin picture of herself...she reminds me of someone--like I ought to know her from somewhere...

Sweet Em said...

The bittersweet thing about miracles is that by definition they are rare, or at least uncommon; things that don't always happen to everyone, no matter how deserving.

I've heard that as an oldest child it is in my nature to always want everything to be fair. But in the matter of miracles it very often isn't. And not unfair in "she got a bigger peice of cake than me" but unfair in a "that person's life will never be the same" sort of way.

Within a few days of when I posted this a friend of mine experienced a heartbreaking end to her pregnancy. Many people were praying for her but she didn't get a miracle. Yes, I did/do feel guilty. And no, I don't have an answer...well actually I do. Unfortunately saying "God has a plan for each of us," as much as it may be true, really offers no comfort to a person suffering. In fact, it is painful to thing that God wants such things for people. So I cling to my idea that God does not want "bad things" to happen to people, nor does he make them happen. Rather he lets them happen for a reason that he only knows, that will ultimately be for our good. Then he cries with us and offers us the comfort, weak as it is, of friends who care.

In my guilt I don't deny my gratitude for Tessa's miracle, but I also ache for the unfairness of life, and knowing that our concern and empathy for others is what makes us brothers and sisters I will continue to pray for those I care about.