"A few of my favorite things"

I wanted to be a mommy so I could rock-a-bye my baby. I think being rock-a-byed were some the best times of my life. Sometimes when I'm feeling kind of needy I wish I could still be rock-a-byed by my mommy.

The first time I held Tessa I had a stockpile of songs I'd been waiting a long time to sing her. I tried each one on the list and the one that stuck the most was "These are a few of my Favorite Things". I took it as a personal victory that I would be in my little corner humming to Tessa, then a few minutes later a nurse would walk by singing "brown paper packages tied up with strings" and have no idea how that got stuck in her head.

Other songs I like to sing to Tessa are...

I want to be your Personal Penguin (thanks Liz)

Lullaby by Jack Johnson (this was especcially poignant while she was in the hospital

Whenever I hear the song of a bird

I love to see the Temple

Lately we've started dancing to "Sweet Caroline" (dum dum dum)

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.

One Half a Year!

When last we met...

It has been a long time since I updated - Tessa was just home from the Hospital. It was Mother's Day...and it was three months ago.

Since then, well, thankfully, things have wonderfully normal. The only real indication of Tessa's rough start is the more frequent doctor visits, which mainly focus on her weight gain. Although she has been a finiky eater thus far she has still gained, about three quarters of an ounce a day. She came home from the hospital at 6 lbs. 10 oz. and today, I estimate, she is around 11 lbs. She is still long for her weight, but she has sweetly kissable cheeks and her little legs are getting more squeezable by the day.



Here are some other pictures of the past three months.

Mommy and Tessa's first day home alone...this is going to be easy ;) .

Tessa is all dressed up to go out for Mommy and Daddy's 6th Anniversary.

See I told you this would be easy...all she does is sleep.

Happy Girl.

Pretty Dress

Awwwww....

Tessa's Blessing was July 1st. Grandma Udy made her pretty dress.

Tessa as a tourist, on board the USS Constitution.

Avast ye mateys. (Can you tell Tessa is just riveted by our country's nautical history?)

This is the side Tessa has her scar on...its pretty much invisible!

Tessa and Mommy came into Boston on the train to have lunch with Daddy at the new Wagamama resturaunt at Fanueil Hall.

Playtime - she doesn't do as much sleeping lately, how can she with all these toys?

And to top it off...look what we started doing this past weekend!

Can you tell she likes it?

A Brief Re-Cap, In Pictures.

If you followed the first three months of Tessa's life on our care page (http://www.carepages.com/ page name: ourtessa) then you read more details. This is my effort to summarize, briefly.

Day 1 of Life

Day 4 of Life...

...and the day we got to hold her.

Day 8 of Life - still at 2 lbs. 3 oz.

3 weeks 5 days old

Happy One Month to my Sweet Girl

One Month and 2 lbs. 13 oz.

5 weeks (31weeks gestation) and looking around

The big move from NEMC to the local hospital. Tessa was just barely 3 lbs when she made her first car ride.

Settling in at the new hospital.

Unfortunately it didn't stick. After a week and a half Tessa had to go back to NEMC for an unexpected PDA Ligation. This is her just after surgery, she was still out from the anesthesia. I hate to state the obvious but this was the worst day of Mommy and Daddy's lives.

BUT - It was all for the best. 24 hours after the surgery Tessa was breathing on her own, without the nasal cannula!! We had thought she was looking so good before the surgery, but now her cheeks were rosy and it even seemed like they were chubbier. (This is a picture of a happy baby on morphine.)

Easter 2007

This is the day we said goodbye (for the second time) to Tessa's primary nurses Meredith and Julie. They took very good care of Tessa, and of her parents.

At two months old Tessa had her first bottle.

And she weighed 5 pounds!

Right about now we thought we might never get home. Tessa was breathing perfectly on her own, she just wouldn't eat enough...

...but finally on her three month birthday, her 90th day of Life, and Mother's Day.

She came HOME!

Our Assignment

"I want you to work on your assignment today," the nurse said when I called down to the NICU to check on the baby.

PANIC.

"What assignment?!"

"We want to know what name to call this little girl."

Woosh...oooooh. I think I can DO that!

Well, in theory I could. It actually took us till the next morning to decide. The week before we had narrowed it down from 52 possibilities, to seven. So we took those seven and went to work. Our top choices had originally been pretty little names like Julianna.

Then we met our baby. She deserved a name that was cute and spunky. Tough in a "Daddy-is-wrapped-around-my-finger-and-he-hasn't-even-held-me-yet" kind of way.

Seven became three and we finally chose Tessa. I knew then, and can tell you know, that it is the perfect name for her. Tessa Rachel U--.

And if you want to read something REALLY cheesy then seriously, brace yourself...

E + A = TRU Luv

"So what exactly happened?" - the short version

I woke up Monday morning with a backache that came and went. I went into the hospital thinking I would get sent home to rest. Luckily, they checked my cervix right before they sent me home and it was dialated to a 3/4.

So into Boston I went, they gave me steroid shots to mature the baby's lungs and 36 hours later, with no epidural, I delivered our 2lb 3oz. baby girl.

The first pictures of her are so hard to look at...and at the same time I can see that it is the same little girl I snuggle with now. I could tell her personality from the very first day.