8:35

I once told a friend who's son turned four that "four year olds are just kids, not even little kids anymore."  And the pictures below really prove that point.  But still, a few nights ago, Tessa stood as tall as she could and said "Look how big I am!" I was overcome by how small, sweet, and innocent she is.

Four years - whoa.

 

For those of you who knew that Tessa was insisting that she'd be turning FIVE - nine days ago, completely on her own accord, she asked me shyly "Mom, when will I turn four?"  and I tentatively responded "in nine days...?" and she smiled. 

3-5 year olds are ADORABLE!

"Are you ready for the movie star?"

And just because I can't help it

Tessa - 9 weeks old.

New Baby

I have a new little family member.

Laura's baby girl, Hannah Mae, was born today.

I love her.

Tessa's Update

Just before we left town to go to Idaho Tessa had a NICU follow-up evaluation scheduled. Very unfortunately our trip into Boston involved some throwing up, followed by an incredibly long trek to a gas station in order to clean up. Luckily for me (very very luckily indeed) Aaron was a passenger so he handled most of the gross-ness. I'm not going to get to details but suffice it to say, my pregnant stomach would not have handled it well.

The point of the vomit story is to tell you that we postponed the follow-up appointment until we got back from Idaho. This time we used our "key to a throw-up free trip" = pack an extra set of clothes...if you are prepared for a disaster it will not happen. Anyone want to scientifically test that statement for me?

Tessa did really well at her evaluation. Of course she started out shy, but eventually warmed up and had a fun time playing. The bottom line = she was 22 months and tested at 21 months. This is in keeping with the idea that a preemie catches up to her adjusted age by 24 months. I figure that she does more stuff with me at home so that puts her right on target and I couldn't be happier. She tested just a little lower on her expressive language, we are working on that and I keep feeling like she is just about to start talking up a storm. Actually she already talks up a storm, unfortunatly we can't understand what she so expressively tells us.

Hello...Hello...?

Thrilled. To. Death. To be wearing Momma's shoes.

Here is our big little girl helping Momma make taco soup.

Gift and ANOTHER endorsement

For Christmas my little sister Laura made me a book about our experience with Tessa's birth and hospital stay.

You can read it here

Laura is a consultant for Heritage Makers. Unlike other photo books and/or scrap booking systems Heritage Makers helps people to tell the story as much as on the pictures and layout.

I was really touched by the book she made us. Thanks Laura.

16 Months = 16 Months

Yesterday Tessa had an evaluation by a therapy team through Early Intervention. She's been in the program for a year and they do an eval every 6 months.

Yesterday she "tested" at 14-16 months on everything except Gross Motor skills. That is only because she isn't walking...yet.

Do you know what this means? It means that when people ask the simple question "how old is she?" I can drop the inner struggle over which answer to give.

There is a struggle you ask? Trust me its there.

Let use Tessa at 11 months as an example. Keeping in mind that at 11 months she looked and acted like a 8/9 month old when a grandma at the grocery store would ask I could either say "She's 1 months" and get the my-granddaughter-who-is-11-months-is-bigger/talking/waving look. Or I could say "She's 8 months" which is technically a lie (but not in my mind). Of I could say "She's 11 months but she was born early so she's small" which is a mouthful and frankly, over-sharing in a grocery store situation.

But now I need agonize no longer. Particularly because it is fairly common for 16 month olds to still be working on walking (and at the grocery store she's sitting in a cart). Now I can just say her AGE and be done with it.

I almost forgot...

...to do a last minute reminder about Team Tessa and the March for Babies, there is still time to donate.

But even more important I'd like to thank those who have already donated! I really do feel like the March of Dimes has made a difference in the care of preemies.

In fact years ago my Mother helped in some March of Dimes fund raisers. This was 17+ years ago. Well, 17 years ago the treatment for a baby born at Tessa's gestation was to put them in an incubator pumped full of oxygen and "see what happened." I know this because a nurse in the NICU had a baby born at 27 weeks gestation and that very very miraculously survived when it wasn't expected that she would. The research that made so many medical advances in the mean time was partially funded by my Mom's efforts. She never had any premature babies, in fact hers where either at, or beyond term, and I know that asking people for money, even for a good cause, was quite out of her comfort zone, however she did and made such a difference.

So once again, thank you to all who have donated!

Team Tessa

So many people supported us a year ago when Tessa was born and we continue to be grateful for the care shown by each and every person.

I hope then, that its not to presumptuous of me, this year, on Tessa's 1st birthday, to ask for your support in the March of Dimes - March for Babies.

I plan to participate in the walk held

Saturday, April 26, 2008
at 12:30 pm
in Lowell, MA.

Why am I doing this? It is because among the many people that supported us at the birth of Tessa was the Walk of Dimes organization.

Every year, half a million babies in the U.S. are born prematurely. Premature birth is the leading cause of newborn death and many life long disabilities. The funds we raised in March for Babies supports research that saves babies' lives.

Over the years there has been a lot of improvement in the care for premature babies. Not too long ago Tessa may not have made it and so we are grateful for every advance.

In addition to funding research March of Dimes provides in hospital support to families. Our hospitals March of Dimes rep was literally beside me many days providing support, and sometimes just company.

I am grateful for both the large scale work of the March of Dimes and the personal care they gave to my family.

Click here to support my walk by donating, or if you are local consider joining me (and Tessa) in the April March for Babies!!

BBB Charity Report This link has information on how the March of Dimes spends their money and reports that in 2005 they funded 517 research grants for prematurity and birth defects.

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.

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?