Intake of breath

I had a moment tonight.

We spent Family Home Evening at the Common where we luxuriated in the amazing weather. Tessa has been surprising me, pleasantly, by finding three-year-olds to chase around the park with. I looked up when I heard her laughing and screaming to see her run full speed around the slide with a curly haired girl in hot pursuit. It only took me a second to realize that this little girl (who I'd seen around the past few years with her mother) was at the NEMC NICU at the same time Tessa was.

Two happy beautiful girls playing together.

When I introduced myself to her father he said "Thank goodness for that place." I agreed.

Blue Light Special

Once upon a time a family was enjoying being "normal." Then they went to the pediatrician, their new baby was diagnosed with severe jaundice and they got to visit the Special Care Nursery at their local hospital for a few days. (Time frame as of yet, undecided. Soo far 4 nights and counting...with a pretty good chance of coming home on Friday afternoon)

The Mom was pretty upset at this turn of events and was mad at the Universe.

The Dad manned the home front while Mom stayed over-night (x4) to feed Baby.

The Big Sister had fun playing at Friends' houses.

The Baby was totally blissed out under the tanning lights and didn't seem to mind one bit.

An (un)Eventful Weekend

Friday night was Aaron and my date night.

We got a babysitter, spent time together laughing and talking and I got breakfast in bed the next morning.

Unfortunately my primping for this outing involved a regularly scheduled ultrasound that showed my cervix had shortened by 30% in 2 weeks. And the location was L&D triage at Brigham and Women's hospital.

After seeing that my cervix had shortened the doctor suggested a cerclage (stitch through the cervix) to prevent any dilation. Aaron came home, we dropped Tessa off at some friends house and off we went. Ultimately the doctors at the hospital decided not to do the cerclage because I was so close to "viability"* and they didn't want to cause any PTL (Pre-Term Labor).

My cervix was measured at 2cm long, which isn't SUPER short, just shorter than it "should" be. I was not contracting. So they finally decided just to admit me for observation - hence the breakfast in bed (you'll notice the bed in the picture above is a twin size...never a good sign.)

Nevertheless, I wasn't kidding about date night. I was actually very surprised at how calm I felt during this whole thing (ie my intuition told me I was not going to have a baby that weekend), and so Aaron and I sat in our little room and joked and laughed and "how was your day?-d" from about 9 until midnight. Around midnight Aaron headed home and I sat waiting for a room.

I ended up staying in the hospital until Sunday afternoon. A test and an ultrasound gave us strong indications that I wasn't about to deliver. The test** they did was negative, and if it is negative gives someone a 95-99% certainty that they aren't going to deliver within 2 weeks. The ultrasound was much better than the one on Friday, whether that had to do with an actually growth in my cervical legnth, or a different person and machine doing the measuring I don't know. I am now home on bedrest and looking toward 26 weeks...and beyond (in Buzz Lightyear voice.)

*Viability is considered 24 weeks (though that is stretching to 23 weeks in some cases). That is when the baby has a fighting chance of surviving outside the womb and most hospitals will consider resessitation, before that some will not. At 23 weeks a baby has a 20% of survival, at 25 weeks it is 65%, and at 26 weeks (when Tessa was born) it is 75%. Though full-term is our ultimate goal, afte 30 weeks babies have a 90-95% survival rate.

**The test is called a Fetal Fibronectin or fFN test. See this link on the March of Dimes website for more info because I can't explain it to you.

Random notes:
I am recovering from a cold (I know you know because I've been complaining about it all week) and so was coughing up a storm the whole time I was in the hospital. A normal person would just suffer through it, but I had nurses checking on me every 4 hours so they listened to my lungs and "prescribed" things like saline spray and cough drops (both over the counter medicines that I'm sure I/my insurance paid an arm for).

Tessa loved her weekend with Daddy. They came to visit me on Saturday, she loved the bed with the moveable head and foot buttons and then when it was time to go she gave me a big hug, a kiss, waved bye-bye and headed down the hall.

I took the chance to visit the NICU. This is a different hospital than the one we delivered Tessa at and I was feeling very sad not to have access to the nurses who I'd consider friends and missing the familiarity of the surroundings. The NICU tour was helpful in at least making me feel comfortable with the level of care a preemie would get (still hoping to avoid it though). However, I haven't been in a NICU since we left with Tessa and it was HARD to go back. The babies are so tiny and the feelings are still very fresh.

I was looking forward to hearing how Aaron was 15 minutes late for church on his first morning ever of being in charge of getting out the door (I even had a spy in place who was going to keep an eye on him). Yes, I know that is a snarky thing to think...but don't worry, he miscalculated and thought he needed to leave by 8:00, when it is really by 8:30...and so he was there 10 minutes early. Darn...seriously.

We had a major snow storm Saturday and Sunday. The roads were so bad Aaron almost left me at the hospital until Monday! I realized that I'm really working this whole "mothering" thing. I haven't had to shovel in three winters. Winter 07 - pregnant, winter 08 - taking care of a baby, winter 09 - pregnant (which leads me to believe that winter 10 I'll be off the hook as well!)

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.

"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.

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 (really) Long Version

About 5:15 am the next morning (Monday, February 11th) I woke Aaron up.

Me: Honey, I've been having some back aches and the doctor says I should go to the hospital to be checked...its probably nothing, do you want to come with me?

Him: Do I need to?

Me: Well, its probably nothing but I'll leave it up to you.

Him: Well, my battery still isn't recharged so I'll stay here.

Me: Well, its probably nothing but if you wanted to come you could.

Him: Let me know how it goes.

Me: Its probably nothing...but if it IS something you wouldn't have a car.

Him: I'll get dressed.

So off we went. The whole time I'm expecting a rather embarrassing experience where something totally obvious and benign is happening and I'm sent home"to rest."

-----

At the hospital they took a bunch of swabs to test for various things then put me on a fetal heart-rate and contraction monitor for an hour. Aaron and I napped...the shifts changed...the new midwife came in. I had only had one contraction that showed up on the monitor...with a bunch of other "irritable uterine" contractions. It appeared everything was alright but just before they sent me home the midwife checked my cervix...

...which was dialated to a 3-4cm.

Everything sped up after that.

"We're sending you to Boston."

"We're giving you a shot to mature the baby's lungs."

"We are going to try to get you to 28 weeks, its better if you can get that far."

"This drug we're giving you to slow the contractions will make you very hot."

I only knew a 3-4 cm dilation was bad because just that week I had gotten brave enough to read the "Labor and Delivery" section of my pregnancy books. Aaron only new it was bad because I burst into hysterical tears.

It was such a blessing to have the specific midwife on call at the time. I had never met her before but it turns out that the past year she had given birth at 28weeks and she handled Aaron and I perfectly. She calmed me down as much as possible, told Aaron a little bit of what to expect (still with the hope I would be on bed rest for awhile) and then when he asked me what I wanted him to bring from home she gave him a list of insightful things like "toothbrush" and "change of clothes." That was beyond what I could think of at the time.

After the ambulance delivered me to the hospital in Boston (Tufts - New England Medical Center) I was set up in a delivery room. Aaron showed up an hour and a half later after stopping to get stuff at the house. (It all went by really quick...but I was so anxious and glad when he made it. After that I pretty much didn't let him leave unless he was hunting down a nurse to turn off the incessant beeping from various machines).

(BTW - My first ambulance ride solved the age old question about what route is fastest to Boston. IF it is during the day (not rush hour) then taking Route 1 is faster then taking 93. However, if you are an ambulance there is no toll...but if you are a car then there is a $3.00 toll... so take that into consideration.)

While Aaron was getting to the hospital he made the necessary phone calls to friends and family. When people (i.e. my Mom and Mindy) saw my number show up on the caller ID and heard Aaron's voice they immediately knew something was wrong.

Aaron made those calls because we needed their prayers and we asked the people we called to spread the word. I don't know everyone who prayed for us, but we felt the effects of and are beyond grateful for, each prayer given. In my past, when I would ask people what I could do to help, and they said "Pray" I thought they were just being polite by not asking for help. Now I know that in a situation like this...they mean it! The prayers offered for a loved one, and for a stranger, have a definite power behind them.

I was also given a blessing, the words of which I can't remember. I do however remember the feeling of calm and reassurance I felt and which was so important that day, and the weeks to come. A few days later, when we were facing the first of our parenting challenges, I wrote myself a little reminder about those feelings so that I could remember them when I was no longer feeling calm.

-----

By 2:30 that afternoon I had dilated to 6cm and the contractions where irregular but speeding up. They took me off the magnesium sulfate because it wasn't working and they wanted to avoid potential side effects. Ironically, the contractions slowed down after that.

A Neonatalogist came by to talk to us about what the baby's prognosis would be if she were born at that gestation (26 weeks). He was another bright spot in the experience. He was very honest yet hopeful and gave us a lot of confidence. He was also just plain nice.

Unfortunatly, in the middle of our discussion I thought my water had broken and I was really panicked. The OB staff (it is a teaching hospital so there is always 3x as many people as really need to be there) came in and it was determined that I had a "partial placental abruption" which means that the placenta had partially detatched from the uterine wall...I won't go into too many details but that was indicated by a lot of blood. This may be why I started contracting, the blood had pooled behind the placenta, or it could have been as a result of the contracting. No real answer.

The baby warmer was all set up and we all were waiting for the immenint delivery. We hoped I could go till 8:30 that night so that the steroid shots would have at least 12 hours to work...the ideal would be 48 hours but it was just too much to hope for that.

That night was very short and very long. At some point I was measured at 9cm dialated. I felt like delivery would happend with in the hour...all night.

Yet when the day nurse started her shift the next day...there I was. So she gave me the 2nd dose of the steriod. Literally, every minute counted as it worked on the baby's lungs. In fact she gave it to me about 1/2 hour early because I was so close to delivering.

Then the day shift ended and back to the night shift...who was also surpised to still see me there.
And then finally, exactly 36 hours after the first steroid shot was given, I delivered our baby.

She cried.

I was so afraid she wouldn't cry. She cried and wiggled...the neonatalogist kept exclaiming gleefully how much she was moving around. We had made it.

I'm not sure why but I had known that the baby was safe inside of me, and after meeting the neonatalogists, that she would be well taken care of when she arrived, I was most scared of the delivery.

The nurses showed her too me once they had taken their first assessment (by the way, apgar of 6 at one minute and 7 and five minutes) they showed her to me, all bundled up in a blanket, then they wisked her away to the NICU and the waiting hands of the nurses who we are terribly indebted to.

Well, here is the part that is perhaps too honest. After they took the baby to the NICU they got me cleaned up and took me to a recovery room. I hadn't had any real sleep. or anything to eat, for over 48 hours. I was very excited to have some pizza Aaron had stashed for me in the fridge and then he left in time to catch the last train and I fell sound asleep. The too honest part? Well, I can't remember perfectly but as I sit here tonight I don't remember thinking too much about that little baby in the NICU. Afterall, I wasn't expecting to be a Mommy for another three months at least, the whole thing had been so unexpected (as I'm sure it generally is) and I was oh so tired.

However as I slept soundly, on a mattress about 4,000x more comfortable than the L&D bed, I had my first mommy moment. Sometime in the middle of the night a white coated woman woke me up to have me sign a permission form to give the baby a blood transfusion.

Who was I to give this permission? What made me all of a sudden someone's mother?

In the morning when I woke up I was gripped with fear. While I had been in the hospital there had been a big snow/ice storm and the temperature was in the single digits when Aaron left the night before...what if he didn't make it home!! In a panic I text messaged him to see if he was awake, and alive. It was 5:30. He called me immediately. HE has woken up gripped with fear, what if something had happened to the baby over night? He didn't have the hospital's phone number so he couldn't check. Well, he was safe, I was safe, the baby was safe.

It was Valentine's Day.