Update on Momma/New Baby

In order to avoid undue anxiety to you I'll start by letting you know things are going well with this pregnancy.

This pretty much means that every time I freak out I am just being paranoid. And thank goodness for that. I'd much rather be a crazy paranoid freak than right! We have about four weeks to go until we get to the gestation Tessa was when she was born. Thats not too long...right? I thought that at 20 weeks and that week was incredibly long, every twinge, pull and ache made me scurry for a drink of water and a couch to lay on. However since then I've calmed just a bit and this week is going by better. Of course I had two ultrasounds this week, so that helps...{embarrassed laugh}

I also had my bishop give me a blessing this week and I'm assuming that has had a lot to do with the reduction of my anxiety.

Aaron suggested that I ask for your help. We definitely know that prayers have power, so if you are willing we'd appreciate your positive thoughts and prayers that this pregnancy goes full term.

I've tried not to write too much about this over the past 22 weeks - but I can assure you, you'll hear a jubilant yippee in blogdom when we get to 26w2d! And every week after that.

Oh - and just in case you are rabidly curious...here is a "belly shot"* taken at 20 weeks.

*geez...you have to put aside a lot of pride to post one of these, don't you.

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.

"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.