Our Journey Continues...Via Roller Coaster

Before too much more time passes I wanted to go back and catch up on some of the details of yesterday's happenings.  This blog is as much a therapeutic journal for Matt and me as it is for delivering information to all of you...I want to make sure I don't leave anything out.

Yesterday morning (Friday) I had yet another appointment for a monitoring ultrasound with our perinatal specialist, Dr. Drake, in Des Moines.  After 30-45 minute scan we met with Dr. Drake who reported that she observed signs of  hydrops (fluid around the heart) and asides (fluid in the abdomen) and that the size of Kate's heart and left ventricle in her brain had both increased.  All of these were alarming and Dr. Drake immediately called our team in Iowa City.  Twenty minutes later we were on our way home to grab our bags and immediately head toward Iowa City and the University Hospital.

For those of you that know my husband and his driving you know that he doesn't set any land-speed records!  Needless to say he handled communications from the passenger seat and I sat behind the wheel driving safely and mostly within legal limits!

We walked through the doors of the hospital at 3:00 pm and when I gave my name to the nurse at the Labor & Delivery desk there was an immediate shout of "they're here!" and people started swarming out of doors...our entire team had been waiting for us to arrive.  We were immediately whisked into a nearby ultrasound room and the team went to work re-scanning Kate.  Within five minutes there was consensus that they saw no new signs of hydrops or asides and that the increased size of Kate's heart and left ventricle were not severe enough to warrant immediate delivery!  They decided to admit us for the weekend to allow for constant monitoring, but wanted me to continue incubating Kate for a little while longer.  Matt and I were thrilled that it looked like many of our fears had been temporarily relieved and we would be able to wait a little while longer to meet our baby girl! 

The team of doctors left the room and the sonographer finished up the final piece of the ultrasound...the biophysical profile (BPP).  BPPs look for and rate baby's movement, tone, flex/extension, at least 30 second of breathing practice, fluid levels, etc.  On Tuesday, Wednesday and Friday mornings Kate had scored 8 out of 8 on all of her BPPs, but yesterday afternoon she scored only 4 out of 8.  After a follow-up non-stress test (NST) they downgraded Kate's score to a 4 out of 10.  With this news the team of doctors came back in (approximately one hour after they had left the ultrasound room) and told us that they had reassessed the situation and decided to deliver Kate immediately.  WHAT A ROLLER COASTER!  Matt and I quickly began signing consent forms and I began prep for a C-section.  

At 6:01 pm Kate was born in a bustling OR (I think we counted nearly 20 people in the room at one point!).  After just a few minutes we heard the glorious sounds of her strong, sweet cry!  We were able to see her for less than a minute in the isolette before they whisked her away to the NICU to stabilize her and prepare her for surgery.  

At about 8:45 pm Kate began her surgical procedure.  (Before he began the surgery, Dr. Hasan, the Interventional Radiologist came in to talk with us briefly.  During our brief discussion we learned that since 1997 there have only been about 10 cases in the U.S. when infants had been taken for this type of procedure  immediately following delivery.  This speaks to just how special Kate is and how serious her situation was.)

After 6+ hours of surgery we were told by Dr. Hasan that with multiple procedures they were able to close off approximately 90% of the malformation in Kate's brain...WOW! That's a lot more than what we expected. During the procedure they overshot the amount of Heparin she needed and a bleed started in her brain. They immediately inserted a cranial catheter to drain and remove the additional pressure caused by the blood & spinal fluid leak.  Dr. Hasan said that the next 24-48 hours would be critical. As long as they can get her bleeding controlled and her labs back where they need to be he was optimistic that the bleed was just a speed bump and she will hopefully recover fully. Right now and through most of the procedure her BP and other vitals were stable...she's a fighter! Dr. Hasan even said that depending on how she does he may go back in within the week to try to completely close off the rest of the vein! In no way did we expect this! We knew she had some work and recovery to do over the next crucial 24-48 hours but we had smiles on our faces! She's definitely a superstar and may just be our miracle baby!!!  Riding the roller coaster...

That was near 3:00 am...

Somewhere around 4:00 am the doctors from the Pediatric ICU began coming in with updates on Kate's situation.  Apparently Kate's bleeding was more severe than we understood and they were having difficulty controlling it.  They were prepping her for a CT Scan to assess the amount of and potential impact of the blood & fluid on Kate's brain.  At this point we were also told that Kate had not made any responsive movements since arriving in the PICU.  This was very alarming and upsetting to both us and the team of doctors.  Matt and I were told we should head up to the PICU as soon as I felt up to it.  

I scrambled out of bed and we made the short trip up one floor to her bedside.  We spent some wonderful time holding her hand, kissing her cheeks, and talking and singing to her.  The trip was physically and emotionally exhausting so we headed back to our room for a break and to allow the team room to continue monitoring her.  

Upon returning to our room Matt and I asked for chaplain and a little while later made a second trip to visit Kate.  We (doctors and nurses included) prayed over her and had her baptized.  The full name we have given her is Katherine Elizabeth Mitchell but we will lovingly call her Kate!

We returned to our room after a very emotional but meaningful visit.  After a mere 15 hours sleep in 4-5 days I succumbed to a few short naps and Matt went back up to spend some time with Kate.  He talked to her for over an hour about how her parents met, told her about her brothers, played her some of their favorite "train songs" and sang to her.  He's such an amazing dad!

While Matt was with Kate the PICU team conducted an EEG to evaluate Kate's brain activity since there had been no responsive movements since her surgery.  When Matt came back downstairs he crawled in bed with me and told me that her EEG results were flat-lined and there was no apparent brain activity.  

The lead doctor in the PICU, Gwen, is an ANGEL and has been nearly as emotional about Kate as we have been.  She has promised to be 100% honest with us at all times and make sure we were aware when in her opinion we had crossed the line of doing things "to" Kate instead of doing things "for" Kate.  She said that Kate's brain would likely "declare" itself one way or another...positively or negatively.  It seemed like we were potentially nearing this point.  

Since that development Matt and I have had many difficult discussions.  We made a call to the Palliative Care team which helps parents and families with quality of life, end of life and grief counseling.  

But wait...

At 12:15 there was a knock on our door and we expected to see the Care Team come in, but instead Gwen and Dr. Hasan (Kate's surgeon) walked through the door.  They told us that in the last hour Kate had opened her eyes with some responsive movement and moved her feet a bit.  They were very serious in warning us not to read too much into these movements as we don't know how meaningful they are, but it is a change in her situation and is therefore a reason to give her more time.  

So continues the roller coaster! We are headed back upstairs to spend some more time with our girl.  Things do not look good, but they are different and potentially better than they were an hour ago.  We are going to continue watching for changes in her situation and trying to understand her quality of life situation.  Please keep the prayers and positive thoughts coming.  Another update will sure follow...

Love to you all,

Matt, Betsy, the Boys and Kate