Picture Memories

Kate greets the world! 

Born Friday, September 28, 2012 at 6:01 pm

Weighed 5lbs, 5oz

Proud mommy and sweet baby girl just after delivery.

Daddy-Daughter time...songs and stories

Snuggles, lullabies and a sweet goodbye...

Rock-A-Bye Sweet Baby Kate

It is with shattered hearts, but with hearts full of a loving peace, we share with you the passing of our Sweet Kate.  She graced this earth for nearly 26 hours departing it at 7:54 pm.  Her passing was peaceful.  She was wrapped in her cozy blanket snuggled in our arms when she took her last breaths.

We were/are so blessed to be her parents!  I have never seen such a tiny, new person have such an impact on so many.

We love you Kate and look forward to the day we see you and wrap you in our arms again!

Thank you all for your outpouring of love, support and prayers.
Every single one of them was felt to the fullest.

All our love,
Matt, Betsy, the Boys and Sweet Kate

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

We just welcomed Baby Kate - the fifth member of our family!

We got to see her as they were taking her away to her first brain surgery - she is the most beautiful girl - tons of hair!

We'll know how the first surgery goes in 15 minutes to 2 hours.  It will be the longest wait of our lives.

Please keep us in your thoughts and prayers.

Here we go...

Today we had our appointment at 11am with the Perinatal specialist. She noted that Kate's situation had deteriorated since Tuesday. She has begun to develop hydrops and fluid in the abdomen.  Her heart and the left ventricle in her brain are both noticeably larger.  This is a sign of increased pressure in the brain.

The perinatal specialist Dr. Drake immediately called our team of doctors in Iowa City. It was determined the best course of action would be for us to drive to Iowa City immediately with a potential delivery this afternoon or tonight.

Today we got to see Kate in the ultrasound again.  She was very active, she's got big cheeks like Benjamin, cute pouty lips, and tons of hair!  She continues to score well on her biophysical tests, and we hope this is a sign that she has the strength she needs to pull through what's ahead.

When we think about the enlarged size of Kate's heart we can't help but think about the Grinch. His heart was enlarged because of love... While we know there is a medical reason for Kate's enlarged heart, we like to think it is partly because she is such a loved little girl and she has so much love waiting to radiate to us and those around her.

We are on our way right now... Please keep us in your thoughts and prayers!

Our Journeys Beginning...

So here we are in Bloggers world...  There are so many people that we want to make updates and information available to that keeping up with sending emails to the mass of people was becoming impossible.  In the coming days/weeks/months we will use this blog to share updates, information and stories on Baby Kate's situation and the happenings of our family.  

The message below is the latest email that was sent on Thursday, September 27th.  More posts will come as Matt and I are able to write them and updates with Kate's situation become available.

Hey Everyone, 

We wanted to updated you after our day in Iowa City at the University of Iowa Hospital.  It was a marathon day -- leaving our house at 5:30 am and returning home at 7:00 pm with non-stop testing and doctors visits from 8:00 - 5:00.

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If you did not receive the initial email we sent out yesterday, here is a super brief update...

Tuesday I went in for a routine OB appointment during which they wanted do a quick ultrasound to check the amount of my amniotic fluid.  With both of the boy's pregnancies I carried excess amniotic fluid and wasn't showing clear signs of doing that with this pregnancy.  An ultrasound at 34 weeks is not routine and many docs likely would not have been interested in the fluid levels since I am measuring on-track for normal fetal growth.  

Thank God they did the ultrasound!  They noticed Kate's heart was enlarged and that there was some abnormal vascular activity in her brain.  I was immediately walked over to a perinatal specialists office who did another ultrasound and told us that Kate has a very rare aneurysm in her brain called the Vein of Galen Malformation.  The odds of this malformation is 1 in 100,000 to 1 in 1,000,000 and given the size of Kate's aneurysm we're on the 1 in 1,000,000 range.  We were immediately referred to the University of Iowa Hospital which is where we spent yesterday...

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Our first stop of the day with with Maternal Fetal Medicine (High-Risk OBs).  They performed an ultrasound to confirm the findings of the previous day, observe the aneurysm and check the situation of her heart condition and general blood flow levels.  Their feedback was that they were very concerned by what they saw and are first and foremost focusing on the condition of her heart.  Any type of fluid around the heart can quickly lead to congestive heart failure (called hydrops) and can very negatively affect the situation and Kate's outcome.  We left this appointment with a feeling of urgency that the doctors may decide Kate needs to be delivered in a matter of days...not the weeks were thinking/hoping for.

From maternal fetal medicine we were sent to a pediatric cardiologist who performed an echo cardiogram to take a  detailed look at the current condition of Kate's heart. 

(The cardiologist commented on the number of ultrasounds I had had in the past 24 hours...I told him I was fairly certain I could make it to the end of a dry slip-n-slide with the vast amounts of "goop" that had been smeared on my belly in the past day!--It's a challenge, but we're trying to outnumber tears with smiles.)

The peds cardiologist was a super nice guy and gave us a relatively positive report.  Structurally Kate's heart is normal...it is just about twice the size it should be because it is having to work so hard to circulate blood to and from the aneurysm in her brain.  When/If we can repair this problem and avoid any other complications it is expected that Kate's heart will either shrink to back to it's normal size with the release of the pressure or that she will grow into it -- maybe even in the first 6 months to year of her life.  The doctor did not see any leaks in the valves due to the size of heart or any other seriously alarming signs of the immediate onset of hydrops (fluid around the heart) so his concern of an immediate onset of heart failure decreased.  He decided that very close monitoring was the best course of action at this time and that we just MIGHT get a few more weeks in utero for Kate to grow and mature her lungs.  We left this appointment on a high!

From there we were seen by a neonatologist who will be in charge of Kate's care after she is born.  His visit was sobering.  He reminded us how rare this malformation was and how complicated the entire situation is to manage and treat.  He clearly informed us that when Kate is born she will be in NICU Bay 1 which is reserved for the sickest babies in the hospital.  Should everything go well in the first 24-48 hours after she is born we are looking at least a number of weeks in the NICU (hopefully not months).  During this appointment we were also assigned and met a social worker who will manage our case and provided us with some good resources as we begin this journey.

Our last stop of the day was back in the maternal fetal medicine ward for a wrap-up with our high-risk OB (Dr. Krupp).  She had been on the phone gathering results from our team all afternoon.  The team is not yet in consensus on the best time Kate should be delivered.  They will continue reviewing the case today and tomorrow and hopefully come to a consensus...if not, they will present us with options on Monday when we are back in Iowa City and we will go from there.  (Dr. Krupp did mentioned that after their discussion, the cardiologist thinks we are looking at a week...MAYBE two before she will need to be delivered so I guess we will be meeting our baby girl sooner rather than later.)  

Dr. Krupp had also been in touch in the neuro department.  The specialist that will be performing Kate's surgery is an Interventional Radiologist. (This type of abnormality is typically no longer treated by Neurosurgeons who do invasive brain surgery -- instead, most often catheterization is used to conduct an embollization which will stop the irregular blood flow in the brain.)  

It is certain that Kate will be delivered by C-section.  The entire team will be in the room for delivery and depending on her condition, she will likely be taken immediately by the Interventional Radiologist and Peds Cardiologist for surgery.  The plan is to cut the umbilical cord long and use that to snake the catheter to her brain.  Kate's aneurysm is large...we got the impression it may be one of the largest the team has seen.  They will not be able to treat it with one procedure so the radiologist will insert one emboli and the cardiologist will then immediately check her heart function (apparently she may experience some relief immediately).  This will be repeated as necessary (and as able).  

At this point we were told very frankly of the severity of the situation and procedure.  If there are no other respiratory or cardiac complications when she is born they are giving Kate a 50% chance of survival.  We are hoping, praying and having faith that we will be on the right side of that coin flip!

Where we go from here...

Yesterday the docs gave me a the first of two steroid shots to boost Kate's lungs development and prepare her for a likely pre-term delivery.  I have appointments today in Des Moines for an NST (non-stress test) to monitor Kate's movement and heart rate as well as the second steroid injection.  Tomorrow I go back to the perinatal specialist (in Des Moines) for an ultrasound to monitor the function and fluid levels around her heart.  Monday we are back in Iowa City for another ultrasound, echo cardiogram, meeting with the high risk department and meeting with our entire team of specialists.  *(With all of the ultrasounds Kate has had already we have dubbed her "our most photographed child"  which is hard to beat given the number of photos we have of our boys!)

Matt and I have been told to pack our bags now as any day, and any trip to Iowa City could be delivery day.  

As scary as this situation is we also have found so many blessings:

--We found this early!  The size of the aneurysm is such that had it gone undetected it very likely may have ended Kate's life before she was born and potentially soon after she was born.  At least now we have a great team in place, have a plan and Kate has a chance!

--University of Iowa is one of only a very small handful of hospitals (like four) to which patients are referred for a situation like this...we feel like we are in the right place with the right people!

--Friends and family have been coming out of the woodwork with love and offers of help!  *(Special thanks to Claire and Michelle who helped out in our clutch situation with the boys on Wednesday!  We, and they love you both!) 

We feel so loved, and while we're not quite sure what we need right now, we will need you whatever Kate's outcome is.  It will be tough either way.

Thank you for your thoughts, prayers and for being the special people you are to us,

Much love,

Matt, Betsy, the Boys and Kate