Welcome To Holland-Sept 18, 2011

On September 15th Katy and Andy found out that Baby Jacob has a life-threatening condition called Congenital Diaphragmatic Hernia (CDH). CDH is a condition in which a hole in the diaphragm, or in Jacob's case an undeveloped diaphragm, allows abdominal organs to move into the chest and restrict lung development. It is also squishing his heart and the aorta. We are so blessed to have found this out now or Baby Jacob would have died at birth.


They are going to be getting further diagnosis at UW, possibly a fetal MRI, and later delivering @ UW Hospital in Seattle. Shortly after birth, if needed, Jacob will be put on a ECMO (Extracorporeal Membrane Oxygenation) device, a temporary bypass technique used to oxygenate the blood and allow the lungs to rest and develop. Luckily, Seattle is one of a few places that has the device.


They aren't sure what to expect in the future days/weeks, but their perinatologist says they are in the best of hands. Both UW Hospital & Seattle Children's are renowned for their pediatric care. Thank you to everyone who has already begun praying, and everyone who will now. Baby Jacob is blessed to have all of you thinking and praying for him.


Here is a very informative site describing Jacob's problems, prognosis, and what to expect in the upcoming weeks/months:


http://pedsinreview.aappublications.org/content/20/10/e67.full


A Facebook Posting From Debbie, Katy's mom:

About 10 days ago we suspected there may be something wrong with Baby Jacob.  Katy was scared and asked what we were going to do if it was something really bad.  I sent her the email printed below but I really believed that the baby would only need a small surgery and all would be fine.  Tests have revealed that Jacob can't live without immediate and extreme measures.  As it seems, we are going to "Holland" unless God, in His infinite mercy will reroute us to "Italy".  As you can imagine, we drift between denial and terrifying reality.

It is clear that financial resources far exceeding all our family's and extended family's will be needed to care for Baby Jacob.  I hope I will be able to open a fund at Bank of America for people to donate.  I will post the information as soon as possible.

Below is the email "Welcome to Holland" I sent to Katy on September 8th and her response:

From: djcountry77@hotmail.com

To: krondeau88@hotmail.com

Subject: Welcome to Holland

Date: Thu, 8 Sep 2011 04:37:18 -0700

Welcome to Holland

I am often asked to describe the experience of raising

a child with a disability--to try to help people who

have not shared that unique experience to understand

it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning

a fabulous vacation trip--to Italy. You buy a bunch

of guidebooks and make your wonderful plans. The

Coliseum, the Michelangelo David, the gondolas in

Venice. You may learn some handy phrases in Italian.

It's all very exciting.

After months of eager anticipation, the day finally

arrives. You pack your bags and off you go. Several

hours later, the plane lands, the stewardess comes in

and says "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland? I

signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've

landed in Holland and there you must stay.

The important thing is that they haven't taken you to

a horrible, disgusting, filthy place, full of

pestilence, famine and disease. It's just a different

place.

So you must go out and buy new guidebooks. And you

must learn a whole new language. And you will meet a

whole new group of people you would have never met.

It's just a different place. It's slower-paced than

Italy, less flashy than Italy. But after you've been

there for a while and you catch your breath, you look

around, and you begin to notice that Holland has

windmills, Holland has tulips, Holland even has

Rembrandts.

But everyone you know is busy coming and going from

Italy, and they're all bragging about what a wonderful

time they had there. And for the rest of your life,

you will say, "Yes, that's where I was supposed to go.

That's what I had planned."

The pain of that will never, ever, ever go away,

because the loss of that dream is a very significant

loss.

But if you spend your life mourning the fact that you

didn't get to Italy, you may never be free to enjoy

the very special, the very lovely things about

Holland.

-Written by Emily Perl Kingsley

I have remembered this story from many, many years ago.  It made an impression on me.  I wanted to share it with you.

Katy, I don't think you're going to Holland but you asked what we would do if you did.  We would go with you, stick together, find our way together and discover many beautiful things about Holland.  God would never let you arrive there if you couldn't navigate through it.  He would walk with you all the years of your life.

Katy's response on September 8th: "Thanks, Mom. It's wonderful to have such a supportive family. I'm thankful to have visited Italy, and I just hope Holland isn't on God's itinerary for me."

So Many Questions...

Sept 20, 2011 -I wanted to update everyone and thank you for your continued prayers. Tomorrow, Andy and Katy will be meeting with a team of doctors at UW to get a better idea of Baby Jacob's condition. They will also learn more about the treatment at delivery and after birth among many other things. We will update everyone tomorrow. 

Psalm 139:13-16
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Getting Acquainted

Update from Andy....

Sept 22, 2011 -Yesterday we spent 5 hours with the team of doctors at UW. Katy had another ultrasound confirming that Jacob's CDH is on the right side. This only occurs in about 10% of CDH cases and can be more critical than left-sided CDH. It was a little nerve wracking when a team of 3 radiologists were brought in to look more closely. One piece of good news-We were able to see the left lung elongated today, but the right one was virtually nonexistent because it was being squished by the liver. It appears that Jacob's organs are able to shift in and out of his chest cavity which is a good thing if it has allowed his lungs to elongate to grow and mature at times. This is our hope. 

We had a lot of our questions answered and mapped out the first stages of a birth plan. If all goes well and Katy can remain pregnant, Jacob will be delivered around October 28th or so. Jacob's prognosis really won't be able to be determined until he is born since every case of CDH is different and every baby's body manages the related effects differently. We just have to hope and continue to pray for the best.

Thank you, everyone, for your continued prayers and support!

Blessings All Around

Update from Katy...


Sept 25, 2011 -On Friday we saw the cardiologist and Jacob had and echocardiogram. It is VERY common for CDH babies to have heart defects, some that are fatal. Jacob's heart looks completely normal! At this stage of development it can be very difficult to see the heart since the rib bones have already started to calcify, but the doctor said she was able to get really good pictures of Jacob's heart. This makes it easier for her to make a determination on the function and health of the heart. She was very confident that his heart is fine and normal! : ) He will get another echo within a couple of days after birth just to make sure 
nothing was missed since his heart is squished and not so easily seen.


Also, someone anonymously paid Landon's Pre-K tuition!  What a sweet blessing that is for our family during this crisis. Thank you from the bottom of our hearts!

A Change of Plans

Update from Andy & Katy

Oct 6, 2011 -Today we met again with UW medical staff to discuss Jacob's birth plan. It continues to be a "when Jacob is born we'll know what we're up against" plan. However, the neonatologist informed us of the spectrum of possible expectations. He believes Jacob will fall somewhere in the middle of best/worst case scenarios. He was wonderful at answering our many questions and further educating us on the medical history and care of CDH babies and the most recent developments in neonate care.

Following the neonatologist appointment, we met with Katy's OB/GYN. She is concerned that Katy won't make it to our original plan of delivering on the 28th. Katy is already dilated @ 3 cm. If Katy continues to dilate to 4-5 cm by next Wednesday's appointment, she will be admitted to UW Hospital.

Katy's current status, history of quick dilation and delivery, on top of her excess of amniotic fluid and contractions, led to a change in plans. Our current plan is delivery on the 21st. On that day, an aminocentesis will be done first to ensure Jacob's lung tissue is mature enough for ventilation. Katy will be 38 weeks along at that time.

Thank you to everyone for you love, support, and most especially your prayers. Please continue to pray for Katy and Baby Jacob. Pray for Katy to remain pregnant as long as possible to ensure the best possible outcomes for Jacob.

Showing your Love and Support

Oct 19, 2011

Many have asked how they can help or what specifically they should be praying for. Andy's and Katy's friend (who wishes to remain anonymous) sums it up nicely.

An excerpt from the above tab "Words from a Mommy of a CDH Survivor":

I guess what I want to end with, is to tell those people who will love, support, and pray for the Rondeaus as the go on this journey, that it is a ROLLERCOASTER. There are SO many highs and lows with CDH.  They will need to have you celebrate the little successes (like diaper changes or weaning the ventilator settings “just a little”) and they will need tremendous support during their lows (and unfortunately, there will be those lows). They will need prayers, loving thoughts, offers of help, and listening ears. It is horrible feeling to see your child hooked up to SO many things and not being able to do anything to help them.  You lose a sense of time and place, just having to wait and see how they do, each hour of each day and not knowing when there is an end in sight.

Sitting by a NICU bedside hour after hour is exhausting- watching those monitors will become their life, so give them all you have. Love on them, tell them you care, comment on their blog with your wishes of quick healing for Jacob.  Pray for no ECMO, stable days and nights, a repair surgery soon after he is born, lots of lung tissue under all those organs, and peace for Katy and Andy to help make decisions with the team of medical professionals that will be caring for Jacob.

He is risen! Happy Easter! (Jacob's Baptism)

My Cup Runneth Over!

Apr 17, 2012 -Every time I see this picture my heart (and sometimes my eyes) is overflowing with joy. Easter was a milestone day I had been waiting for. Almost half a year has gone by. I had been envisioning the day we would take Jacob to church for the first time for all to see. (We figured it would be an appropriate age and time of year to take him into a crowd seeing as flu season is about done and he is doing quite well.) Life has pulled us away from actually attending Mass and I have been yearning for it. Well, the day didn't quite go as planned. We arrived at church too late to find seats. In fact, we couldn't even get in the doors and returned home. I was so disappointed. I wanted to show off my own little miracle. Oh well, instead I got to enjoy his smile in the sunshine as my other little ones searched Nana and Papa's yard for Easter eggs. I soaked in God's glory in a different way with my beautiful family which I have been so blessed with.

Many have asked if Jacob was ever baptized. He was at UW shortly after being born. Sadly, I could not be there but Andy was. The lasting reminder I had was that Jacob smelling of the holy oils for a couple of weeks because he wasn't getting bathed at the time. It was like his own personal holy cologne reminding us that God's hand was on Jacob. I think that smell will always take me to a different place than most people. The priest didn't give a cut and dry version. He went through the whole ceremony which was strange considering Jacob's condition at the time. It was comforting to Andy that the nurses participated in the ceremony and someone (Andy thinks it was PJ, one of the transport nurses) kept there hand on Andy's shoulder the entire time.

Jacob has been doing so well. He was off his oxygen for a week but had to be put back on because he lost weight that week and the doctors are concerned it is because he is burning too many calories while working harder to breathe. The pulmonologist disagreed but Jacob does have an easier time eating when he's on the oxygen so I'm fine with him back on. (For Easter he was able to take a little break though.)

Today was his first day off the Sildenafil for pulmonary hypertension. If he continues to gain weight, we will take him off oxygen during the day only for about two weeks then do an oximetry study overnight to make sure he is oxygenating well enough during his sleep. If the results are favorable, he will then be taken off oxygen all together.

On Friday, Jacob will have a CAT scan of right lung and a bronchoscopy as well. These will be done under sedation. That's the part I am thankful for but also nervous about. Please keep Jacob in you prayers. I worry about him being scared and in pain. He has terrible separation anxiety as it is and I hate to think of him uncomfortable and feeling abandoned. We will also see his surgeon after the studies so hopefully we will have a better idea of what is going on before the weekend.