Siblings and a couple updates

First, a couple more details on the procedure in the morning - the stent that they plan to put in to keep that hole (ductus arteriosis) open needs to be a certain size and the prostaglandin (PGE - the drug that keeps it open for now) keeps the hole open too big so they need to take her off PGE for a number of hours before the catheter surgery tomorrow so that the hole closes just enough for them to put the stent in (so it can close on the stent and hold it there). So in preparation for this they took her off PGE yesterday for about 10 hours and monitored her by ultrasound to see how fast the hole closes for her (normally takes 24-48 hours for the hole to close entirely). She did great and they got a good feel for how fast her hole would close so they now know how far in advance to turn off the drug before surgery (actually, they just turned the PGE off a couple hours ago in prep for the procedure in the morning).

Also, there are special veins surrounding the heart called coronaries which normally receive blood from the flow out of the left ventricle. Sometimes with Pulmonary Atresia, the pressure in the right heart causes some blood to go into these coronaries from the right heart – which is ok as long as there is blood coming from the left heart too - but if those coronaries close off to the left heart and become dependent on the right heart for the blood, then they need to leave the pressure in the right heart and cannot open the pulmonary valve as planned. So the very first thing they will do once they are in there with the cath is to check the coronaries using a special die to ensure that blood is coming from the left heart to those coronaries. They are pretty confident from the ultrasounds that there is no block from the left heart but they need to make sure for sure.

Ok now on to siblings.

The rest of the kids got to meet Shelby over the past couple days. There is a unique kind of excitement when siblings get to meet. Do you think Lyla is excited about finally having a sister!?

Showing them how this all works.

Only 2 could come up to the CTICU at a time and we love it that way because the siblings got to introduce each other to Shelby. The excitement to show their siblings their sibling was outrageous. Here’s McKay teaching his bro the details of the heart. You really should see the video of this (Cubby then tried to do the same with Bennett but Bennett was not quite as attentive:)).

When Bennett came in, I asked “where’s the baby” and he quickly pointed to Kristi’s belly. “Nope, look around and see if you can see her.” His eyes gaze around the room and the moment he spots her he just lights up! Kristi caught his face below at that exact moment.

Also, she can wink. She’s kind of advanced.

Introducing Shelby Grace Eyre!

She made it!! And I LOVE this first picture, blurry and all. Lots of helping hands, seen and unseen surrounding her. Shelby Grace. 7lbs 12 oz 21 inches long.

Ok now rewind and here’s the play by play in pictures so far:

APRIL 23, 2014 Sometime mid day - Kristi with her Momma getting ready to head in.

8:00 PM - Headed into the hospital with Susan and Scott for the scheduled induction (can’t believe Shelby held on that long but super glad she did!)

9:15 PM - All hooked up and ready to go. All calm. Now the action begins.

9:30 PM – Just chillin’ listening to the baby’s heartbeat. Kristi coughs and it makes the heartbeat monitor make a loud noise – scares the poop out of Susan who jumps almost out of the chair. We all start laughing our heads off and Kristi’s jolly belly is bouncing away and in that moment Kristi proclaims “my water just broke!” With the last 3 births, the water breaking brought fast and furious labor so we took deep breaths and expected things to go fast!

9:30 PM – 6:00 AM – No labor starting so they gave a little prostaglandin and we talked and watched the heart rate and contractions on the monitors until 3AM thinking things would pick up. Things were moving slowly so we all went to sleep.

12:00AM – HAPPY 10 YEAR ANNAVERSARY! What a way to celebrate 10 years married to the greatest woman alive!

APRIL 24, 6:30AM – turns out Kristi’s water only partially broke, and there was still enough fluid that the baby was not moving into position. This was a huge blessing because the ideal time for her to be born was in the morning so that all the specialists would be there ready to go. The doctors broke the rest of the water and WHAM! Full on labor. She was dilated to a 3/4 at that time and within 30 minutes or so she was at an 8! At that same time the epidural was wearing off and Kristi was handling it all the pain like a super champ. Not just a champ – a super champ.

7:50 AM – Fully dilated and ready to push! Several NICU and heart specialists needed to be there at birth (to take care of her and test her and get her into a stable situation as soon as she was born) and the regular delivery room was not big enough for everyone, so they whisked us into the operating room. Big plus – I got to wear this special jumpsuit.

8:10 AM – SHE’S HERE!!! She comes out with a big healthy cry right off the bat and is immediately taken to the other side of the room and surrounded by NICU doctors and cardiac specialists.

 

8:10-8:17 – Check breathing, insert oxygen tube, weight, temperature, and lots more. 7lbs 12oz 21 inches! Intense time and everything is going well.

8:17 – Off to the NICU down the hall where they hook up all kinds of monitors.

8:20 AM - Set up a special IV in her hand and in her umbilical cord to give her a special drug that will keep a hole in her heart open to allow for enough oxygen to the lungs. The doctors are awesome about keeping me posted and answering my questions and once all is connected, the doctor looks me straight in the eye and tells me that she is doing very well and outperforming expectations. I feel a flow of gratitude for all the prayers being said on her behalf.

8:30 AM – I head back to check on Kristi who is full to the brim of mother love, and filled with this special kind of relief and gratitude to have her baby here safe and doing well. In awe of this beautiful baby.

9:30 AM – They wheel Kristi in to the NICU to be able to touch Shelby for the first time and hang out with her for a few minutes.

Grandma and Grandpa peek in through the window of the NICU (the staff was awesome to turn her bed so that they could see her.

10:30 AM – The Children’s Hospital of LA (CHLA) transport team arrives to prepare Shelby for the transport. They put her in a special incubator on wheels.

11:00 AM – The transport team brings Shelby to Kristi’s room so she can say bye for the day and my Mom and Dad arrive just in time to see Shelby before the transfer. My Dad and Scott join me in giving Shelby a special blessing. Monitors go off during the first part of the blessing so we decide to finish at the other hospital.

11:30 AM – Out the door, Shelby get’s her first sunlight, and into the ambulance.

In the ambulance for the 50 yard ride to the other hospital.

12:30 – All settled into the new surroundings at the CTICU at CHLA. We finish the blessing and I am in awe of what a special little girl this is.

Throughout the afternoon – special echocardiograms are performed on her heart and all other tests are coming back with good results (everything was tested to be sure there were no other issues in addition to her heart condition)

Brain ultrasound

Once all is settled with Shelby, I head over to check on Kristi next door who is doing fantastic and her parents have been taking such good care of her.

9:00 PM – Back to CHLA where I meet with the doctors to discuss the findings from the echocardiogram and other tests. The doctors explained that after close examination of Shelby’s tests and ultrasounds, the recommendation is to perform a catheter surgery on Monday where they plan to go into her heart through a vein to attempt to balloon open the pulmonary valve and place a special stent in her ductus arteriosis to keep it open for additional blood flow (this is the hole that is currently being kept open by the special drug called prostaglandin and the stent is like a tube that will keep it open without the drug after the procedure). Isn't that crazy that it is even possible to do such a thing!? Shelby's heart is the size of a walnut. Opening the pulmonary valve would give her the possibility of growing the right ventricle over time so that it can become more and more useful. If successful, this would allow her to skip open chest surgery at least for now.

As with any special medical procedure, there are several risks to this but they have a high degree of confidence that everything will go smoothly. The person who would be performing the the catheterization is one of the best in the world and has a lot of experience.

One of the alternatives to this route is open chest surgery right off the bat to insert a stent like described above or a shunt that would allow the blood to be pumped from the left heart to the body and the lungs. There are pros and cons to open chest surgery as well but we think the pros of the catheterization right now with Shelby's particular situation outweigh the cons. Her catheter surgery is scheduled for Monday morning. We feel so grateful to God for all these amazing doctors and medical machines that make this all possible.

9:30 PM – back over to Presbyterian hospital to be with Kristi and celebrate our anniversary. Nothing more romantic than flowers bought from a flower vending machine in the hospital lobby to celebrate 10 years right!? Definitely an anniversary we will never forget!

 

What a day!

It’s been 2 days now and there are more pictures to post including McKay and Lyla’s first meeting but I couldn’t resist ending with this picture form today. After 2 days we got to hold Shelby for the first time and here is the first hold by Momma. I gotta be honest, this one makes me cry. These are GOOD girls.

Still waiting...

But we got some special visitors today. It gets a little lonely up here when I'm so used to being with these guys everyday. I'll tell you what though, when they show up the energy levels spike about a hundred fold and we are right back where we left them. I don't know how Noah's parents are surviving at our house but they are. With flying colors. They are so kind to stay with the kids while we are in this holding pattern. And they make us think that they wouldn't rather be doing anything else. Ha! It's such a great feeling to know that our kids are in the hands of those that love them so much. 

This picture is in front of both the delivery hospital and the children's hospital where we'll be. They are smack dab right next door to each other.   

We took the kids to the tar pits today while Noah's parents went on a hot date to celebrate Grammie's 40th birthday. The kids were pretty fascinated by the whole finding fossils in tar thing. I made sure I got a profile shot of my belly in this picture. That little girl is getting big! Also, optional pants and miss matched flops are a norm in our family these days. I'll take it.

Bennett was a little scared to get in this picture.

Another family shot because why not. Even if it's a lot blurry.  

Aaaaand one more. 

We cannot wait to love this little girl in person. 

In LA

Noah here. Welp, we had our final round of pre-birth appointments today and we are staying here near the hospital waiting for this little angel to arrive. The induction date is set for the 23rd and Kristi is 3cm dilated and 50% effaced (which is no big surprise on #5 so she could stay like that for a while). With the possibility of  labor any time (and likely a fast labor) we are staying here close by the hospital and my magnificent parents are at our home taking care of the other kids (who are elated to be spending time with their Grammie and Grandfather). We continue to feel a tremendous amount of peace in the midst of all this craziness. The prayers and thoughts of so many loved ones is really quote overwhelming. The outpouring of love for this little girl is powerful. Thank you! We are so excited for her to arrive! Much more detail to come! And to be honest I am pretty hopeful she hangs out inside mom for a few more days because it is pretty rad to have Kristi all to myself for a bit! The woman is a wonder.

We are not alone

I forgot to mention something. And it's pretty amazing. One thing the doctor gave to us as he was sharing the news was a couple of websites to look into of others who have been through similar experiences with congenital heart defects-CHDs.  So I went home and you better believe I checked them out. It took a couple of days to get access but it was strengthening to read the stories of some of these families.  More about this later.

I also reached out to a dear friend who has been through much. Her perspective is inspiring. One of the things she shared with me was this- "God has the power and inclination to make incredibly difficult things, absolutely beautiful."

I believe that to be true. 

After we updated our families with the news my mother-in-law responded and attached this incredibly moving painting by Brian Kershisnik. 

It brought us to tears.

We so appreciate all the support we have felt so far from family, friends and even total strangers and find so much comfort knowing that we aren't going through this alone.

Our Baby Girl

Well I've got some good news and some interesting-not-so-good-depending- on-my-outlook-for-the-day news.

Good news first. We are resurrecting the blog!

Other news takes a bit more to explain.

I want to have the details for our records but if you want to skip along, the bottom line or the diagnosis is bolded. Much had happened since I last wrote this though so I'll get back on with those updates later.

Two days before we moved from San Diego Noah and I were thrilled to meet up together at the OB's office for the 20 week anatomy scan. The scan started and our eyes were glued to the flat screen hanging on the wall.  I don't care how many times I see an ultrasound I will never get over how incredible it is to be able to see those tiny little babies developing their perfect little bodies! Absolutely beautiful! We had been told a couple weeks earlier from the doctor that he's 75% sure that the baby was a girl. But, I thought Lyla was a boy for the longest time so I was not convinced at 75%. Well, that day she left no question about it and we got a 100% confirmation that we do have a little girl in there! We couldn't be more thrilled! The kids too! Especially Lyla!  

Everything was looking great as the technician scanned her from head to toe. Then he came to her heart and zoomed in. As the heart came up I remember my eyebrows involuntarily begin to lower and my eyes started to quint trying to focus on each chamber. I could clearly see three chambers and every now and then I'd notice the fourth one pop up and down. This looked peculiar to me so I asked out loud, "Are there 4 chambers in there?" The technician assured me there were and so I thought to myself "Well, you don't have a trained eye for this so don't let yourself worry." So I didn't.

 Once we finished up in there we waited to talk with the doctor and he said "everything looks great! She is growing right on track. Congratulations on your baby girl." Then he said "Oh, the tech did mention one thing. Her heart seemed to be a bit enlarged but it looks proportionately enlarged so there isn't anything to worry about but you may want to go ahead and check it out just so that you can have a peace of mind."  He didn't know of any doctors in orange county where we were moving to connect us to so we thanked him for his care grabbed our records and went home.    

Hmmmm?! What? 

At that point we didn't really worry about it. Too much was on our minds. After all, we had just heard a strong solid heart beat and she was moving around like every happy and healthy baby does in there. But when we got home I started to visualize the heart that I saw on the sonogram. Her heart. Our baby girl's heart.  I suddenly couldn't erase the images from my mind. Enlarged? Were there four chambers? I wanted some answers so naturally I went...to the internet. :) I saw some images that I thought may have matched the ones in my head and felt that something was not quite right with her right ventricle. After that I hit a wall of confusion and decided to close the computer and just find a dr as soon as we could to check this out for real once we moved. 

Fast forward a few weeks of moving bliss in conjunction with Noah's 1st semester finals, Christmas joy, spectacular visitors, an unforgettable milestone baptism, and I found myself back at a new OB's office waiting and waiting and waiting  and waiting to get called back. Three total hours was I there and no ultra-sound of her heart to prove it. He wanted to see us back in a week to "check out this baby's heart."

So back we went. I was 24 weeks along. It was January 15th. Noah was with me this time (so were Cubby and Bennett- they made things extra exciting!) We were antsy and anxious to get some answers. 

Long story a little less long…we were called back and during the scan, the technician called for the doctor to come in, he looked at the screen, squeezed my left arm and then they prepared a room for us to talk in. We were told that she does have a smaller than normal right ventricle and got referred to a perinatologist. He said- don't worry yet. She'll check things out and if she refers you somewhere else then you'll know there is something to worry about.  

Yikes!

Still so many unanswered questions. The wait continued. The internet search resumed.

I went home and looked for anything to do with a small right ventricle. Or a hypoplastic right heart. But unfortunately, the internet is not a place of comfort in a time like this.   

After meeting with the perinatologist (the next day on Jan 16th) we found out a bit more and left with two possible diagnoses (1. Hypoplastic Right Heart (HRH) or 2. Epstein's anomaly)  and a referral to another specialist. Worry. This time a pediatric cardiologist. But we knew there was something really wrong when the dr there kept casually throwing out words like "major heart defect" and "I don't see the blood able to flow to her lungs" and  "I am not qualified for this type of condition."

The unknown was driving us crazy.

What does this mean?

Will our baby girl make it through this?

If she does will she be ok?

On Jan 17th, we got an appointment to see the pediatric cardiologist. It was the next day but it felt more like an eternity. I called Noah during one of his classes in San Diego to tell him we got an appointment and he left school early to meet me at the doctor's office in the city of Orange. 

I kept watching the door to see Noah walk in.

Then there we were. 

Sitting side by side. 

Waiting to be called back and praying for some answers. 

I was the only pregnant person in the waiting room. I kept thinking, What are we doing here? We shouldn't be here? Noah should be at school. I should be picking our other kids up from school. Is this a dream? 

We got called back and had about a 45 min echocardiogram done with the technician and the cardiologist in there with no insight into what they were seeing. They kept switching who was controlling the wand and the machine. They seemed a bit frustrated.  I kept probing for answers. Anything at all. But they kept saying, "just hold tight. We just need to take a series of pictures and we will explain everything to you."  

We finished up and got put in a room to finally go over everything with the cardiologist.

He wouldn't look at me. Only at Noah. Is he nervous to face the mother?  

He started slowly and in a very concerned tone "we are looking at a very rare, very serious heart defect." He went on and on explaining what that was. He wasn't very optimistic. Is that just his personality? He still wouldn't look at me. Even when I asked most of the questions. Was I just being defensive? I tried not to let that bother me and tried to soak in every word he said making notes of the foreign words and medical terms so we could go home and look further into it. He gave us a firm diagnosis. She has Pulmonary Atresia with an intact ventricular septum (PA/IVS) along with or which is causing Hypoplastic Right Heart Syndrome (HRHS) and a leaky tricuspid valve. There is no way for her blood to get to her lungs and give her body the oxygen she will need to survive after she is born. He mapped out different surgeries she would need throughout her life. One almost immediately after birth. Another one when she is 2-4 months old. Another one when she is 2-3 years old.  Then they would monitor her and go from there. I was scared. My heart ached. I kept looking at Noah thinking how grateful I am that I have him to fight and journey on this journey with. The dr apologized that we had to meet under these circumstances and gave us a card to a surgeon and we went on our way. 

The drive home was sobering. I was following Noah in the car in front of me. I was alone with my thoughts. Tears started flowing. I felt so much.    

The whole week was pretty sobering. I have cried me many rivers but I have also had some incredible spiritual experiences already. God knows us. He is in the details. He loves this little girl probably more than we do (if that's even possible). We don't know what the future holds but we do know that we are incredibly blessed to have this sweet perfect little girl come join our family. She is strong. I can feel it. She has a strong heart. Even though it will need help physically her heart is strong. She'll have a tough battle ahead but I know miracles happen with God's help, great doctors, and a lot of prayers. 

So please pray. 

Pray that Noah and I can have the strength and inspiration we need as we seek out answers to the list of questions we have and to find the right team of doctors to help. And that we can have the strength and wisdom to raise these other 4 healthy children.

Pray for the doctors who will operate and work with this precious baby throughout her life. 

And please pray for this little girl to fight! Fight to fulfill whatever purpose she is being sent here to fulfill. 

We'll be here with further updates. 

Talnita Came to Town

And boy did we have fun with them.