Jun
01
    
Posted (jooosh) in All Posts on June-1-2007

Tina and I slept solid last night. We needed the rest. Big day today.

We’re meeting the surgeon that will probably be taking care of our little girl. The only reason I say probably is because I had to leave the door open a bit just in case something isn’t right. I’m 95% sure this is our guy, but we still need to see him in person to be sure.

We drive over to the hospital to initially meet with the OBGYN that will be delivering our baby – Dr. Richards. Right from the beginning I felt good about this guy. He was very genuine in his words and had fantastic “bedside manner”. He performed an ultrasound on Tina as well, confirming a lot of what we already knew. He also gave us some more insight into the location of our baby’s organs. He drew us a simple diagram (see picture) that showed what was in the chest, and what remains in the belly. So far so good. No red flags with Dr. Richards. In fact, I’m feeling good that he’ll be the one delivering the baby.

After meeting with him we call to confirm the meeting location with Dr. Kays. Tina and I take the shuttle over to another part of the hospital. Our meeting with Dr. Kays is scheduled for 1pm so we grab a quick bite to eat in the hospital. Fortunately we’re not just limited to the cafeteria due to the fact that there’s also a Wendy’s in the hospital as well. This is a good thing considering how much time we’ll be spending there.

We have trouble locating where to meet the Dr. so we call his assistant. She sends an intern down to direct us to a conference room where we’ll be meeting Dr. Kays. In the room there are a couple magazines on the table. One of them is from the University, highlighting the work of Dr. Kays. I leaf through the article and read this story of a couple that went through almost exactly what we’re going through.

They experienced the hopelessness of a local hospital and didn’t know where to turn. Their hope returned after meeting Dr. Kays. In everything I’ve read about Dr. Kays it seems one of the primary ingredients that he brings that most other Dr. / Hospitals don’t is genuine hope.

At about 1:45pm Dr. Kays comes through the door in the conference room. A little more grey than the picture in the article from 2002, but it’s the same guy nonetheless. We introduce ourselves and Dr. Kays begins to tell us everything we could want to know about our baby girl and her disorder.

He begins with details on the birth defect itself. What it is, and the complications surrounding it. How it occurs, which is still not totally known, and the different levels of severity. I’m incredibly focused on what he’s saying. I only wish I would have had a video camera to capture it all!

He then talks about specifics about our little girl and he lets us know that by the end of our meeting he’ll be able to give us a general idea of our baby’s chances. At least as best as a human can. He also indicates that he’ll be focusing on our baby’s brain as much as her lungs.

He asks for the drawing that Dr. Richards sketched out and for the ultrasound report. Dr. Richards had confirmed that we are looking at a .8 LHR (lung to head ratio), which is severe. This is something the other doctors were able to tell us as well, so this was no surprise. What was a surprise though was how he reacted to that news.

He began to explain that the LHR is just one component that measures the chances of surviving but there are so many other variables involved. This is what makes CDH so challenging because the smallest tweak of a respirator, the timing of giving the proper drugs, knowing if and when to use ECMO, all play into our baby getting better.

Most doctors will treat the baby’s condition in the moment. If the baby is blue, turn up the ventilator to pink up and stabilize the baby. Sounds good at the moment, but when the baby begins to crash again, the ventilator has to be cranked up more. This cycle is deadly and eventually the baby either finally crashes or permanent damage is done to the lungs eventually causing death.

This is one of Dr. Kays major differentiators in that he uses gentle ventilation techniques. Not only that, he is not overly aggressive in his approach. He looks to the future condition of the baby, not just the current state. For example, just because the baby is slightly blue doesn’t mean that the most critical organ, the brain, isn’t receiving enough oxygen. Due to how the arteries branch off the heart, the brain receives first priority for blood, then the rest of the body. This means that you can stress the rest of the organs for a time to get you past those tough humps, without damaging the brain.

Another difference between him and other doctors is his approach to having one person driving the decisions instead of the baby being passed to different doctors for each specialty. Having that single point enables him to make the most educated decision at a moments notice, critical in CDH babies.

I also came to appreciate the fact that Dr. Kays has no ego. It’s not about him diving in there and “fixing” these kids. His approach is to give the baby the best environment he can for survivability and viability.

The success of the above practices and philosophies is affirmed with his patients having a 90% survival rate. And get this, that 90% is skewed considering he typically handles the most severe cases! Think about it. If you have a mild case of CDH and your local doctors say that they can take care of it with almost a 100% mortality rate, why go anywhere else? This is why Dr. Kays sees the most severe conditions of CDH. It’s the people that are given no hope by their local doctors and then search for an answer online and find it in Dr. Kays, who’s incredibly passionate about taking care of these kids.

Dr. Kays spent 3+ hours describing a multitude of scenarios and how he may look to resolve them. He then gave us some quantitative hope. Based on his best guess, he said that our baby girl has a 70-75% chance of survival. He also indicated a 70-75% chance, with no brain damage. Doctors in Colorado gave our baby girl, at best, a 20% chance of survival with no certainty about her quality of life. Wow, that’s a big difference.

At this point, I have no doubts about our commitment to having Dr. Kays take care of our little girl. No red flags here. Just total confirmation that we are making the right decision.

Dr. Kays then went on describing the babies that he’s currently taking care of. Three boys, one with .8 LHR, and two with .6 LHR, .2 less then our baby girl! He wanted us to go up to the NICU to see them. As heavy as this was going to be, we couldn’t say no. I just needed some time to catch my breath before we saw these precious babies.

We headed up to the NICU. He had us wait just inside while he confirmed with the families that it would be ok for us to come over and see them. I’m glad he did because I needed a moment to prepare for this.

Tina and I just stood there taking it in. There were a couple preemie babies that we could see. Wow, so tiny. It’s amazing how small these lives are. Man, it’s hard not to get emotional.

Dr. Kays returns and leads us over to the CDH beds. There we see the first boy hooked up to the ventilator. He was stable and doing well.

The next baby we saw was surrounded by his family. Dr. Kays introduced us to the couple and their two other young children! I can only imagine how hard it would be to go through something like this with two other children to take care of as well. Tina was so overwhelmed with emotion that she couldn’t talk. I was able to squeak out a “Hi” but that was about it.

We then went to see the last baby boy. He just had his breathing tubes removed the day before and he was breathing on his own. This was one of the .6 LHR babies too! Dr. Kays motioned for us to come over closer. What happened next was amazing. That baby totally responded to Dr. Kays voice. No doubt that he spent a lot of time taking care of this baby.

We then met a few of the nurses who would probably be there when we have our baby girl. The whole team was incredibly warm and receptive. Dr. Kays then lead us down to the main lobby area.

On the way, I confirmed to him that is was no accident that we were here. He asked, “What do you mean?” I said that I have no doubt that we are supposed to be here. It’s not about luck, or “bad luck” as the other doctors we saw had put it. I know with every fiber in my being that God is sovereign and in control and that He has a purpose for this. I think my passion took him by surprise a bit, but he affirmed what I said.

I do know that God has a purpose and a plan for this. It’s not for me to know how it’s going to turn out, it’s my job to put all my trust in Him during this tough time.



 
Jun
02
    
Posted (Tina) in All Posts on June-2-2007

Today, we looked for housing in Gainesville. Unfortunately, it was not encouraging. So much of the housing market is geared to students. Plus, they have this tourism tax of 9.25% for any leases that are under 7 months (Florida state law) along with any short term premiums that the apartment community might tack on to the market rent. All the apartment communities that I really liked…did not accommodate short term leases. Even the properties that were not real nice…were still very expensive in my mind. I have 1 possibility that would work well…I just don’t know if they will have any availability. It is a condo conversion and they are still renting out some of the units as short-term furnished rentals. Since there are condos for sale too, the leasing office was not open on the only day we had to visit! Bummer!

It appears that this is going to be a site-unseen type of deal. The only thing we were able to do was locate the areas of town that were nicer and those that were not so nice.



 
Jun
03
    
Posted (Tina) in All Posts on June-3-2007

Yes, I am on the long plane ride home and am catching up on the blog. I am so excited to come home…Northern and Central Florida are not really my cup of tea.

When I arrived home, there was a voicemail message from Dr. Vargas. My blood tests came back fine – – no gestational diabetes!



 
Jun
08
    
Posted (Tina) in All Posts on June-8-2007

So, when we returned from Florida…I called our top choice for housing the very next day on Monday, June 4th.  The people seem very relaxed and do not sense the urgency that I have to make sure we can reserve a unit.  This is a condo conversion that offers short-term, furnished rentals.  It is one of the only places that I can find and has a great location near the hospital.  After calling 2x per day asking for the rental application, they sent it to me last night.  I completed the rental application this morning and called the property to speak to them again.  Proactively, I asked if I could include the security deposit along with the application.  Wow…it is a good thing that I work in the rental housing industry…these people are not real swift!  Anyway, I mailed off the checks and application this afternoon.  They should receive it on Monday and told me it could take up to a week to process.  I really hope this goes through – – if not, I do not have a back-up plan!



 
Jun
09
    
Posted (Tina) in All Posts on June-9-2007

My friend, Jen Cyphers, hosted my first ever baby shower today! It was such a great time. It was a beautiful Denver day and so we spent the party out on her patio overlooking her back yard. It was so good to have the love and support of my friends, to celebrate our baby girl. Everyone was so supportive – – thanks to my friends! I look forward to my shower next weekend being hosted by my sis-in-law, Shannon and her Mom Claudia in Southern California!



 
Jun
14
    
Posted (Tina) in All Posts on June-14-2007

We heard back today that we are approved for a short-term, furnished rental at the community we were targeting! This was a tremendous relief. Again, the leasing staff does not appear to have the same sense of urgency which is a bit frustrating. As I write this update, it has been 5 days since I sent them an email requesting further information (e.g. what is the address? I need this to set up mail forwarding with the Post Office!). Anyway, for now it seems that the housing dilemma has been solved. Also, it is a larger unit which means that we have room for any interested visitors!



 
Jun
16
    
Posted (Tina) in All Posts on June-16-2007

…was today, Saturday, June 16th. There was a tremendous turnout which was really great to see. It gave me a feeling of warmth and support that means so much at a time like this…Being from Southern California, there was a mix of family as well as friends. As you will see from the pictures, Claudia and Shannon hosted this wonderful shower. They both put in countless hours making sure that Claudia’s house was in top-notch order and that every detail was attended to. The food and beverages were delightful and tasty! I had a great time…and our baby girl was given lots of wonderful gifts, gifts that she will need as she makes her entry into the world! Thanks again to everyone who attended in presence and in spirit to celebrate the life of our baby girl. Your support is wonderful!



 
Jun
20
    
Posted (Tina) in All Posts on June-20-2007

I had my pregnancy check-up with Dr. Vargas on Monday, June 18th.  It was so nice to see her in person – – we had not seen each other since Week 13 (nearly 20 weeks ago).  Instead, we have only been able to catch up via phone.  I gave her the update on Florida which perked her interest.  She assured me that everything looked fine pregnancy-wise.  She listened to the heart rate – 150 beats per minute.  And I have gained 15 pounds so far – – not too shabby!

Today, I met with Dr. Galan to check on our baby girl.  Once again, the ultrasound technician verified that “she has lots of hair!”  Last time we met, her growth tracked at the 15th percentile (Since the contents are in her chest, her abdominal cavity always measures smaller than it should at this stage, therefore weighing down the overall percentile).  Anyway, she must be growing because he tracked her at the 32nd percentile today – – that is good.  She appears to be growing well and weighs about 4 pounds.  We have about 7 -8 weeks left for her to bake in my belly.  Hopefully, she will grow a lot over that time!



 
Jun
23
    
Posted (Tina) in All Posts on June-23-2007

Yes, it is hard to tell…but the car in the background is PACKED full of baby items. After 2 baby showers, there were still many needed items for our little girl, so we went for a little spree. Yeah…it was still light out when we walked in the store! And yes, that is more baby items on my lap for the drive home!



 
Jun
26
    
Posted (Tina) in All Posts on June-26-2007

My heart is heavy today. We found out that one of the babies that we saw in the NICU on our visit to Florida is still fighting for his life. He was born May 1st to Tracy & Keith Mitchell (he is their 3rd boy) and has been in the NICU ever since he was born. Josh & I specifically remember meeting this family. Although I was so overwhelmed with emotion and tears, I didn’t really say much during our visit. Please lift up Baby Jonathan in prayer, as Dr.Kays and his team work to repair his lungs and give him a chance at life!