Today was SUCH a fun day! We celebrated Micah’s 2nd birthday a couple days early (just in case his sister decides to rain on his parade and come on Wednesday). Had some friends drive up to a park across the street, and I must say we put together a dang good party last minute. I’ll post pictures when I get some more time. I’ll keep you on the edge of your seat in suspense.

Other good news. My BP’s have been consistently ok. Higher than my normal self, but hey! I’m pregnant. Definitely low for preeclampsia standards. The only issue I’m keeping an eye on is the steady headache. Could be due to the fact that I’m not sleeping in my bed with my special neck pillow… my muscles can be quite sensitive with that stuff. When I stretch, the headache seems to go away. No liver pain, no blurred vision, even my swelling has decreased quite a bit! Could it be that my prior symptoms stemmed from taking care of a toddler, not sleeping, and having a husband who works nights? That would probably raise the blood pressure of most people and cause some kind of underlying headache. Obviously we are still watching out for preeclampsia. BUT if my levels consistently stay within the normal range, and no other issues come up, we would be inclined to cancel or at least delay our induction. We know that it’s an option, and we would take full advantage of that if we find induction completely unnecessary. There have been tons of studies relating inductions/VBAC’s with some pretty terrible outcomes, including a much higher chance of needing a c-section and also higher incidence of uterine rupture. This article sums it up very well if you’re interested: http://www.ican-online.org/vbac/vbac-and-pharmaceutical-induction-help-or-hindrance

We’ll keep ya up to date on our plans as the countdown continues to b-day! In the mean time, here are some random pics we’ve taken since being here. It helps pass the time to keep ourselves entertained.

Keeping on top of the blood pressure

Micah thinks the legs of the table are a ’slide’ and keeps getting stuck!

Already playin with little sis (Excuse my ratty shirt. It’s the only one that fits my belly)

Chele bought him a special hat

Ok back to the whirlwind. It took a couple more hours for them to get my room and intake forms ready, and finally around 2:30am they settled us into our room. Finally some sleep!! And some snacks. I can’t remember the last time I skipped dinner! A warning came from the nurse that they would need to take my blood pressure every 2 hours. What they didn’t warn me of was that they would also wake me up at 5:00, 5:30, 6:15, and 7:15am to draw blood, ask random admin questions, ultrasound my legs (they thought my feet swelling was due to a blood clot in my leg. Ugh. They should have seen my swelling with Micah’s pregnancy!), ultrasound the baby to check fluid, and to do a non-stress test too. Seriously, can’t hospitals talk to each other and decide to come in ALL at once, say after a good night’s sleep, and get it all over with at the same time??? It’s a teaching hospital too, so I had residents, students, techs, nurses, nursing students, and the whole lot coming in for different reasons. That was a rough night.

My BP stayed low overnight. Blood tests came back normal, and they continued to test my urine protein for 24 hours. Thankfully after the first night, it actually started feeling more like a hotel stay. I slept in, had food delivered, watched some TV, caught up on emails, stayed in bed all day… all without chasing a toddler. Blood pressure remained within the normal range, most likely due to the fact that I stayed in bed all day! The OB on call visited and informed me that they would keep me another night to finish out the urine analysis and continue to monitor blood pressure. Fine by me! I was starting to see the silver lining in this whole hospital stay (mind you, a very expensive way to relax!). As long as I didn’t have to be awakened every 1.5 hours, I could enjoy this time. During the afternoon/evening I felt more freedom to walk around, take a shower, get my own snacks & beverages, and generally move around at my own pace. Unfortunately this minimal activity alone raised my blood pressure enough to be just under the cutoff range that would raise concerns.

Around 7:15pm, exhaustion took over and I decided to lie down for a late nap. As I lie there, it all started falling into place… some random symptoms that I’ve had over the last couple weeks could actually be early signs of mild preeclampsia. Increased swelling, increased heart rate, a couple high blood pressure readings, a slow building headache, some blurred vision and bouts of feeling lightheaded. I had been taking care of myself, eating well (LOTS of protein and water), resting as much as I could, and so on. However, I wasn’t sleeping well at night. I chalked it up to exhaustion. But with these high blood pressure readings and a new light being shed on preeclampsia, it hit me that the doctors may just be right! I was in denial the night before when they kept throwing around the term that I never even considered it a possibility for this pregnancy. They don’t know exactly what causes preeclampsia, although some have tried speculating different reasons. The problem, besides the obvious risks, was that this disease leads inevitably to induction… not something we wanted to consider at all. Especially because there can be some complications associated with the drugs they use to induce and a patient who attempts a VBAC (vaginal birth after cesarean). The low risks aren’t scary enough for us to decide on a c-section however. Our desire remains to have a vaginal birth, and I will do everything I can for that to happen safely. That being said, induction complicates the matter of a natural childbirth. I had to be ok with compromising this part of my expectation of labor and delivery for the safety of Kaelyn and myself. Another thing to consider… the worse preeclampsia gets, the more medical intervention necessary. With mid to severe preeclampsia, they administer magnesium sulfate – it drops your blood pressure, but has horrible side effects like intense nausea, a dizzy and lightheaded feeling, among others – that would require me to be chained to the bed, with an IV, catheter, and a general drugged and ‘out of it’ feeling. Mild preeclampsia doesn’t necessitate this drug, but it’s a fine line before mild turns severe. So my dilemma is… do I hold off on induction and risk my symptoms getting worse and going into the mid to severe range? Well honestly we decided, yes. We will monitor my blood pressure (Dad brought his cuff from home) and keep an eye on my symptoms. If things get worse, we’ll decide when to go in. If my pressure stays ok, we’re going to hold off as long as possible before inducing. Thankfully the doctors were ok with waiting until about 5 days before my due date to begin induction next Monday night. This took a lot of discussion with Tony, prayer, and a general letting go of my stubbornness and high expectations. I don’t feel rushed about the decision… and I also know I can change my mind depending on my blood pressure this week. If Monday comes and I feel just fine, I can always push the induction back and give her some more time to cook. Anyway, just a couple interruptions came the second night, and the next morning I slept HARD until almost 9am!

They discharged me late the next morning with two appointments set up. Non-stress test for Kaelyn on Friday morning, and the induction scheduled for Monday night. I have a feeling she’ll decide to show up before then… but if she doesn’t, I know I always have the option of delaying it depending on my health. We are settled in at Michele’s house in Castle Rock. My parents both graciously offered to stay up here too, to help care for Micah and to also keep an eye on me. Tony’s night job scheduled him every night this week, so unfortunately he won’t be able to join us at all. At least until b-day comes. So please pray for loooooow blood pressure, no headaches, no blurry vision, no preeclampsia!… and a little girl determined to come out soon!

The past 36 hours have been a whirlwind to say the least. It started out fairly calmly yesterday morning, when I began to experience some early labor symptoms. I’m not one to overreact in a situation, so I hoped my behavior during labor would follow suit! Without going into too many gory details for our faint of heart readers… let’s just say there were ‘things that happened’ yesterday morning that made me think, ‘Hmm… this thing could go down in the next few days.’ I mentioned it to Tony, but we both went on getting ready for church knowing that these things can take some time. Went to church, went to lunch, came back home for naps. One of the symptoms I can mention, nausea, started getting worse when I got home… that and my temperature jumped up a little. I laid down for a nap, not sure of how much time I’d have to do that in the next couple days.

I started contracting during my nap but not having much pain associated with it, I didn’t think to count duration or frequency. These contractions did feel different, compared to my previous Braxton-Hicks contractions however. I knew it was only a matter of time before they got more painful and more frequent. After about an hour of that, I decided to go downstairs, watch the Rockies game, and call some family to chat. Contractions continued, but again not really that painful. Tony woke up from his nap, and after the update, we started talking about our options as to when we should start heading to a hospital. The hospital in the Springs where my OB practices is about 40 minutes from our house. The hospital in Aurora (outside Denver) where I was supposed to deliver could be anywhere from 1.5 to 2 or more hours depending on traffic. Contractions sneaked up on me, and at one point I realized they were only 5 or 6 minutes apart. Ok guess we need to be timing these suckers! 30-40 seconds in duration. Well still not REALLY far in labor or THAT painful, but after 2 hours of driving, who knows? Didn’t really want to deliver on the side of the road. At that point, we decided to call my awesome OB in the Springs (who SO kindly offered up his cell number to us for any questions). After explaining my slight symptoms from that morning and the building contractions that afternoon, he thought it best for us to go ahead and head up to Aurora to at least get checked.

Adrenaline kicked in, we loaded up the car, picked up my folks, and headed up there. Well wouldn’t you know it? I’ve heard before that adrenaline and an early trip to the hospital can slow down labor…. mine came to a dead stop when we got there!! Nevertheless, they hooked me up and poked and prodded. Only 1 cm dilated. Bag of waters had not fully ruptured. I was contracting, but they weren’t strong enough to get the job done at this point. I thought, ‘No big deal, I’ll just go to Michele’s house like we planned and wait it out to see if they start up again.’ That’s when they hit me with the unexpected news. Two or 3 high blood pressure readings concerned them enough to throw around the term preeclampsia. Actually, two of the readings fell in the ’severe preeclampsia’ range. They don’t take any chances with that pregnancy-induced disease. Quick recap of it: can cause anything from high blood pressure, swelling, liver problems and vein constricting (slowing the growth of baby) to maternal seizures, infant brain damage, and maternal and/or infant death. A quick decision to keep me overnight for monitoring totally changed my expectations for that night. No labor. No going home. Now thinking of other necessary options.

(I have to split up this story, because it’s late and I need sleepy! Part 2 should come tomorrow… as soon as I have a little chunk of time. Good night, and thanks for the constant prayers!!)

Standing in faith,

Shannon

So are you curious about what they found on the last ultrasounds? Those were in fact the last scheduled ultrasounds before birth. Well besides her size, there was nothing too exciting about it all. More of the same… hypoplastic left heart syndrome. But you know what? Perhaps God is waiting for us to be over and done with all the poking, prodding, and spying on her heart. Maybe he just wants to work on it in peace, hidden from the outside world, without the doctors trying to claim that they knew what was going on. As some friends reminded me this past week, He does NOT share His glory with anyone! Perhaps He is waiting for day 4 after birth – the day of her ‘planned’ first heart operation – to reveal His hidden miracle. So the doctors can see with their own eyes, in the physical sense not using sound waves through my belly, the before and after. A broken heart mended without their intervention. Wouldn’t we love to avoid the time in the NICU, the heart-wrenching account of our brand new daughter hooked up to various tubes and machines for 4 days, the constant vigil of watching her oxygen levels and praying she doesn’t get an infection, and the financial burden that would put on us? YES! So y’all keep praying that whatever time frame God has set up, that He would mercifully heal her NOW! But will our faith be shaken if that time frame is not in His perfect will? NO. We rely on His promises and His timing… we are expectantly waiting for a complete healing… that He will finish what He started. And we will be SO excited to share that with you all!! The game plan is out the window… we are not packing to be at the hospital for a month. We’re putting our actions where our belief lies. So what if it sounds stupid to anyone… we are a peculiar people, aren’t we?

Anywho… our selfless friend Michele has offered her home to us. Micah, my Mom and I will move in with her this Sunday, barring any ’bouts’ of labor this week. We’ll be 30-45 minutes from the hospital in case I have a super speedy labor (like so many of my friends have lately!) and need to get up there quickly. After birth, I don’t know if they will give us a chance to be with Kaelyn if/when they take her to the ICU. We’re asking that everyone who is planning on making the trip to Aurora be sensitive to the fact that we’d like some time with her before anyone else spends time with her! You may not get to see her, or us for a while. AND most importantly if you or anyone in your household has been sick or feels like they may be getting sick, please feel free to love us from a distance, from the comfort of your own home! Even if you don’t go into the ICU, we don’t want to be exposed to anything ourselves. That sure would put a damper on things. My folks and my friends Shannon and Anna will act as representatives if you have questions or want to visit. Shannon will be updating this blog at times, so you can get up-to-the-minute reporting!

Ok so let’s go back and recap the non-Kaelyn happenings of the past few weeks, shall we? The DeYoung family made our debut in the annual Bronc Days parade here in GMF. We opened the parade in the department’s main fire truck, lights flashing and Micah and I waving dutifully. Micah was sooo elated to be ‘driving’ in the front seat of the ‘big big truck.’ Whenever we stopped, he’d say ‘Go! Go big truck!’ I told him to wave to the people, so he’d grab my waving hand and say, ‘Hi peoples’ over and over again. Dad rode on the back of the medical truck with Smokey, this time sans tiara.

The following weekend, we took a much needed family day and went to the Cheyenne Mountain Zoo. Tony has been working 5-6 nights a week in addition to his day job, so we scheduled this way in advance to make this happen! Micah’s favorite animals happened to be the monkeys and snakes (much to Tony’s disappointment). He did get to feed the giraffes and birds, but the long giraffe tongue just freaked him out too much.

We rounded out the weekend celebrating 2 years of life for Micah’s betrothed, little Ella Bells Moore (her full name according to older sister Adri). Can’t believe Micah’s is just around the corner too, on September 8th! These babies just turned into little people overnight.

Oh and this was just a random picture from last Saturday morning. We do it right with pancakes or french toast every weekend. In the midst of our syrupy goodness, Tony turned Micah into a nun.

Thank you again to all of the amazing people who have sent us encouragement, scripture, and words from the Lord along with your continual prayer for our precious Kaelyn. Thanks to our sweet friends Eileen and Shannon for the special, AWESOME prayer time you held for me, Kae and Ton. Looking forward to doing it again with the Flanagan’s tomorrow. I’ll leave you with a passage that just KEEPS coming up over and over (hmmm maybe it’s important?). John 14: 12-14: “I tell you the truth, anyone who has faith in me will do what I have been doing. He will do even greater things than these, because I am going to the Father. And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it.”

June was the time for out-of-town company. Tony’s dad stopped in for a weekend and brought his lovely girlfriend, Pat. It was our first time meeting her, and I must say we loved her from the start! We enjoyed a scrumptious dinner at Outback in Denver, and Micah warmed up enough with them to show off his fake laugh, call Jim ‘Papa’, and play football across the table with Pat using the crayons.

Back in GMF, we had more family waiting for us… Danny, Candi, Gramma, Sherridan, Shaniah, and Shaye all the way from Tennessee!! Our time with them flew by, even though we mostly sat around and talked, ate, laughed, ate some more, laughed a lot more, and tried to stay cool in the abnormally insanely hot June days. It wasn’t easy for me staying cool with this little heater growing inside! It WAS nice to have 3 little built-in babysitters fighting over Micah’s attention the entire time. They were officially the first people in history to wear out Micah, our energizer bunny. He would actually run into the house after playing outside all day and cry for me to put him in bed! He slept reaaalllly well for that week & a half. The family being here reminded me of how much I miss the entire Martinez family being together. It saddens me to think that Micah & Kaelyn won’t have them around growing up day-to-day like I did. All the more reason for us to obtain financial peace, right? Vacation money!

The blow of the family leaving was softened by the fact that Gramma got to stay for an entire month! Micah became so accustomed to her being at my parent’s house that he actually started calling it ‘Gigi’s House.’ ‘Are we going to Gigi’s house? Where’s Gigi?’ He still asks for her and the girls every day.

At the beginning of July, we held a joint surprise 50th birthday party for my folks. Besides a couple close calls, they actually remained surprised through all the planning and waiting! Ed set up the man tent in our front yard, and we partied old school with the camping chairs and BBQ, with some Jack Johnson and Zac Brown tunes floating through the air. I must say, it was a success!

The following weekend was also a big success. Tony, Kenny, Dad, Jerry, and a friend from work built the shed that we’ve been planning for over a year now! Although it took a bit longer than expected (and a complete emptying of our fridge because of my cooking for them the entire weekend!), it sure feels good to have that extra space. We don’t have a garage, so our extra stuff has been stored in my folks’ garage, our tiny attic space, closets, under the bed, etc. Not any longer!

The next day, my amazing friends Shannon and Lynae held a baby shower for Kaelyn and me. What a time of celebration!! Such a great turnout, even my mom’s sisters from out of state were there! Gramma Martinez too, with her sister Bobbie. The theme that Shan & Lynae chose just fit to a tee with Kaelyn’s room decorations, but it also fit the ‘mood’ that I would have imagined for her had I planned the party. Celebration, beauty, love, giving thanks, etc. After some yummy food and unbelievable gifts, they held a prayer time for us. My dad had ’stopped by’ at the beginning of the shower to give my out of town aunts a chance to see Micah, but he ended up staying through the entire thing. So he also got to be a part of the celebration and prayer. What a great day!

The next day… yes, the next day. That is our schedule right now! We had one of 2 Denver appointments that week at the University of Colorado Hospital. Another fetal heart echo showed normal progress as expected. Still a closed valve with blood flow to 3 of the 4 chambers… still considered Hypoplastic Left Heart Syndrome. This time they went into greater detail exactly what should happen following Kaelyn’s birth, their ‘Game Plan’:

No induction or c-section is necessary, barring otherwise extreme circumstances. They would feel better with us staying in the area prior to 38 weeks, but I just don’t want to put Micah (and us!) through the extra time and hassle away from home. My mom would most likely stay with Micah and me near the hospital. Still not sure exactly where we’ll stay at what time. My friend’s house in Castle Rock is available, but they may still be too far for comfort when it comes to labor. When I do go into labor I’m to call the cardiology department, so they can have their team with the surgeon on standby. Immediately after birth, a critical care team would take Kaelyn to the ICU at the University Hospital (where I deliver her) to administer prostaglandin and keep open the duct in her heart. She’d stay there about 4-6 hours until stable, then the transport team would take her by ambulance across the street to the Children’s Hospital to the Cardiac ICU. Tony would stay with her at all times, until I can be discharged from the University Hospital (minimum of 8 hours after birth). More tests, prostaglandin, checking of oxygen levels, and hopefully nursing over the next 4 days until Kaelyn’s first surgery. After surgery they’d leave her chest open with a bandage to make room for swelling. This would necessitate keeping her unconscious on a ventilator for about a week. Then they would slowly wake her up, let her breathe on her own, start eating, etc until she’s ready to go home… approximately 2-4 weeks after surgery. She’d be in the CICU the entire time. Oxygen would go home with her, as we are at an even higher altitude than Denver. Our home would need to remain as sterile as possible, to keep away ANY and all infections from Kaelyn (and just as importantly, Micah the potential carrier monkey) during this critical time. We would try our best to give her a normal routine, with optimal nutrition to aid in her growing strong and healthy until the second heart surgery… around 4-6 months of age. Whew. The Game Plan.

Tony and I had 11 different appointments that day, including the cardiac echo, meeting of the OB, High Risk Labor and Delivery tour, meeting an administrator for the University Hospital to handle all our needs with a  tour of the ICU, cardiologists at the Children’s Hospital, cardiac surgeon, social worker, fetal concerns counselor, tour of the Cardiac ICU, a Children’s Hospital administrator who gave us a tour of the hospital, and a financial counselor. Needless to say, there were enough people catering to us that they made us feel welcome and at ease… well as much as you can in this situation. I’m still praying and hoping that this Game Plan can be trashed when Kaelyn’s born… that she’ll take her first breath and that valve will POP OPEN (or however else the Lord chooses to heal her!). So please continue to pray with us! There is still peace when Tony and I talk about all of this. The hardest part for him was walking through the ICU, seeing the newborn babies hooked up to all the foreign machines. It literally made him queasy. But over all, we are both confident and can rest in the fact that the Lord cares for this little girl way more than we ever could! She is precious to Him, and He will take care of her so much better than we can or even can imagine. His plan for her life has been in motion from day one, and it is perfect.

Later that week, I had an OB ultrasound of Kaelyn at the University Hospital. This OB team wanted an ultrasound of their own, to check her overall progress (not just the heart), but also to investigate a couple weird anomalies in her kidneys and skull that showed up on her MRI results. Turns out those were completely wrong. Fetal MRI is in its infancy and can show problems that really don’t exist. We really were not at all concerned about the original report.

Later that night (it just happened to be my birthday… wow you KNOW we’re busy when we completely skip over birthdays!), I was in charge of a multi-family garage sale that was to be held at my place early the next morning. The girls showed up after my appointment and we ate pizza and priced items until well after dark. Saturday’s garage sale was a HUGE success! I’d say we should make this an annual thing, but MAN those things are so much work! We’ll see how motivated I am next year.

In preparation for the blessed day of Kaelyn’s birth, Tony and I are faithfully attending natural birthing classes and reading up on our Bradley books! Tony’s been a rock star with memorizing charts and really paying attention with anticipating what my needs may be. Our instructor, Laura Tefertiller, has been a wealth of knowledge and extremely helpful by molding the private classes to our specific needs with me being a VBAC, this being our 2nd child, a possible heart issue, etc. I highly recommend her to anyone in the Springs area!

For those of you asking about Micah’s allergy appointment, it was fairly inconclusive. Unfortunately at his age, the test doesn’t show a positive until he’s been through TWO allergy seasons. When doing the allergy panel on adults, they use tiny needles to pierce the skin (a more accurate test), but with children his age, they just do a surface scratch test. This test came back negative for Micah, but the doctor said he has all the classic signs of an allergy. So I guess we’re going to have to retest him next year to see what the culprit is! In the mean time we’re trying different medications, mainly children’s Zyrtec and Claratin, to see if either keeps his symptoms at bay.

To round out the month of July, some girl friends flew into Denver for a weekend vacation! Sarah and Becky came in from California and Heabo from Tennessee… Shan and I drove up to meet them. Dinner at Cheeser then hotel on 16th Street. Unfortunately a couple of the girls got that nasty flu bug going around and were up allll night. The hotel was so quiet that the rest of us were up as well! Becky and I stayed up long enough to hit the continental breakfast then we dragged ourselves back to the room to try and squeeze in a couple hours of sleep before our long shopping day!

We actually made it through the long, scorching day by stopping frequently in the air conditioned stores to cool off. It ended up being a really enjoyable day, despite the fact that we were all zombies walking around! That night we headed up to GMF to continue the party at my place the rest of the weekend (Tony took Micah to my folks’ house for the weekend). Filled with lots of food, movies, coffee, more shopping, mani/pedi’s, and more food – the weekend flew by! It’s definitely going to be an annual Coloradical trip!

Back to reality. What’s next for doctor’s appointments? Well all of the OB’s agreed that we should have regular non-stress tests to check Kaelyn’s heart rate and activity through the remainder of the pregnancy. While at it, they also want to check her fluid level… plus I’ll also be getting weekly check ups with my OB in the Springs. Sooo from now til the end, I’ll be driving down twice a week for NST’s, with fluid checks and OB check ups once a week. Thankfully my mom has volunteered her childcare services with Micah! The next big appointments will be the week of August 2nd: one last OB ultrasound in Denver and another fetal heart echo in the Springs. Until then… please continue to pray for healing, financial provision, energy to persevere, and rest for our family before the craziness begins! I’ll leave you with some random summer pics…

Hugging Kaelyn

Car show in GMF

Crazy hyper face!

Cousins!

He put on my mismatched shoes and said, ‘Let’s go bubye!’

Building the shed with their bare hands (and some tools!)

]]> http://tonyandtawni.com/wp/?feed=rss2&p=879 4 http://tonyandtawni.com/wp/?p=870 http://tonyandtawni.com/wp/?p=870#comments Thu, 03 Jun 2010 03:26:36 +0000 Tawni http://tonyandtawni.com/wp/?p=870 Today was the first all day Denver trip to the Children’s Hospital. Technically in Aurora, CO, the hospital is an extension of the University of Colorado campus there. We absolutely loved this place! So accommodating, friendly, bright, clean, and the entire staff was extremely helpful… down to the fact that we had not one, but two cardiologists answer all of our questions today and both gave us their cell and pager numbers. Dr. Carrie (we’ll call her that because her last name is way too difficult to pronounce) and Allison the NP handed us a packet explaining in great detail what Hypoplastic Left Heart Syndrome is and a step by step breakdown of the Norwood surgery in all phases.

Our first appointment was the MRI to examine Kaelyn’s brain much closer than an ultrasound is able. I’ll call my doctor in a couple days for those results. (Maybe some good news?) The technician had to ask me again afterward why I needed the MRI on her brain and asking what they were looking for. Perhaps that means all looks pretty normal.

Next up, the echocardiogram of her heart. Basically it was a long ultrasound that focused on her heart and the arteries & veins flowing to and from it. Besides having the hiccups, Kaelyn was very still for this one. She must’ve known it was important for her to be good (for once). Meeting with the doctors after the echo confirmed the original diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Her left ventricle is still not getting blood flow, therefore making that chamber, along with the artery coming from it, extremely small. One thing that was interesting: this doc said she saw a minuscule underdeveloped mitral valve. Our local cardiogist said none existed at all, that it’s just a wall there. Who knows? The start of something there… or an oversight? Dr. Carrie said it’s a fine line between a ‘barely there’ valve and none at all. Well maybe we just pray that it’s the start of something big in her heart! That this valve will grow and become fully functioning, impossible according to all of the doctors we’ve asked.

The docs also explained why they would choose the Norwood procedure over the transplant (thankful that we were leaning toward that anyway). The Norwood procedure at their hospital has a 75% survival rate after the first two surgeries. Higher than the transplant odds and also much less foreign to her body. The Norwood has only been around for the last 20 years, so implications over a lifetime are unknown. However, she explained there will probably be a need for a transplant later on in life when she is much more stable and her body more apt to accept a transplant. The heart isn’t meant to only use one side for an entire lifetime, as she explained. We’ll always have the transplant option in the future, but for now it is not recommended. Plus who knows what kinds of medical breakthroughs they’ll make in the next 20 years!

More good news: Dr. Carrie encouraged my hopes of delivering naturally and on-time, rather than inducing or having an early c-section. She explained that in the womb, Kaelyn is not at ALL affected by HLHS in any other way. Because she receives my oxygen while connected to the unbilical cord, labor will not cause her any harm whatsoever. It would be just like a normal, uncomplicated labor… up until the point when they cut her cord. That’s when the action plan begins. Barring any ‘normal’ labor complications that any healthy woman and baby may experience, I am clear to deliver her however I please. She did suggest that I stay in the Denver area beginning at 38 weeks, due to the long drive from home. If they can help it, they want their CICU (cardiac intenstive care unit) on standby, their trained doctors and nurses, and their catheter facility in case of emergency. In the CICU, she will be monitored extremely closely to make sure her oxygen levels stay within the safe range. Within minutes after birth, they will administer prostaglandin into her umbilical vein (starting an IV there) to keep that important ductus open for 4-5 days until her first surgery. I have no problem with delivering up there… that’s actually what Tony and I decided to do before we even talked to the doctors. We’d rather not have to transfer her via helicopter at 4 days old; and after seeing the facility, we’d much rather have their trained professionals do exactly what they know. It’ll just take some juggling with where to stay, where to eat, where to keep Micah, how much time Tony can take off work, etc. But I am not at all concerned that God will provide in that sense as well.

Dr. Carrie went on to explain what we can expect after that first surgery. Kaelyn will stay in the hospital for another 2-4 weeks, depending on how well she recovers. Micah and I of course will stay in the Denver area during that time as well. Once released, we’ll be sent home with a pulse oximeter to measure her oxygen concentration and also oxygen for her to be able to breathe at this altitude. We’ll try and maintain a sterile environment at home (whew that’s gonna take some planning!) and try and BRAVE the cold/flu season without her getting sick too much. She’ll be closely monitored by our local cardiologist and also by a nutritionist to make sure she’s growing on track. When she’s 4-6 months old, the second surgery will take place. I’ll get into those details later…

Next step? A regular check up with the local cardiologist in 3 weeks. Then in 5 weeks, we’ll have another long day at the Children’s Hospital meeting with the OB up there, Dr. Carrie the cardiologist, Dr. Jaggers the cardiac surgeon, a financial counselor, and also tours of Labor & Delivery and also the CICU.

Again, we’ll continue to pray that all of these appointments and planning of sensitive surgeries are in vain! Please continue to pray for that valve to grow and for us to process this information with peace and wisdom. Pray that the Lord would completely cover this process financially as well. Thank you again!!

The first appointment will be in radiology to have the MRI done. All of the specialists are curious to see in greater detail what exactly is going on in Kaelyn’s brain. The MRI will give much more info than the ultrasound can offer. Again, I’m not concerned about it.

Then it’s off to see a pediatric cardiologist up there. She may be the one who does Kaelyn’s surgery if necessary. Later on a meeting with an OB up there may be necessary, if we decide to deliver her in Denver. In the mean time, we continue to meet with my OB Dr. Weary, the perinatologist Dr. Muench, and the local cardiologist Dr. Brahmis in the Springs. It’s hard to keep all these specialists straight!

We’ve been in such a ‘wait and see’ holding pattern for a while now that I honestly don’t know what to expect with these appointments. It’s nothing that we can really prepare for, so all we can do now is go with the flow! I still feel at peace about it all. It’s out of my control. I just continue to pray and expect that God will take care of this, when or how He decides to do that… we don’t know. But at least it’s all in His control.

In other news, the boys had some fun while practicing extrication and cuttin’ up cars! Micah and I walked next door to the open lot where the fire dept holds drills sometimes. We saw Daddy as a first responder and as a tool-wielding car cuttin’ machine. Grampa got to enforce his Captain status and watch as the newbies learned.

The Memorial Day weekend was beautiful up here! We took advantage of the good weather all weekend. After Jerry & Amanda’s kick-back wedding on Saturday, we enjoyed a picnic at the Green Mtn Falls park on Sunday for Dena’s birthday while Micah stuffed his face with brisket. With Grampa’s help, Micah also caught his very first fish on his Spiderman fishing pole!

Tons of time was spent on the new swing set in Gramma & Grampa’s back yard. Micah could be out there until midnight if I didn’t force him to come in and go to bed!

A friend of mine posted part of that passage the other day, and ever since then it has been running in my mind over and over. It was in my thoughts as I made my way to our local pediatric cardiologist appointment today, and I’m so thankful it was!

Immediately liked the cardiologist – his disposition, optimism, knowledge, genuine concern for our lives – but he did have to deliver some bad news. First off, the diagnosis that our perinatologist originally gave, hypoplastic left heart, is accurate from his perspective as well. The news that’s a bit worse is… the valve to her left ventricle doesn’t exist at all. There’s not even a remnant of a valve starting. It is just cardiac muscle, just like the rest of the heart… a closed-off wall in a sense. There’s zero medical possibility of a valve forming and/or opening at this point. A surgery there would be useless, because you can’t just poke a whole in that wall and expect it to act like a valve. Her heart essentially will not work after birth with this missing valve problem. Thankfully, in the womb a baby’s heart doesn’t really need the left side to work due to the intricate workings of the pulmonary ductus arteriosis. Basically this duct allows blood to flow to and from the lungs without needing the left side of the heart. In a normal heart, this ductus closes after birth when she takes her first breaths of air… in that case, the left side of the heart takes over and pumps that oxygenated blood to the body. In Kaelyn’s case, that wouldn’t happen.

He told us there are three options in dealing with this problem, all dealing with a post-birth scenario and all he considers to be ‘extreme measures.’ The first option that some parents choose (which we definitely will NOT) is to do no surgery and allow the child to die in a hospice type situation shortly after birth… No. She’s obviously a fighter, and we will fight FOR her as well.

The second option is to do a heart transplant. A new heart with all functioning chambers and valves. Pros: starting from scratch with all working parts. Cons: there is typically a 4-month or longer wait for a donated heart, she’d be hospitalized the entire time and then some, risk of infection and rejection is higher, she’d have to be on anti-rejection and other meds her entire life, we’d have to live within 30 minutes of the hospital during the wait and 6 months or more after the transplant (hospital policy), she’d have to have countless follow up appointments and tests throughout her life, and they really don’t know how long a transplanted heart can last in a newborn (they’ve only been doing heart transplants in infants for maybe 20 years). Whew.

The third option is what I had mentioned briefly before, the 3-part surgery known as the Norwood procedure. Let’s back up and explain what happens in a normal heart. The deoxygenated (no oxygen) blood from your body gets pumped to the right side of your heart. This side slows down the blood pressure. From there, it goes through your pulmonary artery to the lungs (the lungs can only receive blood once the pressure has been lowered). In the lungs, your blood receives oxygen. From there, pulmonary veins take the oxygenated blood to the left side of your heart. This side speeds up the pressure again and takes the oxygenated blood to your body for distribution. In Kaelyn’s case after birth, the left side cannot deliver oxygenated blood to the body, and there will also be a build-up of pressure on the right side of the heart.

With the Norwood procedure they would reroute the blood completely and NOT use the left side of the heart at all. Amazing isn’t it? The deoxygenated blood from her body would get slowed down (in a process resulting from one surgery they do), and go straight to the lungs without going to the heart. There the blood would pick up oxygen and again be rerouted to the RIGHT side of the heart. They’d reroute an artery to come out of that side and deliver the oxygenated blood to the body. How do they come up with this kind of stuff?? Anyway, Kaelyn would have a surgery around 1 week of age, then another around 6-12 months of age, then the final around 2-4 years of age. The first surgery is the most risky, and if she can survive that, the other two have a higher rate of survival than the first. Pros: no anti-rejection problems because it’d still be her own heart, no living at the hospital, no fear of a long-term infection throughout her life, less follow-up appointments and tests, a possible higher overall quality of life. Cons: the first surgery can be quite risky, she would be under the knife 3 times, her blood pressure would need to be monitored and stabilized closely so that the new blood flow route would work properly, possible lower quality of life (depending on how her body reacts to it).

Either surgery would take place at the Children’s Hospital in Denver. Again, the cardiologist today said that they are the BEST at pediatric heart surgeries. Good thing Denver is only about 1 1/2 hours from our house. Other good news, I can possibly deliver naturally without a c-section. As long as she’s hooked up to the umbilical cord and placenta, she’s receiving oxygen from me, so the labor process shouldn’t harm her at all. Of course we’ll carefully monitor all of those factors in the coming weeks before we decide for sure to deliver naturally. We would need to deliver at a hospital that has a pediatric catheter lab on site in case they need to do any emergency opening of arteries. St Francis in the Springs does not have a lab, but Memorial does and of course the Denver Children’s Hospital does as well. After birth, they will give her medicine to keep that pulmonary ductus arteriosis OPEN so that it works as if she were still in the womb. They’d give her oxygen and we’d all pray that she remains stable until one of the surgeries can be performed.

So… that’s all the medical jargon. What does that mean for us? Well my initial reaction was, Ok… this is medically and physically an impossible problem to fix before birth and without surgical means. But does that mean that it won’t happen? I don’t know for sure. This would HAVE to be a true, undoubted, inexplicable miracle from God for her to be healed before birth! We’ve seen this happen in her brain already. Now let’s go with round two and see Him do it in her heart as well… to literally create a valve and opening where there is only a wall. We are not anxious because we have hope and a promise that in the end, she will be healed… we just don’t know if it’s supposed to happen without intervention in the womb or with surgery after birth. We’re praying HARD that this will be taken care of by Him in the womb. What an awesome story that would be to tell!!

The next steps are to meet with the cardiac surgical team in Denver to discuss our options further, and to also see the local cardiologist along with our perinatologist at least every 4 weeks.

Going back to that passage from 2 Corinthians… to a lot of people this would seem like a death sentence for their baby, or at least an insurmountable problem attached with worry and doubt. But WE know that there is an all-surpassing power from God. He will not allow us to be crushed or destroyed even though we are hard-pressed and struck down. Please pray with us that His will is done in Kaelyn’s life. Appeal with us for healing! If He chooses that we rely on surgery, pray that we make the right decision, according to what He wants for her life. I know that He already knows the outcome… his decision for her life is perfect. We’re just trying to seek and tap into that knowledge! Again, we appreciate all the prayer and support of all kinds from you all.

Love,
Tawni & Tony
Micah & Kaelyn

New profile shots from today