Aiden 08/19/2016

As I sit on the sofa and type this, my baby is in front of me trying to crawl into the bottom part of his exer-saucer and swing the tray of his high chair hanging in front of him, at the same time. Within just a few minutes, he notices me watching him from the other side of the room and starts gleefully army crawling his way over here. He is interrupted by quite a loud hiccup that startles him but then continues crawling my way. He makes a quick pit stop in the living room to play with his purple octopus and then finishes his trek across the room to come and see me on the sofa.

This boy is constantly on the go. If he isn't exploring, climbing, chasing the dog, giggling, or getting stuck, he is probably sleeping. Cuddling with Aiden is generally futile. He is usually too busy trying to figure out how to escape our clutches or climb over us. Actually mommy and daddy jungle gym is one of his favorite games. As long as we don't mind the occasional baby kick to the face, it's the perfect lazy parent game and Aiden loves it.

Aiden is a foodie. He loves to eat his baby purees and finger foods. But if it is on our plate, he loves to eat that even more. This baby can sense when someone else is eating lunch from a mile away. I'll see him playing on the living room floor as I sit at the table, and then suddenly he turns his head and is staring directly at me. He doesn't move. He doesn't blink. He just stares. Then he squeals, kicks his feet up (think baby supermans) and starts crawling toward the table. He gets about half way there before he decides that should be far enough and that I should begin to put food in his mouth. I persuade him to come closer so that I can give him a bite and reluctantly he agrees and crawls the rest of the way. My little birdie stays close and lets me know quickly if I have waited too long in between bites. He does this until I am done eating. Every time. 

We have always known that Aiden is brave, but he is showing us in more and more ways just how courageous he actually is. Whenever he hears a sound that scares him (the vacuum, the blender, the ice maker, etc.), he takes a moment to analyze the situation. And then slowly, with a look of caution, starts moving toward the sound to investigate. Yesterday as I was using the blender, I saw him peek his little head around the corner and start crawling towards me. He was a little unsettled, but when I picked him up, he became purely interested in the sound and watching the blender. He does the same thing when I vacuum. It's fascinating to watch the little wheels in his head turn. 

Bath time for Aiden is a blast. He loves laying down on his back and splashing and kicking his feet. And just recently, he has taken to the faucet as the bath tub fills up. He began by watching it intently, then reaching his hand towards the water. And finally, he stuck his head underneath it. He quickly brought his head out of the water stream, took a second to compose himself, looked at us and just grinned. It was absolutely hilarious to watch. If bath time is a show, just wait til you try to get him dressed afterwards. He is turning onto his belly, getting up on his hands and knees, trying to crawl up and over into his crib, and then does it all over again when you turn him over to his back again. Sometimes getting Adien dressed after bath time is a two person job.

He is interested in anything and everything and can't get enough of the world around him. At 10 months old, Aiden has hit a majority of his baby milestones. He can move anywhere he wants to go by army crawling and scooching, but he doesn't quite have the upper body strength to crawl on his hands an knees. He rolls over, climbs and pulls himself up, but can't quite reach sitting position on his own. We have a therapist who comes to teach us how to help him gain the upper body strength he needs. We have already begun to see an improvement. But really, as if a slight delay in a few milestones could slow this one down. This one is going to be keeping me busy. 

06.16.2016 - Don't Forget to Thank God for the Rain

We have had a pretty eventful month so far, and we are only half way through.

First things first, I'll start with Aiden's update since that is probably why most of you are here. I've already come to terms with the fact that my son is more famous that I will ever be . Jk....but seriously :) Aiden is doing great and continues to thrive as always. The only thing we notice is that he tires out and sleeps a little bit more than average, and of course, this is to be expected. It will get a little worse and worse as he approaches his next surgery in about 2 years. He truly is a miracle, but you already knew that.

Here are a few of his highlights:

• He is 8 months old today and weighs just under 18 lbs.

• After months of practice, he can finally sit up on his own...most of the time.

• Aiden can go anywhere he wants by army crawling and rolling. 

• He blows kisses!

• Daddy helped him take his first steps!

I could probably go on and on. Aiden is doing great, as you can see. Thank you again for all the prayers in his behalf. 

In other news, we purchased our first home!

 It was actually pretty unexpected.  When our rent went up by almost $65 a month, we started looking at other options and realized that a mortgage was not as out of reach as we previously thought. So we started the house hunt and in just one day found a house that we LOVE . The sellers accepted our offer and we were in within a month. We closed almost one year to the day after finding out about Aiden's heart condition. What a year it has been. 

Anyone who has followed our story knows a lot has been thrown our way. The last year has been the hardest year of my life. I know it sounds cliche, but even so, I wouldn't change a single thing about it. Yes it's been hard. But I would have to be blind to not realize the incredible blessings God granted my family throughout the most difficult year we have gone through. And to see the year come full circle on such a positive note solidifies what I already know. God is real. And He is aware. Storms rage, but even so, blessing abound.

3 months and counting!

Can you believe that it has already been 3 months since Aiden underwent his second open heart surgery?

We have been home enjoying our sweet baby boy, watching him grow, for the last few months. Minus the three or four doctors appointments we've had, life has been so normal! It's actually been a bit of an adjustment for me. I am learning how to live without the stress of having such a medically fragile baby, but I am loving the change!


Here are a some of Aiden's highlights from the last few months

• Aiden turns 7 months old tomorrow.

• We took Aiden to church for the first time a few weeks after we arrived home from UCSF and we have been able to go almost every week since then. He does so well and is the most well-behaved little baby there!

• His favorite past time is rolling over to the TV stand and pulling out all the DVDs

• He sleeps through the night usually around 11-12 hours!

• He and Oliver have become good little buddies and they love to play with each other.

• Aiden started swimming lessons a few weeks ago and he loves it. It's been his and his dad's thing and I love watching the two of them in the swimming pool.

• Aiden has been eating fruits and vegetables for almost 2 months now and eats them like a champ.

Really, Aiden has been hitting all his milestones and is right on track. How amazing is this little guy!?

Tomorrow, We Go Home

Two weeks from the day we arrived, and 12 days after Aiden's surgery, we are going home. 

During this, our third visit to UCSF: 

I felt my heart break as I watched my sweet, innocent baby suffer after surgery. I also felt strength beyond my own as I stood by his side, holding his hand to get him through. 

I experienced indescribable relief as I began seeing signs of my precious boy coming back to himself. The day after surgery, he looked into my eyes and cooed as I held his head in my hands. Less than 48 hours after surgery, he smiled. The next day, he laughed and giggled with his family and nurses all. day. long. He partied just a little too hard that day and spent the majority of the 2 days that followed sleeping. Even so, whenever he woke up, he had a smile to spare. His resiliency amazed me and I was inspired by his strength.

I spent the last few days cuddling and loving on this precious boy of mine. I have sat and stared into his eyes and been hit with overwhelming love for him, more than ever before.We have spent countless hours smiling and "talking" to each other, sitting and rocking next to his hospital bed. We have gone on walks throughout the hospital and enjoyed some of the California sunshine over the weekend. This boy is my joy. 

I reflected... a lot. I can always worry myself sick about the "what-if" possibilities, the unknowns that come with having a child with a severe heart defect, but why should I? My boy is doing well. He has made it through two surgeries and shows no signs of slowing down. Instead, I am going to live each day as the blessing it is and not waste any moment with Aiden worrying about that "what-ifs" of the future. I will keep loving this boy, fiercely, until I have nothing left; he deserves nothing less. 

My gratitude for the miracles and continuous blessings I have received cannot be adequately described. I see my Heavenly Father's hand in all of this. I do not claim to know fully why we go through what we go through. However, I see the blessings that have come into my life...and there are so many. I rely on my Father in Heaven and without the knowledge I have of gospel truths, I do not know how I would make it through. I know that He is aware. I know He loves me and my family; He loves us all. He never leaves. He allows peace and happiness to permeate even the most difficult of situations. I know this to be true. And I am grateful.

. 

Post Op Day 2

It crushes your soul when your baby suffers and you can't do a thing about it. Aiden is doing well, but he is suffering. And knowing this breaks my heart. 

After a very rough morning, Aiden has calmed down. He received a dose of morphine around 8:15AM, but it didn't seem to help as much as we hoped. He would whimper every few minutes, then cry, and finally calm himself down and doze off only to repeat this pattern every 10-15 minutes.  Finally, about an hour and a half after his morphine, he reached the point of no return and would not stop crying for a good 20-30 minutes. I have never seen him cry like this before. His face turns red, he stares right at me, pleading, begging, and I watch his eyes well with tears. He sounds exhausted, disoriented, and my heart hurts to think of the pain he feels that causes him cry like this. I told his doctors that he needed more. They increased his dose of morphine and started him back on a drug called dexmeditomidine (to help him relax) that they for whatever reason stopped giving him. I cried right along side my baby this morning. 

Aiden is trying to sleep now as I sit by his bedside, but any little sound wakes him up. He moves his head from one side to the other, fidgets his arms, grunts and then finally relaxes and dozes off again. I know he is hurting and uncomfortable and my whole being aches because I cannot do more for him.

But Aiden is doing well. And I am grateful. He was extubated successfully yesterday and has been breathing very well on his own. He just ate 1.5 oz just a little bit ago and we have turned his IV fluids off to encourage him to want to eat, so hopefully there is more of this to come. And we have plans to pull his RA line (once this is out, we can hold him!!!).  I have seen a little bit of my sweet baby coming back today during the calm moments. 

I am so in love with this little boy and so amazed by his strength. My son fights CHD with every beat of his heart. And he is doing one heck of a job. 

Round 2

The first 24-48 hours after surgery are always the hardest and most trying. Aiden's medical team have things under control but man, difficult only begins to describe this situation.

When Dr. Reddy came in to talk to us last night, he felt pretty hopeful that Aiden would have his breathing tube removed either in the operating room or very shortly after. This is always the goal after a Glenn procedure because the breathing tube can interfere with the pressures of Aiden's new physiology. (Now, the blood flows passively to the lungs from the superior vena cava whereas before it was pumped to the lungs from the right ventricle through his sano shunt. Even though it seems counterintuitive, a breathing tube can actually make his oxygen saturarions lower because it obstructs blood from reaching the lungs...this video below really helped me to understand how this all works, if you are interested)

However, Aiden remains intubated. He has had tachycardia (fast heart rate) and lower oxygen levels than expected (currently sitting at 71% even after a dose of nitric oxide) that we need to figure out before we can extubate him.



Aiden has started to wake up three different times. The nurses have been great at quickly getting him sedated but it feels like forever as I wait by his bedside for the medicine to kick in, with my hand on his forehead trying to calm him. His heart rate increases even more, his blood  pressures go up and the monitors start alarming. Seeing his face turn red and grimace in what I can only imagine to be excruciating pain and/or discomfort breaks my heart into about a million little pieces. And watching his mouth open as he tries to cry out, but hearing no sound, smashes those pieces into dust.

Even though I know that everything is under control, and quite normal after major surgery, my hearts drops and I hold my breath when something changes and Aiden's room fills with doctors and nurses. His oxygen levels dropped to 58-59% about an hour ago and people came rushing in. I sat quietly in the back while they figured things out and prayed that he would be okay. I knew he would be, but sometimes you can't stop your mind from thinking about the worst.

Aiden is so incredibly strong. I have told him this at least 100 times today. As I get ready to leave him and go downstairs for the night, I know he will be watched over by very capable doctors and nurses. And even while I can't be by his side 24/7, I find comfort in knowing that his Father in Heaven never leaves him. And He will get us through this.

Heart Awareness - Day 5: Our Cardiologist!

I want to tell you about Aiden's cardiologist.

Like I mentioned before, we met Dr. Womack when Aiden was first diagnosed with HLHS. Dr. Womack quietly and sympathetically explained to us the reality of our situation and we could tell that it was not an easy task for him. He told us that he would support us in any decision we made and he made sure we knew we could contact him with any concern or question. Our respect and appreciation for him began on that first day and has only continued since then.

Dr. Womack met with us three different times over the course of my pregnancy. He checked Aiden's heart and then spent most of the appointment helping us sort and understand what we could expect when Aiden arrived. He provided us with the information we needed to make the best decision possible for our family. He kept a "big picture"mindset and encouraged us to do the same, telling us to always look at the horizon instead of focusing on the fear and the uncertainty of the current moment. He told us then (and continues to tell us now) that sometimes our decisions may seem irrational, but just because they are irrational, does NOT mean they are unreasonable. And that's okay. He constantly tells us this and after all the decisions we have had to make in the last few months, I think I'm finally really starting to understand this concept. 

When Aiden came almost three weeks early, he surprised everyone. Aiden was born at 9:37 PM on the 16th of October. Dr. Womack had plans to leave the country on the morning of the 17th. But he was there to meet his newest patient the night he was born, staying late to perform an echocardiogram on Aiden for the first time outside the womb, get him situated in the NICU and begin the process of getting us transported for surgery. We were so grateful that he went out of his way to be there despite the inconvenience that I'm sure the situation created for him. 

When Aiden's oxygen levels started to drop a few weeks after we arrived home from San Francisco, it took a little bit of time to convince Dr. Womack that Aiden's heart was to blame. But this is actually one of the things we really love about our doctor. He is not the kind of doctor that automatically attributes everything to the heart; he fully realizes that other factors exist, and a number of things could have cause the symptoms that Aiden exhibited, the biggest being illness or a virus. When you have a baby with CHD, a lot of times this becomes the only thing that people see. If all that people can see is the glaring heart defect, other causes might be missed. Aiden is not immune from any other problem just because he has heart disease. When finally it became clear that the issue stemmed from Aiden's heart, Dr. Womack did his best to avoid having to send us back to San Francisco. We saw the difference between our cardiologist and the cardiologist on call the day we arrived at the hospital. The on-call doctor was ready to send us with our bags backed the next day to UCSF. Dr. Womack knew that there were things that could be done here and while ultimately they did not work in Aiden's case, it was reassuring to see our doctor's extended knowledge and experience. Brent and I quickly learned during this time that our doctor knows what he is doing and that we can trust him 100%.

Now, since we have been home the second time, I feel like I email Dr. Womack every day with questions. And he always responds very quickly. He always reassures me that just because I have one low oxygen reading, plus the baby is crying and probably not breathing very well (because he was crying) does not mean that anything is wrong. He has explained this same concept to me multiple times with slightly different situations. And I finally feel like I am getting the hang of it...until something new happens, and off I rush to send our doctor an email. But he always responds, no matter how silly the question might be, because he gets it. He knows it's challenging as a parent to know if everything is okay, especially when we are so new to this world of CHD. 

Aiden went in for a planned catheter procedure about a week and a half ago. Dr. Womack performed this cath and while Aiden recovered, he had some issues with bleeding from the entrance sight. Dr. Womack came up to check on him a half a dozen times and when we couldn't get the bleeding to stop, he sat down in the rocking chair with Aiden and applied pressure himself for about 30 minutes. During that time, Aiden got hungry, so Dr. Womack fed him. Although I wasn't there to see it myself, hearing about it later made me smile. 

We are in good hands. We have the best cardiologist around and we know it. He knew when to ask me to start keeping a detailed record of Aiden's low oxygen levels. And then he knew that we needed to move Aiden's surgery to an earlier date and he got it rescheduled for us within a few hours. He has gone above and beyond to help not only Aiden, but his parents deal with the uncertainties of CHD. We love our cardiologist! 

(One of Dr. Womack's other patients that we know shared this video a while back. It shows just how much his families love and appreciate what he does!) 

Heart Awareness Day 2: Intervention

Hypoplastic Left Heart Syndrome is fatal unless intervention occurs within the first few days of life. 

After Brent and I had time to let our baby's diagnosis sink in, we had to decide whether we would fight for our baby and give him a shot at life, or bring him home to die surrounded by family. And of course, we decided to fight.  Our doctor recommended that we go to California to have the surgery performed. Though there were closer options, when you are talking about intensive open-heart surgery on a heart the size of a strawberry, you don't just choose the hospital that is closest to you. No, you choose the best of the best. There is no messing around. So we prepared to go to the Bay area when baby boy was born to have his surgery performed by one of the most renown pediatric heart surgeons. 

After birth, Aiden was immediately taken to the NICU and started on a medication called prostaglandin to help maintain his fetal physiology until surgery. It was an continuous medication through his umbilical cord. 

Aiden underwent his first surgery, called the Norwood Procedure on Oct. 22nd, 2015 at 6 days old.  

This procedure attempts to convert the right ventricle into the main ventricle pumping blood to both the lungs and the body. The main pulmonary artery and the aorta are connected and the main pulmonary artery is cut off from the two branching pulmonary arteries that direct blood to each side of the lungs. Instead, a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs. 

He was in surgery for 8 plus hours and tho I had tried to prepare myself to see my precious newborn post surgery, it was crippling. 

He miraculously recovered within 3 weeks and we were home by the time he was 1 month old! Taking care of him at home is a little more time-consuming that taking care of a normal baby. We monitor him daily and have weekly phone calls with UCSF. We check his oxygen levels at least once a day and weigh him every night. He takes 6-7 different medications on a daily basis and we have been to the doctors office almost a dozen times since being home. A lot of HLHS babies run into some trouble in between their first and second surgeries because the physiology of their hearts can be so unstable. Every effort is put in to making sure we do not miss warning signs and indicators that Aiden needs medical attention. Because of this constant diligence, we realized that Aiden needed intervention in December and needed to go back to UCSF. His shunt had narrowed from 6 mm in diameter to 2.5 mm within 4-5 weeks! We are doing our best, while home, to prepare for his next surgery which will take place at the end of this month. 

This upcoming surgery is called the Glenn Procedure . This operation attempts to divert half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle.

Doctors have told us that babies typically recover better from this surgery than they do the Norwood. Their heart structure is much more stable, and generally, the time period following the Glenn procedure brings a lot of opportunity to hit milestones and be a baby. We are hoping for a bit more normalcy after this procedure.

The last of the three required procedures, the Fontan, is usually performed about 18 to 36 months after the Glenn. It connects the inferior vena cava, the blood vessel that drains deoxygenated blood from the lower part of the body into the heart, to the pulmonary artery by creating a channel through or just outside the heart to direct blood to the pulmonary artery. At this stage, all deoxygenated blood flows passively through the lungs.

It is very possible, however, that Aiden will need to undergo more as he grows. He will undoubtedly undergo other procedures, such as catheters, blood transfusions, etc. throughout his life as well. A lot of people don't realize that his heart is not "fixed" even after he undergoes the third surgery. He never develops a left side to his heart; the right side will continue to do all the work and eventually, it will fail him. This could be in as soon as 5 years or less, or 10, 20 years or longer. When Aiden reaches this point, he will need a heart transplant. Even so, Aiden can still grow, play, laugh and live his life like any other child. He will just have a few watchful eyes on him as he does so. We want to catch the signs of heart failure with ample time to properly care for him and give him the help he needs. 

Needless to say, I am incredibly grateful for the advances in medicine that HLHS has seen in the past few decades. My baby boy is alive today because of these advances. But, of course, there is still more to be done. We need these advances so that treatment for Aiden throughout his life can continue to improve. We need these advances to continue so we can save lives!

We think there is something wrong with your baby's heart...

I remember asking my doctor at my 14 week appointment if we could move my gender ultrasound up to my 23rd birthday. I would only be 17 weeks and 6 days along in my pregnancy, but she agreed, and Brent and I were ecstatic.

June 2nd arrived. The plan was to go to our appointment and then meet my parents for a birthday lunch. We could hardly wait to get to the appointment and excitedly walked into the ultrasound room. We saw our baby's profile right away! And within about 30 seconds, we knew he was a boy. I had been so convinced up to that point that our baby was going to be a girl, so I was very surprised, but so excited. He danced all over the screen and we watched, completely mesmerized.

The ultrasound tech kept working on the scan. Brent and I were so wrapped up in the fact that we were having a boy. I don't even remember noticing the tech get quiet or act as if anything was wrong. We just happily watched our baby on the big screen moving around without a care. Once she finished, the tech handed us the pictures and sent us back out to the lobby to wait for the doctor for the rest of our appointment. We had no idea anything was wrong.

Brent and I looked at the pictures of our baby boy while waiting to be called back again. When we were in the room, we just kept looking at those pictures while we waited for the doctor. We started throwing out some boy names. We imagined what our baby boy would be like. We were those giddy, first-time parents, thrilled to have seen our baby for the first time and in the moment, we could not have fathomed the news we were about to hear.

The doctor walked in, looked at us, and said "We think there is something wrong with the baby's heart." She then went on to say that they were trying to get us in to see Maternal Fetal Medicine but in the meantime, she wanted us to come back to the ultrasound room with a different tech, so they could get a better look.. After a few minutes, the tech said "Okay, this angle doesn't look quite as bad". I think both Brent and I let out a deep breath when we heard that.

About that same time, our doctor had just heard back from MFM. They said that they would have just referred us over to a pediatric heart specialist and that we should head over to the hospital across the street and they would attend to us there.

We left the doctor's office in a hurry. I think I was walking so fast just so I could get there and have them tell us that everything was fine. I didn't really feel worried. I felt that whatever it was, if anything at all, that our baby would be fine, that he would "outgrow" it and maybe need a little bit of help when he was born, but nothing else. Brent later told me that during this time, he had already turned to the internet and found an article about Hypoplastic Left Heart Syndrome and starting reading the first few lines before closing out thinking that there was no way that our baby had that.

We waited for a while at the hospital. I called my parents to let them know we weren't going to make lunch and they ended up showing up to the hospital with pizza. We were starving and tired so this was such a tender mercy after such a long day.

After about an hour, we were called up and another tech started the scan. She let us know before she started that she was not a chatter during ultrasounds and wouldn't be speaking. So, we sat in silence, alone with our thoughts. She spent about 30 minutes looking, and said the doctor would be in to talk to us and that he might want to take a look himself. We waited another 30-40 minutes or so.I still wasn't feeling too worried. Looking back, I think it was because I had no understanding of congenital heart defects. I had no idea that it was even possible to be born with a heart like Aiden's. I wasn't worried because I didn't comprehend what I do now.

We then met Aiden's cardiologist for the first time, Dr. Womack. He walked in and motioned Brent to come sit next to me on the bed. And then he started talking. He explained to us the basic anatomy of the heart and what a normal heart should look like using a diagram drawn on the back of a piece of paper. And then he showed us our baby's heart. Where there should have been 4 separate chambers, it was clear that there were only 2. He explained to us we could decide between 1. Termination (which we never even considered) 2. Comfort care (letting our baby die after birth) 3. Three surgeries over the course of his first few years of life. He said that the surgeries would not "fix" his heart and that it would be "wise to assume that he would need a heart transplant at some point in his life". Dr. Womack very delicately explained the details of our baby's diagnosis. He wrote down the official name, HYPOPLASTIC LEFT HEART SYNDROME, sent us with the diagram he had drawn with his email and phone number at the bottom and sincerely told us to feel free to contact him with any questions.

Brent and I walked out in silent shock. We tried to explain to my parents what we had just heard; they had been waiting for us out in the lobby. We finally made it to our car. Brent looked at me and said "I think we just need a good cry." And then the tears started rolling. We made it home, crawled into bed, and tried to get some sleep. I woke up with my head spinning, still trying to wrap my head around this new reality. We had officially been introduced into the scary world of congenital heart disease. 

It has been a hard road. And it's not over. This is our life now. CHD is part of our world and it always will be. We are the 1 in 100. Even though the fear has not left, when I look at my family now, I see hope. Aiden is a miracle and fights each and everyday. He is not his diagnosis. He is so much more and if I could go back and tell myself anything on the day we got his diagnosis, I would tell myself that that even amidst the fear and uncertainty, to prepare to feel more love and joy then I have ever felt before.