Sunday, December 4, 2016

Open Heart Surgery #3

Life has been busy, but I'm determined to finish out this blog.

We were delayed multiple times before Max finally had surgery. We went through pre-op up until the holding room twice. It was pretty rough. We knew that the reasons for Max being delayed were for other children that were much sicker than Max. In November and December there was a large outbreak of RSV and ICU beds were occupied with those sick heart babies and children. One time we were delayed for a transplant- the ultimate gift of both sorrow and joy. It's all very humbling to see the hospital work and try to take care of so many sick kids and all the while try to schedule necessary and very serious surgeries such as Max's. I ran the gamut of emotions during all of this. I was anxious (I was getting closer to my due date), I was fearful, I was annoyed, mad, grateful, excited (for the idea to finally be done with surgeries for a long time).

Finally, we got the call at the beginning of January that Max had a new date for January 8th. We did pre-op of the third time. It was the third round of blood work, chest x-rays, EKG, meeting with social workers, meeting with the anesthesia team, meeting with the hospital pedatricians, meeting with the cardiologists, meeting with the surgery PAs, talking with Child Life. We questioned every person that walked in the door if there really was room in the ICU and if surgery would really be on in the morning. Each time they said yes. About the 5th time we were told yes, I broke down. It was really happening. My son was finally going to go through the biggest surgery of his short life. His heart was finally going to be "fixed" and life was going to be different, and hopefully better, for him. I cried overwhelmed with anxiety, fear, joy, pregnancy hormones (I blamed them the most!). Because Max was 4, we were discharged to spend the night at home and told to arrive at 6am for surgery. This was a first for us. All the times before we spent the night before surgery at the hospital. We prayed fervently as a family that night. Edgar and I never talked about how much we wanted to say in our prayers. Max is an intuitive kid. He knew he was having surgery, but I don't think he really knew what was about to happen. We talked about it so many times. I explained in very simple terms that his heart needed to be fixed. The surgeon was going to open his zipper and fix everything as best as he could. Then we would stay in the hospital for a while and eventually when everything was all better we would go home again. I was honest, I told him it would be hard. He asked me many times why he had to do this. I just kept telling him it was the way he was born and not to worry because God redeems everything. He said, "Just like after the floods, and Noah saw the rainbow." Exactly. This is your rainbow sweet boy. That night we prayed for everything. We prayed for the surgeon's hands, for his sight, for his strength, for the anesthesia team, for the profussionist, for all of the nurses, for the ICU team, for all of the doctors in charge of his care after, we prayed for a total repair, we prayed for Max, we prayed for God's will. Thy will be done. Thy will be done.

We woke up at 4:00am. We left the house around 5:00am. Max slept the whole way. I fell asleep around the second decade of the rosary while Edgar drove and prayed the entire rosary. We parked and carried Max in still sleeping. We went up the 18th floor and waited to be called back to the holding room. They called us back and it all got started. We signed off on all the paperwork stating we knew all the risks involved. Max had his Texans Battle Red JJ Watt jersey on and he was happy as a clam. He is so brave. Child Life brought him a huge Planes toy. It was the carrier plane named Cabbie. Max was so excited. He played putting his Lightning in and out of the plane. We prayed over him. They gave him the dose of versed (medicine used to ease separation) and he quickly became less aware of what was going on. They carried him back around 7:30 and Edgar and I just sat and watched and cried. It's not normal. It's not normal to watch your kid being carried away without you. You are completely out of control and for the next 12 hours there is absolutely nothing you can do for your child except pray.

We left to stake out our place in the hospital where we would wait. The hospital gives you a pager similar to the ones you receive at restaurants and when it goes off you go back to the waiting room and they will assign you a conference room where the surgery PA will update you with the progress of the surgery. Edgar and I don't typically like waiting in the cardiology waiting room. There are usually a lot of people and you can cut the nervous tension with a knife. We really try to just find quiet places where we can try to find peace. This time we sat in the adjacent Women's hospital in front of huge windows and watched the Houston traffic drive by.

We were paged with updates of exactly when they had him open and he went on the heart-lung machine. The biggest update came around 2pm. This was the update that was going to tell us whether or not he was receiving a full repair or a Fontan.We nervously sat in the conference room waiting to see Mary the surgical physician's assistant. She came in smiling and said that Dr. Heinle was going to go for the full repair. We were in disbelief. She said that he said he had to try. I honestly didn't want to leave the conference room. I wanted to stay right there and wait to see what happened next. We knew from past surgeries to not get our hopes up, but it was hard not to. This is what we had prayed for. He has all 4 chambers of his heart, why can't he use them!? Hours later, longer than the usual update, we were called back again and this time it was a much different update. Dr. Heinle tried to seal the hole in Max's heart, but when they allowed his heart to beat on his own, his mitral valve started leaking large amounts of blood. The full repair was not to be. Mary told us that he was now switching course and going for the Fontan. Mary left the room and we just cried. We talked it all over again and we rested knowing that Dr. Heinle tried and it wasn't what was best for Max. We were at peace because there were no 'what ifs.' By this time is was about 6pm. We ate dinner and waited until we could see our boy. The hours dragged on and we didn't get any updates. Around 8 they said they were finishing up. We went up to wait in the waiting room and they still didn't call us. It didn't dawn on me that something could be wrong. Finally around 10:30pm we were let back to the CVICU. The update was that Max had a hard time coming off of the heart-lung machine and they had to resuscitate him and re-intubate him. He was supposed to come out of surgery ex-tubated because it helps Fontan kids recover faster, but it didn't happen for Max. But there he was, alive, his pulse-ox was well over 95 (a first in his life), and his color looked so good. On to recovery.

Wednesday, June 11, 2014


Summer is finally here and we are just starting to slow down. Max took swim lessons and absolutely loved it. We were fortunate enough to find a friend through church that happens to be a physical therapy student to get Max comfortable in the pool. She also incorporated physical therapy activities to help with Max's overall strength. It was a great combination and we are working on continuing with lessons throughout the summer. Max was out of breath quite a bit, but it didn't stop him from wanting to do more.

Max's sats are slowly starting to trend down. In the month of May it seemed like he was suffering from some sort of virus that was causing him to be breathless and his O2 to drop. But after he recovered from the virus his O2 never came back up. He was holding steady at around 85% oxygen and now he's down to about 77%. Our pediatrician has discussed all of this with the cardiologist and they have decided to move forward with presenting Max's case and setting a surgery date. He will hopefully be presented next Monday and we will know a surgery date. The cardiologist said that it probably will not be in July, so we'll see.

Friday, May 9, 2014

Max's songs

We made a middle of the night ER run Wednesday night because Max had croup and was having trouble breathing. Croup is scary stuff. He was gasping for air and started sweating because he was trying so hard to breathe. He was retracting so bad we were pretty worried and decided to head to the ER. Through all of it, he wasn't turning blue, so I knew he was still getting good circulation but I was praying hard for his guardian angel to protect him. Texas Children's has its Main Campus in the medical center and it also has another location sort of closer to us. We opted to not go to the Main Campus because we've witnessed how crazy their ER can be. It was a wise choice because we were in and out of the ER in about 2.5 hours. They gave him a steroid, some medicine, took a chest x-ray, and we were on our way. The ER doctor was incredible and our nurse was AMAZING. I just can't say enough about Texas Children's. It blows me away every time. On the way home Max randomly started singing these lyrics from a Ryan Stevenson song:

Jesus, I don't want anything coming in between you and me.
Jesus, it doesn't matter what I have to go through.
I'm holding nothing back, nothing back from you.

Ironically, that song also talks about a broken heart. This is the third time we've either left an appointment or a procedure and Max breaks in to song. After his catheter in December he started singing:

Jesus loves me! This I know, 

For the Bible tells me so.
Little ones to Him belong; 
They are weak, but He is strong.

After our appointment in February, he started singing these lyrics from Colton Dixon:

If I had no voice, if I had no tongue
I would dance for You like the rising sun
And when that day comes and I see Your face
I will shout Your endless, glorious praise.

At this appointment we were fully anticipating that the doctors would schedule his next surgery. But at the end of the appointment, Dr. Kyle told us that he looked better that day than he did six months ago in August. He said he had no medical explanation for it. Surgery has been put off and we don't have to go back until this August. 

Thursday I was pretty tired from basically pulling an all nighter, but I kept thinking about all these songs that Max sings. He inspires me so much. It could be that this is all coincidence, but I choose not to look at it that way. God is in complete control of Max's life and all of his circumstances. This I know for sure. And God is constantly winking at me and sometimes smacking me in the face to remind me to just let go and TRUST. 

Sunday, May 4, 2014

Max turns 3!

Dear Max,

I just can't believe it. You are 3! We celebrated with a lot of friends and family, a bounce house, pizza, and a Lightning McQueen cake. You had so much fun. In the past, you didn't like bounce houses much but you were able to get in there and bounce before all your guests arrived and you decided that you loved it. I even went down the slide with you!

You amaze me everyday, Max. You love to play with your cars and with your blocks. You build intricate race tracks, houses, and towers. You love to play with legos and build all kinds of imaginary places and cars. You go to school two days a week and you absolutely love it. Your teachers say that you play so hard that you are always the first one to go down for nap. Must be nice for them because you don't want to take naps for me anymore. You absolutely love to sing and dance. You can sing "Life is a Highway," "I want to see you be Brave," and almost ALL of the songs from Frozen. What I absolutely LOVE about you, Max, is how thoughtful you can be. You often tell me without prompting things like, "Thank you Mom for cooking dinner," and "Thank you Mom for my party. It was a lot of fun." It melts my heart. You also tell me that you love me to the Milky Way and back because that seems farther than the moon. Such charm! Sometimes you get frustrated and yell and scream when I put you in time out, but you always end up telling me that you love me. You love to play with Clare. You share a room with her in our little house and I love listening in on your conversations before bed. One day when Clare was sad about school, you told her that you loved her and who cares what other people say. I was so proud! When Clare is at swim practice, you don't even want to play on the play ground because you want to watch sissy swim. You sit patiently by the pool and cheer her on. You ask me all sorts of silly questions like, "What if you had 5 arms mommy?" and I just have to laugh.

Recently you asked about the big scar that runs down the front of your chest. I told you it was your zipper because sometimes doctors have to open it and look at your heart. You were so brave when I told you that. You asked me why they just couldn't use the machine (the echo cardiogram) to look at your heart. Such a problem solver! We haven't talked about your upcoming surgery this year because I don't really have the words to tell you. The truth is, I'm not sure I'm as brave as you Max. You are becoming so much more aware that there is something different about you, but you never seem to let it stop you. You always want to race and you run and run your little lungs out. It really inspires me.

Mr. Man, I love you so much. You inspire and push me everyday. You are perfect inside and out, and I can't wait to see what the next year brings!



Thursday, January 2, 2014

Heart Catheter #3

Max was scheduled way back in September for a cardiac MRI and a heart catheter in preparation for his third surgery. Because of a pretty continuous ear infection since that time, it was pushed back until December 30th. Not wanting to push it back any more, we avoided the world 2 weeks prior to the procedure which meant Max missed the last week of school and we skipped out on the big family Christmas gathering. We still had a very joyful celebration with Edgar's parents and brothers and with my parents.

Like crazy people, we decided to move Max from his crib to a bed and we moved Max in with Clare for the next 6 months or so until we can move the boys in with each other. We decided to do this a couple of days before his procedure. What can I say? Cabin fever will force you to start tackling those house projects you've been putting off! Needless to say, the night before his procedure was really interesting and I think he finally went to sleep around 10:45. (He went down around 8:30!) I couldn't sleep at all. We got up at 4am and were out of the house by 5am. Houston traffic is awesome at that time (ha!) and we checked in at 5:55am. Max slept the whole way there. He woke up in the MRI waiting room and we read some books and watched some cartoons. He was incredibly happy and his mood gave us a lot of peace. We were called back around 6:30 and all the pre-procedure questioning started. The Cardiovascular Anesthesiologist said we were only going to do some light sedation for the MRI. When we pointed out that he was going on to the Cath Lab after this, the Doctor quickly said that light sedation is not what we are going to do and he was glad we said something. Can I get you some coffee doctor? They wanted to start his IV before he went down and Edgar and I said no. Max is notoriously a hard stick and I didn't want the trauma of trying to poke him and then getting him to take the mask with the anesthesia. (He has 9 pokes on his body where they tried to get the IV! He came out with two open lines on his feet. Momma and Dad know best) After some convincing, the doctors agreed and decided to do all of that once he was asleep. They gave him versed to ease the transition and then got Max to put the mask on. We were there for all of it and even with the versed, he was crying with the mask on while Edgar held him so he wouldn't fall off the bed. It was pretty emotional for both of us, but I wouldn't have done it any differently. We walked out in tears and went to go check him in for the catheter and wait. Although we've done this a lot, it never gets any easier. We sort of know what to expect and we know the things we need to demand (like the IV situation) and this time around we know that we need to make sure the doctors know exactly what the plans are for the day.

We signed paperwork for the Cath and then checked in on the 17th floor with the Heart Center. We waited in the pretty plush (full kitchen with meals provided, reclining seats, board games, books, magazines, TVs, etc., basically anything to distract you from what your child is going through) heart center waiting room for a little while, but it's hard for Edgar and I to sit there. Families are going through so much and you can feel the emotion and nervous tension. One very young couple was facing the reality that there was not much the doctors could do for their daughter. Most of the time when I'm in the waiting room, I just watch and listen to other people and just pray. It takes a lot to not just sit there and cry all day. Sitting there makes you realize that what Max is going through is nothing. We're not faced with the suffering that other families go through, and Edgar and I constantly remind ourselves that we don't want to forget for a second all these moments in the hospital.

Our cath Doctor met with us and told us the all the risks and her plan for the catheter. The major goal of both the MRI and the catheter is to see if they can patch the hole in Max's heart and give him full function of his heart. Up until now, they haven't been able to get good enough pictures of the hole. Dr. Heinle looked at it both times during his last two surgeries, and last surgery he almost went for it, but then decided not to. So there was a lot of hope with these procedures. Unfortunately, after the cath, the doctor didn't have much to say which leads us to believe that she wasn't able to see the hole either.

The MRI and the cath took about 7 hours and then Max was in recovery until about 7pm. We spent the day chugging coffee, walking the hospital, and reading (No time like the present time to start Pride and Prejudice!). Edgar wanted to play hide and seek in the hospital, but like a responsible adult, I declined his invitation. He did, however, not turn left for most of the day which led to some pretty hilarious entrances and exits from elevators and doors. (Zoolander has a very real and lasting impact!) We only made fun of a few residents. They keep getting younger and younger. Cute. Then Edgar discovered Fifa '14 on the iPad and he was gone. Oh well, back to Mr. Darcy.

It was a long day. We both felt a lot of peace which can only be attributed to all of the prayers. These days are supposed to be really stressful, but we didn't experience any of that. Our cardiologist called us from his vacation (!) to check in with us and tell us that he's hoping to present Max's case within the next couple of weeks and we'll discuss it in February. It seems like a long time to wait, but I'm grateful that his surgery will more than likely be past flu season. Thank goodness. This next surgery will be rough, but I can only hope that he will recover quickly and all of this will be behind of us. We've had to sort of regain Max's trust because all he knows was that he was in pain and why would we do that to him. He told me that he didn't like it and that his boo boo that he got in the big hospital hurt him a lot. Sad. I just keep telling him that it's only going to make him bigger and stronger. He's so brave.

Thursday, September 12, 2013

Max goes to school, and a health update

It's been a while since I last updated and so much has happened. Max turned 2 in May. We celebrated at home with family and a Lightning McQueen cake. Max was thrilled. At the time, he hadn't even seen either of the Cars movies, but he knew he loved Lighning McQueen. Fast forward to now and he has two Lightning McQueen shirts that he rotates wearing almost every other day, shoes, a backpack and a lunch kit. He also has Lightning stickers that he puts all over his legs almost every day. So the jury is still out whether or not he likes Cars.

Max started school this week and I was absolutely amazed by him. Being in the shadow of Clare, I guess I never realized how social Max can be. He introduced himself to almost 5 kids as we were walking to his class. He went right into his room and when I kissed him good-bye not a tear was shed. His teachers told me that he was encouraging other kids in the class that were crying by telling them, "Don't cry! It's going to be alright." What a sweetheart! I think he would go to school everyday if he could, but I still love having him around on the three days he doesn't go. We spend our time running errands, going to the library story time, and playing around the house. He loves to build with his blocks and we chase each other pretending we are racing cars.

Before school started we went to see Dr. Kyle for a six month check up. Max did great with all of his tests (ekg, echocardiogram, etc.) He even had to run around the office to see how much his blood oxygen desaturates when he's active. His normal blood oxygen is around 85. When he runs it drops to 70. As a mom, it's a little alarming because he shows physical signs of desaturation. His lips become very blue. His fingertips become cold and of course he is breathing really hard. It was reassuring to be able to show Dr. Kyle and have him look me in the eye and say, "That's completely normal, for him." The only hiccup for the appointment was that his blood pressure was high. We followed up the following week with the pediatrician and it was back down to his normal. (Little buddy was anxious during his appointment!) Max definitely had a lot of questions during the appointment this time as his vocabulary has exploded in the last six months. We were looking through his photo book once and he saw a picture of him riding around the Cardiology floor in a wagon and he said, "Oh. That's when my heart was hurting." (He was 10 months in the picture) I guess I knew his questions were coming, but I hadn't prepared what I was going to say to him or how much I would tell him. I just kept reassuring him that his heart is special and everything is going to be just fine.

Today I received and e-mail from Dr. Kyle updating us about his meeting with Max's surgeon. He said they are ready to start the pre-surgery work up. The whole process could take weeks or even months, so nothing is going to happen soon. He also made it clear that they are going to open his heart during surgery to see if they can fix everything and give Max full function of his heart, but more than likely it won't be possible and he will have a Fontan (or use of only the right side of his heart). So basically, it's going to be a long complicated surgery.

For whatever reason I took this pretty hard today. It's not new information. We have always been told that more than likely he would go the Fontan route, but there was always this small sliver of hope. I have held on to that hope since the day Max was born. It was hard to read those words today. On paper. So permanent and so final. I've prayed for total healing even when it seemed, in my mind, outrageous to do so. It sounds insane, but I struggled to ask God to completely heal my son. Why me? Why us? I don't need a miracle to believe. I can just trivialize all of this and put it in a neat box in the depths of my mind. I can simplify it and act like it's just one more small hurdle to climb over on the road of life. That's pretty easy to do. Relying on myself is easy for me to do. But it's not what I need. I need to be humbled enough to not just ask for God to heal my son, but to beg for healing. I need to be humbled enough to say to God, take all of it. Take my fears. Take my anxiety. Take all of it and quit allowing me to try to just rely on myself. I can't do it. Faith is humility. Faith is trust. I need to be humbled enough to trust.

Monday, November 19, 2012

18 months!

Dear Max,

I can't believe you're 18 months and about to be a big brother! You are finally walking, running, throwing, and dancing ALL the time. You are an absolute joy. (You're currently under my feet and under the computer desk chair hole collecting your bouncing balls to throw them all over the kitchen) I'm not sure you understand entirely about being a big brother soon, but when I ask you where the baby is you either point to my big belly or you point to your belly. Silly. You also carry around one of Clare's baby dolls and take care of "him." You rock him in the glider in your room, you feed him a toy bottle, and you push him in Clare's baby stroller. It's pretty sweet. You have several words: Mama, Dada, ball, foo ball (football), ba ball (basketball), dog, NO, hi, and bye. Compared to Clare, you are my snuggle baby. When I hear you are awake in the morning we usually spend 15-20 minutes in your room rocking in the glider. You put your head on my shoulder or my chest and we "talk" and sing together. Precious moments. You still wake up sometimes in the middle of the night and I'm way too tired (and pregnant) to put you back to sleep so you usually get to spend the rest of the night in our bed. You go right back to sleep and like to be really close to me!! Your favorite foods by far are fruits although you usually eat whatever we give you. You love dum-dum lolly pops (a luxury your sister NEVER enjoyed at 18 months) and request them throughout the day although you don't always get them. You have 11 teeth including all of your molars, but you're missing your teeth in between your fronts and the molars. Funny. You absolutely love playing with Clare. You love dancing with her and playing puppy with her. You sometimes like to take whatever she is playing with and run away with this look on your face that seems to say, "Did she see me!?" She has learned to distract you with another toy to get back what she was playing with. When we drop her off at pre-school you usually let out a little cry because you get sad that she's not going to play with you throughout the day. You're an excellent napper and usually sleep between 2-3 hours a day. When we go to the park you love to swing and look in the sky for airplanes. You like sliding, but only when Clare goes with you. You also like playing in the mulch, dirt or sand at the park. Trains and cars are probably your favorite toys. You like to line all the trains or cars up in a row and then move them along the table or floor. You also like building with blocks. Recently you learned to give kisses and sometimes, not always, you walk around to the whole family and give big kisses on the cheek while you say, "muah!" I love it. We really like to go to toddler story time on Wednesdays and you sing and dance with all the other kids. I finally took you for your first haircut (because Daddy finally allowed me) and you were so good. You sat very still and got a very big boy hair cut. It reminded me that you are now a toddler and no longer the little baby I wanted to hold all the time.

Max, time has gone by so fast with you. I'm actually so grateful it took you so long to walk because that meant that I could still hold you and make up for all that time your spent in the hospital and I couldn't hold you. You are so strong and have taught me more about life than I ever thought I could know. You are growing and learning and I almost forget that your precious heart still needs to be fixed. You make it so easy to forget.  I love you, Max.