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.
Sunday, December 4, 2016
Wednesday, June 11, 2014
Summer
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.
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.
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.
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!
Love,
Mom
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!
Love,
Mom
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.
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.
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.
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.
Tuesday, September 4, 2012
"But she will be saved through motherhood..."
Ok, I officially feel pregnant! Maybe it's the not so kind reminders I have received from complete strangers asking me if I'm due in a couple of weeks. Ha! How about December? And no, I'm not having twins. Just one precious baby boy and I promise he is not scheduled for arrival until December 7th. I've really had to work hard on biting my sarcastic tongue with those comments. The other comment I have received from people who are familiar with Max's heart condition, but maybe not so familiar with me, is, "I can't believe you're having more children in spite of everything you've been through! Surely, you will be done with having children after this one." To this comment I usually reply, why not have more children?
Ten years ago, if you would have told me that I was going to be a stay-at-home mom with 3 kids by the time I was 28, I would have laughed in your face. I never imagined this path for my life. I always thought I would have a career and maybe the national average of 2.2 kids and that was it. I always thought I would be a working mom. But that was the problem, I was only considering what I wanted for my life. As soon as I wised up to what God wanted for my life, I found an incredible peace and incredible joy.
I can remember the day when I had this epiphany. I was in confession with Father John and I was confessing how angry I was at work and how my anger would often come out at home as well. He asked me very pointedly, "It's obvious that you have been called to be a wife, and it's obvious that you have been called to be a mother, but have you been called to be a teacher?" Well, I don't know. You see, I prayed about my vocation to be married before I had even met Edgar and pretty frequently while we were dating. I prayed about becoming a mother when I was pregnant with our first child, Clare. But I'm not sure that I ever sat down and asked God about becoming a teacher. The next week at school, I informed my principal that I wasn't coming back next year.
I had no vision of this path for my life, but God did. And by saying yes to my vocation as a mother, and not trying to balance anything else, I have received so much joy. Looking back 10 years at the person I used to be, it's a good thing this is where I am. I was so selfish, and self-centered, and arrogant and my pride was always in my way. I am by no means magically cured of all these traits by having children, but I feel like with each child, God is cleaning up the messiness that used to be inside of me. When I continue to say yes to my vocation, by being open to life, God blesses me abundantly and shows me more of the life He intended for me. And it is so incredibly beautiful! So I will continue to be open to more children. After all, why not?
Ten years ago, if you would have told me that I was going to be a stay-at-home mom with 3 kids by the time I was 28, I would have laughed in your face. I never imagined this path for my life. I always thought I would have a career and maybe the national average of 2.2 kids and that was it. I always thought I would be a working mom. But that was the problem, I was only considering what I wanted for my life. As soon as I wised up to what God wanted for my life, I found an incredible peace and incredible joy.
I can remember the day when I had this epiphany. I was in confession with Father John and I was confessing how angry I was at work and how my anger would often come out at home as well. He asked me very pointedly, "It's obvious that you have been called to be a wife, and it's obvious that you have been called to be a mother, but have you been called to be a teacher?" Well, I don't know. You see, I prayed about my vocation to be married before I had even met Edgar and pretty frequently while we were dating. I prayed about becoming a mother when I was pregnant with our first child, Clare. But I'm not sure that I ever sat down and asked God about becoming a teacher. The next week at school, I informed my principal that I wasn't coming back next year.
I had no vision of this path for my life, but God did. And by saying yes to my vocation as a mother, and not trying to balance anything else, I have received so much joy. Looking back 10 years at the person I used to be, it's a good thing this is where I am. I was so selfish, and self-centered, and arrogant and my pride was always in my way. I am by no means magically cured of all these traits by having children, but I feel like with each child, God is cleaning up the messiness that used to be inside of me. When I continue to say yes to my vocation, by being open to life, God blesses me abundantly and shows me more of the life He intended for me. And it is so incredibly beautiful! So I will continue to be open to more children. After all, why not?
"But she will be saved through motherhood,
provided women persevere in faith and love and holiness,
with self control." 1 Timothy 2:15
Wednesday, May 23, 2012
Surgery through pictures
I finally took all the photos off of my phone and put them on my computer. The following is Max's surgery through photos. Ready?
Edgar and Max the day before surgery.
6:00am morning of surgery. He was given Versed to ease the separation and was extremely happy.
Day 1: Post surgery.
Day 2: Recovery in CVICU
Surgical drawing of Max's heart.
Day 3: Discharged to 15
Day 4: Completely off pain medication
Day 5: Wagon rides around the floor
Day 6: DISCHARGED HOME
Tuesday, May 1, 2012
From darkness to light...
"He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of the sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize how beautiful You are,
And how great your affections are for me.
And oh, how He loves us, oh..."
This song, by David Crowder, moves me to tears every time. I think of how heavy life can be sometimes, and I cry because I realize how I often forget God's love for me. I forget how He is always there carrying me, pushing me forward, in times of sorrow and in times of joy and how sometimes I choose to ignore Him. In my thoughts and in my actions, I refuse to look at the heaviness of life and realize God's love and His glory.
Max turns 1 on Saturday. One year. What an incredible first year. I looked back at the pictures of Edgar and I waiting to go back to the OR before my C-section and I find them so ironic. If you were reading a book of our life and you read our sheer excitement and anticipation, maybe you would pick up the clues that darkness was about to set in, but we were completely oblivious. As I think back to all of those moments and how it set our lives on a path that we never imagined we would be walking, I can't help but think that we were made for this. Our faith prepared us for this. This won't be our only encounter with suffering in this life. It won't be the only time that God carried me through a hard time. It's not the last time that God will push me forward. When I think back to all the times in my life that I knowingly avoided suffering, I feel like I missed an opportunity to know myself and therefore, I missed an opportunity to know God.
I can remember in the first 12 days of Max's life, while he was in the hospital, I went through about two days of complete darkness. Two days of questioning everything I believed in. Wondering, how did God allow this to happen? Two days of rejecting every offering of prayer and support from friends and family. Why? What did it matter? I didn't pray. I didn't know what to say. Where should I begin? Should I start with my anger? Should I start with how inconvenienced I felt? Should I start with how I wanted everything to be? How about how lonely I felt? How about how badly I missed my husband? How about how I just want to be home with my family and not stuck in a hospital? Where? Where should I begin?
"'Father, if you are willing, take this cup away from me; still, not my will but yours be done.' And to strengthen him an angel from heaven appeared to him. He was in such agony and he prayed so fervently that his sweat became like drops of blood falling on the ground." --Luke 22:42-44
But the funny thing about darkness is that there will always be light. After two days of darkness I experienced my own personal Easter. All of the sudden my eyes were opened to all of the miraculous things happening around me. People in the hospital that I had never met laying down all of my fears. The power of prayer lifting all the heaviness from my shoulders and carrying my cross for me.
It's because of the darkness that I can appreciate the light. I am now able to look back on Max's first year and rejoice that we were given such a strong gift from God. As Max continues to fight for his life, he continues to improve mine. I am a better mother because I have experienced and will continue to experience my son's suffering. I am grateful that God has entrusted me with Max's life on earth and I am grateful for our suffering.
I have come to believe that affliction is always "eclipsed by glory." God has blessed Edgar and I with another precious life to care for. I sometimes wonder if how Max entered the world will become our new normal. I know that it's not likely, but it's the feelings that I have. If this is our new normal, this is what we were made for. Our faith has prepared us for this.
(For MT and TT-- I love you.)
Wednesday, April 11, 2012
Recovery and beyond
Part 2...
When we were first allowed to see Max after surgery his heart rate was extremely high. It seemed like the whole CVICU was in his room (3 surgeons, 2 or 3 cardiologists, nurses, nurse practitioners). They couldn't figure out why his heart rate was so high and they were all discussing how to proceed. They explained to us that they were going to hook him up to a pacemaker and give him medicine that would momentarily stop his heart and then it would begin again in hopes to trip up his pace and send it back to normal. I'm sorry. You're going to do what!? Then Dr. Heinle (Max's surgeon) walked in and ripped off his surgery hat andasked demanded, to know what was going on. They explained the situation and Dr. Heinle said that it made no sense. The cardiologists were suggesting that maybe Dr. Heinle tugged too hard on the walls of Max's heart and this was why he was having irregular rhythms. Dr. Heinle's response and face will forever be in my mind. He was visibly mad and probably insulted. He came over to the pacemaker, picked it up, set it back down, flipped a switch and all of the sudden the room stopped. Everyone looked at Max's monitor and his heart rate had dropped from 220 to 160. One of other surgeons asked what he did and Dr. Heinle coolly replied, "I sent an electrical current to his heart higher than his pace and it tripped it up." Yeah, you know, just another day at the office. ARE YOU KIDDING ME!? I hope to tell this to Max someday like a super hero action story because that's what the heart surgeons are to me. They are super heroes.
We moved to the 15th floor pretty quickly and Max recovered really well. Within 5 days we were getting discharged and Edgar and I were in disbelief. How did we just go through another heart surgery so quickly? We literally laid in bed that night, stared at the ceiling, and asked, "What just happened?" We were so thankful and we could only attribute everything to prayer.
I took Max to his pediatrician within a couple of days to have a post-op evaluation and I was told he looked great. The following week we went back to Texas Children's for his official post-op evaluation and chest x-ray. Edgar didn't even leave work for this appointment because we were so confident that Max was doing great. The nurse practitioner came in and asked in a very confused voice how Max was doing. I said he was great. Just look at him! He was smiling and talking, and trying to crawl right off the examination table. She agreed that he looked great, but then said that his x-ray showed a very different story. He had developed effusions or fluid around his lungs and needed to be hospitalized again. 5 more days of hospitalization with IV medicine and once again we were heading home. This time, exhausted.
We had two more follow-up appointments in the past weeks and it's hard to determine what exactly is going on. I think one of the difficulties I have is that we have different attending doctors that see us almost every time. Each time we have an appointment we have to deal with another opinion, another personality, another style. It's hard, as a parent, to decipher where we really stand. I think the one thing to focus on is that Max looks great. I love to tell people that he's had two heart surgeries. It's like a badge of honor. Your kid is walking at 6 months? That's cool. My son just had open heart surgery. It trumps everything! (I'm not that bad. Honest.) Our most recent appointment wasn't that great. The attending said that there are still a lot of questions surrounding Max's case. Why did he have such an irregular rhythm coming out of surgery? Why did he develop effusions? He also mentioned that it did not sound like his band was very tight. We asked how that would effect his lungs and he said that was a good question, but if Max is not struggling to breathe it should be ok. He said he's curious to see his next echo cardiogram. I wouldn't be surprised if we have to do another catheter. Again, maybe we're just dealing with an attending that has a different approach or style. It doesn't make it any easier. What does make it easy is seeing Max make new connections everyday. It's easy watching him play with cars and say, "vrooom." It's easy loving him. Easy.
When we were first allowed to see Max after surgery his heart rate was extremely high. It seemed like the whole CVICU was in his room (3 surgeons, 2 or 3 cardiologists, nurses, nurse practitioners). They couldn't figure out why his heart rate was so high and they were all discussing how to proceed. They explained to us that they were going to hook him up to a pacemaker and give him medicine that would momentarily stop his heart and then it would begin again in hopes to trip up his pace and send it back to normal. I'm sorry. You're going to do what!? Then Dr. Heinle (Max's surgeon) walked in and ripped off his surgery hat and
We moved to the 15th floor pretty quickly and Max recovered really well. Within 5 days we were getting discharged and Edgar and I were in disbelief. How did we just go through another heart surgery so quickly? We literally laid in bed that night, stared at the ceiling, and asked, "What just happened?" We were so thankful and we could only attribute everything to prayer.
I took Max to his pediatrician within a couple of days to have a post-op evaluation and I was told he looked great. The following week we went back to Texas Children's for his official post-op evaluation and chest x-ray. Edgar didn't even leave work for this appointment because we were so confident that Max was doing great. The nurse practitioner came in and asked in a very confused voice how Max was doing. I said he was great. Just look at him! He was smiling and talking, and trying to crawl right off the examination table. She agreed that he looked great, but then said that his x-ray showed a very different story. He had developed effusions or fluid around his lungs and needed to be hospitalized again. 5 more days of hospitalization with IV medicine and once again we were heading home. This time, exhausted.
We had two more follow-up appointments in the past weeks and it's hard to determine what exactly is going on. I think one of the difficulties I have is that we have different attending doctors that see us almost every time. Each time we have an appointment we have to deal with another opinion, another personality, another style. It's hard, as a parent, to decipher where we really stand. I think the one thing to focus on is that Max looks great. I love to tell people that he's had two heart surgeries. It's like a badge of honor. Your kid is walking at 6 months? That's cool. My son just had open heart surgery. It trumps everything! (I'm not that bad. Honest.) Our most recent appointment wasn't that great. The attending said that there are still a lot of questions surrounding Max's case. Why did he have such an irregular rhythm coming out of surgery? Why did he develop effusions? He also mentioned that it did not sound like his band was very tight. We asked how that would effect his lungs and he said that was a good question, but if Max is not struggling to breathe it should be ok. He said he's curious to see his next echo cardiogram. I wouldn't be surprised if we have to do another catheter. Again, maybe we're just dealing with an attending that has a different approach or style. It doesn't make it any easier. What does make it easy is seeing Max make new connections everyday. It's easy watching him play with cars and say, "vrooom." It's easy loving him. Easy.
Friday, March 16, 2012
Open Heart Surgery #2
Part 1...
Where to begin? I should start with praise and thanksgiving that we are home and Max looks healthy and is back to his happy self. Thank God!
We checked in to Texas Children's, Monday March 5th at 8:00am. This was a really long day. Max was examined by the surgical team of nurses and nurse practitioners. We met with anesthesia and he had blood work done. The only bump was we were sent to the lab to have his blood drawn and they had a very difficult time of finding a good vein. After one very poor and ill trained attempt, I told them I was done and we would talk with the Heart clinic about other options to do his blood type and screen. I'm usually not one to raise hell and complain, but I wasn't going to subject Max to multiple pokes and lots of tears. We did that the first time around and now I'm wiser. When we were finally admitted to the hospital, the vascular access team came and gave Max local anesthesia to numb the pain and proceeded with collecting the blood they needed. Beautiful!
Tuesday morning began early. We were woken up around 5:45am and we were heading to the 20th floor to prepare for surgery by 6:15am. We met with anesthesia again. They gave Max a dose of Versed which is a medicine that essentially makes Max drunk and eases the separation when they take him back. It might have been inappropriate to laugh in such a serious situation, but Max was hilarious. He was pointing at all the nurses and people that were going by and telling them all kinds of things in baby babble. Apparently he's very talkative when he's under the influence. Interesting. He was very animated and had lots of smiles. Edgar and I prayed over him and by 7:00am he was heading back for his second open heart surgery in 10 months. Heavy. It's not easy to hand your kid over to strangers, even when the strangers are very intelligent, caring, and qualified. Neither one of us cried and we felt an immense amount of peace. Again, the power of prayer absolutely carried us through such a seemingly tough situation.
Throughout surgery we were given updates every hour. The updates are like a roller coaster. Because we were not sure what exactly Dr. Heinle (pediatric heart surgeon) was going to do for Max, we were very hopeful with each update to find out what was in store for our boy. We have prayed and will continue to pray that Max's heart will be fully repaired and healed, but with this surgery it was not the case. It's still not out of the realm of possibility because Dr. Heinle left the option open to make a full repair in another surgery when Max is 3 or 4 years old. He received what is called a pulsatile Glenn. In my very basic understanding, they connected the superior vena cava to the pulmonary artery which diverts half of the blue blood directly to the lungs without using his ventricle. His procedure was somewhat unique because they left the option open for superior vena cava (I think) to be reattached if in a third surgery they felt like they could give Max full function of his heart. In other words they didn't want to fully commit to the Glenn and future Fontan route because after these procedures the only thing left for him would be a transplant. We are so hopeful and we will continue to pray that they can give Max full function of his heart!
By 4:00pm, Max was in recovery and we were able to see him. It wasn't quite as intense to see him this time because we were in awe of how big he was. In his first surgery at 6 weeks old, he was tiny and the cords, wires, and tubes consumed his entire precious body. This time he seemed big and strong and honestly I was a proud momma. There's not much I can do to help heal my boy besides loving him and feeding him. I was proud that I had fed him well! I mean, have you seen his double knees and his chunky cheeks? Awesome.
They extubated him later on that night and it was absolutely amazing to hear him cry. With the tube in his mouth, you could see him cry, but you couldn't hear it because it's placed very near or maybe on the vocal cords and it prohibited him from making a sound. One of the unbelievable blessings of all of this is how I constantly feel like I'm getting to meet my son for the first time over and over again. It's incredible. When you've carried a baby for 9 months, nothing is sweeter than hearing your precious child cry when they are first brought into the world. I have the same feeling each time they bring Max out of surgery. When I heard him cry after they extubated him I cried. It was a physical sign that he had made it. It was a loud sign of how hard his body was fighting. And it was a sign of his incredible spirit. Of course he was mad, but thank God he was. Anything different and there would have been a lot of concerns. Pain is weakness leaving the body. And he cried it out because he is incredibly strong. I'm inspired every day.
Where to begin? I should start with praise and thanksgiving that we are home and Max looks healthy and is back to his happy self. Thank God!
We checked in to Texas Children's, Monday March 5th at 8:00am. This was a really long day. Max was examined by the surgical team of nurses and nurse practitioners. We met with anesthesia and he had blood work done. The only bump was we were sent to the lab to have his blood drawn and they had a very difficult time of finding a good vein. After one very poor and ill trained attempt, I told them I was done and we would talk with the Heart clinic about other options to do his blood type and screen. I'm usually not one to raise hell and complain, but I wasn't going to subject Max to multiple pokes and lots of tears. We did that the first time around and now I'm wiser. When we were finally admitted to the hospital, the vascular access team came and gave Max local anesthesia to numb the pain and proceeded with collecting the blood they needed. Beautiful!
Tuesday morning began early. We were woken up around 5:45am and we were heading to the 20th floor to prepare for surgery by 6:15am. We met with anesthesia again. They gave Max a dose of Versed which is a medicine that essentially makes Max drunk and eases the separation when they take him back. It might have been inappropriate to laugh in such a serious situation, but Max was hilarious. He was pointing at all the nurses and people that were going by and telling them all kinds of things in baby babble. Apparently he's very talkative when he's under the influence. Interesting. He was very animated and had lots of smiles. Edgar and I prayed over him and by 7:00am he was heading back for his second open heart surgery in 10 months. Heavy. It's not easy to hand your kid over to strangers, even when the strangers are very intelligent, caring, and qualified. Neither one of us cried and we felt an immense amount of peace. Again, the power of prayer absolutely carried us through such a seemingly tough situation.
Throughout surgery we were given updates every hour. The updates are like a roller coaster. Because we were not sure what exactly Dr. Heinle (pediatric heart surgeon) was going to do for Max, we were very hopeful with each update to find out what was in store for our boy. We have prayed and will continue to pray that Max's heart will be fully repaired and healed, but with this surgery it was not the case. It's still not out of the realm of possibility because Dr. Heinle left the option open to make a full repair in another surgery when Max is 3 or 4 years old. He received what is called a pulsatile Glenn. In my very basic understanding, they connected the superior vena cava to the pulmonary artery which diverts half of the blue blood directly to the lungs without using his ventricle. His procedure was somewhat unique because they left the option open for superior vena cava (I think) to be reattached if in a third surgery they felt like they could give Max full function of his heart. In other words they didn't want to fully commit to the Glenn and future Fontan route because after these procedures the only thing left for him would be a transplant. We are so hopeful and we will continue to pray that they can give Max full function of his heart!
By 4:00pm, Max was in recovery and we were able to see him. It wasn't quite as intense to see him this time because we were in awe of how big he was. In his first surgery at 6 weeks old, he was tiny and the cords, wires, and tubes consumed his entire precious body. This time he seemed big and strong and honestly I was a proud momma. There's not much I can do to help heal my boy besides loving him and feeding him. I was proud that I had fed him well! I mean, have you seen his double knees and his chunky cheeks? Awesome.
They extubated him later on that night and it was absolutely amazing to hear him cry. With the tube in his mouth, you could see him cry, but you couldn't hear it because it's placed very near or maybe on the vocal cords and it prohibited him from making a sound. One of the unbelievable blessings of all of this is how I constantly feel like I'm getting to meet my son for the first time over and over again. It's incredible. When you've carried a baby for 9 months, nothing is sweeter than hearing your precious child cry when they are first brought into the world. I have the same feeling each time they bring Max out of surgery. When I heard him cry after they extubated him I cried. It was a physical sign that he had made it. It was a loud sign of how hard his body was fighting. And it was a sign of his incredible spirit. Of course he was mad, but thank God he was. Anything different and there would have been a lot of concerns. Pain is weakness leaving the body. And he cried it out because he is incredibly strong. I'm inspired every day.
Friday, March 2, 2012
Let the countdown begin...
It's hard to believe we are officially so close to surgery. One thing I learned is when the doctors tell you surgery will be within a couple of months, they don't really know the exact timeline, but they are just trying to give you a ballpark. They told us initially that Max would have surgery when he was between 6-9 months. Monday he will be 10 months.
A month ago, we were hospitalized for five days because of ear infections. I took Max in to the pediatrician because he had a really bad cold. They took his pulse ox and it had dropped to 65. Normally he's around 75. We were admitted to Texas Children's after a speedy trip to their emergency room and spent 4 nights in the hospital to receive oxygen and monitoring. This was the first time I was disappointed with Texas Children's. The first night the nurse told us she didn't want to bother Max to put the pulse ox monitor on. Later we discovered that the oxygen wasn't even at the right level and was barely on. The doctors couldn't explain why his pulse ox wasn't coming up, and thanks to a respiratory tech (that no one believed initially), they finally got their explanation. The oxygen was barely on. No wonder Max was annoyed at having the cannula in his nose. Nothing was coming out! This prolonged our stay in the hospital and it really made me want to scream, "I want my money back!" As we were being discharged, we were given a surgery date and told to not take Max anywhere if we could. We were told to keep him away from sick people and to really protect him so he will be healthy going into surgery.
Sunday he developed a runny nose and a dry cough. I became pretty worried. We waited 5 weeks and hadn't gone anywhere and now I thought he was coming down with a cold. I've been in constant contact with Max's cardiologist and it seems like he just has allergies. Monday, when we check in for pre-op, they are going to do some checks for infection to be sure that he's clear for anesthesia and surgery.
I am a whole range of emotions. I'm hopeful for surgery and when I picture what needs to be done to fix his heart, I have a lot of peace. I'm praying that they will be able to do a full repair and this will be our last surgery. Of course I'm scared. I'm scared of infection. I'm scared of seeing my little boy laid out after surgery. It's different this time. He's bigger. He's more mobile. He's talking. He has a personality and I know him. He's so joyful and I'm scared to see him in any other way. I'm scared to see my son suffer. When I think about him suffering, my heart is so heavy. I know he will be comfortable with medicine, but it's still more than anything I have ever endured or could even imagine. When your kids go through things like shots or a finger prick, I've felt that. I know what it's like. I can confidently tell them it's going to be ok. The pain is only temporary. I don't have that confidence with open heart surgery. And then I'm brought to my knees because I inevitably think of the Blessed Mother. She watched her son suffer and was supernaturally strong.
A month ago, we were hospitalized for five days because of ear infections. I took Max in to the pediatrician because he had a really bad cold. They took his pulse ox and it had dropped to 65. Normally he's around 75. We were admitted to Texas Children's after a speedy trip to their emergency room and spent 4 nights in the hospital to receive oxygen and monitoring. This was the first time I was disappointed with Texas Children's. The first night the nurse told us she didn't want to bother Max to put the pulse ox monitor on. Later we discovered that the oxygen wasn't even at the right level and was barely on. The doctors couldn't explain why his pulse ox wasn't coming up, and thanks to a respiratory tech (that no one believed initially), they finally got their explanation. The oxygen was barely on. No wonder Max was annoyed at having the cannula in his nose. Nothing was coming out! This prolonged our stay in the hospital and it really made me want to scream, "I want my money back!" As we were being discharged, we were given a surgery date and told to not take Max anywhere if we could. We were told to keep him away from sick people and to really protect him so he will be healthy going into surgery.
Sunday he developed a runny nose and a dry cough. I became pretty worried. We waited 5 weeks and hadn't gone anywhere and now I thought he was coming down with a cold. I've been in constant contact with Max's cardiologist and it seems like he just has allergies. Monday, when we check in for pre-op, they are going to do some checks for infection to be sure that he's clear for anesthesia and surgery.
I am a whole range of emotions. I'm hopeful for surgery and when I picture what needs to be done to fix his heart, I have a lot of peace. I'm praying that they will be able to do a full repair and this will be our last surgery. Of course I'm scared. I'm scared of infection. I'm scared of seeing my little boy laid out after surgery. It's different this time. He's bigger. He's more mobile. He's talking. He has a personality and I know him. He's so joyful and I'm scared to see him in any other way. I'm scared to see my son suffer. When I think about him suffering, my heart is so heavy. I know he will be comfortable with medicine, but it's still more than anything I have ever endured or could even imagine. When your kids go through things like shots or a finger prick, I've felt that. I know what it's like. I can confidently tell them it's going to be ok. The pain is only temporary. I don't have that confidence with open heart surgery. And then I'm brought to my knees because I inevitably think of the Blessed Mother. She watched her son suffer and was supernaturally strong.
Hail Mary, full of grace...
Lord, grant me the grace to get through this.
Wednesday, January 25, 2012
Heart Catheter
This last weekend and this week have been pretty long. Friday, my uncle passed away unexpectedly. He was doing his routine work out at a local pool and he drowned. The cause of death is still pending, and I'm not sure we'll ever find out what exactly happened. I don't even know that I've come to terms with his death. It still seems like it's not real. Sunday we traveled to San Antonio to be with my cousins and my aunt. It was a really hard and long day. I got to experience the business of funeral homes, and I'm not sure I care for it. We could only stay Sunday because we needed to get back to prepare for Max's procedure Tuesday. The funeral was on Tuesday and it was very difficult to not be there.
We arrived at Texas Children's at 6:00am. We woke up around 4:30 and were out the door around 5:30. Max woke up almost every hour the night before. He could probably sense my stress. He was not allowed to eat after midnight Monday. I woke and fed him at 11:30. They called us back pretty quickly. We caught the nurses and doctors up with everything that was going on with Max. He had ear infections the week prior, so we discussed his medication and I told them that his ears were clear as of Friday. Around 6:30 they gave him a dose of versed that was described to us as something that would make him a little "drunk" and would ease the separation. (Where was my dose?) Admittedly, he was really cute. He waved to everyone that walked by and became very smiley. We prayed over him and we handed him off to his anesthesiologist. Watching your baby walk through double doors with doctors is not a great sight, but we held it together.
They call you every hour to update you with the progress of the procedure. They said everything really got started around 7:30 and by 10:30 he was finished. They buzz you on a pager when everything is done and you meet with the doctor in a private conference room to discuss everything. Overall, everything was pretty routine and they collected all the necessary information to prepare for surgery. We went up to the recovery room and Max was awake and flirting with a nurse. He blew me a huge kiss when he saw me and that's when the tears came to my eyes. After 6 hours of surgery and a slight scare that we would have to stay over night, we were discharged and went home.
Today we met with the surgeon and it was a deja vu moment. Edgar and I both agreed that our meeting, in regards to information, was the same as the very first time we met with Dr. Heinle. All the options presented to us required opening Max's heart. Most babies that go through the Glenn operation do not have their heart opened mostly because they don't have all four chambers of their heart. The operation reroutes the blood from his head directly to his lungs. It is a set-up for the Fontan in which Max would only use half of his heart. All the information that the doctors have collected shows that there still is a possibility for a full repair and that's what they are going for in this next surgery. It seems unlikely, but if Max can have full function of his heart, they are going to do anything to make it happen. Dr. Heinle said that a full repair would be very complicated. Not words a momma wants to hear, but it's not the first time we've heard this.
This whole process is an emotional roller coaster. The hardest part is trying to keep a level head and not get too excited when they tell us that they are trying for a full repair. I'm always hopeful, and we have been praying for a full repair, but I also have to wrestle with reality. It's hard. Reality is, they can't tell us with certainty what they are going to do until they open his heart. It's hard to prepare yourself mentally when the game plan is not certain. We just have to continue to pray.
Maybe I'm not really facing and digesting all of this because I can't handle it. And maybe I'm just floating along. I sometimes feel guilty about being so happy in spite of everything. Because that's the truth. I am so happy. I am so grateful. And I couldn't ask for anything different. A friend of mine is facing tougher challenges with a pregnancy. In her journey, they had to meet with a cardiologist for her sweet boy in utero. The cardiologist told them that a lot of times people discover their baby has a heart anomaly and they choose to abort. That is something I truly cannot digest. I think about that a lot.
We arrived at Texas Children's at 6:00am. We woke up around 4:30 and were out the door around 5:30. Max woke up almost every hour the night before. He could probably sense my stress. He was not allowed to eat after midnight Monday. I woke and fed him at 11:30. They called us back pretty quickly. We caught the nurses and doctors up with everything that was going on with Max. He had ear infections the week prior, so we discussed his medication and I told them that his ears were clear as of Friday. Around 6:30 they gave him a dose of versed that was described to us as something that would make him a little "drunk" and would ease the separation. (Where was my dose?) Admittedly, he was really cute. He waved to everyone that walked by and became very smiley. We prayed over him and we handed him off to his anesthesiologist. Watching your baby walk through double doors with doctors is not a great sight, but we held it together.
They call you every hour to update you with the progress of the procedure. They said everything really got started around 7:30 and by 10:30 he was finished. They buzz you on a pager when everything is done and you meet with the doctor in a private conference room to discuss everything. Overall, everything was pretty routine and they collected all the necessary information to prepare for surgery. We went up to the recovery room and Max was awake and flirting with a nurse. He blew me a huge kiss when he saw me and that's when the tears came to my eyes. After 6 hours of surgery and a slight scare that we would have to stay over night, we were discharged and went home.
Today we met with the surgeon and it was a deja vu moment. Edgar and I both agreed that our meeting, in regards to information, was the same as the very first time we met with Dr. Heinle. All the options presented to us required opening Max's heart. Most babies that go through the Glenn operation do not have their heart opened mostly because they don't have all four chambers of their heart. The operation reroutes the blood from his head directly to his lungs. It is a set-up for the Fontan in which Max would only use half of his heart. All the information that the doctors have collected shows that there still is a possibility for a full repair and that's what they are going for in this next surgery. It seems unlikely, but if Max can have full function of his heart, they are going to do anything to make it happen. Dr. Heinle said that a full repair would be very complicated. Not words a momma wants to hear, but it's not the first time we've heard this.
This whole process is an emotional roller coaster. The hardest part is trying to keep a level head and not get too excited when they tell us that they are trying for a full repair. I'm always hopeful, and we have been praying for a full repair, but I also have to wrestle with reality. It's hard. Reality is, they can't tell us with certainty what they are going to do until they open his heart. It's hard to prepare yourself mentally when the game plan is not certain. We just have to continue to pray.
Maybe I'm not really facing and digesting all of this because I can't handle it. And maybe I'm just floating along. I sometimes feel guilty about being so happy in spite of everything. Because that's the truth. I am so happy. I am so grateful. And I couldn't ask for anything different. A friend of mine is facing tougher challenges with a pregnancy. In her journey, they had to meet with a cardiologist for her sweet boy in utero. The cardiologist told them that a lot of times people discover their baby has a heart anomaly and they choose to abort. That is something I truly cannot digest. I think about that a lot.
Saturday, December 31, 2011
Surgery set for January
Dr. Kyle called yesterday and told us surgery will definitely be in January. Max has to first have a heart catheter before he undergoes surgery. The heart catheter will check the pressures in his heart, measure the hole in his heart, and check the flow of blood in his pulmonary artery (and probably other things that I can't remember right now). They will go up through his thigh to preform all these tests. The risk of this procedure is relatively low, but there are still risks associated with sedation. Before his first open heart surgery, they did a heart catheter in which they actually made the hole in his heart larger so his blood could mix better. This time they are only collecting data for his surgery. He will have the catheter procedure done and then he will have surgery a couple of weeks after. I have to take him to the pediatrician for a pulse oxygen check next week and then we should be moving forward very quickly.
The power of prayer has been unbelievable to us throughout all of this and has strengthened our marriage and our family. Starting January 1st, we are asking that you please join us in praying a novena to the Sacred Heart of Jesus. A novena is a powerful prayer that is said nine days in a row for special intentions. We are going to use the following novena:
http://www.prayerbook.com/Devotions/Sacred%20Heart/shojnove.htm#ONE
If the novena is not for you, please be united with us in prayer for Max in any way that is comfortable to you. My original intention was to start the prayer nine days before his surgery, but they could call anytime and I want to make sure that we are prepared.
In our time of struggle, 2011 was an unbelievable year for us. We are so grateful and thankful for the gift of life. We are grateful for how God has revealed himself to us in so many ways. We pray that we can continue to open our hearts to Him. Love is the ultimate healer. It can heal all things. Pray for love. Pray for healing.
The power of prayer has been unbelievable to us throughout all of this and has strengthened our marriage and our family. Starting January 1st, we are asking that you please join us in praying a novena to the Sacred Heart of Jesus. A novena is a powerful prayer that is said nine days in a row for special intentions. We are going to use the following novena:
http://www.prayerbook.com/Devotions/Sacred%20Heart/shojnove.htm#ONE
If the novena is not for you, please be united with us in prayer for Max in any way that is comfortable to you. My original intention was to start the prayer nine days before his surgery, but they could call anytime and I want to make sure that we are prepared.
In our time of struggle, 2011 was an unbelievable year for us. We are so grateful and thankful for the gift of life. We are grateful for how God has revealed himself to us in so many ways. We pray that we can continue to open our hearts to Him. Love is the ultimate healer. It can heal all things. Pray for love. Pray for healing.
Wednesday, December 21, 2011
Surgery within 4-8 weeks
Today was another long day at Texas Children's. Overall Max is doing everything that he is supposed to be doing. His heart has fully grown into his PA band and it's time for the next surgery. Our cardiologist is going to speak with our surgeon and they are going to come up with a date and call us. They mentioned 4-8 weeks, but in reality, it will depend on scheduling.
Funny/Weird moments at Texas Children's:
1) Max was perfectly still during his echo cardiogram. We usually hold off on feeding him a bottle until it's time for the echo to start and then we feed him while the echo tech collects all the necessary data. Most kids are sedated and we have never sedated Max. Our philosophy is to try everything on our end before we have to give him any unnecessary medicine. With 5 minutes left in the echo, and Max is completely still, the tech says, "We usually don't do this, but here's a lollypop to keep him still while I finish." I'm sorry...a what? My kid has just started to eat food and you want to give him candy? HE'S 7 MONTHS OLD! Why don't people ask before doing these things? Crazy. (No, Max did not eat the candy. Yes, I am that mom.)
2) Texas Children's must have some sort of deal with Michael Buble. Every time I've been to the Milk Bank, Michael Buble is on loop while I'm trying to pump. I'm serious when I say that I start to lactate when I hear his voice. Today it was his Christmas Album. Great voice, but I'm a little worn out.
3) Signs in the waiting room and in the patient rooms read, "If you have waited for over 30 minutes, please ask for an update." I did. The update was wrong. We still waited.
4) Cardiologist pointing at Max's chubby legs, "Nice double knees." LOVE. Sorry kid. Ends up, you probably look more like me than you would like.
Funny/Weird moments at Texas Children's:
1) Max was perfectly still during his echo cardiogram. We usually hold off on feeding him a bottle until it's time for the echo to start and then we feed him while the echo tech collects all the necessary data. Most kids are sedated and we have never sedated Max. Our philosophy is to try everything on our end before we have to give him any unnecessary medicine. With 5 minutes left in the echo, and Max is completely still, the tech says, "We usually don't do this, but here's a lollypop to keep him still while I finish." I'm sorry...a what? My kid has just started to eat food and you want to give him candy? HE'S 7 MONTHS OLD! Why don't people ask before doing these things? Crazy. (No, Max did not eat the candy. Yes, I am that mom.)
2) Texas Children's must have some sort of deal with Michael Buble. Every time I've been to the Milk Bank, Michael Buble is on loop while I'm trying to pump. I'm serious when I say that I start to lactate when I hear his voice. Today it was his Christmas Album. Great voice, but I'm a little worn out.
3) Signs in the waiting room and in the patient rooms read, "If you have waited for over 30 minutes, please ask for an update." I did. The update was wrong. We still waited.
4) Cardiologist pointing at Max's chubby legs, "Nice double knees." LOVE. Sorry kid. Ends up, you probably look more like me than you would like.
Monday, December 5, 2011
Friday, December 2, 2011
Physical Therapy
At Max's six month pediatric check-up, Dr. Patel recommended physical therapy for Max to help with his gross motor skills. Although Max interacts socially as a normal baby and his fine motor skills seem to be on track, he is not sitting up on his own or rolling over from his back to his stomach. After calling numerous physical therapy locations, we finally found one covered by our insurance that was able to take us quickly. Initially, I had an appointment with Early Childhood Intervention (state program), but I canceled it when they told me it was going to take at least two months to start services. By that time, Max would be in surgery and physical therapy would not have helped him at all. Our new plan is to take Max to physical therapy once a week at T.E.A.M. Approach. Yesterday was our first session.
Max did really well and only got cranky when he was hungry. We worked on rolling over tummy to back, and back to tummy, as well as sitting up and trying to maintain his balance. The therapist thought that he wasn't really delayed, and that he showed normal development for a baby that is a back sleeper. She did, however, understand our pediatrician's request to build his strength now before his next surgery so that he doesn't get too far behind post op. We were assigned homework and we'll report back next week.
Other than that Max has been amazing. He's started to eat solids. I introduced all the vegetables first and his favorite, like his sister, seemed to be carrots and squash. I started to introduce fruits this week and he absolutely loved it. He would take a bite and make little noises like "mmm." So cute. His breakfast consists of fruit mixed with cereal which puts him into a food coma coupled with a three hour morning nap!! Seriously, I put Max down at 9:30 (half-way through Sesame Street...yes this is how I assess time in my house) and it's currently 12:30. Incredible.
All in all, we are doing really well. We're enjoying the Advent season and preparing for the birth of Jesus. Clare is having fun counting down the days and she loved putting up the Christmas tree.
Max did really well and only got cranky when he was hungry. We worked on rolling over tummy to back, and back to tummy, as well as sitting up and trying to maintain his balance. The therapist thought that he wasn't really delayed, and that he showed normal development for a baby that is a back sleeper. She did, however, understand our pediatrician's request to build his strength now before his next surgery so that he doesn't get too far behind post op. We were assigned homework and we'll report back next week.
Other than that Max has been amazing. He's started to eat solids. I introduced all the vegetables first and his favorite, like his sister, seemed to be carrots and squash. I started to introduce fruits this week and he absolutely loved it. He would take a bite and make little noises like "mmm." So cute. His breakfast consists of fruit mixed with cereal which puts him into a food coma coupled with a three hour morning nap!! Seriously, I put Max down at 9:30 (half-way through Sesame Street...yes this is how I assess time in my house) and it's currently 12:30. Incredible.
All in all, we are doing really well. We're enjoying the Advent season and preparing for the birth of Jesus. Clare is having fun counting down the days and she loved putting up the Christmas tree.
Wednesday, November 23, 2011
10 ways Clare is an amazing big sister...
1) When I have to give Max his inhaler, Clare tells him, "Hold your breath, Max!!"
2) She shares her beloved Oso with Max and shows him how she snuggles Oso. "See Max, I rub his bunny ears and put them in my neck."
3) She prays for Max every night.
4) She makes him laugh by spinning around and falling down.
5) She sings to him "Twinkle, Twinkle" in the car when he is crying.
6) She's sad for him when he gets shots.
7) She tells her grandparents what they should get Max for Christmas. "I know Max wants this. He told me."
8) She is so proud of him whenever we pick her up from school.
9) I can hear her on Max's monitor in the morning telling him good morning and talking to him while he's in his crib.
10) When he still cries, in spite of her singing or making silly faces, she says, "Mommy, he wants you. Maybe you should snuggle him."
2) She shares her beloved Oso with Max and shows him how she snuggles Oso. "See Max, I rub his bunny ears and put them in my neck."
3) She prays for Max every night.
4) She makes him laugh by spinning around and falling down.
5) She sings to him "Twinkle, Twinkle" in the car when he is crying.
6) She's sad for him when he gets shots.
7) She tells her grandparents what they should get Max for Christmas. "I know Max wants this. He told me."
8) She is so proud of him whenever we pick her up from school.
9) I can hear her on Max's monitor in the morning telling him good morning and talking to him while he's in his crib.
10) When he still cries, in spite of her singing or making silly faces, she says, "Mommy, he wants you. Maybe you should snuggle him."
Monday, November 7, 2011
Cardiologist Appointment
Today was a really good day. We journeyed down to Texas Children's for an echo cardiogram, chest x-ray, and an appointment with the cardiology team. Max was a champ and was all smiles to the nurses and doctors. Overall, everything was really positive. His heart is functioning well, he's growing well, and we don't have to go back to Texas Children's for two months. That was the biggest surprise to me. I thought for sure we'd be back in two weeks. But his overall health is so good they're going to continue to let him grow and get stronger. We are backing off of his medicine to once a day instead of twice daily.
The plan is still that he will have two more surgeries: the Glenn and the Fontan. The next one will reroute the blood flow from the superior vena cava directly to his lungs. This will cause pressure to his brain and he will have headaches after the surgery, but eventually his body will adjust and he will be fine. The third surgery would then finish the job of the second, where Max will only use the right side of his heart. The doctors mentioned that there is a slight possibility that they could repair the hole in wall of his heart, near the mitral valve, and switch his arteries in the next surgery and Max would have a total repair, but it's not likely. Part of the problem with this option, is the chords that are connected to the mitral valve are tethered in the opposite ventricle. Thus, fixing the hole would affect the chord and therefore affect his valve. Babies with valve issues eventually need transplants. Successful transplants only last, on average, for 14 years.
It's amazing the amount of confidence I receive every time I go to Texas Children's. It's truly an amazing place, and our team of doctors is amazing.
We were basically told that when Max starts to turn blue, we will have surgery. Estimated time until Max turns into a smurf: months. Thank you for the continued support and prayers. There is so much grace and blessings that are coming out of our little man's journey that I can't help but be grateful for his condition. Weird statement, I know, but there is no other way to describe it.
The plan is still that he will have two more surgeries: the Glenn and the Fontan. The next one will reroute the blood flow from the superior vena cava directly to his lungs. This will cause pressure to his brain and he will have headaches after the surgery, but eventually his body will adjust and he will be fine. The third surgery would then finish the job of the second, where Max will only use the right side of his heart. The doctors mentioned that there is a slight possibility that they could repair the hole in wall of his heart, near the mitral valve, and switch his arteries in the next surgery and Max would have a total repair, but it's not likely. Part of the problem with this option, is the chords that are connected to the mitral valve are tethered in the opposite ventricle. Thus, fixing the hole would affect the chord and therefore affect his valve. Babies with valve issues eventually need transplants. Successful transplants only last, on average, for 14 years.
It's amazing the amount of confidence I receive every time I go to Texas Children's. It's truly an amazing place, and our team of doctors is amazing.
We were basically told that when Max starts to turn blue, we will have surgery. Estimated time until Max turns into a smurf: months. Thank you for the continued support and prayers. There is so much grace and blessings that are coming out of our little man's journey that I can't help but be grateful for his condition. Weird statement, I know, but there is no other way to describe it.
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