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.

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?

"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 and asked 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. 

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.

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.
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.