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:
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.

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.

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."

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.

Wednesday, November 2, 2011

Getting closer to surgery #2

Monday was Halloween and of course we celebrated with a doctor's appointment. (Last week was the first week in 11 weeks that we didn't have a doctor's appointment.) Max dressed up as a, drum roll please, doctor. After all, doctors are our super heroes. He was so stinking cute. This time we went to see his pediatric surgeon for a final check up on his circumcision. No, it is not normal to have 4 appointments about a circumcision. It's not even normal to have one, but nothing is normal with my guy.

The great part was that I only had to go to the Texas Children's Cy-Fair location and not all the way to the medical center so it wasn't a huge production. I laughed as the nurse put us in an optometry room without a table. Seriously? Is the doctor going to examine him on the floor? I laughed even harder as I overheard the doctor asking the nurse what he was supposed to do in an optometry room. I feel sorry for these doctors some times. He drove all the way out to the Cy-Fair location, rearranged his schedule because he was preforming a major colon surgery in the afternoon in the medical center, and when he arrives he might as well have been seeing patients out of the cleaning closet because an optometry room has nothing, besides a sink, to help him with his appointment. He walked in just shaking his head and I said, "Happy Halloween!? You didn't know you were going to be an optometrist for the day, did you?"

The appointment proceeded with awkward, dad department conversation, that ended with me probably beet red and the doctor telling me everything was fine. He said that we won't need to see him again. So that's one doctor to check off of our list.

Yesterday, I saw an endocrinologist. I don't have Graves Disease, and more than likely my thyroid issues and heart palpitations are due to postpartum. Good news. I did more blood work and once the results are in, we will proceed from there.

Monday we go back to Texas Children's in the medical center for an echo cardiogram, and an appointment with the cardiology team. I have a feeling that Max will have surgery sooner rather than later. (For insurance purposes, this would be ideal) My feelings are based on him not finishing all of his feeds and his inability to increase the amount he eats. He looks really good, though, so I could be way off. Regardless, I've come to a beautiful place of peace about the next surgery. I had some rocky moments of crumbling with fear, but with increased prayer, peace has taken over.

Tuesday, Max has an appointment with Dr. Patel, his pediatrician. He'll start the RSV vaccination (5 shots at $3,000 a piece. Thank God for insurance) and receive his flu shot.

I'm starting to get back into running. Max can't control how his heart works, but I can.

Sunday, October 16, 2011


God would not send you darkness, dear
If He thought you could bear the light,
But you would not cling to His guiding hand
If the way were always bright,
And you would not care to walk by faith
Could you always walk by sight.

'Tis true, He has many an anguish
For your sorrowful heart to bear--
Many a cruel thorn-crown
for your tired head to wear--
He knows how few would reach Heaven at all
If pain did not lead them there.

So he sends you the blinding darkness,
And the furnace of seven fold heat,
'Tis the only way, believe me
To keep you close to His feet.
For 'tis always so easy to wander,
When our lives are glad and sweet.

Then nestle your hand in your Father's
And sing, if you can, as you go;
for your song may cheer one behind you
Whose courage is sinking low;
And well if your lips do quiver.
God will love you better so.

Wednesday, October 12, 2011


Sometimes I feel like there's not much I can do to help Max besides shower him with love and feed him. One of my major concerns is making sure he's developmentally on track. I was starting to get even more worried because he's 5 months and hasn't rolled over yet. But worry no little man rolls. Part of the hold up was that he wasn't allowed to be on his stomach six weeks post op. After that, he never liked tummy time. He would cry and scream, which is unusual for my sweet guy. I started reading and researching online how to help him and one suggestion was to put a flat pillow under him to prop him up a little bit. I did that, and within 10 minutes he was rolling over. Needless to say, I'm really proud of him. Besides that, I think he's still on track with most babies his age. I am going to take him to get evaluated by a therapist just to make sure, but the pediatrician thinks he is doing well.

It's little moments like these, that make me really sad I missed all of this with Clare. I now know how time with my babies is really precious and to not take it for granted.

Friday, October 7, 2011

Be not afraid, I go before you always...

With all of Max's heart issues he did not receive a circumcision when he was born. I really struggled with whether or not go through with it or not. I consulted friends with boys to make sure everyone was still doing this. I talked to Dr. Bree and she gave me stats about the different races and trends with circumcision. Ultimately, the argument that made the most sense was that it was a lot easier to do it when they are younger and you would hate for him to be 12 and asking to have it done. We were concerned about putting him through one more thing, but our cardiologist suggested that this would be the best time. He referred us to a pediatric surgeon to have the procedure done. The pediatric surgeon came out to the the Cy-Fair Texas Children's location and we met for a consultation. He said that this would be pretty routine and he had already spoken to our cardiologist about having it done. It was a Monday and he said that we could get it done Friday at a outpatient surgery care center. The outpatient center refused to allow the procedure with all of Max's conditions, so we waited a week and were scheduled for a Friday at pediatric surgery at Texas Children's. Friday came and we made our way down to Texas Children's. Max had to be NPO (Latin for nil per os or nothing by mouth) after 11pm and the procedure was at 1:00. The pediatric surgeon asked us before the procedure if we were nervous and I said, "Well I'm always nervous when it comes to this little guy." The surgeon said he wasn't nervous at all. Famous last words. We waited for about 30 minutes and to be honest I was second guessing everything. I was a mess. Finally the doctor came out to the waiting room and said everything was great and that Max was a little upset, but he should be good. Then I could hear my sweet boy screaming. A little upset!? It was the worst screams I have ever heard from him and my heart sank. Why? Why did I put him through this? I took him from the nurse and he was inconsolable. I thought that feeding him would help, but he refused food. We couldn't stay in the waiting room because he was disturbing everyone around. We decided to go outside to try to calm him down before we drove home. That didn't seem to help either. Finally, I decided that maybe we should just try to drive home. Edgar was in a separate car because he left from work to meet us. Max cried the all the way home. When we got home, as we were taking him out of his car seat, we noticed blood on his shirt. We rushed him back to the changing table to check his diaper and as we laid him down I could see the blood through the diaper. What was going on? We opened it and he was covered in blood. Not just a little. A lot. I was terrified. I began shaking and I didn't know what to do. I kept saying, "Who do we call!? Who do we call!?" I ran to the computer to look up the surgeon's number and Edgar came behind me and said, "Let's just go up to the pediatrician's office since it's right around the corner." We didn't even think. We didn't even put him in the car seat. Edgar held him as I drove the 2 minutes to the pediatrician's office. Not the smartest parenting, but we were out of sorts. When we arrived to the office, my hands and legs were shaking. It was the worst fear I have ever had in my life. They put us in the triage room and a nurse came in immediately to help us. She charted as we spoke and went to get Dr. Patel immediately. He came in and looked at Max and then said he was going to call the surgeon. I just began to pray. I was so afraid to lose him and maybe it was an overreaction, but seeing your son bleeding the way he was, terrified me. A friend texted to check on us and I briefly said, "pray everything did not go according to plan." Dr. Patel came back in and said we needed to go back to Texas Children's immediately. I left to get the car seat, and on the way called Dr. Bree. She told me that if it was a lot of blood he might need a transfusion and to be prepared to stay over night. We drove all the way back in traffic to Texas Children's. At this point, Max had calmed down some and his color was good, so I knew that his blood loss would probably not warrant a transfusion. We arrived and the surgeon took him back again. I had to leave. I couldn't sit there and watch my son cry again. I went down to the milk bank to pump. Just as I returned, the surgeon was talking with Edgar and he said that Max had been stitched up. He explained that Max's blood pressure probably rose too high and it busted the circumcision. He said thankfully, a piece of skin fell over the blood vessels and stopped the bleeding, but it wouldn't have stayed like that forever. He was very apologetic and said that normally, at this age, they preform these procedures in the OR with total anesthesia. He mentioned the risks for Max being in the OR and with total anesthesia, so he thought he could do it in office with local anesthesia. He gave us his cell phone number and told us to call him if anything happened. The next morning he called to check in with us. The following morning, Dr. Patel called to also check on him.

I firmly believe that luck of his skin falling over the blood vessels was not luck at all. Once again, the power of prayer rescued us. I felt the Lord's presence when I was a wreck in triage, just after texting my friend. A sudden rush of peace came over me. I looked at Max and he evened smiled.

"Be not afraid, I go before you always. Come follow me, and I will give you rest."

Wednesday, October 5, 2011

5 Months Today

If I had a dollar for every time Max smiled, I'd be a millionaire. He is the happiest baby ever.

Clare has been sick since Sunday, so we've just been hanging around the house. Thankfully Max did not pick up whatever Clare had. I was trying to hard to keep them apart, but he absolutely loves watching his big sister. This afternoon, we went outside to blow bubbles and Max was laughing as Clare chased and popped each bubble. He loves it when she makes faces at him and he loves it when she kisses him. Before he was born, I wondered how I could possibly have enough love for two beautiful children. I now realize that the love for Max is multiplied because of Clare. I pray that we will be able to have more children to share in the beautiful love of siblings.

We go back to Texas Children's November 7th. Hopefully we'll get a better idea of what comes next for our little but mighty Max. He will have a second surgery sometime between November and January. This surgery is called the Glenn and is a setup surgery for the Fontan. Max will only use the right side of his heart.

Although I am amazed at what they are able to do for him, as a mom, it's terrifying. Being home since July has given me the time to bond with him that I didn't have when he was first born. I know my son. I know what makes him laugh, what makes him cry, I know what he smells like, and how he snuggles under my chin. And this is why I'm so scared. I'm so in love with him that I'm afraid to lose him. These months have been glorious, and at times, I forget the reality that my son is faced with. I know that God has a plan for Max. I know that if anything happens he'll be an angel in Heaven and this should give me peace, but it doesn't. So I'm dreading November. I'm dreading what the doctors will tell me. I don't want this vacation to end...