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.