Friday, June 26, 2009

10 Pounds and Fortunate.

No, Bennett does not weigh 10 pounds but that's the magic number we are waiting for. We saw the cardiologist today and once again Bennett is doing great! He weighed in at 8 lbs 9 0z at the cardiologist and 8. 12 at the pediatrician today (don't think the lady at the cardiologist weighed him correctly) but whatever, he's gaining.

The cardiologist was pleased with his weight but would like to see him pack on more of course and quickly so we will be fortifying his milk to increase his caloric intake. He said once he reaches 10 pounds he would like to go ahead a schedule the surgery- when he said this my stomach flipped! Today was the first time I felt EXTREMELY nervous thinking about Bennett having surgery. For some reason I haven't thought much about it until today when the doctor said it won't be much longer. While the doctor was talking I was looking at him but could only picture Bennett hooked up to numerous machines and tubes and I felt a little panicky! Poor Bennett has no idea what is coming his way and I know he needs it but the thought of him going into the hospital to have open heart surgery is terrifying. I've seen the pictures of other babies that have gone through this so I feel some what prepared in that aspect but it's still scary to think about.

So we see the cardiologist again at the end of July, unless Bennett starts to become symptomatic. By then he should be 10 pounds and if he gets to 10 before the end of July I will call and they will go ahead and try to get us in with CHOP. It will then depend on CHOP and their schedule, so we could be looking at anywhere from 2-4 weeks from the time we schedule it. I'm thinking the end of August. We are also hoping to get a particular surgeon, "the best"-we've been told so we will pray that he is available at the time of surgery.

The pediatrician visit went well, she thought Bennett looked great and she worked on getting that stubborn umbilical cord off! It's still on there!! His tear ducts are still a little goopy so we will continue with the ointment and hopefully they will clear up soon. She also prescribed Axid for his possible reflux-GRR! I used to sell Prevacid and both girls were on Prevacid so I am totally comfortable with this medicine but I just knew this doctor was conservative as far as drugs go so I didn't argue with her and we will try it out. He's not spitting up or crying while he feeds just arching some so that's why I didn't push it. We'll see if it even makes a difference.

I've realized how very fortunate we have been with Bennett. My pregnancy had no complications, his birth had no complications, no NICU, so far he is not showing any signs of heart failure, he is eating well and gaining weight- no feeding tubes, no oxygen, nothing. I know many of these babies with Down syndrome and heart defects do not always have an easy start and we are just so thankful to God for the way things are going for Bennett so far. I know it could be much worse and I feel for those that are going through that or who have gone through it in the past. I've experienced both ways- having a sick child in the NICU (Ainsley) and a totally healthy child with no issues (Harper) so I've learned to not take it for granted when things are going the way the are supposed to even with the Down syndrome and heart defect that Bennett has.

Having these 2 appointments today and getting a good report was perfect because tomorrow we are off to VA to see my family and my sister whom I have not seen for a year!!! She and her family live very far away and I am so excited for her to meet Bennett and to visit with her family. Ainsley is very excited to see her cousins, Micah and Ty so I will be sure to have plenty of pictures to share when we return. I hope everyone has a great 4th of July next weekend!


  1. I'm so glad to hear that Bennett is doing so well. Have a GREAT vacation!

  2. PRAISE THE LORD!!! Awesome news, Adrienne!! I'm so glad for you! Listen, you have a wonderful trip....I'm sure the girls and B will do great! Take lots of pics and enjoy!!

  3. As an experienced mom told me before Eon's surgery, "Heart surgery is hard, but not having the option for heart surgery is unthinkable." I found that thinking about, and waiting for, surgery was the worst. The actual day of it and recovery were so much easier. I think it's because we don't have the grace for things until we experience them. Hugs to you! You and Bennett are doing GREAT!

  4. Glad the appts went well & I hope you have a good time w/your family. I haven't seen my Mom since Sept 2007 & so she hasn't seen only pics of our new addition CARLY. I miss home alot. Anyway will be praying for the Heart Surgey & I know if it was me I would be worried. Remember the Lord is there always. Prayers & HUGS :) Bennett is so cute.

  5. Glad he's doing so well! Have a wonderful trip and enjoy your family!

  6. That is wonderful that Bennett is doing great. With fortified milk, he ought to be 10 lbs in no time, lol.

    I did a double take when I read that you are hoping to get a specific surgeon. Don't hope. Insist on it, schedule around it, pray about it, do what you need to do to get with whoever you are convinced is the best surgeon for Bennett. This is OHS! I am not trying to freak you out or anything but this is the most important doctor you are going to be choosing, and it is your choice to make.

  7. I'm glad Bennett is doing so well! I can't imagine preparing for such major surgery. I will be praying for you over the next few months.

    I hope you have a great time visiting your sister. Sisters are the best!

  8. So glad that the appts went well!!!


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