Wednesday, March 30, 2011


I have 4 more days with my angel before she gets her heart fixed! I am trying not to think about it, I get all teary eyed when I do. I am trying to enjoy every moment I have with her. We have been on walks all week. We go for about an hour, it's the only thing lately that seems to sooth her. She has not been wanting to eat and screams, yes screams, when we put the bottle to her mouth. I have never heard her make those noises before. Sometimes she starts screaming for no reason! I am going to give it the rest of today and tomorrow and if things don't improve I am going to take her to the Dr. She doesn't have a fever but I'm thinking maybe her ears are bothering her. I really have no idea! I am crossing my fingers that she is just being stubborn because if she is sick it could delay surgery. Ms. Cheryl came over this morning for a weight check and Brooklynn has gained 2 oz since last week. She is now 8lbs 10oz on her scale. She has been growing in length and is now 22 inches!

Last weekend we were able to meet several families with D.S. babies. Many of the children there also had to have their hearts repaired. I found that to be extremely helpful. We now have an idea of what to expect. I wish that this is still something we didn't have to prepare for but I can't change that. I am so ready to just enjoy my baby with a healthy heart!

Tuesday, March 22, 2011


Today we had our last visit with Dr. Sapire at TCH until after surgery. Our visit was ok, not great, but ok. She has gained an ounce in two weeks. On their scale she is 8lbs 4oz. We were hoping for a bigger gain but it's not backwards. Brooklynn just feels so heavy these last few days. She had another set of chest x-rays done and they looked good. The medicine is limiting the amount of blood that is going into her lungs. The good news is that she is stable and healthy for surgery. She will be admitted April 4th and the surgery is April 5th. I originally thought the surgery lasted 8-9 hours but if there are not any complications it could be 4-5 hours. That was a big relief for me. Two weeks from today will be her "heart day" which I know we will get to celebrate every year! I just wanted to thank all my family and friends for your support. I am so overwhelmed by the love I feel from others. Here is a 3 month picture taken by our dear friend Heather!

Wednesday, March 16, 2011



Brooklynn will get her heart fixed April 5th, she will be admitted April 4th. I have jumped up and down with joy and have fallen to the floor and cried with fear. Emotional rollercoaster. I spoke with the nurse this morning and the ICU is booked. They have moved other surgeries around to make room for her. I have dealt with denial, that this could not be happening to me, my child, or my family. It lead to anger from the feelings of grief and inexplicable loss that I didn't know how to explain or deal with. Now I am powerless. I can not change what is happening and it is very difficult to accept. It is extremely hard to be forced to rely on the judgments, opinions and recommendations of others. Even though it does not seem possible, good things will happen each day. I am still mad at God but now asking that he doesn't take her from me now. That would just be mean.

We had an awesome week so far. We had a great visit with Adam, Beth , Laura and Ben. The boys got to go play golf while us girls girls had Brooklynn's 3 month pictures. Heather takes the most amazing pictures! Then we had Tommy's brother Billy and his family come. We had a blast playing with Max, Olivia and Georgia! Tommy heated up the pool to 95! Here on some pics!

Thursday, March 10, 2011

We have made it home from TCH. We met with the surgeon, Dr. McKenzie. He seemed very knowledgeable. He went over every last detail. He explained everything they plan to focus on once they open her chest. They will go through the breast bone. After surgery, she will be in ICU for 4-5 nights and then moved to a "normal" room for another 4-5 nights if everything goes as planned. One major complication, which he said was very uncommon, would be that they could put a stitch on a certain area of her heart which would require a pace maker for the rest of her life because it would cause her heart to beat slower than it should. She will need at least one blood transfusion. She is o+. Tommy and I will donate our blood for Brooklynn. We are now waiting for the scheduler to call to set the date. Dr. McKenzie has said the end of March or beginning of April will be the first open time. Once again, we wait.

Sunday, March 6, 2011


We are home at last and we already miss Nana! Brooklynn has grown so much over the last week. She smiles more and has started to grab her toys. She will be 12 weeks Tuesday, I can not believe how fast time has gone. The last couple of days have been rough. She ate 17 oz Thursday, which is the most she has ever eaten, but since is back at 10 oz. She has started to projectile vomit...it can go really far =) She has been sleeping a lot. She eats and gets so tired. Her eyes turn red and she fights the sleep. We go to the cardiologist tomorrow morning. Although I do not think we will learn anything new but hopefully a weight gain. We see her surgeon on Thursday. In his opinion she is ready for surgery since she has not gained a significant amount of weight. She has gained 1/2 lb in 12 weeks. I love her more than anything in the world and if I could take her place and take the pain away I would do it without question.

Wednesday, March 2, 2011



Brooklynn and I are having a great time in Arlington. My mom and dad have really enjoyed having us and it is also nice to have someone take care of me too. We really miss having our families around. Tuesday Brooklynn will be 3 months old! We are ready to get home and see daddy though! I was suppose to wait for a surgeon at Texas Children to call me but I thought I would go ahead and give them a call. My mom always tells me "the squeaky wheel gets the grease". With that being said Brooklynn will have her 1st consultation next Thursday with Dr. McKenzie. I am so excited but I find that the tears build up. They are both happy and sad tears. I have to enjoy every moment and just take one day at a time. Things could be a lot worse.