Your little girl is going to be fine! I was born with Tricuspid Atresia in 1983, and had surgeries to repair it when I was little. The last surgery (Fontan operation) was when I was 5 and since then I have lived a normal, relatively healthy life. I still see my pediatric cardiologist once a year for a check-up, but every year it's good news :) I am married now, and gave birth to a healthy baby boy 9 months ago. Best of luck to you, keep your head up and stay positive! :) You can email me if you have questions:
Wednesday, August 31, 2011
That is what I asked for when a chaplain came to pray with me today. The saying "the calm before the storm" is one way I can explain today. Brinley completely reached the point that she needed her Glenn. We knew it, the Drs knew it. Surgery went great. No narrowing of her pulmonary arteries as expected so the only repair done was her BDG. She rested last night as expected and today the storm. Everything you see on TV is exactly what I experienced today. Her sats would not stay up and before I knew it she was crashing. Helpless. Eric had just left to head back to WF. Luckily he was still in town when I some how found the strength to call. By the time he had returned she was stable. They now have her on meds to keep her "paralyzed". The more you move, the more oxygen you burn. She needs to keep her sats up and being in this state is the best way they know how to do it. An echo and xrays showed no clots or obstructions of any kind so we are still no sure why she is responding this way. I sang and prayed to her and for her. She IS my sunshine. So I pray that God never takes my sunshine away. Give her strength and bless the hands that touch her to help her heal. I am still waiting to hear her first real laugh, to see her crawl and walk. Janet asked for a picture of her in front of the Christmas tree. You bet she will get one and it will be best holiday card ever. Please pray for her and me. I just ask for strength. Please give me strength.
Tuesday, August 30, 2011
Would it be silly for me to want to celebrate the anniversary of each surgery milestone for Brinley? Personally I feel like you can never have too many reasons to party!!! A celebration of life. Today is another "perfect" day.
Monday, August 29, 2011
Sunday, August 28, 2011
I cried a little bit today. Brin looked so much better today but the have on a sedative to keep her calm. She was not the happy go lucky baby that I am used to seeing. She was this baby that was just "there". No smiles or little conversations that only the two of us understand. She had this blank, sleepy stare that was not easy to see but we are one day closer to surgery so I am thankful for that. Nurses said that sedation would last until Tuesday. She is also been given some Fentanyl for pain. Eric and I always put on this kaliedoscope video for relaxation on for her. It plays soft music and it has these awesome images on the screen. We laugh bc we always say she probably thinks she is at a Pink Floyd concert. Yes, we still try and find ways to make light of the situation. If not we would go insane. Well the routine for tomorrow will be about the same. Eric and I will be at the hospital early to be with her. It is Monday so they should be back to full staff and we will know a lil more about Tuesday. I personally can't wait to see Janet and give her a hug. Sometimes that is all a person needs to feel a sense of peace.
Dr. Callebero (NICU dr) came by and said he spoke with Dr. Tam and we are anticipating her BDG (bi-directional glenn) on Tuesday. I pray she does. No more shunt dependency. That means no more monitoring of fluid intake AKA sleepless nights, pulse ox monitoring daily/ only if we want to and last but not least some kind of normalcy. Look out world, the Rodriguez family may soon be back in business.
Saturday, August 27, 2011
You can hear my heart breaking. I have struggled to understand why and I am past all of that and now I entrust her little life in the hands that God also created to help her heart. The feeling of being helpless is the worst. What do you do when you can't do anything to help your child? I put on this face that I have come so accustomed to wearing. This one of bravery and strength. I cry behind closed doors, by myself so that I don't show my weakness, when all really want to do is scream at the top of my lungs. I will never let this defeat me or us. I will fight for her and my family.
Friday, August 26, 2011
I got so many emails about my last post. All of you that I share my blog with are people I want to read it. Everyone has been SO supportive that words can not express my gratitude. I consider you all friends so trust me if it was you I am friend enough to rip your head off. :) I love you all and want y'all to know it is to none of you. Sorry for the ones that I made doubt your selves.
Wednesday, August 24, 2011
Tuesday, August 23, 2011
Being a mom and a girl in general I think we kind of have sixth sense about other girls. I have always taught Chloe to be nice to others and respect them. She once got in trouble in second grade for telling kids in her class that a little boy liked Hannah Montana. That is the worst Chloe could come up with and she cried forever when I found out. She definitely learned her lesson. She is the type of person that gets her feelings hurt when others are picked on. Anyways there is this girl that really irks me in her grade. As a parent I look at this and just wonder are her parents so naive of her behavior or do they just not care. I have seen her behave and treat other girls in ways, in front of her parents, that some would need to call CPS on me because I will not tolerate it. Ugh.... It is so hard because Chloe participates in a lot of after school activities and we see this girl a lot. Even today on the first day of school Chloe was telling me things about her behavior. It just angers me how parents do not pay more attention to their kids. I told chloe that I know I have always to her to be nice and she takes the high road by walkin away but I am so fed up. It is definitely time for her to stick up to this girl because if I have to get involved I definitely won't be so nice. And people wonder why girls have such bad self esteem when it is our own peers bringing us down. Girls who behave like this have problems of their own and feel the need to bring others down too. Search Amazon.com for self esteem for teens
Monday, August 22, 2011
Sleepless nights have gotten the best of me. I sit here cruising the www and I start to think about how God has touched and intervened in my life in so many ways lately. I will never forget the day we wen to see Dr. Roten for our fetal echo to get our exact diagnosis for Brinley I knew it was something severe. From what the perinatologist was saying I just knew she was going to tell us it was Hypoplastic left heart syndrome but it was the complete opposite. I had read so much on CHDs that I knew exactly what she was talking about. I didn't even cry that day. I knew it was bad but didn't know how bad. Eric cried. I cried for him when we left. I know he was still holding out hope that it wasn't going to be "anything". I tried to tell him but he just kept trying to reassure me. On our drive home Dr. Rotten called me to ask me if my daughter took gymnastics. I thought that was strange but I said yes and then she asked if Chloe had a lil girl in her class named Kenzie. Yes, she did and then Dr. R told me that she has the same diagnosis our baby has. I cried and cried. I immediately got off the phone with her and called Kenzie's mom. God knew I needed them. When I first learned Brinley had a CHD I went straight to a great friend/ archnemesis by the name of Google. A lot of pregnant moms come across the website Babycenter. They have several groups for all kinds of things moms can talk about. The one I went to was "babies and children with heart problems". I put up post in a total panic about what was going on and all the information we were getting from our Dr.s. I got a lot of comments to my post but only one person emailed me. Her name was Dara. She was just what I needed and God knew that. She was also pregnant and we emailed one another about our babies. She filled in the blanks for me about things I had questions about and it was nice to know that I was not alone. You never wish any of this on anyone but at the time you feel like no one will ever know what you are going through. You have to mourn that healthy perfect baby you thought you were going to get. Instead you learn to love and anticipate a totally different PERFECT baby. It took what seems like forever for me to get to that point. I know the exact minute it happened to me. Dara had her son and I had not heard from her in a while. We all know how much time our newborns need. When she did write back her email just turned a page for me. Her son has a different CHD from Brinley but the thing that stuck out the most was how she told me how "normal" it was to have her son home. After that email I got excited again. Don't get me wrong I was still scared but I had hope and faith beyond what I ever could have imagined. Thank you, Dara. The least I can do is let everyone know what you did for me. After Brinley got here. I won't lie about how afraid I was. I had it in my head that we would be going home in a few days with little intervention to her disease. She was doing so good and breathing room air. The next morning my whole life was turned upside down. The surgeon phoned to let us know that our cardiologist had missed something on her fetal echo and her main arteries to her heart (transposition of the great arteries or TGA) were switched and she would be going in to surgery at 3pm. Most of you know what followed after that. A very long and emotional 21 days. The day after surgery was the hardest. To see your child at 3 days old with their lil heart just beating out of her chest is nothing anyone can be prepared for. I had a meltdown. The chaplain that had baptized Brinley came by to see us again that day. God knew I needed her. We prayed and prayed. She knew I was struggling and knew just what to say. If she was not available, she made sure another chaplain came by each day to check on us. The day they came to close up her chest a chaplain just so happen to with us praying. They had to ask everyone to leave the PICU. They do this procedure right at the babies beds. The chaplain never left Brinley's side. The Dr's allowed him to stay with her he would come out a give us reports in the waiting room. God knew I needed him. While in the waiting room I met another hand of God. Another family was there with their Brynlee. Heroes in their own right, the Hogan's. Hestan and Brynlee are true inspirations. Melissa, I dont know what to say about. I pray I can always be half as strong as she is. They give me so much to look forward to. I will never forget "God gives special children to special people". This was another hand of God. Finally but I definitely know not the last is Janet. I know I have blogged about her a lot but just to remind everyone, she is a Nurse Practitioner at Cook's that specializes in Hypoplastic hearts. God knew I was struggling. She knew exactly what to say and when to say it. She put me as ease and still does each day I speak to her. These babies are her babies. You can truly see that God knew this was the job for her. She is so passionate. The day we sat down with her to discuss Brinley's heart I thought I was going to have a nervous breakdown. I just doubted my strength. She gave us drawings of her heart before and after. It is and will be amazing. Each drawing showed what each surgery will do for her. My moment with her was when she said "the heart is a muscle and as a muscle her heart is perfect. We just need to go in a rewire it so that it can circulate correctly.". I hope and light at the end of the tunnel was all that I was looking for and all of these wonderful people have given it to me. God knew I needed them.
Sunday, August 21, 2011
Thursday, August 18, 2011
Sniff, sniff, cough, cough, itchy ears, congestion, and etc. I feel like doo doo. I thought I would try and get out of the house to see if that would help but I was definitely wrong. How can it be a trillion straight days of 100+ weather and I am absolutely convinced that I have a cold. Being the only one that can care for Brinley is so hard. Eric is on his rotation so his 12 hour days make it hard for him to help in to the late nights. I am pretty sure after our long weekend in the hospital and the long nights before that is one the main reason i am sick. All of us moms know even if daddy says they got it, it also means we lay in bed wide awake make sure they really do got it. I spoke with Janet again today and she just puts me more and more at easy about Brinley. She knows I have been under the weather so she keeps telling me that she is praying for me. I wish I could box this woman up and give her to people who are need of any kind of support. She is just an amazing person. The upcoming surgery is going to put things back in the "normal" range for our little family. No more daily phone calls, weigh ins, o2 checks, heat rate checks or daily tallies of fluid intake. Her immune system will be strong and I can return back to work. It has been a struggle being at home on one income. School starts Monday for Miss Chloe. She is a big ole 6th grader. Boy, she think she has grown over the summer. I definitely have to put her back in check some times. I have ran into a lot of people lately that ask how things are going. Hummmmmmm.... I just smile and say good. It is tough. I am not going to lie. But we just take it day by day. Not sympathy, just compassion.
Tuesday, August 16, 2011
Sunday, August 14, 2011
Saturday, August 13, 2011
Friday, August 12, 2011
Tuesday, August 9, 2011
Monday, August 8, 2011
Sunday, August 7, 2011
I can't help but think about all those nights watching Brinley sleep and longing to hold her and rock her. All those lines and monitors were just frustrating but knowing each day she was fighting was amazing. These nights of staying up late are precious. The feeling of holding your child and watching them sleep and breathe is just one of those moments that are never forgotten. I have learned to take all of the some time insignificant moments to heart. I am in awe how one little person can make you reevaluate things.