Half heart*Whole family

Preschool!

2015-09-01T11:50:00.002-05:00

That is what happened to us this past week. Queen B started preschool. It was a very emotional day. I told her I was not going to cry but I just couldn't help it. Things have changed so much. I go back and read what I wrote and I cant help but wonder who that person is. If you see Brinley now you would never know she has been through so much and my heart was broken so many times. Now my heart is filled with joy, happiness, pride, excitement, anticipation, and every other great word I cant think of. I feel at peace when for so long I never thought I would find it. I will never let me guard down knowing things can change very quickly but for now I soak in this feeling. We will drive the 2 hours to all the dr's appts that we have to and we live in the moment. The fight is worth every minute of it.

So far it has been a great day

2013-06-19T11:23:00.004-05:00

Wow this day is just so unexpected. I know every visit is not like the last but it is just so unexpected when we you are almost traumatized by previous stays. Brinley is just..... gosh I dont even know a word big enough to describe her. Today she is pacemaker free and will soon have all her lines out so that we can hold her and she move a round. This time she is the oldest baby in here and it is very hard emotionally. To see these babies I cant help imagine them being our Brinley. An elderly couple just literally stopped by moment ago to ask about Brin. Eric explained that she just had her 3 open heart and they said she looked amazing and that their grand baby just had her first. I hope by seeing Brin it gives them something to look forward to. It is so true that God only gives what he knows you can handle. I never thought I would have to face anything to this magnitude but I am still here treading water and do what I have to for Brinley. It sounds selfish bc really it is not even necessarily something I will have to live with it is Brinley's heart. As her momma all I have to do is find the strength to stand each day and make sure she has the best possible life she deserves.

Have you ever

2013-06-17T22:56:00.001-05:00

Watched a movie or heard a story and thought to yourself "man, I just don't think I would have the strength." That is my life right now, right this very second. Today I had a breakdown. I cried silently as long as I could but there are moments not matter how strong you are you just can not keep it in. Brinley telling me not to cry were the last words she spoke to me today and the first time I seen her 10 hrs later she was, well words cant describe. It is so hard to hold in the fact you just want to grab your baby and run away. To tell them to stop hurting her, to just let her be, when all they are doing is actually SAVING her life. Because of them she gets to LIVE. As a mom you would lay down your own life for your children. Please squeeze your babies extra tight tonight. I left my baby behind at hospital alone so that she may rest. The last thing I saw her do was try to pull her own ventilato

r out and a pacemaker laying beside her with 3 drainage tubes coming from her belly. Tonight I will stay awake all night to regain my composure so that tomorrow when they wake her up I will be the first face her beautiful eyes see.

What a ride?

2013-06-12T12:03:00.001-05:00

You know that feeling when you are on a roller coaster and you get buckled in and then you hear the chains clink and that sudden jolt and you start to move, that tightness in your belly, the lump in your throat waiting for just the right moment to scream, then your hands reach for that bar in front of you to hold on tight because you know you are anticipating all the up and downs, waiting for the moment to go over the edge? I have that feeling but I have nothing to hold on to and the screams are silent. I look that thrill ride everyday in the face and she laughs, plays and calls me Mom. I am so ready for a moment to just step off this ride and have that happy, excited feeling once again. Fighting tears all day but I know we are in good hands. God's hands.

2 yrs and many more to look forward to!

2013-06-06T11:11:00.001-05:00

Looking back on these past 2 years I cant help but smile and cry. I have talked about our nurse practitioner many times and I will never ever forget all the words of encouragement she gave this scared, uncertain, 3rd time mom. The last time we visited she said "you know, this journey is a very scary one but it is not a bad one. Look at your baby now and tell me that you would change one single thing about her." I swear I want to bottle that woman up and every time I have an "I can't do this moment" I can reach in and take what I need from it to keep going. And going we have done. On June 17th Brinley will have her 3rd open heart surgery, the fontan procedure. In my mind I know that I am ready for this to be behind us but my heart wants to crumble every minute of everyday. How do you prepare? To sit in a tiny room with Dr's who tell you every thing that will be done and at the end remind you that with all surgeries there is a risk of death and then want you to sign your soul away to them saying you understanding and then take your baby away behind these big giant double doors and they expect you just to hold it together when you really want to scream and drop to your knees. But some how I will manage to stay on my feet and wait in a cold room with many other parents waiting on this beige phone in the corner of the room to ring and pray that they ask to "speak with the parents of Brinley Rodriguez" to tell us surgery has started, the Dr is currently augmenting her pulmonary artery, he is finishing up her fontan and she is stable and doing fine, the surgery is complete and it should be a little bit before we can see her but she is doing well. This surgery is expected to be 5 hours. I could say this will be the longest 5 hours of my life but that would be a lie. This past two years has seemed like an eternity. Brinley is everything I could have prayed and hoped for. She is my miracle.

Time flies when you are having fun...

2012-05-01T13:24:00.001-05:00

11 months ago I welcomed a true miracle into our family. I have been told so many times "Gosh, I dont see how you have done it." Sometimes I am not sure either but it has been the only choice I had. I will never forget all the people that traveled with us to welcome her. I will never forget how everyone went home thinking she was okay and receiving that faithful phone call "Your babies heart is more complex than we originally thought. She also have transposition of the great arteries and will be going into surgery at 3 oclock whether you or here or not." I will never forget that everyone turned around and drove all they way just to be with us and Brin while she endured the first surgery of her little journey. I will never forget the Priest that came in blessed her and christened her before they took her away. I will never forget the moments we cried and prayed for her. I will never forget the very first moment I seen her little heart beating out of her chest. I will never forget the nurse at Harris Methodist that came into my room before I was discharged and cried telling she was praying for me and my baby. I will never forget the words " I wish all those times I could have showed how things would be once we got to this point." I will never forget getting to that point and dropping to my knees and thanking every faithfully guided hand that has helped restructure her tiny heart. I will never forget the little girl in the play room that brought Eric and I a prayer pillow that she made for other heart patients that she would meet after having her own surgery. I will never forget the feeling of Doctors and nursing rushing to my baby's bedside with the crash cart. I will never forget how it feels when a dr says "we do not think she was without oxygen long enough to cause any organ or brain damage." I will never forget the times Jessica and I facetimed together and how that made me feel so much closer to home. I will never forget walking with my husband back and forth to the hospital in silence because there were no words to describe how we were feeling. I will never forget how this has brought my marriage to whole new level. I will never forget the moment my older sister told me that my mother was crying uncontrollably. I will never forget seeing Eric gasp for breath while getting our diagnosis and trying to contain his tears. I will never forget................these memories have turned me into a person that does not take each day for granted. One month today will be a small step for Brinley but will be a giant leap for my healing heart. I cant wait to see her grow up.

The Lord giveth...

2012-04-04T21:47:00.001-05:00

Today Brin had her cardio check up. She is 7 months post BDG. Wow how time flies?! She is so amazing. It feels like I just brought her home and now she will soon have her first birthday. Last night I watched the season finale for 19 kids and counting. Michelle Duggar went for her sono and they were so excited to see the baby and the camera man was going to find out the sex. Sigh.....the baby had no heart beat and three days later after having labor induced she gave birth to a tiny baby girl. I cried uncontrollably. My heart stopped for them just as mine did the day of my own sono for Brin and hearing the words "something is wrong with her heart". I am beyond blessed with this baby girl. When I was still pregnant so many horrible things and sad not knowings went through my mind. I regret every bit of it. I would not trade her for the world. I am lucky to have such a precious baby that changed my life. I mourned my healthy baby but she is with me. My heart hurt for the Duggars loss but it reminded me to be so thankful. As of right now Binny is biting and slobbering on my nose. What a perfect moment. The Lord giveth and the Lord taketh away. I don't know what will happen tomorrow, next week, a year from now or twenty but I will not take any of it for granted.

Somewhere...someplace... today...

2012-02-02T09:14:00.001-06:00

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
... And they just don't know what to expect...
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.

Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.

Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.

Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...

Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".

Author - Stephanie Husted

Dear Brin,

2011-12-14T14:51:00.001-06:00

Six months. Wow you are already six months old. Where does the time go? I found out you are going to have a new best friend. I am so happy for Brandy. I remember feeling the exact same way when I found out I was pregnant with you. I am so sorry I let that change. I was so scared for you and I still am every day but as the days keep coming and going I know that you are going to be okay. I wish I would have enjoyed those pregnancy days with you. I couldnt get past my fear of what it is you were going to face once you were here. You proved me wrong on so many levels. YOU ARE A FIGHTER! You have taught me so much about myself. I wish I would have had a baby shower for you. Again I let my fear take me to places that were not good. Thank you for being you. The perfect little girl I dreamed and mourned all at the same time. You are everything that we needed. I cant wait to see you grow with your sisters. To see the things all of you will accomplish. I dont know what each day brings but I do promise to make the most out of each and every one.

Love, Mom

Things keep moving forward.........

2011-12-06T10:59:00.001-06:00

I officially returned to work on October 17, 2011. Man, it is tough. Just with 3 kids and that is not including Brin's heart defect. I am stretched for time and sleep. Praying that we can all be on a schedule some time soon. Thanksgiving has come and gone. I definitely have so much to be thankful for. Brin had a short hospital stay a couple days before the holiday. She was congested and her sats were low. She got some oxygen and some fluids and was back to her sweet little self in no time. Christmas is quickly approaching. I cant believe this year is coming to an end. A lot has happened. It seems so surreal. I couldnt ask for a better life. Things are just moving right along. We have a cardio appt next month. I am praying they take Brin off of her sildenafil. I think it is the reason she does not sleep well. The Dr. said a rare side effect is insomnia. I am not sure it is full blown insomnia but I think that is does not allow her to get adequate amounts of rest. We are just doing the best we can. Emory just turned 4 last month. I remember thinking when I was pregnant with Brin how little Emme was and she was still a "baby". Now she is "officially" a big girl. I knew this blog would be updated less and less it is true, life does go on and the bad stuff fades away. Life is good.

Glory to God....,

2011-09-29T00:21:00.002-05:00

I prayed and he listened and answered. Dr. McDreamy said he had never been able to see Brin's pulmonary arteries as well as he did today in her echo. Her glenn looked perfect. He said the circulation was doing exactly what it was supposed to be doing. He said her color was wonderful and he is just so impressed with her. He still had no explanation to why things got so bad in the hospital but you would never know by looking at her now. We are just so thankful for everyone who has stuck by us, prayed for us and gave us encouraging words. Our next appt is not until January. Wow, that is just crazy to me. I am one proud momma.

These are the days

2011-09-25T00:22:00.001-05:00

Life had just picked up where it left and it is wonderful. Chloe is wonderful, Emory is wonderful, and Brinley is wonderful. I hate that ever doubted myself. Brinley is headed to the dr. next week for post op check ups. I am prepared for anything but I deep down it is going to be a good one. I can't wait to see Janet and hug her neck. I miss not speaking with her everyday. Before this I wondered how I would get through each day without her encouraging me but it is all so normal. No more pulse ox, weigh ins. Just us enjoying our baby. I feel like I have got to bring my baby home from the hospital for the first time twice. She is my little piece of heaven. My miracle.

Finally, I can breathe again

2011-09-14T00:33:00.001-05:00

I missed being home with all this chaos. Even though my house is a mess and my girls are already fighting, I wouldn't trade it for the world. Brin is just so happy to be home. She is all smiles. Emme keeps looking at her and then says "hey, she is smiling at me". :) Chloe had choir tryouts today. I have no doubt that she made it. I love to here choirs sing and can't wait to go and watch them perform. Today was a great day. Brandy and Ruben also came by for a visit and went and visited the sis. Now we rest..… buenos noches.

What was my....

2011-09-10T23:43:00.001-05:00

Life like before all of this??? The news of having a third baby was thrilling. Eric and I tossed around the idea having one more and it was that if it happens it happens scenarios. God's hand was at work then. He knew Brin was special and this was going to be a test for me. It has not been easy. It has a challenge for me emotionally more than anything. I know I have shared so much with everyone. Thank you all for listening. The road has been paved for us and now we will try any where it takes us. Brin has brought so much to me and my family. Personally she is a testament for me to never doubt myself and to never give up. She never gives up on us and to see her fight for life is absolutely the most amazing thing I have experienced. I hope my story effects someone in an extraordinary way. Even if it is only to make you thing about things in a way that let's cherish all the moments you would normally just enjoy but to take a minute and say "I never want to forget this". Writing all of this down helps me. All the joy and sadness I have had over the 6 months of my life is mind boggling. I pray no one ever experiences the dark places I have been but the joy out ways everything. God has made his self known to me in the most obvious ways. I laugh saying he should have just reached out and slapped me upside my head. I can't say I will never be at a place in my life that I will not doubt what he is doing but I will take a moment to remind myself that he has a plan. All the times I begged for miracles he granted each and everyone of them, just in is own way. The people that I have crossed paths with are the most amazing people I have met and all have help me to cope and find strength in my trying times. He knows I struggle everyday but each day is a blessing.

Look out

2011-09-08T23:17:00.001-05:00

Wichita Falls!!! These girls will soon be home. I can definitely say it feels like a weight has been lifted off my shoulders. We finally made it to the third floor which is one step away from loading up the car a head home. Emme went to the house with Eric for a little bit tonight so we could FaceTime and we the were leaving Emme said "goodbye house, I miss u house, I love u house". Aw, it made my heart hurt. Jess said the other nite she hugged Chlo and she said " u sound like my mom" and started crying. We are ready to be home and back together. Dr. McDreamy, I mean Dr. Muyskens, came by too Brin earlier and said he has been on pins and needles bc of her. I always say the bad things always feel like a bad dream and now seeing her this way is another example. Babies resiliency is so amazing. We have taken a road less traveled but the scenery is amazing.

One step closer

2011-09-08T00:24:00.001-05:00

To going home. Dr. Chemelli said today that Dr. Tam (surgeon) could not see Brin's echo clearly enough to determine the need for surgery. He said clinically she is doing good. Dr. T wants her to have more time to grow and they of course will monitor her closely. She was such a happy girl today. The nurses were coming in one by one to see her smile and laugh. Brin and I facetimed with Aunt Jessie and the gang. We got to see Chlo's beautiful face. We also called daddy and Emme. Emme wasn't quite sure what to think about us being in the phone. She kept wanting to give Brin kisses. So sweet. Chloe has her first soccer game on Monday. I would love to be home to see it. I am here alone right now. Daddy headed home to work. Brin made me laugh so many times today. Even Dr. Meyer came by to tell me that it was good to see me smile. It felt good to smile but it felt even better not to cry.

Where to begin??

2011-09-06T21:59:00.001-05:00

Yesterday evening when I returned to the hospital I was told that Brin had another falling out. I couldn't believe it!!! I had spent all day with her and left when they started changing some of her dressing to run to Target and that is when it happened. She had been wonderful all day long. I just don't understand what is going on. After our visit the ICU Dr stopped me to tell me that the echo was scheduled for in the morning (today) and depending on the findings they were going to schedule ANOTHER cath to see if she would need to go back in for surgery. They are looking for some narrowing in her pulmonary arteries. This would mean surgery right away. This emotional roller coaster needs to come to an end eventually, right??? My expectations were to be in and out in about a week and no new surgeries until around three years of age. In this case we are looking at 4 open heart surgeries before the age of 5. Peace be with me.

Wakey, wakey, eggs and bakey!!!!!!

2011-09-04T22:09:00.001-05:00

What a day!? Brin "The Extraordinaire" Rodriguez has once again shown she is a fighter. She came off the ventilator today and is doing great. The Dr. came by and said it looks like we are out of the storm but I am still watching the weather report. :) There have too many days of these ups and downs that I am definitely being cautious. Emotionally I am just a wreck but to see her sleeping so peacefully definitely makes my heart feel lighter. I am spending the night with her. Every minute she opens her eyes I want her to know I am here. Sleeping Beauty has been asleep for 5 days straight and I have been dying to see those pretty eyes. I pray to have more good news tomorrow. Oh, the Dr just came in and said they are going to start feeds again, yay!!!!

Day 4 post-op

2011-09-03T23:35:00.001-05:00

All I can do is look for a little bit of improvement and run with it. Tomorrow will make day 10 for us here. You forget the days of the week or time of day. My mom is here with us which is nice. Brin looked like herself tonight when we went and seen her. That will definitely help me sleep better tonight. Chloe was running fever today so she stayed over at the RMH. She got some meds and is resting and fever free. My mom and I had a good little talk on our walk over from the hospital. Nothing inparticular just stuff but it makes me really miss my dad tonight.

Four and a half hearts

2011-09-02T01:22:00.001-05:00

We should have our own little sitcom. Eric says that is what our blog should be. It made me smile to hear him talk about it. He realizes it helps me. I can be withdrawn about things sometimes. I refuse to let this little update be bad. Brinley was doing good tonight they said they would give her another day and try to get off the ventilator. They think for her being so young and having to be on a bypass machine for 8 hours just took its toll. They tried weaning her off things too quickly after surgery and she is too sensitive and she was not ready. They having been testing her kidneys to make sure they were not effected after she crashed yesterday and so far so good. Even more so now that she is removing fluid on her own. She definitely is my little miracle. Chloe came to spend the weekend with us. Boy, did I miss her face. Instead of doing fun things for Labor Day weekend she opted to spend it with us. :) We are so lucky to have three wonderful girls.

3 months today

2011-09-01T08:46:00.001-05:00

That is how long she has been fighting. Three months ago today i had the joy of holding her for the first time. A day later she was in surgery and it would be another 14 days before she was back in my arms. Now I wait to have that moment again. My chest aches but I have come accustomed to this feeling. Heartbreak.

More proof

2011-08-31T22:28:00.001-05:00

God's work is never done. My family is living proof. Just when I am struggling he puts something in my face to show me he is at work. This is a post I received today from a support group. The hand of God......

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:

Strength....

2011-08-31T20:19:00.000-05:00

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.

I can't believe it

2011-08-30T23:02:00.001-05:00

This day has finally come and it will soon be gone. Another day that i struggled and was shown powers stronger than man. God guided the hands of these special people to make Brinley's little heart work better. I seriously want to fast forward a week from now to see her beautiful smile. This baby girl has shown so much resiliency that words can not express the admiration I have for her. God has a special plan for her and even if it to make people change the way they think about their own lives, then that is enough for me.

Strike 2

2011-08-30T18:05:00.001-05:00

That's right! 2 down and 1 to go. Brinley is doing good. We are in the PICU waiting room anticipating that phone call to come on down. So far so good. They are going to keep her on the ventilator definitely through the night. Her sats were still a little up and down but Dr. Tam assured us they would even out. God is good. She will need one more surgery but it will be a couple of years from now. Right now we live for today and today is wonderful!