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Wednesday, December 14, 2011

Dear Brin,

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

Tuesday, December 6, 2011

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

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.

Thursday, September 29, 2011

Glory to God....,

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. 

Sunday, September 25, 2011

These are the days

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. 

Wednesday, September 14, 2011

Finally, I can breathe again

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. 

Saturday, September 10, 2011

What was my....

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. 

Thursday, September 8, 2011

Look out

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

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. 

Tuesday, September 6, 2011

Where to begin??

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.  

Sunday, September 4, 2011

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

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!!!!

Saturday, September 3, 2011

Day 4 post-op

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.

Friday, September 2, 2011

Four and a half hearts

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. 

Thursday, September 1, 2011

3 months today

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. 

Wednesday, August 31, 2011

More proof

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: 


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

I can't believe it

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

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! 

Today I could have a party....

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


That is what you hear when a heart is breaking. It is so deceptive. No one know how much you ache or struggle because we learn to be deceptive ourselves. The smile that hides the tears we shed and the laughs we try to let out so that the uncontrollable sobbing is held at bay. Everyday I wish I could reach in my chest to give her this heart of mine so that she no longer has to struggle. When is your heart officially considered broken. Mine heals and breaks over and over again.   You learn to ignore the beeps of machines and the lines that lead to her tiny little body and you still see this perfect baby. For now her surgery for tomorrow has been postponed due to an infection. Again my heart breaks. I am anxious to talk to my little girl so she can "tell me all about it" but for now we wait. She sleeps peacefully in my arms with no idea what the future holds for her. That things she experiences will be for her to get better. Now I finish writing this I will wipe away all my tears and put on a smile and pray. 

Sunday, August 28, 2011

Another day, another moment of reflection....

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. 

Only a matter of time

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

If you listen close enough......

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

Sorry, sorry, sorry......

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.

Don't even know where to begin.....

I am just on edge right now. Just clarify things. The majority of CHDs can not be "fixed". I just want to scream when people come and ask " how is your baby?" and the when I reply good, they say "well at least it can be fixed." Well the Drs can't magically go in and make her grow an entire ventricle, that can't say abracadabra and give her a tricuspid valve, they don't have mystical tools that go in and "fix" everything. A friend of mine wrote today and said she was praying for us that we (her son is 2 months older than Brin also has a CHD) are so fortunate for our children to be born in an era where there are constantly new and innovative ways to address heart disease. And that is just it! These issues are addressed. Brinley will need constant care for her life time. Her heart will be restructured so that it can function the best way that it can. My friends son had intervention shortly after birth and he is only 5 months old an they are already having to discuss going back in for another. I feel so lucky to have this opportunity to be a mother of a life that has completely changed mine. I want everyone to read and follow my story and let it help you not to take things for granted. I look back on my other girls and I think to myself, I wish I would have to took more time do this or took some moment to think to myself "don't ever forget this moment because you may never get another". I mourned my perfect baby the last four months of my pregnancy but ya know I just got a different baby completely perfect in a different way. You guys see pictures, would you really trade that smile for anything? NEVER! My friend said that the Medical staff told her before a procedure once that her son will never remember any of this and her thought was "no, but I will".  So many times I have wanted to grab Brinley and just run away. I have seen things that are forever burned in my mind. Things that make you want to drop to your knees in sadness and hurt for your baby. I held her after giving birth for five minutes and some where inside of me I had to find the strength to do it because I was afraid they were going to take her away and I would never see her like that again, my perfect baby. She was 10 days old before I was able to hold her and smell her again. Even with all he the lines I held as tight as I could. When you can only go 1 foot in either direction with your baby for days and then finally get to go home with after 21 it really is hard to ever put them down. Today, Brinley started out having a good day. Around 3 o'clock I noticed a change. Her cyanosis was sitting in to a level j had never seen. She was clammy, irritable, lethargic and her saturations were in the 40s. She was already on oxygen and she was bottoming out over and over consistently. The nurses could not find the dr. When she was located she on emergency in the NICU. She responded to Brinley's call order her to have a IV put in by the cardiac anesthesiologist to help with immediate intervention if she needs it. We still have no idea why is dropping so quickly. The Dr looked over echo on Wednesday and has decided to cath her in the morning. She optimistic that this will bring is closer to answers. Brin is now resting comfortably on 2 liters of oxygen and keeping her sats in the 80s. Please say a prayer for her tonight and hug your babies for me. 

Learning to expect the unexpected

What can I say?? I am speechless about this. I think it is because I am torn about what is going to happen after her cath. The only road I see is the bi-directional Glenn. She can't be sent on oxygen and there is no other way to keep her saturations up. She is on oxygen now and it is only keeping her in the mid 70s. They had no luck with her IV. She is too dehydrated but we are hoping with the O2 it will bring her appetite back and we can her fluid intake up. We will try for an IV again tomorrow. She already has 3 bruises from the prior tries. Poor baby. It is hard to see your little one hurting. We all know this.  I just ask every one to say a little prayer for her. 

Wednesday, August 24, 2011

A little ahead of schedule

Brinley's appt went very well today. As a whole her heart is wonderful. Her saturations were down again today. Janet came in and said she noticed some dusky-ness to her that she had not seen before. As her mother I wanted to beat myself up bc I had not noticed but I see her every day and she always looks great to me. It to her pointing it out to me. We are scheduled to have her catheterization sooner than it was original been expected which was the Sept 7th. We are going back Monday to have her cath Tuesday morning. They told us to bring what ever we need for an extended stay just in case. Looking at her demeanor she is just wonderful. Smiling, kicking and talking like a crazy woman. They told us initial shiny would eventually be too small for her growth and we think she has hit that point. They are not thrilled with her low sats. I am definitely at peace with what ever they decide. She is just doing so good you would never know anything was wrong. But he low says can effect her in the long run. I am just happy to soon be on the "other side". She is going to do fabulous!!!!

Tuesday, August 23, 2011

Tough being a girl

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 for self esteem for teens

Monday, August 22, 2011

The hand of God

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

FDS Eve......

It is 11:30pm and Chloe just got up and went to the bathroom. Yes, she is still awake. I told her I better not hear her whining in the morning. Emme wants to go with her Momma to take sissy to school. The never- ending question, where does the time go??? Sixth grade. ..... Sheesh.  Definitely a turning point in lil girls lives. I just now decided to let her shave last week. I know she will want to kill me for putting that out there but I am just not ready to let her grow up and then I complain because certain things I need her to be grown up about. The infamous, double edged sword. Brinley has another appt at Cook children's on wednesday. Emme is going because she wants to go through the "tunnels". They always have a Child Life specialist come and work with siblings during appts. I just can't say enough about this place. They are so wonderful. Last appt we were looking at the wall of pictures, all heart patients, and we saw a picture we recognized. Miss Kenzie, she just put a big ole smile on my face. I love how all of this has made me look at things differently.  My hope is our story might just do that for someone else. Cherish EVERYTHING!

Thursday, August 18, 2011

Pity, party of one

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

Just what she needed

The resiliency of babies is absolutely amazing. Brinley is back to her wonderful, playful and beautiful self. I talked to NP today and discussed with her about something's that happened while we were in the hospital. I questioned her about Dr. Mandel saying the blood flow to her pulmonary artery wasn't as much as he wanted and she explained what he meant. Before we left the hospital after Brin's modified Norwood, Janet explained that she would probably be seeing us sooner than later. She explained the size of her Shunt would be the reason. They were not able to make it any bigger because of the amount blood flow that she needed. Her growth has been so great and she is already growing too big for the shunt. Her flow through it is still great but she will need her surgery soon. We go to the cardiologist next week for another follow up. Since our hospital stay the cardio is anxious to see us but still can't believe that we had a check up with our pedi on thursday and then we were admitted to the hospital on Friday.  I am def in the process of making sure that never happens again. We have Brinley's catheterization scheduled for Sept 7. From just speaking with Janet today I have feeling that we are looking to have her Glenn at the end of Sept. The blood flow to her pulmonary artery is just a reflection of it is getting close. I am nervous and excited. This is just he beginning for her and us. I am definitely starting to feel all these late nights catching up with me. She is worth every bit of these scheduled feeding but last night I felt a summertime cold of some kind setting in. This morning I felt as though I had been hit by a truck. My wonderful friend Crystal came by and picked up Chloe for me. She was getting bored and I did not have the energy to entertain her. Thank you a million times for that Crystal!! Chloe had her first cheer practice tonight. I am sad that I missed it. They are starting on their dance routine for competition. It is always so exciting to watch them. Chloe has tumbling class tomorrow, I hope I feel well enough to go. Emory had soccer prac this evening but we missed it. Someone (clear throat.... Eric) didn't tell me they practice on Mondays and Thursdays, I assumed it was T and T.  Last practice Eric said she did great. I can't wait for the season to start. Chloe has soccer prac at 9 am this morning. I am lucky for that my father in law comes by to pick her up for me. He says that have an amazing group of girls this season. I feel like we have so much going on that I could go on forever. I have a bout of insomnia right now because I took some musinex cough and cold. It gives me the wide eyed willy's. Hopefully sleep will come soon. Long day tomorrow. Buenos noches. 

Sunday, August 14, 2011

There's no place like home, there's no place like home

You think you will never miss the mess of your own but being away for even the shortest amount makes it feel so wonderful to be here. I know it is hard for Chloe and Emory but I know this is only small bumps in the road. Brinley makes this family whole. The girls know their sissy needs us to be strong. Emory always says that her sissy's heart is broken and we take her to the Dr. so that they can fix it. I never want to forget these little moments. I will always know that we have so much to be thankful for. 

Home sweet home

 The Dr said Brin was doing "pretty well". What the heck does that mean? I have a lot of questions but am saving them for Janet when she calls. Our on call Dr was someone I was not familiar with. But I can say my mother's intuition says she is doing great. I am not too naive to underestimate her little heart but she is doing her best. Her second surgery is fast approaching and I know that we will just be one step closer to her complete reconstruction. 

Why do you build me up, Buttercup, baby.......

I love that song from the Foundations. Eric made Brin his very first build a bear today and he named her Buttercup. Oh today has been so good Brinley is back to her ole precious happy self. She feels so much better. Dehydrations effects her so much because she BT shunt dependent and order for her to have good flow through the shunt she must remain hydrated. She definitely needed those fluids. Other than that we had a pretty uneventful day. I have got to nap on and off today. Staying up til 4 this morning trying to maintain Brinley's O2 levels definitely wore me and Eric out. Of course we are now wide awake at almost 2 am. Hoping to head home tomorrow. Eric will be 31. I really had plans to try and do a small get together for him but things just happened so quickly. I will make it up. So Happy birthday to my best friend.  

Saturday, August 13, 2011

Off the "beating" path

Where to begin? I was so relieved that yesterday was over because it was so busy and chaotic and hoped for a new day to begin on a better note. Little did I know it would be another test of my strength. I knew it would eventually happen but you can never be prepared. I did let myself get too comfortable with Brinley. I was so vigilant in the beginning that I let myself get to relaxed and expected nothing to happen and it did. Starting Thursday night she started having her O2 says drop into the 60s I was concerned but not overly, she has dropped before and always came back up. We check her when she is sleeping so they said it is not unusual for babies her age not to take deep enough breaths when they are sleeping and would should just disturb a lil to make her breathe deep. Over the next 12 hrs she slowly began to drop. Her color was dusky, labored breathing, sats in the 50s and heart rate near 200. We quickly raced to Cook's. I had been o. The phone most of the with our NP, who I can not speak highly enough of. When we arrived here she was still sat-ing in the 50s. There were 10 dr and nurses waiting for us when we arrived. They were all ready to get Brinley stable. They are amazing here. We were admitted on IV fluids and O2. She is doing very good right now. We started off at 1 ltr of O2 and reached 2.5 ltr but now she is being weened off of it all together. Since Brinley is BT shunt dependent she had to stay fully hydrated. I think over the last couple of days I think the heat really bothered her. She lost her appetite and was very lethargic. I knew something was wrong. Brinley' EKG, xray and bloodwork came out great. Her echo showed a smaller amount of blood flow through her pulmonary artery. The cardio said he was not too concerned by this because he could definitely see the blood flow. Eric and I are trying to figure out who is driving us home considering it is 3 am and we are both still awake. I am sure we will be doing half and half. We are hoping to be discharged tomorrow but they said only if they know for sure what was causing her drops.  I wouldn't expect anything less. I definitely have to thank everyone for being such a support for me. Most of you know I write as a away to have a means of expressing all these crazies feelings and stories I have. I have been to some dark places these past couple of months and it helps me to remember that when things start getting good to be so thankful. I know these crazy posts about Brinley will be come few and far between because soon we will be on the "other side" of all of this. I know deep in my heart that she is going to be fantastic after all of this. I want to be able to look back on all of this remember all the times I was scared and happy. This is one of those. I just want to share this with all my friends and family. I don't always talk about things and definitely tend to hold things in and this helps me. Thank you all for walking and sometimes carrying me down the beautiful and winding path. 

Friday, August 12, 2011

Mother of the Year.......

I think not!!! Holy toledo, Batman!!! Today was one of those days that I just seriously wanted to throw in the flag. Chloe had to get a retainer for her teefers. One was moving out of place so we need to get it back in line. Brinley had a Dr 's appt and her Dr office knows that she needs to be taken out of the waiting area because of her lungs and they seriously left us in there for over 30 minutes. I feel like they do it out of spite now because they always go on about many letters and fax and phone calls they get from Cook's. Like it is a big inconvenience that this place that specializes in children's health is  going out of it's way to do what it needs to to make sure my baby gets the best care possible and everyone is on the same page. Long story short, I am on the hunt for a new pediatrician. Chloe had a cheer meeting which was fun. I got to see lots of the moms I haven't seen all summer. My little girl that showed me that this is just a bump in the road was there being all cutie pie. Emory had soccer prac. I don't know how Eric and I are going to juggle all of this with 3 kids....sheesh it is hard work. I met Eric at Academy to look for some cleats for Emme. One minute we are lacing them up and telling her to walk in them and the second minute we asking for some associates for their help finding her. They locked the doors letting no one leave and all associates were doing area checks. Eric and I were in total panic. She had one tennis shoe on and one cleat. We finally found her in the water gun aisle. The girl is going to cause me to have a nervous breakdown. She seriously gets in to so much that I get use to some things but I am still on edge. I tried to talk to her about staying with us but she doesn't comprehend just yet. We are leave and get half way home and I realize I left my phone in the buggie, Brin is crying because she needs her diaper changed and is hungry and I couldn't get home fast enough. I am so happy this day has come to an end. I will start fresh tomorrow. 

Tuesday, August 9, 2011

Holy guacamole!!

Today was seriously one of those days when you just want to pull every single hair out of your head. Sigh.... Where do I begin??? If I seriously see another child put there finger in their nose and then stick in their mouth it will be waaaaaaayyyyyy too soon. And to top it off it is my own child!!! Emory Piper is going to drive me insane. I did the only logical thing. I put socks on her hands and she screamed at the top of lungs. I made her promise to never do it again. We will wait and see.....ugh it grosses me out!!!! Chloe got new glasses today. She should be styling and profiling for school. She is stressing me out too. At what age do kids just start being "big" kids? Man, I just ask her do things without me having to go back and correct or supervisor. Brinley is so little I can't blame her for anything. She just had a bath and is now hanging out with me but trust me she will have the wrath of her mother when she gets older and needs it. Lord, I pray for a little bit more patience tomorrow and for my kiddos to listen to their mom :)

Dare I say it? Bed time

I am attempting to sleep in my own bed tonight and not on the couch. We really need try and get these girls back on some kind of so called schedule. I surprise myself some times about how long I can function being so sleep deprivedhubt late at night is when I can get a lot done or just sit in quiet time or most importantly not watch the Disney channel. Sheesh.... A mother can only take so much. Brinley is peacefully sleeping while I type this. I am constantly looking up at her pulse ox machine monitoring her readings for my daily chats with Janet (AKA my life saver) from Cooks. I am trting to get a base number on her oxygen sats and heart rate. They said her pressure in her lungs has dropped. The pressure is one way of knowing that her heart will be ready. She has been sat-ing in the high 80s and low 90s. They said that is amazing and I should be so proud of her. Which of course I am. This momma prayed every night for a miracle and each day God gives me one in one way or another but she is my true blessing. Emory is still up watching her kitty movie (Garfield). That girl never runs out of energy. Chloe is hitting the sack. She came home from her cousin Lee's because she was not feeling well. She has soccer practice bright and early in the AM. So I am signing off. I am hoping to enjoy this pillowtop for at least a few hours. Buenos noches. 

Monday, August 8, 2011

The good life .......

Here it is midnight and I am still up (as always). I am filling syringes of medicine for Brinley and cutting up baby aspirin into fourths, which is not an easy thing to do. I remember before we left the hospital, setting down with the NP and she was teaching us how to measure up her medicines and when to give each one. Panic set in immediately. What if I forgot!? I can barely remember to do my own daily things each day but you know it is like second nature. My phone has all these little alarms that go off just in case I forget. More often then not I just remember on my own. You will do anything for kids. I definitely underestimate myself but when being strong is the only choice you have .........

Lily is 2

My beautiful little niece is 2 today. We had a great time celebrating with her at Chuck E Cheese.  Where does the time go?! We love you, Lily-bug.

Sunday, August 7, 2011

Late nights......

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.