Happy Feet!

Ahhhhh...Let me explain.

Although I don't have the guts to have foot surgery, I seem to have the guts to have steroid shots gush into my feet, VERY painfully, to target my nerves that have been damaged. The predator(s)? I think it's the six months of standing next to Isabela's bed warmer in the ICU, to carress her endlessly. Ok, maybe it wasn't smart to wear 3 inch heel boots. The other culprit being my 12 years of running.

While I moaned and groaned for the whole minute of the steroid shot, I thought about how cowardly I am about surgery. Cutting? Opening? Infection? Even worse...crutches and special wedge shoes for 4 weeks! Yeah, I am too superficial for that. But, he did say, "off your feet for one whole week!" hmmmm...

I have been looking forward to seeing my Podiatrist all month long. Nice to not have my feet throb. Is that normal? I've forgotten.







-- Posted from my iPhone

Two Friends, One Past

Do you personally know of anyone who evokes within you this incredible desire to drop to your knees and praise him or her? Well, I do. Her name is Michelle Monique Dupre Warner. I don't think we have much more in common other than her daughter has a very similar heart disease as Isabela's. She was born 4 days after Isabela was and taken emergently to Texas Childrens Hospital after a few days after birth. Michelle and her husband did not know about her complex heart disease until she was in distress at 4 days old. While I was at the hospital, I hardly made any friends as I hardly ever left Isabela's side, but this is one mother I made a point to interact with. As of today, I don't think we have much in common. But, what I do know is that every time I am around her, my awe for her intensifies and all the while, she has me cracking up. She can tell you the scariest, deathly story about this heart disease world, but somehow brings out any little comical piece to it she can. Why do I praise her? She has had a really rough time with Geena's care in the past almost 5 years. She lost her house due to Hurricane Rita. Her husband proved incapable to be the father their special-needs child needed him to be, so she left him. Furthermore, the greater Houston area seemed to be difficult on Geena's weak lungs, so she relocated herself and two daughters to Austin with no home, no job, no money. AND every time Geena has to be hospitalized, Michelle does the most perfect job in advocating for her daughter, sleeping by her side and being so humble and appreciative to every person on staff. Those are just some reasons why I adore her. Seriously, every time I see her or her name is mentioned, you can easily see tears running down my face, in an instant.



( Michelle pictured above when Isabela was 5 mos. old.)

Before I drove to the hospital to sit with her while she waited for Geena's third open heart surgery to begin, I had to meet Sammy to purchase a new washer/dryer as our dryer broke this week. As I was driving, I broke down crying profusely because I was so sad for Michelle today. I knew she was terrified, especially because Geena has recently had complications and a long hospital stay. I was driving and wondering how she must be feeling sitting in the holding room holding on tightly to Geena knowing that the outcome could be a fatal one. Then it hit me...I knew exactly what she was feeling! I proceeded to then cry more. Then, at the hospital, at the sight of me, Michelle began crying. There was soooo much crying. We talked about the good and the bad that comes with the girls' lives, silently praying for more of those times, even the bad ones.

I stayed long enough to learn of the surgery's result and shortly after Michelle was able to see Geena. As Michelle returned from seeing Geena, post-surgery, She broke down and cried endlessly. She was ok, it was just that the old memories rolled back to meet her in that ICU room. As she was whispering in my ear as I held her, my memories rolled out, too. I got a mix of them. Once I got home, I couldn't take it anymore. I sat on my computer and pulled out our cyber album to revisit the past. Again, more crying. I think it was more like self-therapy...so here it is...I thought I would showcase my most treasured memories...the very good and the very bad.

We were given 7 minutes to hold Isabela before sending her to surgery. It was my first time and Sammy's. It was the toughest thing to share in my whole life. I wanted to, but then I didn't. Pops held Isabela on the last 3 minutes we had before her first open heart surgery. Isabela was 19 hours old. I will never forget my father-in-law's face at this very moment. Isabela cried endlessly. She couldn't breathe well.

Valerie surprised me one Saturday morning with Isabela dressed up in this make-shift dress. It was the first outfit on Isabela as she was not allowed to have clothes on with all the cords, etc. Valerie bought this onesie at Costco, cut the legs off and created fringes. I still have this special dress. Isabela was about 5 mos. old.

This is what I did for the first 4 months of Isabela's life. Every day craving to hold her.
The first time I held Isabela skin-to-skin, she was 6 weeks old. I had to get a doctor's order to do this. Always a doctor's order.

Isabela was about 5 mos. old here. We were waiting for her her second heart surgery. We played a lot on the floor like this. I would open the two doors, sit close to them and listen to all the "office gossip" between nurses, doctors and therapists. Yeah, I was nosy!

Yet another surprise, Valerie surprised me with her special pumpkin trifle in honor of my 29th birthday. She knew I love pumpkin. I fell so in love with this dessert, that I make it every Thanksgiving Day now. Crystal adores it. The pic was taken just outside of Isabela's ICU room.
On Christmas Eve, Heather (Bela's cardiologist), stopped by to grant me one special wish. She let me hold Isabela. It took 3 people to put her in my arms. At that point (4 mos. old), Isabela was very very sick. She needed a breathing tube, along with what we know as "Viagara" to keep her alive. What a gift...for Christmas. Also, it snowed on this day in Houston. I will never forget how much I needed to see that snow fall.

That Christmas Day, Crystal told me all she wanted was to hold Isabela. Again, it took 3 people.
Crystal was so sad all those months we were at the hospital. It was her freshman year in high school. She had no friends and felt as if she didn't fit in. But, she refused to complain to us. She took Isabela a very special Virgin Mary ornament on this day.

Michelle Fleming was Isabela's sonographer. Not technically, but she made it a point to always be the one to do her ultrasounds when the orders came in. I will never forget how she would see the worry in my face and tell me the results, secretly. Doctors weren't able to come around for hours to give me news, so she gave me the gift of not having to wait. You wouldn't think it was huge, but for me, it was. Even today, Michelle still pulls up every ECHO Isabela has and takes a look.
Isabela was no top student when it came to Anna's therapy. She would drink maybe 1-3 cc's of milk. But, Anna showed no disappointment. She had few days overall to work with Isabela since she was so sick most of the time. But, Anna never failed to visit us. I don't think a day went by in which she didn't stop by. She didn't need a doctor's order to sit with me and just be my friend.

Jane. She heard about Isabela through her coworkers at Sam's old job. She made it a point to meet me and take me lunch. After that first lunch date, she made it a point to go every single Friday until we went home. She didn't have to, but I am so glad she did. Now, she is one of my most treasured friends and our daughters are such wonderful friends.

Crystal sleeping on the floor of our Recovery Room. Enough said.



I had to express breast milk every 2-3 hours for 11 months. SAmmy was the one who handled the labeling, the storage and the feeding bags. I got to donate 1,000 oz to the Milk Bank in Austin, Texas. Sammy was told that I was the biggest donor they had ever had. I will never forget how proud he was of me...and honoring me with the name "Elsie" (the cow)! Everyone should know, I couldn't have done it without him. And Isabela could not have survived without the breast milk. We later found out that breast milk was the only substance her stomach could digest.At about 5 mos. old, this was Isabela's first Reading lesson. I so loved this day. I was also feeling so lonely.

Our first family photo taken in the ICU. We have taken several professional portraits, but this one will always be my favorite.
Whether I slept in the waiting room or at home, Monday- Friday, I always made it a point to be at Isabela's side before she opened her eyes from a night's rest. But, on Saturday and Sunday, Isabela's nurse, Valerie, took on that job. We got to sleep in, pick up bagels or pastries for the nurses and arrive by 9-10ish. What a gift...

Here' s Christina. She took care of Isabela between Mondays- Fridays. I remember always making sure that Isabela's room was tidy, clean and presentable the night before I knew Christina would be there. You see, Christina is a clean freak. I so loved that about her. She ran a tight ship. She also showed me how I could handle certain aspects of Isabela's care that I didn't think I could handle, like cleaning her g-tube site. She even taught me how to properly bathe her. Cleanliness was huge with her. But, I think what I love most about her is that she was always so upfront with everything. Even today. Her truths about me have been so powerful for me.

I was so glad that Christina and Heather got to take Isabela out of the ICU. I still remember that RSV shot Christina had to to give Isabela before leaving. She didn't have the guts to it ..to Isabela, so she asked Alicia, to do it. I knew then, more than ever, that Isabela had stolen her heart. You see, Christina had a reputation for being hard as steel (you knew that, right Christina? :-))

In the recovery room. I hardly slept. I had no monitors, no ICU nurses. Notice, Isabela is in her car seat. She was safer that way. She soon ended up in my bed. We were told to not let her cry more than 5 minutes at a time.
I present to you : The Dream Team. Her gastro Dr. who personally visited us each day, at my request and then Heather....my life-line in this world. Yes, Isabela is her favorite, most prized patient. She has never told me that, but many, many other doctors she works with have :-) Plus, she makes it a point to be at every birthday of Isabela's, my birthdays and anything else that we want her to be present for. She's not just her doctor, but an incredible friend.

Isbela's bedroom. During my pregnancy, I was afraid she would never get to see it. There were days I wouldn't step in there. I was too afraid of so much that would never happen in there.

But, Finally HOME.

I am sleeping with my phone under my pillow tonight. I will be sitting with Michelle at the hospital tomorrow and the next days. I am sure more memories will continue to be celebrated. I so love this life of mine.

Heart Surgery Updates

There have been so many short-term and long-term goals around here, but I have finally gotten around to transferring my other blog's updates written during the hospital stay. My intentions are to share with my readers on this forum and to include them in our blog's published book format.

You may have to scroll all the way down. I will later organize them into a more appropritate chronological order.

Enjoy!

Home Sweet HOME

Home Sweet Home!!!
Posted Apr 24, 2009 12:45pm
After many hugs, kisses, photo shoots AND one last walk with Brad, we left the hospital around 11 am. Everyone made it a priority to get us home fast this morning. I so love the medical team at the hospital. My only complaint: much better chairs to doze off on in the ICU.

This one will be short...I have to get back to our team captain..as she raids the leftover Easter candy she never really got to feast on 10 days ago!

We ALL did this together...THANK YOU TO EACH OF YOU!

Post-Surgery: Day 7-10

Day 7
Posted Apr 20, 2009 6:22pm
Isabela's famous words of the day "Let's go walking Mami!" It was great to hear her enthusiasm since that is the key to help the chest tube drainage and repair her lung issues. At this moment, she still requires her two side chest tubes and is on virtually no oxygen! We walked so much and later in the evening I happened to ask my friend Robyn, her physical therapist, how I would know that her oxygen tank had depleted. Turns out, we walked all those hours w/out any oxygen...empty! So, that was encouraing for us as we are trying to work our way off of it. Only 1/2 of a liter to go. Also, this morning, ISabela had her middle chest tube pulled out. The surgeon was adorable and gentle. As I was listening to the child next door scream bloody murder after his chest tube removal, Dr. Bryant was warning me that Isabela would experience a fair amount of pain. So, again, I encouraged her to scream and cry, even though she was on a small dose of Morphine, I was told to brace myself. Wouldn't you know it, a whimper here and not there. She was done and the nurse and I looked at each other like "are you serious, you're not screaming?" It was funny and I was relieved. Not only did she have the tube removed, but her steri-strips covering her chest incision were removed. What hid under it was a bad allergic reaction to the strip. It looked like a relaly bad sun burn! WE have a hydro-cortizone cream on board.

On a another great note, my mother and I noticed that Isabela is reclaiming her silly personality. There were many smiles and laughter. WE were so grateful! I was one full of smiles today, too. Isabela can now walk on her own and ride a tricycle better than ever! Again, she just amazes me!

I think the highlight of my day today was when the PCA (who takes vitals every 4 hrs) commented to me how she was telling other nurses just how beautiful Isabela is, "precious" is what she added. I thanked her and told her that I agreed. Then I proceeded to describe to her just how beautiful she is on the inside, too, and how we felt that was most important about her. She told me "that's what I meant, beautiful in the inside."

I so love you Isabela.....

Brenda

Day 8 - Part 1
Posted Apr 21, 2009 6:58am
Good Morning!

We have been up around here since 4:30 am for weight check, vitals, x-ray, chest-tube drainage and medical assessment, already! Of course, that does not inclue the hourly overnight interruptions for medications, breathing treamtents and more vitals. It know it sounds awful (and feels awful when you're exhausted) , but every piece of those bedside services are necessary. The assessments are used to evaluate Isabela's progress and imperative for discussion during rounds to design the plan of the day to ultimately heal her.

So, in today's rounds, there was debate on removing her chest tubes! That's great! However, the surgeon we just met yesterday was not very comfortable extracting them since he just met her. Wanting to be "conservative with her" is what he told me. I was "oK!" with that. I love that word "conservative" when it comes to Isabela's medical care. I say, Let's get it right!

Anyhow, so, don't know a discharge date yet, we have only begun day #8, but we're getting there! Once chest tubes come out, we stay up to another 48 hrs. for monitoring. Not bad!

Let's pray that they come out tomorrow!

(make sure to read yesterday's update posted below)

Brenda
Day 8 - Part 2
Posted Apr 22, 2009 5:55am
It's about 4am, and I think I slept a straight 3-4 hours with one breathing treatment interruption right before. I feel pretty good and Isabela seems to be sleeping pretty comfortably, with no oxygen assistance, may I add! Hmm...I may also feel so great because I know today is supposed to be a really good day. Her chest tubes are scheduled to come out this morning! Of course, ISabela's chest just has to confirm that her output overnight was stable or decreased. Once that horribly painful procedure is done, in order to work toward the highly anticipated discharge, she has to have an ECHO, heart ultrasound, to confirm that her heart is squeezing as it's expected. Also, her chest x-ray has to prove that Isabela's lungs are quite capable of handling her breathing without those highly pressurized breathing treatments she gets every 6 hours. Isabela can not go home needing those treatments because the contraption utilized is not very mobile. So, lots of praying for big things so that we can go home in a few days!

On a different note, I have to ask the surgical team overseeing her care if "Flirting" is a factor looked at when thinking about her discharge readiness, because we could safely say that Isabela can check that off on the checklist. Yup! Isabela has developed her first crush! My father-in-law and I saw its conception right before our eyes! You see, Isabela gets her breathing treatments from a Respiratory Therapist. Just about every day, we meet a new person. Today, it was Brad. The minute Isabela saw him walk into the room, she lit up and she had this gleaming smile that she just couldn't help herself! It was funny to still see her smile under the mask as her head shook from the pressure of the treatment (smiles never happen during that). Once Brad left, she walked to the glass door and asked the nurse and the PCA if they could go find him and bring him back to her. They obliged and he was there minutes later. She started laughing, bending at the knees and then ran to get her sunglasses followed by a quick lip gloss spread over her lips! Once she was done, we walked outside and she and Brad went for a walk around the unit, side by side. It was so very sweet to see ISabela's heart react in such a way. :-)

By the end of the day, Isabela's cardiologist, Heather, came by to check on us. I just have to say, we LOVE her, and often times, especially during this special surgery, I feel like she is my lifeline here and anywhere. She is an extraordinary doctor and person. Brilliant, is what we think. She is a huge piece in Isabela's life and future. We had a long discussion about Isabela's life after this hospital stay. While we were talking, I couldn't even believe we are almost there, life after this surgery...we have been talking about this surgery for four years and what big plans could be possible, after surgery. Now what?

Love, Brenda

Day8...or 9????
Posted Apr 22, 2009 10:21am
WELL, THEY ARE GONE!!!!!
I stuck around the hospital this morning for Isabela's procedure of removing her final two chest tubes. It did hurt a bit, but Isabelas just took it in stride, as she always tends to do. Now, it’s time for her Echo, X-rays, and monitoring for a day or so to see how things pan out. If everything goes well, we will be going home in the next day or two. Quite amazing on isabela's part, she beats all odds once again!!!
Thanks all for you constant prayers and support.

P.S. - By the way, the respiratory therapist will not be coming home with us. He will be staying at the hospital treating other kids, advance, and hopefully move to another country soon.......

Sincerely
Sam
Day 9 &10
Posted Apr 23, 2009 11:11am
I am so sorry Carepage Friends for not updating yesterday. As usual, we have had guests and to prevent Isabela from climbing the walls in this room, we have been parading all through the unit AND outside! Yes, we got to go outside yesterday! Isabela and Diego played for a good, sunny while. I was thrilled for Isabela and even thrilled for Diego. He has been kept away from the park and public places for several weeks by his Mommy so that he can remain healthy enough to come around Isabela so that they can play together and so that his Mommmy, Daniela, can visit me every single day! AND his Daddy will be leaving work early today (as he's done before) so that Daniela can come alone to give me a break! Anna and Mark have also had a great deal of sacrificing family time/work time to be here for me all these days!! I am telling you, this hospital stay is not all Me or Sammy. FRiends and Family are doing everything in their power to be here in any way and when they can't, I get the calls, the messages and the spiritual energy I need! You all ROCK!

So, today, on this wonderful day that I get the confirmation that HOME is TOMMORROW, I called on my mother, she will stay with Isabela for a few hours, and I will finally get to see my home...to take a long nap! I feel sooo guilty about it, but I am soooo exhausted! sleeping 3-4 interrupted hours a day is not so easy when you have a 4yr. old that is back to her active self! YAY!!!

Poor Sam, I know he hates that he can't help me much by sleeping here. He has responsibilities at work that he can not neglect. You ROCK too!

Crystal, we can't wait to see you, hope you can come this weekend, you are the best medicine for Isabela's heart...mine too!!! I love you.

I will update more soon!

Brenda

Special Shout-out from Sam

Sam's
Posted Apr 20, 2009 12:17am
HEY ALL, THIS IS SAM.
Do I seem pleased, you bet I am!!!
Isabela’s oxygen saturation continues to climb. She is walking around now, and had a great day. Hopefully we can work on getting her chest tubes out soon and her oxygen sats up just a little more so she can go home soon, but we will wait until she is ready.
That little girl of mine continues to amaze me!!
Now, in her life, she deals with these extraordinary changes and she questions me “why”. “Why is this here, what are they going to do with this, why are we here, why do I have this thing on my chest?” I sat and watched her sitting up in her chair today and she is bewildered by what is going on. I looked into her eyes today and see that since she has gone through this, she is uncertain of the next moment and what it carries. She is just smart enough to know that things are “out of the ordinary” but not smart enough and too young to understand why.
Isabela is an amazing child. She continues to deal with uncertain situations and strives in the end. And, like her mommy said today, does it all in a respectful, polite way. She treats everyone around her, at any given time, with politeness and never has a bad attitude toward anyone, even nurses, when things are not going well. I want to share on example of her personality. Today, early in the morning, a breathing treatment was scheduled for her. Not a regular breathing treatment, this machine is like a nebulizer or CPAP machine on steroids. It is uncomfortable, noisy, annoying, and foreign to most that have it for the first time. The respiratory therapist comes in at about 6-6:30 am this morning to give it to Isabela. Isabela is asleep, of course. I heard her come through the door and woke up to go stand by Isabela. Isabela heard the machine go on and looked up at the lady and said “please, not now, I am trying to sleep, please come back later”. I thought to myself, if someone were to wake me up in the middle of the night to do that to me, I would not be so pleasant. So she continues to strive through these obstacles and continues to beat every one of them, YOU GO ISABELA!!
I do not write often lately, but I would like to thank some of those who continue to help us with Isabela’s recovery time. First of all, my dad and Brenda’s mom. I truly know that because of you two, we are able to focus more on what Isabela needs to recover from this surgery and get better as quickly as possible.
Dani and Anna, WOW!!!!! You two are the glue that I think holds Brenda together every day. She loves you two very much and your support and aid to her every need at this time is pretty evident from m point of view.
My sister Nancy. Our stomachs thank you!!!! Bringing us food, babysitting Isabela while Brenda gets a little break, and the overall support that you have given us is amazing. Thank you so much!!
Raveena, that basket and other items are out of this world!!! I looked into the basket that you gave Isabela today very closely for the first time and noticed all the goodies in there. No only the basket, your other items really catered to what Isabela likes.
I can sit here and write all night about you all, so many of you love Isabela and know that each and every one of you are on my mind.
Kelly and Ellen, you two also, I know that you have been thinking of Isabela.
VALERIE, YOU ROCK because you are one of Brenda’s rocks!!! You are very important to us.
Christine, miles away and still doing what you do, awesome!!!
Rob and family, Isabela loves her stuffed toy and clothes. She loves flip-flops!!
Multiple gifts, calls, IM’s, e-mails, etc. I recognize every one of you.
Last but not least, my wife Brenda. Great job on everything and keep up the excellent work that you have been doing. “Tough Love” at its best, with a hint of class!!
I have more to say but I will continue at a later time.
As always, thank you all!!!

Sam

Post-Surgery: Day 3-6

Fontan Update
Posted Apr 16, 2009 3:31pm
Isabela's night went okay at first. Throughout the night Isabela's oxygen saturation dropped lower and lower. Finally, this morning, it was hanging around the high 70's to low 80's area. She is having some issues with her lungs because of in-activity and maybe even a little fluid buildup in them. This morning we were in her room trying to do anything that we could to get her to expand and contract her lungs to try and give them some work to increase oxygen flow in them. The gave her some zopanex(inhaler) to open her lungs up a little and also hooked her up to a CPAP looking device to kind of force aerosol misting air into her lungs in a pumping type action, to try and stimulate them. It helped a litte, so that is where we are at this time.
Isabela's frustrtaion with the no drinking regimate is driving her crazy. Along with all the painful lines and needles all over her. That does not help the issue at all :(.
We will let you know more when we get a chance. Thank you all for your support

Posted Apr 16, 2009 11:22pm
I write to you from isabela's bedside tonight as she sleeps comfortably after a full day of hard work. Like Sam mentioned earlier, her oxygen saturations had decreased indicating her lungs required intervention. For a little girl who was trying to recover from 2 open heart procedures, it was overwhelming. Part of the intervention required her physically moving. The triumphs included sitting on my lap and standing up with assistance for a few minutes. My poor baby cried the entire time she stood and during the transfer to my arms. The particular breathing treatments given were another ordeal for her. I really wanted to trade places with her. Then there were the tummy issues. She had what seemed to be a pretty upset tummy. She was given a couple of things to help her move things along. When it came time to go potty, she refused to go in her diaper! So, she waited the three hours it took to get her a bedside toilet. Her heart surgeon was impressed when I told him about it.

So right now, I am waiting for her Aunt Nancy to arrive for her wonderful gift of sitting at her bedside so that my mom and I can rest for a few hours. Sam has left to sleep at home so that he can get adequate rest for work. He lost a lot of sleep last night when he kindly let me sleep 4 hours at the Ronald McDonald Room, along with another good hour for a nice long shower. Awesome, huh?

To be honest, it was a rough day, but I didn't do this alone even though Sam went to work. My mother has surrendered herself to this life of sleeping in the waiting room right along with us. She runs errands for me around here or sits with Isabela for tender hand holdings. Then there are my good friends...the ones who cared for isabela four years ago at this hospital. It's helpful that they have insight and want to do everything they can to make sure I am supported in every way possible so that I can do my part with Bela, successfully.

Again, I can't say this enough to all of our supporters..your every message letting us know how "present" you are, even from a distance, really helps ease any loneliness. Thank you!!!!

Brenda


Day 4
Posted Apr 18, 2009 9:56am
It's about 4 am, my shift has started and I made Sammy leave to sleep in the waiting room's recliner. The report from him on the last four hours: everything great and sats on 96 %, with nasal canula!! Woohoo!! Oh, and Crystal arrived a few hours ago, once the big thunderstorm passed, so a remarkable smile ensued with Isabela! Again, "woohoo!" Oh, she has also been caught moving her feet to the rhythm of High School Music 2, (which we are playing non-stop for her). All fantastic milestones!

So, the condensed version of yesterday's happenings: get out of bed, potty at bedside, attempts at eating, highly pressurized Xopenex treatments and nap. That repeated itself 4x. That was the order from the Dr. Well, to be exact he said, "We want to see Isabela get out of bed 4x and move from face oxygen mask to nasal canula (in her nose only). Although, that may not sound like a lot, it was quite the laborious day for my little baby. I was so grateful to my sis-in-law Nancy for being her to give me sleep the night before and for the meals that were brought to me and Isabela during the day...not to mention the hour I got from a friend to take a bath! All of that was essential for aiding Isabela in today's goals. In the end, Isabela triumphed and is exactly where the docs want her to be! You ROCK Isabela! Looks like we were able to avoid that breathing tube we were headed toward yesterday. Huge relief…

I must share with you, that with every sore step Isabela was encouraged to take today, with every painful stomach cramp that came randomly and with every very uncomfortable breathing treatment she took, when I asked her (in Spanish) "Baby, are you ok?" She would nod her head and sweetly say, "Si", even between her cries. There have been no complaints from her, there has been no grumpiness displayed and most of all, she has been so cooperative with everything we ask her to do. We would have so understood if she was grumpy. But, we made sure to remind her that she could cry if she wanted to and tell us if anything made her unhappy. Come on, TWO open heart procedures back to back! But, you know, that's Isabela, in her most raw state. Nurses have commented on how pleasant she has been to care for.

Albeit, this recovery has not been easy on Isabela, it's coming along. I thank God that one of us is always able to be at her bedside around the clock. Our goal every day, as it was four years ago all those months, is that Isabela not wake up to find herself alone within these 4 walls of the ICU room. WE want her to feel safe and calm. That's enough to motivate us to function on reduced hours of sleep. But, once we are able to go down to the Recovery Floor (15th floor), we will have a pull-out sofa that enables us to sleep more comfortably alongside our little girl. Plus, we get to exceed the ICU's limit on # of visitors at one time (2), allowing us more family time with Crystal here. Also, when she moves, that means one big thing....one step closer to HOME! Nonetheless, I packed us up for one month. We are in no big hurry. We want our baby in the most perfect condition before resuming her life outside of this hospital. Should she need more time, we are one quick drive to our home to replenish our bags.

Lastly, to all of our family members and friends who have spent the past few days, modifying their day-to-day routines, in order to fill in all those different gaps necessary to sustain us throughout the days, you amaze us. That is how Isabela has been able to have her Mami and Papi at her bedside! With that and reading all about everyone's good wishes and special prayers for Isabela, is what makes us feel so lifted, thanks to all of you out there.

To Pops (Sam's dad): thank you for being here every day, even if most of the time I have nothing specific for you to do for us, just knowing that you are sitting in the waiting room all day, "just in case", is so comforting. We love you!

For the next coming days, if you would please join me in praying for appropriate chest tube drainage, infection-free environment and a good squeezing heart. That's Isabela's ticket out of here!

With so much love to everyone reading,
Brenda



Day 5
Posted Apr 18, 2009 6:14pm
WE made it down to THE FLOOR!! one step closer to home...huge steps taken in recovery.

We are just now getting settled in. Will post pics from today in a while...huge difference!

Isabela just amazes us!!!

Brenda

Day 6
Posted Apr 19, 2009 10:50pm
If you randomly stopped by #31 today, on the 15th Floor of TCH, you were probably out of luck in finding Isabela. She was not very keen on staying in bed or sitting around much. She started her day walking about 6 yards out of our room door, before she asked to be pulled in a wagon. But, by the 7th venture out the door today, she had toured the entire floor by walking on her own or foot peddling the black policecar she has claimed on this floor. I was so happy to see her have our special friends and family join us on some of those walks. She was just so impressive! By the time her physical therapist stopped by, she had already made so much progress from the previous day’s session. She was in disbelief!

Besides the steadfast physical therapy we were so involved in today, we were also battling with Isabela's stubborn itch around her chest wound. It's a consensus that it is an allergy to a tape. But, it still has me on the edge of my seat. She is not very pleased with the High School Musical socks we have wrapped around her right hand. I initially layered 7 socks around the hand to prevent her little fingers from irritating the area by scratching. Infection has been one of my very top worries, especially at that particular site. Other than that, we are working on getting one of her chest tubes pulled (the middle one) tomorrow. The other goal tomorrow will be to have her breathe independently. She is barely on 1 liter of oxygen. She's gradually getting there.

Again...chest tubes out, oxygen off and NO infections! It's so nice to only have that to worry about.

Btw, we did see a bit of Isabela's grumpiness today! Mostly, I think she was milking us. She has figured out that this situation here is ALL about her, she gets just about whatever she wants and the word "No" is non-existent. Hmmmm...it's only a matter of time before she's back to her "time-outs" and our repetitive, "No, Isabela!" Can't wait!!!!!

Lastly, many have asked us when we will be home. Honestly, in the course of my many questions, I don't feel compelled to ask that one just yet. We are taking it day by day, and praying for a prefectly healthy little girl. The nurses are Fantastic and getting the job done!! The level of care has exceeded our expectations. We'll get there...

Love, Brenda

Back to the Operating Room : Complications

Surgery
Posted Apr 15, 2009 2:56am
They are taking Isabela back into surgery. Her chest tubes keep bleeding more and more and they need to find ou why.
Sam

A Rough Night
Posted Apr 15, 2009 7:38am
I will start by saying Isabela is doing better now. She did have a rough night. I got a text from Brenda at 1:42AM saying Bela's bleeding was not controlled. She was taken back to the OR, where Dr. Fraser carterized an artery inside her chest to help stop the bleeding. She was re-intubated (breathing tube placed again) but I would think she will be extubated soon if not already. I last heard from Brenda at 4:11AM where she said "Back on a good course." Brenda and Sammy were going to try to sleep some at that point and Brenda's mom was going to sit with Bela. That is all I know. Keep the prayers coming for no more bleeding and continued healing.
Rounds
Posted Apr 15, 2009 11:32am
Dr. Fraser (surgeon) just came in and gave her a thumps-up. That pretty much sums up isabela's state of recovery. The plan currently in place is to extubate her, then begin small amounts of water and then hopefully she will start on solids if she can tolerate the liquid. We hope to see all that unfold today. All the while, we are looking for decreased chest tube drainage.

Sam and I got to sleep a couple of hours! We are gearing up for the dreaded first three days of painful fluid restriction. Isabela's normal disposition does not include grumpiness, whining or unhappiness. We are not looking forward to seeing her go through the necessary course of action.

I am sorry for being short. I am at bedside communicating through my mobile phone.

We are reading every piece of your messages!

We appreciate all of you!

Brenda
Day 2
Posted Apr 15, 2009 9:59pm
Today's course went exactly as planned...strange concept for Isabela compared to 4 years ago. But, we'll take it!

She was extubated about 1pm today. She took her first ounce of water at 3pm, followed by yogurt at 4pm. The difficult phase that we were warned about has commenced. The idea is to keep her dry, which means 1 oz of water every hour and only solids. Isabela adores water! So, not only is her body in pain from a chest wound and 3 chest tubes, she is so thirsty! It's hard to watch, but her body is supposed to magically acclimate to the new fluid restricitons in a matter of days. We have to get used to it as she will be on this restriction for a great number of weeks. Next, is to have her moving around. It will be quite the struggle for Isabela, but we will do it together! Robyn, her newly appointed Physical Therapist (and friend) will supercede in this goal!

At this point, we are praying for mobility, an infection-free environment and sleep for all!

Before I go on my quick jaunt to sleep land in the waiting room, I have to send a note of gratitute, again, to all who have walked with us through this journey in the years prior to today,but especially, today. As we endure this recovery process, I know it's hard for everyone to think of ways to support us, but know that you do so much by praying, calling, sending messages, visiting or bringing meals. All the pieces have been adding up so that Sam and I feel so much more empowered. He and I commented today on what an awesome crew we have. We know we are so loved by family, friends and colleagues. Most importantly, we know that Isabela has a huge fan club cheering her on! That's what it's all about for us.

Lastly, we hope to go home soon with ISabela. But, it will happen when she's ready...whenever that may be.

love, Brenda

Surgery Day - April 14, 2009

Posted Apr 14, 2009 11:00am
Hi everyone. Anna here, Brenda's good friend and Bela's old occupational therapist. I am updating for Brenda and Sammy right now. Bela is in surgery now. We just had a meeting with Dr. Kim, a cardiologist who is on the electrophysiology team. He is a heart rhythym doctor. Basically his team along with the surgeon and Bela's main cardiologist sat down and looked at all of her previous test results and have decided that at this time they do not recommend placing the pacemaker. This may change depending on how Bela's heart reacts during surgery but they feel that they should NOT place the pacemaker just in case Bela will need it in the future. So, pray that Bela's heart rhythym stays strong and consistent during surgery. We will update again soon!

Surgery day - 12:15pm
Posted Apr 14, 2009 12:29pm
Anna here again. Looks like I will be updating on the surgery as the day goes. We just got an update on Bela. The surgeon is still working on opening her chest. It is taking some extra time due to scar tissue she has from the previous surgeries. She is not yet on the bypass machine. We should get another update in 2 hourse or so. We will keep you updated as we get information.

2:15 PM
Posted Apr 14, 2009 2:38pm
We just got back from another update. Once they released all of the scar tissue when opening Bela's chest, things have moved fast. The Fontan procedure is completed already, which is the main procedure that re-routes her blood flow. They definitely did not need to do the pacemaker. Next, is the mitral valve concern. Well, it looks like it does not need any repair at all! The surgical nurse could not answer many questions as to why the surgeon decided not to do any work on the valve. So we are waiting until we can talk with the surgeon to get those answers. But, Bela is off the by-pass machine already and her heart started beating on it's own once her body temperature was warmed back up. Bela is such a strong girl and is proving that today! Keep those prayers up!

3:35PM
Posted Apr 14, 2009 4:00pm
Wow! We just finished talking with Dr. Fraser, the surgeon. Isabela did great during the surgery. Per the pre-op echo, Bela's valve regurgitation was minimal. "Trivial" per Dr. Fraser. Therefore, they did not do any type of repair to the valve, mainly because once they begin attempting to repair a valve, you don't know how that will ultimately affect the valve. So, it's best not to do anything if not needed. The Fontan went very well. They ended up doing an extra-cardiac Fontan due to not needing to go inside the heart for the valve. Isabela's oxygen saturation will now be normal!!! In the mid to high 90s. She will be pink, pink, pink! What a miracle! The pacemaker was definitely not needed. Per Dr Fraser, Bela's rhythym was perfect during the surgery. The only rhythym concern prior to surgery was during her cath procedure, which was likely due to the procedure. Therefore no pacemaker! Bela is waking up right now and they hope to take the breathing tube out before she is moved to the ICU but she may need it over night. Thank you for all of your prayers. Please keep them up for a speedy recovery. The biggest concern now will be her drainage from her chest tubes and preventing any infection.

Brenda and Sammy will be able to see her in about an hour. We will post again soon!

The Healing Begins....
Posted Apr 14, 2009 7:21pm
Isabela is in her old room in the CVICU which is a little bitter sweet for everyone. She continues to breath well with her oxygen mask and her blood gas came back very good. The surgeon was happy with that. She is in a bit of pain and has needed some extra pain meds for that. Brenda and Sammy are by her side and we have been able to visit briefly. Pray for Brenda and Sammy tonight to get some rest and for Bela to rest comfortably overnight. They truly appreciate all of the prayers and comments made here on the care page. Thank you everyone!

And then some...

Posted Apr 13, 2009 3:47pm
Isabela spent the entire day at the hospital today, along with her grandmother, grandfather and me. Can you believe that we had to tear her away?! Yes, Texas Childrens Hospital rocks and Isabela thinks it's one for the best places on earth. Well....it doesn't hurt that she has many many friends there that love her. She came away with many gifts and her favorite, stickers!
It seems like isolation for the past 8 weeks worked! Honestly, I was advised to isolate her for 2-3 weeks, but we wanted to make sure to go that extra mile for her, although it was torture on her and everyone else involved. But to hear that her labs looked perfect and that she looked perfect, was worth it. Although, they are a bit skeptical about her allergies, I got the impression that it wouldn't be enough to worry about. Isabela does have a formal diagnosis for dust allergy (me too!). Spring is not our friend.
Isabela is ready, in more ways than you can imagine. She's ready to meet Chuck E. Cheese, play in a restaurant's playground, drink out of her school's water fountain and visit Minnie Mouse on what would be her very first airplane ride! This is something we have been planning for about 4 years. So, Fontan Surgery...here we come!

Pretty in Pink!

Isabela is almost done recovering at the hospital from her TWO major heart surgeries. It is so wonderful to see her with 95% blood oxygen circulating through her body all the way down to her toes. "Pink" us my new favorite color! For four years, she has had blue fingers and toes (70-82% oxygen). Today, she is astonishingly full of color!

(more to come)

World News brought to you by Sam!

Today was Day #2 of being a full-time Stay-at-home-mom for a 6 month period. I wish I can say it's normal mommy day-to-day stuff, but it's not. It's that and then some. I will go into detail later, but it's all about getting ready for surgery. It's all about getting ready to abandon our home for several weeks. It's about leaving everything in order just in case we are gone for months. I learned a thing or two from our first jaunt with heart surgery.

Through-out the day I was thinking about how for at least the next three-four months, I will not have an outlet, an occasional sitter or an independent activity, away from Mommy duties, but especially that I have to continue to sacrifice any professional ambitions that I may yearn for right now. I have been approached about a couple of new professional roles that seem intriguing for the next school year, but they require a full-time schedule. And I can not. As hard as it may be to reject the possibility, I am completely obligated and willing to embrace my role and love that I have this time for Isabela. Even when she's in school in August, I need to be at arm's length. If only God would have cut me from a different mold, one in which being out in the world, working in my community, wasn't something I need to feed off of. But, ok, at least Sammy gets to. It's funny how seeing your loved ones be so thrilled in their lives, suddenly makes you so happy and satisfied, even if it's with a little bit of jealousy!

Sammy's day-to-day professional responsibility is to make sure that the local ABC news makes it on air without a hitch, at every single news cast. Today was different. His job was to make sure the news made it on air locally AND on a national/world platform. Charlie Gibson from ABC WORLD NEWS has been at his tv station the last couple of days to cover the Houston economy and NASA's plans. Sam got to pal around with him and collaborated with his team for AMERICA to see!! Way to go Mr. IT Manager!

Don't worry about me, Sweetie. I cooked up a storm today and left the kitchen for you to clean!

Btw, behind the scenes, Sam said he was super nice and easy to work with. Tune in!

(My time will come.)

She was right...

I think it was my second visit with my Perinatologist at 18 weeks pregnant when I asked her full of hope and anguish, "Is there another mother, patient of yours, who I can talk to, who can tell me what to expect in my life with a baby with heart disease?" Dr. Adams turned away from her ultrasound screen to shoot me an expression revealing just how surprised she was to be asked that. She replied, " I told you already. This life you are choosing is hard. Those other moms are too busy, too busy to give their time to anyone else. You just don't get it, do you?" YEs, she was quite the militant type, so matter-of fact, and so so good at what she does. I hated her and loved her all at the same time (she was/is the best in Houston for very high-risk pregnancies). She was right about two things. She told me that she would make sure Isabela would make it through birth, but the rest was up to me. The other part she was right about was the busy-ness. Lately, I have been consumed with preparing for my little venture with Isabela, outside of the home. This time around, I know how to prepare, what to expect. Having to think of everything that needs to be done before we're off to the hospital, what needs tending to while we are away, and just how we will celebrate life once it's given back to her. That very fact is what almost made me lose it today. At about 9:10 am today, at work, I almost lost it. I have yet to have a good cry about this whole ugly surgery thing. When the Catholic school asked me at 9:00 am if I could take Isabela in for an assessment and interview today at noon, it pushed me over. I guess I can not really afford stressful unexpected issues right now. By 9:45 am, I was out the door, before collapsing in front of any students.

If I could just find a good hour, an empty one, in which I could just let go.


btw, Although Isabela is a terrible test-taker, she did very well in the assessment/interview, "quite sharp" is what the counselor said. Isabela refused to answer about half the questions, and instead came up with her own literacy and mathematical concepts to show off randomly. After watching the two of us talk and interact with one another, the counselor told me that she can tell we spend a lot of time together and that she is so tender and respectful with people, all qualities she looks for too. She said that Isabela would be a great fit for the Catholic school. I appreciated that the counselor did not put all the weight into the "mark the box" assesment, but quite appropriately observed her in her whole sense.
I am praying for guidance on this one.

Matters for the Heart

Fabulous Cath Dr.!

Pic taken at Isabela's request! 15 hours later....

Pops always there!

Going home with the monitor to determine if she needs a Pacemaker.

Mami ended up eating the entire popsicle!

Next day, with a swollen face from the neck catheter, Isabela attempts to Make Mami some coffee!
Croup, go away!!!

There is no place like Mami's bed!

AND according to Isabela, there was nothing else like her UT
pillowcase accompanied by the blanket of choice all week, Ms. Jennifer's special
quilt!

I would have to admit that I have been neglecting my blog for a number of reasons. Although, there has been so much to write about, I can't say that I have been feeling generous about sharing it. Not that I have been punishing the world, but I just wanted to keep so much to myself and process it first. However, don't let me fool you, if you were to call me and ask how I was doing, I would easily divulge. I have a number of people who can attest to that. I will say this, though, I still need to find that moment. The moment in which I can just have a good cry and not feel terrible about it. But, for that, I would need time.

So, time has been quite the missing element for me around here. Soon after Isabela's cath, our plans to spend the weekend to "celebrate", were instead spent rocking Isabela to sleep in my arms, feeding her on my lap and quite honestly, just staring at her at every movement or resting position. Isabela's apparent runny nose right before the Cath, quite candidly presented itself the next day as a nasty Croup. The goal: keep away from hospital (not another Hurricane Ike visit). Isabela was sooooo Needy! It was so hard on me, to be honest. She has been so beyond that needy, whiny stage. I missed my independent, cheerful, complacent little girl. But, rightfully so, having had catheters in her body and battling a tough Croup, earned her the right to ask anything of us.

Sandra having to come over to see her!

Aside from Isabela's illness, I have been spending my time working on our highly anticipated vacation plan. Isabela's surgery will require us to stay in the hospital for about 4 weeks. Our last extended stay of 6 months, taught me so much. I have a lot of preparedness to work on. Not only am I preparing Isabela for what is to come, but I have to prepare myself. Without going into much detail right now, I will say that mentally and emotionally, I have been thrusted back into a world that I do not share with most people in my life. That world of heart disease, surgeries, treatments, medical care, modified way of life, medical bills and limitations, has found me again. It's a tough club to be in. Actually, quite a lonely one. But...let's not linger on that one too much...

Ok, so, what else? Well, I have been touring schools for Isabela. Her current school is fabulous with her, but like I have mentioned before, I have to make sure it's the right one. I did find one very close to our new home. It's a Catholic school Sammy attended from grammar to junior high school. After asking my one million questions among tens of other parents, I decided that it was a good option. I submitted my application with the fee. However, I got a call the next day, telling me that they didn't feel comfortable in considering to consider Isabela's application. Her heart disease made them nervous. Truthfully, I think I scared them. That was me being very protective. Nonetheless, it hurt like hell! My baby being rejected, as if she was being discriminated for her handicap. This one really struck me. I am still handling it.

Hmm...oh yeah, I have increased my work schedule to 4 days in the last couple of weeks. Wow, what a load that has been. Sammy has not been able to make it home before 7 pm (until tonight, thus having time for blog), so, the evening routine has been all on me. What an appreciation I have gained for those working single mothers. At least, Sammy has been taking care of the dishes. But, from the minute of taking Isabela to school before I get to work and then spending quality time together after dinner, homework, house chores, etc., it has been quite exhausting. Therefore, I have decided to only work 3 days a week from now until the end of March. I still hope to give my students every possible tool for Reading sucess. I will then be off for almost 6 months to care for Isabela before, during and after surgery.

In the meantime, I have pulled my laptop out of my bedroom, I fall asleep with Isabela on my bed around 8:30 pm on most nights and as my friend Christina told me 4 years ago, I am enjoying every minute that I have been blessed to have her, as I forcefully push my fears away, way back on my mind. You see, Isabela is so blossoming intellectually, but physically, she is losing her ground with energy. It really is disheartening to see...until the big surgery, that is.