Deleting Blog

One last reminder, I am deleting this blog.... so please continue to follow ouyr progress at: http://www.caringbridge.org/visit/IsabellaSanchez

Thanks for your support.

New page ...

We are going to be using this Caring Bridge page from now on as it is easier to update. Please sign up for email updates if you wish: http://www.caringbridge.org/visit/IsabellaSanchez

Thanks !!

Update:

Whew, what a whirlwind of a last few nights. Mommy has hardly gotten any sleep because my lil rugrat has decided to throw up all of her food! She is on Enalapril now, because of her heart getting slightly enlarged and we were hoping this would slow down her respiratory rate thus allowing her to eat better. Well, she hasn't been eating better and has been eating only half of what she was eating in the last couple weeks. So, we brought her into the cardiologists office today to see if the medicine was making her vomit- or if it could be something else. We just didn't want the medications she is on to get thrown back up and not help her do what she needs to do. Looks like we will be going for an Upper GI tomorrow. Poor thing! We think she is just throwing up (not every feeding) because her heart is working very hard but just to be on the safe side....

I am praying all goes well with it, and hubby can get home with her and get some rest. Hubby has been so wonderful in caring for her... I wish I could be there but the bills are calling my name. (BTW- my insurance doesn't cover the meds because they are compound.... what kind of BS is that!?!?!) Anyways....

She is holding her head up well, and has started to sit in a Bumbo chair. I think she thinks its pretty cool if I do say so myself! She loves her bath and smells SO good. I love the baby smell. That is, until she gets formula under her neck. Ick!

After a crazy day at work, and a crazy day with the baby being poked 5 times for blood work... I am ready for a massage. Or, just being a bum on the couch snuggling with my "Belly" will be just perfect.

EAT Bella, E-A-T !!!!

Whew! What a week!
Logan's birthday party, getting back into a routine that includes work, a crazy household and a newborn!

Isabella has been doing very well up until a couple days ago. She was getting real sleepy and not wanting to eat. I thought maybe it was a growth spurt, she even slept thru the nite! YAY.
Come to find out, that was not good news! She had a nurse check last week and she hardly gained any weight in the past 2 weeks =( and with the news of the left side being slightly enlarged at the last echo, she was put on another medicine to try and make her heart rate slow down... thus allowing her to breath slower (she was breathing a little too fast last week) thus allowing her to eat better and gain weight. It takes a lot out of her to eat. Hopefully, it works. Had a few problems w/ keeping some of the meds down but we are woking on it. I am hoping her lil body continues to hold out as long as possible until we absolutely need the 1st surgery. For many reasons, most importantly being she will be bigger and older. I just need to fatten her up =) Anyone ever put lard in a baby bottle?!?  (Kidding, of course) but she needs to be as chunky as she can be.
I am still amazed at how strong she is already, and what a great baby she is. She will let you know if shes upset thats for sure, but generally speaking she is a good girl.
She just found her hands a day or two ago.... and they must taste pretty good!! Will see the cardiologist soon.... eat Bella...EAT!!!

Love my kiddos!

My 2 sweethearts!!

Cardiology appt. today!

Logan had an ECHO & an EKG done to check his heart murmur just for a piece of mind. All is good with him! (YAY)
So did Bella. She did SO good w/ the Echo- not so much with the EKG lol.... poor thing.
Isabella's heart on the left side, is slightly enlarged so we are keeping an eye on it still. This is new news, but then again they haven't done an echo since she was released from the hospital (just EKG's) so maybe its been that way for a couple weeks? Anyways, we are just going to keep on watching it! Tentatively, We are looking at a heart cath around Thanksgiving, and our first open heart surgery around Christmas. Until then, I am going to ENJOY every minute with her.... and continue to say my prayers! She is such a strong lil girl, with such an interesting complex heart. It amazes me! I am learning so much about our heart and I must say, its pretty interesting! Her oxygen sats were good... not too much, not too little. Overall, happy mommy today! Bella, not so much =/

Since we didn't win the lotto last night, I start back to work Monday. One can hope, right!?!?! =p

5 wks! Whoa!

The past 5 weeks have FLOWN!
I can't believe my little girl is growing so fast!
I have noticed more hair on her lil head, longer eyelashes, she definitely has DADDYS toes (for those of you who don't know, my darling hubby has size 15 shoes!!! ahh) and she has quite the personality!! But, I love it more and more each day!

Looks like I will be going back to work early per the bosses request.... and as much as I hate to go back to work at all... It will be nice to be back in a routine.  I just worry so much, that I will miss something-- or not see something I need to. I have to watch her VERY carefully. The other day, Bella was struggling a little to breathe and her leg was blue. She gets blue when she cries (thus spoiling her by picking her up each time- but I don't want her to loose her breath!) and we have another Cardio appt. on Friday to talk to the DR about it. My other baby (almost 8 yr old baby) will get and echo done as well.... just to put my mind at ease. I know he (and myself) have a heart murmur I just pray its innocent like mine!

I also know as wonderful as my husband is... no one can take care of my baby like mommy. Guess he will see what a stay at home dad's day is really like =)  I have faith he will do well.... I just don't want to miss a thing!

It has been an emotional, demanding, exciting, sad, unsure rollercoaster of mixed emotions these past few weeks. (Still kind of are "baby blues" really do stink! I am sure all the people I have looked at in the cafeteria, Publix, gas station...restaurants probably think I am some wacko emotionally unstable woman!!! Hate to say it, but they are partially right. Cant wait to get thru all this & back to my own self SOON! I think a lot of it came because I do feel a little cheated that I didn't get those "extra" days with her while on maternity leave because we were in the hospital but I will get over it.

Reading thru some of the blogs on heart babies, and thru some heart baby communities I am reading thru on various FB sites, and websites.... I seem to find the saddest ones =(  I pray every night for all the heart babies in the world... and I just ask God to keep Bella's heart strong & getting stronger. Good thing, there is quite a few resources for heart families out there... cause this is all SO scary! I freaked when my son had tubes put in, I don't even want to think about how I will be when my lil girl has open heart surgeries. =*(   <<sigh>>

Will end this on a positive note though..... we.are.so.blessed. <3 amen!

Weekly DR Appts, and she is doing well so far! She is up to 8lb 10 oz ... Yay!!
Her sats are around 87% which is good as well.
 
So proud of her, and so happy to have this time with her! Its going to be so hard to go back to work!! =(
Keep up the good work Isabella..... and thank you God for watching over us! We are blessed!

I am so in love!

Cant believe little Isabella is 2 weeks old today! She is such a sweetheart!
Lots of DR appts this week, but I think shes doing very well!

We are also participating in the American Heart Association "Heart Walk" on Sat. Oct 1st in Bartow if anyone wants to come walk with us! We are walking in support of Miss Isabella and other children born with a congenital heart defect. Thanks!! http://polkheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=456730&supid=335328701

Again, thanks so much for all the prayers. She is definately a loved little girl.... and we are so thankful & blessed.

Home where you belong!!

Isabella came home Thursday afternoon. She is donig well so far.... trying to fatten her up & Im not sure if its working!? Lots of DR appts coming up here soon. Having a new baby is hard enough, then add a stressed, emotional, worry wart mommy and WHEW I am exhausted. Thanks SO much to all the people who have said a little prayer for Bella's special heart. We are so thankful..... and we appreciate the thoughts and kind words. I know its going to be rough during the 1st surgery, but your thoughts and prayers are helpful and much appreciated.

Nurse

Nurse just called..... Isabella may be able to come home THURSDAY!!! Yay! Come on sweetpea.... eat lots!! Yay!!

Prayers go up, Blessings Come Down!! Come on Bella you can do it!!

Had a great day with my lil gal!! She was so smiley today... and just too cute for words!
Her biliruben levels have been creeping up, and they did go up a little more this morning- but they dont seem concerned. I thought about trying to sneak her out of her room, so we can go outside and get some sunshine but I think they would have noticed when I tried to get out the door and she wasn't hooked to her monitors =p  HA!
 
She has lost a little weight, so hopefully tonight she eats like its going out of style. Praying for good eats and good poops! (You know you're a mom when you pray for poopies!)
 
Talked to the Cardiologist on the floor, and he said he is very surprised at how well she is doing!!! YAYAYAYAYAYAY BELLA!!!!!
He said he doesnt think she will need to have the band surgery right away- or at all depending.
We will still need surgery around 4-6 mo.... but we "may" be able to skip this band procedure. Yay ...yay and YAY!!!
She is still under observation and will be for a few more days (I am guessing another week) BUT IF all goes WELL.... we may be taking her HOME, soon!! I am SO proud of her and SO excited! B.U.T I only want her to come home when the DR's are ready. So, we will wait patiently!
 
Thank you GOD for your blessings.... and THANK YOU to everyone who has said a little prayer for Miss Isabella. It means so much to us and we know God is getting a lot of messages about Isabella... so we know he's listening!!! AMEN!!! 

"Prayers go up and blessings come down"

Yiddish Proverb quotes

 


 

Go Bella GO!!

Went to visit Bella today.... she was moved from the CVICU to the PICU because there was a more critical patient that needed her room. That a plus for now!! yay Bella!

She is eating (and pooping on mommy) Like a CHAMP! So proud of her. I just love to sit and hold her. Her smell, her eyes, her perfect little face makes me so happy to be a mommy to her. She has my heart (and daddy's) for sure.
Hopefully, Logan will be able to visit with her some this weekend. I hear we have a hurricane coming? I have no idea. I have barely stopped long enough to eat -- let alone check the news.

She has been off the bili lights for a couple days, and unfortunately her levels have crept up again. She doesn't look jaundiced to me... but the blood work shows different. Hoping we will get that all worked out.
I am waiting to hear back from the nurse to see how her respiratory rate has been this evening, for us it seemed good.
But, she goes in spells. I know they were going to do another ECHO to see if the ductus has closed, and Im not sure if that was done this evening either. They have said many times, its going to be up to her to see if she can manage the "blood flow" to and from her lungs/heart on her own-- so we are still just waiting to see.

As much as it hurts to have her away from home (I still smell her baby smell on my arm, and its wonderful!) I know she is in very good hands. As some lady in the elevator said "The most expensive babysitter you will ever use!" LOL.
Cant wait to take her home, but for now Im still praying for her heart and visiting her everyday for our snuggle time. I love being a mommy.

Mommy is Home

What a whirlwind of emotions!!

I am an emotional person anyways, but add baby hormones, the CVICU and not being able to help your child and I am a hot MESS!!

We left Isabella this morning at the ICU, and even though I know she is in good hands... I still get upset. The whole way home I cried at least 10 times LOL. Ahh...

She is doing better. Her color looks perfect, she is off the bili lights, and eating like a CHAMP! They tell me a lot of times, heart babies don't have much of an appetite-- and I am glad she does :)
After a roller coaster of a week, She is off her IV Fluids, and has a little bit of oxygen still. Her breathing is still sporadic and they are waiting to see when the ductus in the heart closes. After it closes, they will watch her and decide what to do next. IF she can manage the rhythm/blood flow on her own they will not need to put a band around her artery. If NOT, then they will. This is one of the 3 open heart surgeries she may need.
We know she will need the other 2, but just unsure about the 1st.

I can say being the mommy of a heart baby is very scary so far.... and Ive only been thru a fraction of what other heart moms have been thru! I hope to find strength in their stories.

Thanks for all the prayers for my sweet girl. She is definitely loved.... and we are very, very thankful. Cannot WAIT until she comes home. Thank you God for a beautiful baby girl.

i am a tough girl!

Update this morning.... she did good thru the night. Still on the biliruben blanket for a slight case of jaundice. She did get taken off the meds we needed her off of last night, so hopefully she is OK to start eating here shortly. This is so hard making my body get up and walking there to see her. I'm forcing myself because I don't want o miss one minute..... but its so hard when u can barely walk =(  I also think this is all getting to me. Why do crackheads and people who don't want kids have perfectly healthy babies and people like Justin and I who are loving, supportive parents and always put our son first....have a sick baby? I know it could be worse...... and overall given the circumstances right this moment she is doing good.... its just not fair, Or maybe I'm just having a "moment". Praying her o2test comes back OK and she can start eating. Poor thing. I am amazed at her strength though :-)

24 hrs old

Bella is snoozing away in her special little bed. she is now under a bili blanket for jaundice and they are giving her an antibiotic because her wht blood cell count was elevated. poor little gal has so many holes poked in her :(   i got to hold her again today  YAY    and she was trying and wanting to eat and i felt bad because i couldnt feed her, yet. they have her iv nutrition right now... so we are hoping she gets to feed tomorow. poor lil thing. everyone here has been super nice,,,,,and i cannot WAIT  to take her home whwew she belongs. i appreciate what everyone is doing for her in the "NICU Hilton"@ / lol... but i want her to come home!  She is stable..... and for right now i am doing good =)

We arrived this morning right at 5:15. Justin rushed me out of the hotel---he was afràid we were going to be late. Walked i. And said "we are here to have a baby!"  That felt kinda weird but hey. I stressed all day yesterday, had at least 5 nervous breakdowns :-)  and i was ready to get this show on the road. Get in triage, settled in and answered 5000 quextions. Dr. Comes in and cracks a few jokes. Then off to surgery. Def. Have to say this c/s went much better than the last one. Little scary and felt like i couldnt breath...but we made it! Update on lil Bella:   she is in the cardiac icu right now kinda sad she can't be in our room....but it the best for her to be there. They have done numerous tests/echo's etc and they still says she's got double inlet left ventricle aka Holmes heart. Here color is very good and she is cooperting nicely. I got to finally hold her about 4pm. She is so beautiful. The cardio team will continue to watch her for a week or two and decide if we need the first surgery right away or not. She is so strong, and has a lot of ppl praying for her.... so thanks to everyone's prayers, thought and kind. Words. We love you all.

Just an update..... Isabella grace born 8-15-2011 at 7:55am. Weighing 7lbs 11oz & is beautiful!  Going thru all the tests right now.... update coming soon. Thx for all the prayers. Loving bayfront baby place and all children's hospital...we are in good hands. Mom is doing good.

Monday is the BIG DAY!!
 
Miss Isabella Grace will make her grand entrance on Monday 8/15 as long as she stays comfy this weekend!!
Justin, Logan and I are SO excited to meet her.... and cannot wait to hold her. We are so blessed to have such a wonderful family of 3.... almost 4 !!

I cannot believe Justin and I have been married for almost 11 years and we are still just as happy as day one. I would not be able to go thru this without him, so I love you Justin!!!! (and Logan!) You both are my world. Thank you for always being YOU and being there for ME/US!
 
We will be updating the blog as much as we can ... so feel free to "follow" it if you would like. Being in the NICU and all the machines, I am sure we will have limited access to our phone(s). Thanks again for all the thoughts & prayers.
 
-Excited and Anxious!

Nursery is Finished...All Childrens Tour

So, last week we had our last echo before our scheduled C/S date. New news -Dr said there *might* be a leaky value. He wasnt sure, and its hard to tell right now with her size and position.  Another good thing is that they are thinking that the heart defect is an isolated thing, and that the baby is growing well otherwise.

We got to tour All Childrens today, and I felt like we were all in good hands. Secure, Clean, Quiet, and the nurses and staff already knew OF Bella and her condition. I felt as if we have already been there before- which was comforting. Although, I did want to cry and was just anxious. In a few short weeks, that's where our baby will be! And i won't be able to run away! Now I feel like i've been looking at all this like it's something I'll deal with later. Now it IS later, and it's time to deal with it. And I'm just so nervous. I have so much guilt. When people ask me if I'm excited about the baby being born soon, I feel like saying, "excited about what? That I'm about to be scared out of my mind of what could happen?" I will be happy to finally meet our little girl and I realize how lucky we are... That it really can be so much worse. I want to tell her to stay in there forever, where she is safe!

We also met with the surgeon, and he was impressed that we've done our homework :)

Guess you can never REALLY be fully prepared.... but now that we are about 3 weeks away..... we are both as prepared as we can get, I think. I just hope my mommy heart is right and she will be ok.

Finished the nursery today.... thankful my son got to take part as well, we love it. I know Isabella will too.

Hospital Tour- Delivery

Had our hospital tour yesterday, and I must say.... I am very impressed! And very thankful. With all these setbacks we have had lately, it was nice to get out of the house and see where our little Isabella will be born. No matter what happens, I know she will receive the best of care... and that makes me happy. After smelling the hospital, and seeing all the equipment, I am getting a little nervous about the c-section. I just pray it all goes well and that we have a beautiful lil gal who's heart is not as bad as they had thought. We meet w/ the surgeon soon.... I hope I'm not having one of those emotional days  like I have been having lately. But, its inevitable.... I probably will. This is all so scary. To know your child's heart will never work properly.. is a feeling I cannot describe.

Bella, we are ready for you... your room is almost finished, clothes are clean and diapers are in abundance. We just hope we get to take you home. In my mommy heart-- I feel like you'll be just fine. I hope I'm right. One more month.

On a side note-
Praying for my cousin Matt's little angel, Camren. At only 7 weeks old, the Lord decided it was time for Camren to come into his Kingdom. My heart if hurting for them... but I know hes safe.

32 wk OB/GYN Appt.

 <--- Face & Lil arm!!

Doctor's appt. this morning went well. Has an U/S and Logan & Justin got to see her again! She was active and yawning like crazy. Chunky lil' cheeks (which Logan says she got from him lol... he is SO proud!) and long lil' toes. Oh man, she's got Justin's toes!! (hubby wears a size 15 LOL)

Anyways, appt. went well.... got sent to the hopsital for an NST test. When I got hooked up... reality kind of sunk in. OMG I am having a baby!! OMG I am having a C-Section!! OMG OMG OMG!!! LOL... kinda scary... and exciting. The smell of the hospital brought back all kinds of memories w/ Logan's LOOONG delivery... some painful but mostly exciting. She will be here before we know it. Our little family is growing and we are excited and nervous! In my mommy heart I feel like everything will be OK... still praying. Once more ECHO , Hospital Tour and Meeting w. the Pedi. Surgeon in 2 weeks. Thanks for your love and support.

Time Flys When Your Havin' FUN!

I cannot believe it is almost June! wow! Time has flown by this pregnancy for sure! It seems like only yesterday around Christmas we were making our big announcement!

Baby shower this weekend! I am so excited, and my sweet sister has been working really hard on this. I am a bit nervous, I dont like being the center of attention when it involves me! LOL. Let me talk about veterans on camera and I am fine... but me, ugh.
Still, none the less I am excited people want to share in our joy.

Lots of DR appts. coming up this month as well, still hoping and praying for our lil Bella. I can feel this getting harder... just asking for strength and understanding. As for Logan, he was chosen to be on the All Star baseball team  (YAY) I am so proud. He is going to be the best Big Brother any little gal could have. Isabella is already a very lucky girl. Thanks for your love and support. I am sure I will lean on you all again soon.

PS- HAPPY MEMORIAL DAY, thinking of all our veterans past, present and all our troops. Most importantly, to my hubby for serving our country. HOOAH!

Update from Cardiologist Appt 26wks 1day:

First, I have to say Dr. Galas, Pediatric Cardiologist w/ All Childrens is amazing! He is one of the kindest, knowledgeable and most caring Dr's I have ever met. His bedside manner is impeccable. We are blessed to have Bella under his care for sure. Everyone at All Children's (so far) has been fantastic. Thank goodness. If you should ever have the need for a Pedi. Cardiologist.... Dr. Galas is the one!

Appointment went well yesterday (she is 2lbs 1 oz!!) , looking at the blood flow and valves....Dr Galas says he thinks everything looks good. Good squeezing, good pumping and no leaky valves (which is great news!) Her heart (obviously) was a wee bit larger so the scan was def. needed to get a more definitive answer on her condition.  I will go back again for a 3rd Echo in approx 4-6 weeks to look again. Dr. Galas thinks she has what they call a "Holmes Heart". This is a very rare condition, where there is an absence of the inflow tract of the morphologically right ventricle (RV) and hence a single left ventricle (LV). The great vessels are normally related, with the pulmonary artery arising from the small infundibular outlet chamber, and the aorta arising from the single left ventricle.

I know, that sounds like a lot of Dr mumbo-jumbo for sure. Basically, he thinks its the same at the other diagnosis, except the right ventricle is not an outlet, just an inlet for blood. Her blood is still mixing together, and she will still need multiple open heart surgeries. Depending on her vitals/tests/echo's when she arrives will depend on if they do the surgery right away OR if they will wait until she's about 4mo old. It will all depend on her & if she can function with her clean and dirty blood mixing.

I have been researching this condition, and it seems as if the "Holmes Heart" is very rare. The Holmes heart is named after Dr. Andrew F. Holmes, who first described an autopsy specimen of this congenital heart defect in 1824. Dr. Holmes later became the first Dean of the Medical Faculty at McGill University in Canada.

Interesting. The more and more I learn about the heart, the more it interests me for sure.

Another thing, since we will be delivering at Bayfront Medical Ctr/All Children's in St. Pete, we will probably have a stay at the Ronald McDonald House. After speaking with the nice lady there, I am in awe of what this organization does for families who's children require a hospital stay and need a place to unwind. Located across the street from the hospital, the Ronald McDonald house is a low cost "hotel" if you will.... that you can stay at when your child is hospitalized. I never would of thought we would be looking at our options to stay there, but what a WONDERFUL option it is. One less thing to stress about. Thank God!

A stay there right away may not be necessary, but soon enough if will become inevitable. I would like to help with their "wish list" as much as possible: http://www.rmhctampabay.com/images/pdf/SP%20Needs%20Feb%202011.pdf  and have already started collecting items to bring with me to my hospital tour on July 9th. If anyone has any of these items they would like to donate, you can bring them to the Baby Shower or we can meet up. I know they would be very grateful. They are doing awesome things for sure!! Thanks for you support, prayers and for getting this far.

We have an appointment to go see the pediatric cardiologist @ All Children's on Friday. Hoping for some *better* news for Bella!
I cannot believe I am almost in the 3rd trimester.... Time has flown by!
I remember telling my wonderful husband, 9 months is a LONG time and it will creep by. It did the first time, with Logan... but then again DH was deployed so of C-O-U-R-S-E time went Slllllowly!! =)
Baby shower coming up in a few weeks as well.... YAY! So excited!

Keep us in your prayers.... thank you all!

Call from DR & I may turn into a Subway Turkey sandwich.

All I have to say today, is AMEN!  Amnio results came back normal today. Praise the LORD! I was so worried.

On a side note, I am keeping Subway in business. I promise you I have been there no less than 100 times for lunch, this month alone. Ok, ok... that may be exaggerating a bit. Maybe 100 times this pregnancy so far :)

Does it count for veggies when I get pickles on the side?!

Specialist Appt.

After spending almost 2 days at the DR in Tampa, they believe she has Double Inlet/Double Outlet Left Ventricle. Which basically means, instead of the main arteries (usually one going  to each side of the heart)… they both go to the left side… making the right side of the heart smaller. The blood is mixed (red and blue) in the left ventricle and then pumped to the body. Basically the left side is doing all the work.

It is a very complex congenital heart defect that effects to 5-10 out of 100,000 babies. She will have to have at least one possibly three open heart surgeries when born.

We are still in shock I think, but I have come to the conclusion that God is in charge and there is nothing I can do to make it better at this moment. I am trying to stay strong, but its hard esp. when I am unsure what the future holds. We appreciate your thoughts and prayers more than you know. Please keep Baby Isabella in your thoughts & prayers. She will have a long road ahead of her w/ at least one (possibly 3) open heart surgeries before the age of 3.

It's A.....(4/4/2011)

GIRL!  Of course we are excited! We have a 7 yr old son, who is the apple of our eye. He is the sweetest, kindest, smart & loving little baseball player Ive ever known. (ok ok, So we are a little biased) Anyways, at our ultrasound today (19wks) we found out we are expecting a little GIRL! I knew it was a girl all along, and so did the hubby. Logan, of course, was hoping for a boy to play ball with.... but he will be an awesome big brother. :)
While we were sitting in the waiting room, the hubby already was discussing about having to clean his shotgun for the MUCH later (dating) years. I just laughed through my years of joy.
Then the DR came in.

He delivered some not so good, and rather frightening news. He told us her left ventricle was very small... and that it was an issue we would need to see the specialist in Tampa about. He mentioned Hypo plastic Left Heart Syndrome, a very rare congenital heart defect. Our excitement came to a screeching hault. The tears were flowing... and the heartache began to set in. Is she ok? Can it be fixed?
Too many emotions and questions at that very moment. This is not fair.... why us?