UPDATE: DAYS 8 & 9

3/24

Boring..boring day!! Sooo ready to finally get out of this hospital. At this point everyone's main concern is getting Jaida eating how she used to before surgery. It's weird because sometimes she'll eat 4 oz. and then others she'll eat about 2oz and 25mL and be too tired to drink anything else! This up and down stuff has got to stop! Other than focusing on getting her eating habits up, i've pretty much been lounging around all day.. not much to do in a hospital lol. Daddy didn't come visit us tonight because he was cleaning the house, getting it ready for baby girl and I to go home!! =) Chances are if Jaida eats consistently tonight and both her chest xray and echo looks good, we'll be going home tomorrow! YEAAAAAAAAAAAAAH!!

3/25

So who would've thought it would just start storming out of nowhere? Such a great night to be home in bed snuggling with your loved ones.. which is EXACTLY WHAT I AM DOING!! Yes! Jaida and I left the hospital today! Thank the Lord!! Her chest xray was fine and her echo looked pretty good too. The only thing the found was still a tiny bit of fluid around her heart. They actually prescribed her Lasix which should help that out a lot!! Other than that, she's doing perfectly! She really did heal nicely. Thank the Lord there were no major issues!!! Just a few bumps here and there..but just like Mrs. Val said.. you take one step forward and two steps back. I'm just happy that her particular problem could be fixed. Through the hands of God that directed her surgeon, her little heart is healed!! Thank God for a perfectly healthy baby girl! Thank you guys once again for reading up on her and giving me feedback, words of wisdom and encouragement, and just simply keeping track of what was going on. It's so nice to know that so many of you guys took the time to read this blog. I truly made this for you guys!! If one person read this and they know a heart mom.. they can pass my experience to them as someone did for me, and it can really impact this whole heart experience. This stuff is definitely intense, i'm not going to try and pretend it wasn't-- but by surrounding myself with positivity and peace, it made the ride a lot smoother! I'm not ending this blog here. Initially I was going to just make this to share Jaida's heart journey with everyone and then I realized her heart journey isn't over.. Jaida is going to have a special heart for the rest of her life-- why end here? This isn't the END of her journey, this is only the beginning! Thanks again for reading..i'll be updating this frequently as time progresses and my angel grows. I love you guys!!!

Soo ready to go mommy!!

& the packing begins.. this is just a little bit..

"My mommy is sooooo funny!!!"

"Please.. no pictures!! I must FOCUS!"

(& yes that was my temp. cot!!)

My babygirl & her big move OUT of the PICU!

Waiting to get out of the PICU for good!!

"I'm still waiting, and i'm not happy."

Tata is trying to hide lol.. & the bandaid is where her chest

tube was

Such a happy girl!

She has already grown so much since we've been here!

She's going to be TALL like mommy!

All smiles all the time :)

Say bye-bye to the stinky PICU room!

& We're off!!!

Ohh, this is different..

Passed out on mommy. Note the scratches on her face: the

result of her trying to snatch her oxygen tube out a few

days ago.

UPDATE: Day 6 & 7

3/22

I am so sorry for not updating last night like I usually do, I was EXHAUSTED!! All day yesterday we were focusing on getting Jaida to take something.. anything from her bottle. Because of having the breathing tube in for so long and then having the feeding tube in, she kind of lost interest of the whole eating thing. Not only that but the coordination of her little tongue is a off too. We did meet with the speech therapist yesterday during the day and she told us that her swallowing and mouth moverments weren't abnormal and were actually expected after a major surgery like hers. So yesterday was pretty much a whole bunch of unsuccessful feeding attempts until daddy got there. As soon as daddy picked her up (Yes, we can actually HOLD her now!!) and started feeding her, she ate TWO WHOLE OUNCES! Yes! Way to go Jaida & daddy!

3/23

Today was a lot more eventful! Jaida ate another two ounces for breakfast (with MOMMY) and then was pretty consistent for the rest of the day with her feeds. We met with the speech therapist again for another evaluation. This time she said that Jaidy was a lot more coordinated than she has been, and that she has improved greatly since yesterday! Yes! We are definitely heading in the right direction. Guess what else happened.. WE GOT TO MOVE TO THE 6TH FLOOR! WOOHOO!! Just so you know, the 6th floor is moderate care meaning a bigger, more private room- a PRIVATE bathroom with a shower that has decent water pressure, and an actual cot as opposed to a chair! I am so happy! The only thing I am not too happy about is all of Jaida's bumps, bruises, scratches, & cuts! I know that they will all heal in time and the most important thing is that her HEART IS FIXED-- but I still don't like seeing her all beat up! =( On a happier note, they took her central neck line out! It's one more tube out of her, and one step closer to home!! Her chest incision is healing very nicely as well. Whoever invited Dermabond has to be a billionaire! Once the glue begins to peel off all that you'll be able to see in a tiny skin colored hairline. I'm sooo glad that this chapter in our life is almost finished! And on another good note.. daddy just got Jaidy to eat almost 4 ounces! We will be out of here in no time! Thank GOD! (And all of you for all of your support and prayers..it hasn't been easy, but your comments encourage us and keep us motivated..from Jaida's heart to yours- THANK YOU!)

 

UPDATE: Day 5 - Not all days can be good days

Jaida's Prayer Box

So not much has changed from yesterday. Pretty much Jaida is still eating from a feeding tube and she is not showing any interest in her bottle whatsoever. She threw up some of her formula early this morning, and they've been giving her 15mL per hour (1/2 oz.) since then. Jaida's nurse Laura told me tonight that a speech therapist will come around tomorrow and try different techniques to try and get her to take her bottle again. She said there isn't one particular reason as to why she isn't interested, but it could be various little things. For instance, her GI tube is running from her nose to her tummy so she can feel it in her throat and that may be irritating her.. another thing could be the fact that she had her breathing tube in for so long and she could be correlating the nipple of the bottle with something else that would go down her throat..there are several different things it could be but whatever it is-- hopefully she'll get over it and start eating like normal so we can go home! Other than that little situation everything else is pretty much the same.. Jaidy did have several wonderful visitors today! Thanks to: Tata, Abu, German, Aida, Juan, Reina, Carlos, Carmen, Daddy, Haydee, Joe, and Jenny for coming to see me!!! We love you guys!

I know that I'm a princess, my Father is the

King of Kings.

& We got to dress her up!!

UPDATE: Day 4 After Surgery

So things are definitely moving in the right direction. As I mentioned earlier, the goal of today was to get Jaidy eating HER formula again. They tried giving her clear Pedialyte but she would not drink that. Then they tried the orange Pedialyte and she wouldn't take that.. (Lol, stubborn girl like daddy!) so then they tried giving her 1 oz. of her formula but she was just not interested in bottle feeding at all. Basically they gave her a feeding tube and right now they are giving her about 10mL an hour. Tomorrow's goal is to get her drinking atleast 30mL (1 oz.) by 8:00 AM. Just so you guys have an idea.. Jaida drinks anywhere between 5 to 7 oz. a feeding! This is a BIG transition for her! They just want to make sure her little belly can tolerate such a high concentrated substance I guess! Away from that, they removed her other IV and they took out her nasal oxygen completely! (Actually she pulled it out, but her stats were PERFECT so they kept it out!) Also they completely took her off the milrinone and fentanyl drip. Now they are just giving her oral medication for the pain, which is why they needed her to start eating. So just to recap she no longer has any pacing wires or chest tubes, no IVS, no medication running through any IVS, and she is pretty much healing all on her own (w/ the exception of the medication they're giving her orally.. which is every now and then, not continuously) I am SO proud of her and her progression! Honestly, she has the GREATEST doctors & nurses (some better than others..) ever! I am so grateful for these people! I spoke with her nurse tonight who told me that they would probably not end up moving her to the 6th floor (moderate care) tomorrow because it's the weekend but they will probably move her on Monday! There they will really focus getting her eating on track and then we will be able to GO HOME! They said after we move upstairs we should be on the 6th floor for about a week.. shouldn't be any longer than that. I can't wait to have my baby girl home, but thank GOD we are moving right towards that direction!!

The more difficult the situation, the stronger it makes you

Continuation of day three..

                                                                                                                  (THIS IS GONE!!)

THANKS FOR ALL OF YOUR PRAYERS! THEY HAVE ALL WORKED AND JAIDA IS DOING SO MUCH BETTER!! THANK YOU- THANK YOU- THANK YOU !!!! So like I said, yesterday was an extremely eventful day! Today Jaida is wide awake and alert..She doesn't seem like she is in pain, and she hasn't been crying at all. She's one tough cookie! The nurse last night got her a mobile that has three little birds that flap their wings and chirp. She loves it!! ALL of her stats are completely PERFECT!! They said that she will probably be able to eat today! I'm so happy! We are getting closer and closer to the 6th floor (moderate care) and then ultimately HOME! *Actually, the team just did rounds and they are going to give her some Pedialyte. If she can tolerate that then she is going to get some of HER formula later on!!!* Also, the nurse just took out one of her IVS (the one that measures her blood pressure) because they said she doesn't need it anymore! So now all that's left in one IV in one of her hands, her oxygen (through the nose), and her central line tube in her neck. I'm so happy! The nurse also said if they can ween her off and eventually completely cut the milrinone (balances perfusion), then she may possibly move to the 6th floor tomorrow! YES!! God is GREAT a.t.t!!

Goodbye...

Goodbye Ventilator!!!

YES! Today was such a WONDERFUL DAY! Not only did ALL of Jaidy's vitals stabalize, but they took out her temporary pacing wires, her chest tube, her foley catheter, AND most importantly of all.. HER BREATHING TUBE! She is now breathing only room air and hopefully tomorrow we will be able to start her feedings again! I am SO excited! She looks SO much better! She is less sedated so she is a lot more sentimental. I hate seeing her sad but i'm so glad she is finally off of that machine! Today the OR nurse that assisted Jaida's surgeon came in a brought her a gift.. look how precious:

  

                            

My baby girl is so amazing. She is so incredibly brave and STRONG! She has surprised all of her nurses and doctors. I can't wait until she is finally out of here for good. I am so happy that things are starting to progress here. I'll write more in the morning but I am completely EXHAUSTED. I can't wait to get home a take a shower in my own shower, and sleep in my own bed! Love you guys..

And One More Thing....

UPDATE: Day 2 After Surgery

Another one of Jaidy's posters: "For YOU created my inmost being;

you knit me together in my mother's womb."

Psalm 139:13

"God Bless Her Little Heart."

So I woke up this morning to a loud alarm indicating Jaida's blood pressure was 110 and her heart rate was reading 220 bpm. The nurses and doctors were quite concerned because they could not really indicate what was causing that to happen. They gave her aa echo which idicated that the fluid around her right lung had gone away (thank God!) and her blood gases were all beautiful! (If some kind of infection were occuring or something abnormal was happening internally, the bgas would pick that up) Donna, Jaida's morning PICU nurse, completely took her off of the epi (which is the chemical your body makes when you are scared) and gave her several other meds to get her stats back to normal. Finally the b/p went to normal and so did her heart rate. The xray tech came in and gave her an xray (still haven't gotten the results of those). Towards the later end of the night her b/p was extremely low due to the amount of meds given throughout the day. I asked the physician on this week why her blood pressure was so low (for about 11 hours and still as i'm typing it's been in the high forties, low fifties) and he suspected it was because the blood vessels were dilating. Now they have her back on the epi and they are actually decreasing the sedation meds (b/c our b/p drops when we get sleepy) so hopefully that will work. It's a lot more difficult when she is opening her eyes and actually focusing on me, and I can't do anything to help her.. =( Also, they still have not taken out the breathing tube simply because the fluxuation of her blood pressure.. hopefully tomorrow things will turn around. It just seems like Jaidy isn't wanting to get better as fast as mommy wants her too. I'll update sometime tomorrow or if anything else changes tonight. Keep the prayers coming, they work!

Mommy being silly

Beautiful Tata

UPDATE: Day 1 After Surgery

So last night was pretty difficult. The PICU nurse warned me to go home and get some rest, but I refused. I didn't get very much sleep because as Jaida's sedation began to wear down she became more active which made her ventilator machine chime all the time. I didn't mind the noise, it just made me nervous that she was uncomfortable. This morning Jaida's surgeon along with the rest of the heart team came and did their rounds at about 7:30. They were discussing her progession and her profusion (coldness in hands and feet) and decided to keep her on the ventilator for a whole other day (BUMMER!) I was really wanting her to be able to start eating again, but that wasn't going to happen. The problem is the muscle they removed from her right ventricle left that side of her heart weak. Now she has to work to make that side of her heart big and strong like the left side. They are actually giving her medicine to help the ventricles squeeze (since right now they are pretty weak) but in doing that, they are increasing her liquids. She had a echo done at about 1:00 with Dr. Lacey and they found fluid around her heart and lungs. This is expected after heart surgery, but it is something they are keeping their eye on. Right now she has a chest tube that is draining fluid out of the left side of her chest, but during the xray and echo they found that the right lung is the one that is hazy. Right now they are doing the non-invasive things to dry and remove that liquid. If those things don't work they may need to add another chest tube to the other side to remove the excess. It's pretty much just been a rest day for poor Jaidy. She is pretty sedated since they are keeping her ventilator in. Once that is removed they will not give her as much medicine so she can be active on her own and start recovering. The hardest part for me right now is seeing her move around so much and not being able to pick her up. Also, every time she cries or coughs her ventilator machine will chime. All you can see is her head moving around and her mouth opening as if she were really crying, but you cannot hear her. The reason is because they place the breathing tube past her vocal chords so you cannot hear her. Also Donna, the PICU nurse from this morning was explaining to me how she cannot feel air coming in her mouth so she doesnt think she is breathing which does cause her to be uncomfortable. Right now i'm hoping for better news in the morning. Ideally i'd like them to tell me all the fluid has been suctioned up and that we can remove her breathing tube. I guess I won't be able to find anything out until tomorrow's rounds. Please keep the prayers up! Jaida needs us!

Oh and by the way..thank you guys for all of your comments on facebook. I can't really respond to every single comment, but I do read them all. I get them all through my cell phone, and then I read them again once I get online. Thank you, thank you, thank you! The words that you guys write really help me out in here! I love you!

Surgery Day

Yesterday had to be the most difficult day of my life. The sitting and waiting, the waiting and sitting. For me, time just went by so slowly. The placing of the tubes/lines alone took TWO hours! It was definitely very, very difficult. And then to see her afterwards...this is what we saw when we first came into the room. Actually, this is just the machines that are on the right hand side of her. On her left side, there is another big machine (her ventilator). I've decided not to post her picture right now. It's very difficult seeing your child like this. I don't know when I will be posting her pictures up here, but I imagine it will be as soon as some of the tubes are removed..

We arrived at the hospital at about 6:20AM. From there we went into the waiting room and basically.. waited. I changed Jaida into her beautiful hospital attire, and then we sat and took pictures until they called her daddy and I back. Finally we went back into the exam room where they took her vitals and blood pressure and then we went BACK into the waiting room. This time we only sat for about 15 minutes before they finally called her name again. I am so thankful that I had a great support group there with me. Before they took Jaidy back it was Oscar and myself, Oscar's mom and sister, Haydee, and our beautiful Pastor. So right when they called her name we said a prayer and then walked back into the holding room with her. We waited there in the holding room for what seemed like forever. While in there we met again with the anesthesiologist Dr. Bland and her assistant, and the with the PICU floor nurse Donna. We met with one other OR technician and then we walked out with her into the hallway to say our see-ya-laters (NOT goodbyes!) The tech was so impressed with Jaidy's beautiful hot pink bow and leopard blanket that she insisted on taking them both back with her and Jaidy into the OR. After letting our precious baby girl go, we headed to the Pediatric Intensive Care Unit Family room. When we got there we saw Patricia there (a fellow heart mom) who has been through this procedure four times with her son that has this same defect. I was so happy to see her there! While waiting, we decided to do a little arts and crafts project and I wrote "Jaida's Poem" on a poster board so we could put it up in her room:

Jaida's Poem:

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave a piece of your heart here with me and take the other piece with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

So then while I was doing that, at about 10:15AM Dr. Lacey (Jaida's primary cardiologist) came in to talk to me. She told me that they had just finished placing all the tubes in and Dr. Ciethaml was scrubbing in. She told me they would come in and contact me when they were putting her on the bypass machine. Well a lonnnng time passed and then Donna, (Jaida's PICU nurse) came in and told us the procedure had begun and everything was looking great. In the meantime, we did a little bit of Bible reading/class, we ate lasagna (thanks Patricia) and just sat there-- resting, talking, and waiting..FINALLY, doctor Lacey came back and let us know that they were finished with surgery but they still needed to close her, and that everything was a success! She came off of the bypass machine with NO issues (thank God!) and that she would be coming into the NICU in about an hour or so. After well over an hour we finally got to meet with the surgeon who gave us the details of her surgery. They placed the large patch inside the hole in her heart as planned, and they actually found another hole that was not seen during the cauterization that they patched as well. (thank God for such an amazing & skilled surgeon for finding that!!) They also saw multiple tiny holes in one of her ventricles, but they are so small that they are impossible to close, and they would eventually grow together as she gets bigger anyway. The only negative news we got was that they could not save her pulmonary valve. Instead of being a large tube-like structure, it was a small (abnormally small for her gestational age) piece of cartilage..so they put a patch over that as well. And apparently, some kids can go years and years without needing their valve replaced (some don't ever need a valve.. most do) But right now they are working on studies in cath labs where they want to do valve replacements through a catheter in the groin up into the heart so no chest incision would be necessary. Anyways, after speaking with Dr. Ciethaml, we were finally called back to see her. It was a good thing I prepared myself for that sight for so long. It was definitely a difficult time seeing her with everything and so sedated and out of it. On a positive note, I know she is comfortable and can't feel anything. I just wish she didn't have to have the breathing tube in. Pretty much the whole day after that Oscar and I just sat and watched her. Sometimes she would move or attempt to open her eyes.. other times she would just lay completely still. I have had so many doctors and nurses tell me how strong she is! She is a true example of a miracle baby. Thank God for all He has done! Thanks to Him for giving me such a precious angel, and placing her into the hands of such a skilled medical professional. Dr. Ciethaml truly truly saves lives and does miracles with just his two hands.