Doing Well!

Hi everyone! So, Elena has been home for almost a week now and she is doing great! Here are some of the changes that have been happening since her surgery last week.

CHANGE 1: Elena has WAY more energy now than before.

CHANGE 2: She has finally found her lunges. Not sure if that is a good thing or not...she's definitely LOUDER than she used to be.

CHANGE 3: She finally has the energy to actually have tantrums.

CHANGE 4: She's eating more! YAY!

CHANGE 5: She has the energy now to do things like keep herself upright (mostly) and do other things that have to do with her milestones at this stage.

Sooooo, all in all, I am SO thankful for her progress and the increased life and appetite she has but this is an adjustment to say the least. I'm realizing I have a lot of unraveling of spoiled behavior to do but I would rather love my child too much than put too much strain on her little heart while she wasn't able to function at full throttle.

Thank you all for everything. If you would like to stay involved and updated about our family and what our little one is up to, please follow my family blog "The Not-So-Secret Life of "Mom"" at http://theresnobusinessliketheesplinbusiness.blogspot.com/

(I haven't really started it yet but will soon!) H

Happy Posting!

Leaving Today!

They say we can go home today! Yay! It's been a long morning with Elena getting really ticked at one point because the Ibuprofen just wasn't enough but then she got the good stuff and went off to sleep for about 20 minutes...O.o

I was finally able to go get some breakfast about a half hour ago and am in need of a nap BADLY but at least it was because she has started to eat more...even if it has been in the middle of the night. I guess no more solid nights for a little bit. :(

 OVERALL!

We've had a pretty good time during our stay helping little girl and joking with the nurses. Elena has especially enjoyed being famous around the ward. Inevitably, a different group of nurses not assigned to her came in to see the "incredibly adorable baby" each day. ;) The funny thing is, every time they came, I usually happened to be in the bathroom.

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We've got the papers! Now all we have to do is pack up and we are OUT OF HERE!!

Just a side note, we are going to wait on visitors at home for a couple of days because she is still recovering and susceptible to exposure. We would like to keep our place as sterile as possible but we are going to come to church for sacrament. Please no touching and keep your distance if you're sick. ;) We will have a sign on her carrier to remind you! Thanks!

Central Line Removed

They took out the central line! It was the one they had in the right side of her neck and probably the most uncomfortable since it was stitched onto her neck to keep it from moving. She's still recovering right on track so now we're just waiting for tomorrow morning. :)

Just About in the Clear!

Just before the meeting this morning, the surgical PA examined Elena's drainage tube as well as her output and confirmed that it was ready to come out! So, the nurses gave her some morphine and the surgical PA took out the tube as well as the defibrillator wires. She was really fussy (understandably so) for couple of minutes but then she was happy as a clam.



During the meeting, they discussed her status and were thinking that she might be out by tonight but they decided to keep her over-night just to be safe. So, for now we are looking at being released tomorrow morning.

 

 "No pictures please!"                    "Yes? Do you want something?"      

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 Just met with a physical therapist to receive instruction on the proper way to pick Elena up and how to handle her for the next 6-8 weeks. We are suppose to treat her like any other baby, but we are not allowed to pick her up from underneath her arms. She will gauge when she is ready to do things so if she rolls on her own, sits up on her own, plays well (all without wincing) then she is ready to do it!

On another note, the therapist was impressed that she was sitting up and reaching for things and playing with them with no problem. :D

For now, we're going to see how the next 24 hours go and try to get her to eat more. She still eats like a bird. :P Silly girl. 

Latest News...

Another tube has been detached! Not yet removed because it is part of a major IV that contains two lines but yeah, one step closer! They are currently checking her drainage tube to see her progress.

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Alright, they checked it and are going to leave it in for another day. The output is just a little too high for it to come out just yet. As of right now, they are projecting her release for Saturday. Fingers crossed!

Daily Update

Juliana ended up snuggling and napping with baby Elena so that's why this update is so late.

Elena had her wrist IV removed (now her hand isn't a club anymore), and with any luck, her drainage tube will be removed later on today. Apparently, the drainage tube was the most uncomfortable part of recovery.

~Thomas

"Feed me Semore!!"

She just drank 5 ounces of formula from a bottle on her own!!

Wednesday Morning update

Update information!
Elena has had her O2 line turned off and her sedation has been reduced, and she has feed on Pedialyte from a bottle on her own! In the next day or so, the doctors are intending to remove her drainage line from next to the her heart.
And now for Juliana's favorite part:

Blessings, Blessings, & More Blessings!

Thank you everyone for your fasting, your prayers, and your friendship during this hard time! We were completely blessed to have had no worry or really any anxiety about our little girl today. We've had this calm feeling that she would be just fine and I know that this feeling has come from God.

Actually, it's been rather humorous to see just how most people have reacted. The main census is that everyone has been more worried about our reaction to it than how she will do. What a blessing that everyone has had a similar feeling that she will be okay! We are definitely on our way and doing great so far. She is loved by all her nurses and doctors. They all agree she is just perfect and precious and we agree!

We will continue to give you all updates on a day by day basis if things are going well and definitely at a "as needed" basis if something unexpected happens. Til next time!

(Left Pic: about 1 week old)

(Right Pic: Today right before her surgery)

SHE'S OUT!!!

Elena did AMAZING! Everything went smoothly and they were able to take care of all the issues without a problem! Like we said before, she came off the bypass machine well, they got her heart going again and everything started running very easily. She's been stitched up and they are hopeful that the breathing tube may come out even before she leaves the surgery room. If not, it may come out either tonight or tomorrow morning. If she responds well, she should be out in the next 4-5 days! YAAAAAYYYY!!!!!

"Plug In Baby"

We have just received word that Elena has come off of bypass well and her heart was started without complications. She is now in the process of being pieced back together.

Additional info: her heart is cranking on its own and her pulmonary valve looks significantly better in regards to flow and pressure differential.  

Safely on ByPass

Elena is safely on the bypass machine. She is continuing to be a trooper and is doing very well. After that, they decreased the temperature of the room to help with working on her heart and "iced" our baby. Haha! Before incision of the heart, they cool the cavity to make sure it doesn't cause heart failure. The nurse told us that they were beginning to make the incision into Elena's heart as she left the room.

They've Made Incision...

She is doing very well. She went under just fine and is responding well to everything. Christie just came in to tell us that they are underway and the next goal is to get her hooked up to the bypass machine. (The bypass machine is what keeps her blood flowing and her body still working while they are working on her heart. It bumps blood from the lungs to the rest of the body and takes in blood from the body to send to the lungs. In short, it does what the heart usually does.) That's all for now folks.

Pre-Surgery Scan Results

Dr. Bhat (our cardiologist) just came and updated me on her esophageal heart scan. Elena is still doing very well but the update on what her heart is doing is this: they found that there actually isn't any tissue forming around the hole and that it is still wide open. They also found out that her valve is a bit leaky so it is a good thing they are taking care of it now because it would have started to cause her problems. Tender mercies for that! 

The First Stages - Surgery Prep

We arrived this morning at 6am sharp and were greeted by Christie, our liaison nurse. We signed some documents for insurance and treatment and then headed up to the surgery waiting room.

After going back to a private patient room, Elena was taken to have more blood drawn for an additional test (not sure which) then was given back to me for the remainder of the time. Members of her surgical team came in at separate times to fill us in on what was going to happen. We saw her nurses, the anesthesiologist, her surgeon and the assistant surgeon, and more. All of them were very helpful and explained everything that would happen today.

They kept ooooing and awwing at her as they came in and the nurses were arguing over who would get to take her back in to prep for surgery. I mean, how can you resist a cutie like this? =>

About 15-20 minutes ago, they took her back to be prepped for surgery (which prep should take about 2 hours). By now, they have probably already got her under sedation and are working on getting her IV, other tubes, and lines situated for the surgery. Our nurse will give us an update when she has actually gone into surgery and when they have made the incision. Stay tuned...

~Juliana

Reason for Surgery...

For those joining us last minute in this epic saga...Elena was born with a Ventricle Septum Defect (VSD) or rather a "hole in her heart." The internet is full of information regarding this but to put it in layman's terms, her heart isn't working properly and if gone unchecked or untreated, it could cause heart failure.

The past few months we have been hoping and praying that it would heal on its own but it has been to no avail. At this point, a team of cardiologists have looked at her records, examined her scans and have determined it would be in her best interest to go ahead with surgery. She also suffers from a loud heart murmur related to the pulmonary valve. This will be an open heart surgery and if this goes according to plan, the only surgery she will need.

The benefits are: she will not need medication for her heart, she won't have any physical limitations regarding her heart in the future - this means she can play sports, dance, play the trombone, whatever. ;) It also will not cause any additional health issues if things go well but she will have a rockin' sternum made with titanium.

For now, this is all that comes to mind as it is 1:26am and we need to be at the hospital at 6am to check her in. Until the next post...keep the dreams coming. ;D

PS - If you would like to see grotesque pictures, please request on here and we will send one to you separately. You're welcome, weak-stomached people. You know who you are. ;)

Surgery Scheduled!

Sweet five-month-old Elena is scheduled to undergo open-heart surgery at 8AM on Tuesday, October 4th 2016. Her surgery was originally scheduled for Thursday, October 6th, but they moved her appointment up because of the scheduling needs of other patients with more urgent cases. They did consider having her wait an additional week, but wanted to get her in sooner rather than later since she is still healthy and it's better not to take the risk of waiting. The surgery will last about 5-6 hours, and she will remain under sedation for 12 hours after it is complete.

Thomas and Juliana are deeply grateful for the love and concern expressed by so many of you!

Please contact them through this blog instead of texting or emailing so they will be able to spend as much time as possible focusing on their baby girl over these next few days and weeks.

Loves,
Aunty Melissa