This is Megan. Please pray for her!! Thanks everyone!
This is Megan. Please pray for her!! Thanks everyone!
We got a pretty big surprise today...We had planned on her getting her central "RA" lines out today so that we could hold her, and as soon as they told us about taking those out, they immediately moved on to saying that they'd be moving her to the floor!
She is tubeless....or at least she has no large plastic tube going down her throat...she does still swim in a small tangle of IV lines however. But those don't seem quite so bad; except when she tries to use either of her hands which are securely wrapped to small padded boards to support her IVs. She tries so hard to get some use out of those stiff little wrists, usually ending in a good bump in the face. They just don't seem to work quite like they used to.
Grace has continued to recover and progress amazingly well. She is constantly gagging on her tube however, as well as always throwing her arms around and making it very clear that she wants that tube OUT! She licks it, bites it, pushes it, and yanks it, all in an effort to get it out, but to no avail...until today! She is supposed to be extubated later today if all goes well. And her extubation will actually be following the removal of her other 2 chest tubes. She is just losing tubes and wires everywhere! Its great. :)
Grace has been opening her eyes a lot more today. Looking at her Mama and Daddy and trying hard to focus on us. She'll turn her little head at the sound of our voices and squeeze our fingers. Its sweet, but also heart breaking to see her so vulnerable and helpless. I'm definitely very anxious for when I will be able to hold her in my arms again...although, I don't think she will really be content until she is in Daddy's arms again...there's nothing quite as enjoyable for her as a Daddy cuddle, (but I totally understand....there is definitely something special about Topher cuddles...)
Daxton and his parents gave Grace this beautiful little Willow Tree figurine. It couldn't be more perfect if we had had it commissioned esp. for her. It is of a little girl holding a beautiful golden heart...as if Grace is holding her beautiful new gift...her gold medal. Thank you SO much.
Topher and I love black and white pictures...and when you take a shot of her cute little toes in B&W, it just doesn't get much cuter than that.
Hopefully all this tape and the ventilator will be gone in a couple of days. They actually tried a spontaneous trial off the ventilator this morning and she did amazingly well. They plan on doing another trial this afternoon and again this evening. If both of them go as well as this morning's, she could be off the ventilator as early as tomorrow!! (knock on wood...)
So Gracey and I both had big days today. Topher and I slept here at the hospital and awoke bright and early...(although still not as early as I'm pretty sure Curtis gets up, ha!) went to see and check on Grace, got some grub and headed to Park City for my Triathlon. I decided I had put too much work and energy into it to just give it up...and I knew that nothing would keep me going more than the thought and motivation of doing it for Grace. If she can go through so much and be so strong, I had better live up to being her mommy and be able to push myself as well. :)
This one is cute, cuz yes she is super puffy...but she's pink!! and Beautiful! And she still has her adorable mini fohawk. She likes to suck on her ventilator too...kinda cute....okay REALLY cute.
Here she is with the man of her dreams. Her Daddy. The best man on Earth...and don't tell her you think otherwise...she'll snarl at ya.
Hey all!!! Let me start out by prefacing the following post with the fact that we love all of you so so so much. We appreciate so much all your love and support and even more especially your constant prayers. I know a lot of you feel helpless, and that is understandable, but there really isn't anything we need other than lots of prayers. We're just eating at the hospital most of the time, sleeping when/where we can, and that's about all we can ask for. We feel helpless looking at Grace as well, but honestly there's nothing that can be done that isn't already being taken care of by Grace's amazing hospital caretakers.
But we truly do appreciate everyone wanting to help out. We know everyone would be here in a heart beat if we asked...which leads me to this post's general purpose...
Topher and I felt like we should probably post a blog to let everyone know more about visiting Grace and also about what the next year will probably look like.....
As much as we love you all and we would love for everyone to get to see and love Grace...its just not possible right now.
The visiting protocol is so much more strict now that it ever has been, and she is so so so much more fragile.
For the next 6 months to a year her immune system is going to be highly suppressed. She is going to be on up to 10 different immunosuppressants, and so she will be extremely vulnerable to any and all infections, sicknesses and diseases. If she were to catch so much as a cold, it could very easily over power her and possibly kill her.
The Transplant team has told us that for the next 4-6 months, and possibly a year, Grace will be under 'house arrest'. We literally will not be able to take her anywhere but the outdoors. We can take her outside on walks, with the stroller covered up...and that's about it. We can't take her to our family's houses, we can't take her to church, not to any stores, not anywhere. Along with that, we won't be able to have more than about 2 people at a time come to visit her at our house. And if people do come to visit, they can't be sick, nor can they have been exposed to anyone that is sick.
This has been something really hard for me to swallow, because I want her to have a close relationship with all of our families, but, Gracey's life depends on her not being exposed, and to her remaining healthy healthy healthy!!!
While she is still in the hospital, the Doctors and nurses have told us that we have to limit her visitors to parents and Grandparents, and possibly immediate siblings, if and only if, they are in perfect health and haven't been exposed to anything. Also, they have age restrictions, so not even all of our siblings will be able to see her. The visitors that do come in have to gown up, wear a mask and gloves and sanitize like crazy.
So...as you can probably gather, it is overwhelmingly strict for the next little while, and although we love you all and want you all to be able to love on her, you may have to save your kisses and cuddles for a couple months. :)
Please please please don't be offended or hurt if you can't see her for a while, the last thing we want to do is hurt anyone's feelings. But please also don't make us be the bad guys by having to turn anyone down. If our siblings and close family can visit, we will let you know. But if we can follow the strict rules for the next year, which will hopefully go quickly, she'll be healthy and we can start to let her have a normal life doing all the things other little babies do.
We love you all lots and appreciate so much your understanding and support as well as your eagerness to be helpful in any way. :)
Love the Andersens
In an effort to get rest, and stay updated and close to Grace, Topher and I split up last night...he went home to sleep there, and I stayed here in a Sleep Room. Although it was plenty quiet, and comfortable, I feel like I didn't ever really fall asleep. I'm sure that in actuality I was out, but I woke up so many times that it feels like all I did was lay on a bed with my eyes shut for...11 hours- Yikes! I can't believe I slept that long and feel just as exhausted as yesterday! I had asked the Nurse to please please get me if anything was happening or was wrong, and so every time I heard a door open, which was more often than you'd think, I popped up in bed, just waiting for them to knock on my door and get me.
Grace is in the PICU now. She's looking very swollen, and buried under a bit of a tangle of tubes and wires, but she is pink, and for the first time ever her oxygen saturation is 100 percent!! It is amazing!!
It is finally over. 12 hours later, Gracey is stable and soon to be transported back to the PICU. We haven't seen her yet, and probably won't see her for about another 30 minutes, but she is supposedly stable and on her way to the PICU.
This is Emily, Buggy's sister commandeering her blog for a much needed update. Unfortunately, Bugs and Toph are wandering the hospital halls like zombies for no apparent reason. I think they're tired or something. Can't fathom why, though...
Well, they just came back to check on us again and give us another update. Everything is re-connected and stitched together. She is also off bypass. They are going to monitor her for the next hour or so to make sure all is functioning normally and also they're going to try and close her chest. It will depend on how much swelling there is and how much fluid needs to drain, but hopefully they'll be able to close her up and then we'd be looking at seeing her in about 2 hours.
Gracey's new heart is in and beating!!!!!!!!!!!!!!
They have repaired the arch and the arteries successfully. They are now in the process of connecting her new heart. The nurse that came in and checked in with us said that it is 'beautiful' and that everything is going well so far. They just need to connect the blood vessels and arch, along with part of the atrium to the new heart. It will probably be about another hour if not more...but we are definitely one hour closer to seeing our Gracey!
We just got another hourly update and they said the heart had just arrived from Sacramento. They had finished reconstructing the aortic arch and pulmonary arteries and were going to be attaching and putting in Gracey's new heart.
They've told us that Grace is now on bypass, and they are removing the stent that has been in her ductus. It took about an hour and a half just to get all the lines in, and put her under anesthesia, and then another hour and a half before she was on the heart/lung bypass machine. They just came again and mentioned the stent removal. It will still be quite a few hours...they still need to reconstruct her arch and pulmonary arteries before they can put in the new heart.
Well..it's about 5:30 a.m. now...we just got to the same day surgery waiting room and will probably be here until about 11 or 11:30. Dr. Kouretas spoke with us before taking Grace back into the O.R. and went over with us in a little bit more detail what will happen. They will remove her heart...pur her on the heart lung bypass machine which will pump blood through her body, and they will then have to reconstruct her aortic arch and pulmonary arteries. Normally Dr. Kouretas is very confident and tells us that yes there is risk, but that the procedure should be relatively simple. Today however, he was still confident, but told us repeatedly how huge this procedure is. It's not just a transplant, it is practically like doing the first original Norwood surgery, and then doing a transplant on top of an already complicated procedure. He said there were many risks involved, including a risk of her not even making it through the procedure.
Doctor K, Our surgion just came in the room and told us that we are going to get started. So, here we go, we've been told 4-6 hours for the whole surgery to happen, but you really never know.
Well...Topher and I have had some interesting sleeping arrangements...we both were in our own rocking chair...with our bodies contorted quite uncomfortably...resting heads on each other's legs...leg's on each other's tummies...putting bums on chairs and feet on another chair and heads on a lap...however...i feel like I slept quite comfortably for about 3 hours. :) and I have woken up to my baby getting a alcohol/antiseptic kind of bath and screaming her head off for the whole PICU to hear!!! lol. I think her nurses were under the perspective that she was going to be a sickly little thing...not so!!! She has the strongest lungs you could possibly imagine. :)
The IV team just came in to draw blood for some labs that she has to have. They also finally let Grace have a little pedialyte. The doctors haven't let her have anything to eat for the last five hours, and grace was very, very, very upset!!!
We're still just waiting. Gracey is cuddling contentedly but hungrily on her daddy's lap, wrapped in a blanket with her stuffed bunny. She couldn't be cuter if she tried. The latest news we have that is the surgery won't happen until after midnight and will likely take at least 6 hours. We'll post the latest as soon as we know. Just keep praying!
Well as a contiuation as the last post:
We had a Doctor's appointment this morning. We scheduled a very complex open heart surgery for the week of the 22nd of September. This will be in case she doesn't get a heart before then.
Sorry for the long delay between posts. I suppose not much has happened. Or, the fun things that did happen, we didn't get pictures of to report on!