Miss Poopy Pants

Yesterday morning I called the Hospital and spoke to the nurse taking care of Grace. I told her that I realized the nurses didn't offer a lot of things to me, and so I knew I needed to be nosy, therefore, I took it upon myself to request permission to bring a little outfit and dress my little baby. The nurse paused for a minute or two and then said that she couldn't immediately think of any reason why not. "Good!!", I said. I immediately got to work washing her cutest outfits and then had the major dilemma of choosing my favorite. Don't ask me why, but for some reason, I thought one outfit would be enough. So I got to the hospital, to find that as usual Grace was being a handful (in case you haven't heard, she is uber feisty and almost always throwing temper tantrums unless she's on morphine). I proceeded to try and calm her down and then I changed her diaper. For the SECOND TIME, she tried to poop on me while I changed her. Stinker. Afterwards, I went to work putting her little outfit on her. She looked adorable!! I even did her hair and put a cute pink bow in that matched her outfit.

I picked her up and settled into the rocking chair, talking and singing to her, only to soon realize that she was filling her pants. She was tooting up a storm in there!!! Then I felt it, the blanket was wet too. I lifted her up, and she had pooped through her brand new outfit!! I changed her diaper AGAIN, only to see that no poop made it into the diaper, it all got on her outfit instead!!

Later that night, Topher and I went back to see her together. Topher held her for a while, and then I held her. Topher handed her to me and about 10 minutes later I felt that the blanket was really damp. I wondered if maybe she was really sweaty or something, and then I smelt that no, it wasn't sweat. She had peed on me. What a little stinker!!

So, she has no tried to poop on me twice, pooped through her cute clothes once, and peed on me once!! I think she's trying to tell me something!!

On top of that, the nurses say that she pees or poops through her sheets at least once a day every day.

It's a good thing that they need her to be going to the bathroom alot and so its taken as good news that she's so active, otherwise I might be a little put

out!

Post #2 Grace Woos her Grandmas...(er, Grandma and Oma)

After I held my little one, I decided that maybe I could share. Since my mom has been so wonderful and had been staying with me for a whole week she was up with me at the hospital when I got to hold Grace again. Once I had held her for probably a good hour, I figured maybe her Oma would like to do the same. I asked Mom if she'd like to hold her grand daughter and of course she was her polite, modest self, "No, no, that's ok, you need to hold her. You hold her". To which I responded "I know you want to hold her just hold her dang it". Lol. So she was convinced.

The next day, Venice came and was NOT as secretive of her desire to hold the baby. Lol. She knew exactly what she was there at the hospital for and wanted to hold her grand daughter darn it. Just kidding, :-). But she definitely knew without a doubt that she wanted to hold her grand daughter, no convincing necessary.

And of course, Grace swept both her Oma and her Grandma off their feet. They're both smitten with her. But then again, who isn't. hehe jk. sort of.

Long Awaited Post #1

So...we are very behind in postings...so there will probably be quite a few today.

#1 of most importance is of course that I, Buggy finally got over my stinkin' fever and was able to go hold my baby! As it turns out, I got a breast infection called Mastitis and that causes fever and flu like symptoms. I had to get on some antibiotics to clear up the infection, but they're still "clogged" so to speak so I am still in a lot a lot of pain and hardly producing ANY MILK at all. But maybe its for the better seeing as how our freezer probably couldn't hold any more milk if it tried.

Back to the matter at hand of holding Grace, after holding her several times now, it has been determined by me, Buggy, that Grace likes her Daddy a lot better than her mommy. She's only happy with me holding her if she's on morphine. Little punk. Good thing she's so cute and I love her Daddy, otherwise I might be jealous.

No more ventilator!

Yea! Grace is off of her ventilator. She has a little oxygen through her nose to help her out, but nothing in her mouth! I (topher) got to hold her! it was the first time after her second day that I got to hold her. She looked very cute, very awake and alert. I also got to try and give her her pacifyer. After having a breathing tube down her throat for most of her life, it was a little wierd for her to try and suck on something, but she did really well. Hopefully this will mean that she will start to feed on milk in the next few days.

well....as an update...Grace is doing well. She is getting her tube out today, which will hopefully mean that we can hold her again. Alysia on the other hand is not doing so well :-( . She came down with a fever last night, and isn't feeling so wonderful.

Random Update...

We realize our updates have been slightly skimpy and definitely not very detailed, so we thought we would take some time now to really give you the full details of what's been going on and what is happening now.

The Catheter part of the procedure did go well. Topher was a little bit nervous because when they took us back after it was done, it turns out that they actually had to use 2 stents instead of one. The Dr. said this is the 2nd time he's had to place 2 instead of 1, and he assured us it was ok but Topher was just nervous about there being two. The Dr. said the only real risk was that there was a possibility one of the stents could block blood flow to from going back up to the head and brain. However, after they monitored it carefully and after 3 echocardiograms to monitor the blood flow, it's been determined that the blood is getting back up to the head ok and that she is doing well. We now have x-ray pictures that show the stents in her PDA as well as the wires that are holding her sternum together after the surgery! Definitely something we never thought we'd have a picture of.

She had some rather large bandages on her after the procedure, they have since taken off the big bandages and al that's left is the little tape like bandages that hold the skin together. The only problem is that when she gets really angry, (she's kinda feisty) she sort of rips the skin open again and squirts blood and fluids on her pretty blankets!! Little Stinker.

As of yesterday, they started weaning her off the ventilator. They started the day out giving her 24 breaths per minute from the ventilator and by the end of the evening she was down to 12. Today, she is still at 12, but they've started performing 30 minute tests where they turn the ventilator off to see how she does on her own. So far she's done really well. The first test they did, she was breathing a little too frantically like she was just too exhausted to do it by herself, so they turned down her pain medication, and the 2nd test without the ventilator went really well. They're going to do another one tonight and according to the nurse we should be able to expect her to be off the ventilator by tomorrow!!! This is such great news. We feel so blessed that it seems like everything with little Grace has just been a "best case scenario" kind of situation. She's always just done the very best that she can with every bump in her path. We are so proud of her and her determination.

Today she had a little song machine that plays her lullabies and classical music, as well as a toy for her to look at since she's been actively awake lately.

Something sort of comical about her, and just to show her stubborness, is that she needs to be urinating frequently, because they monitor it very closely. And last night and this morning, she didn't want to pee!! They kept waiting and waiting and waiting, and finally, they were about to give her some medication to speed up the process, but as the nurse approached the bed and saw Gracey squirming, she smelt something and with further observation noticed that within a period of 5-10 minutes Grace had completely SOAKED through her diaper and every layer of her bedding!! They had to change all the sheets and clean her all up. Just goes to show she's gonna do things her way and her own pace. Even if it means she wets her own pants. :)

Anyway. she's a cutie and we're absolutely in love with her.

Thank you again for your continued prayers and support. We really do appreciate them. We apologize that there has been an unusually long amount of time between posts. Please be patient with us!! We're doing our best. Our main focus right now is trying to be parents as much as possible. We get overwhelmed and sometimes just forget about everything except out little girl. She really is the highlight of our lives right now. We are trying our best to include everyone in our journey and in little Grace's accomplishments and happenings...forgive us if we get greedy sometimes and forget to share the news!! :-)

Thanks for your love, support and prayers! Obviously they are working wonders because Grace is beating all the odds. Thank you Thank you!

Love Alysia, Topher and Grace

A quick note before we fall asleep and fail again to update.  We forgot to take the laptop to the hospital yesterday.  Grace had her stent placed by catheter yesterday, and everything seemed to go well.  The doctors have been monitoring her very closely since then, and we haven't had any major problems yet...thankfully!  Today they are weening her off of the ventilator.  She started the day with about 24 breaths per minute provided by the machine, and she is down to 16 and maybe even 12 breaths per minute from the machine (the rest just done on her own) this evening, so things seem to be going well.  

As a quick note, sorry we went for a while without posting....no news is good news....we promise! :-) Thank you for all of your prayers and help and comments to the blog!  We love you all!

Blessings...

As a quick note: I was just thinking about some of the blessings that we have recieved as of late. Some of this was actually brought on by overhearing some of the situations that the other parents have here in the ICU. We have been very blessed financially. This last few months we have been trying to get Medicaid as a secondary insurence. Medicaid would pay almost anyting our insurence doesn't. We've had a few bumps a long the way: we had to qualify by having an income under a certain level. Usually this wouldn't be too difficult ;-) but the last few months we have had extra pay periods and christmas bonuses and things that were a great blessing at the time, but made our income just over the allowed level. It took us until February qualify. However we had recieved gifts and financial aids that had made it so that we had "assets" that were too great. We had finally worked out a way to pay a co-pay and still qualify, but it was going to really rather expensive.
About two weeks ago we had a blessing from Curtis in which he told us to pay our tithing and a good fast offering. Since then we went to see the medicaid case worker again, and she suddenly remembered a random rule that exempted "High risk pregnencys" from any co-pay. So we will be able to qualify with out having to pay a penny out of pocket! yea! Then we started trying to figure out the monthly budget....and....well, it wasn't so great...so we skrimped as best we could, bought only the bare minimum from the gas station and when alysia went to deposit our next check, our bank acout was exactly 0.00! It had worked out down to the Cent! we didn't have a penny left in the budget but we didn't overdraw at all, it came out EXACTLY! I don't think I could do that again if I tried...We were very blessed.
Thank you Everyone for all of your prayers!!!!!

Here are some pictures of hearts: thought that this might help explain what is going on a little more. First of all, here is a picture of a normal heart. As you can see (you might have to click on the picture to magnify it) blood comes into the right side of the heart (blue to symbolize blood that has had all of the oxygen used up) into the Right Atrium (RA), then gets pushed into the Right ventricle that pumps it through the Pulmonary arteries, and into the lungs. This blood is oxygenated (via lungs), sent back through the pulmonary veins and into the Left aorta and left ventricle. The Left side of the heart then pumps the blood throughout the body.
So in a nut shell the right side of the heart takes blue blood (no oxygen) and pumps to the lungs; and the left side of heart takes the red blood (lots of oxygen) from the lungs and pumps it throughout the body!

Now...for Gracey's heart... The Hypoplastic Left Heart...
Below are a couple of images of basically what Grace's heart would look like. The most obvious difference is the absence of the left pumping chamber. In Grace's heart blue blood from the body comes into the Right side of the heart like normal, and the right side pumps it off to the lungs, but when it comes back it falls right back into the right side of the heart. Obviously this is a rather significant problem...blood never gets sent back to the rest of the body. While Grace was in utero there was a special bridge that all babies have before they are born that connected her right side of the heart to the rest of the body. This makes it so that when blood comes back from the lungs it mixes in the right side of the heart with the blue blood, making purple (partially oxygenated blood) that is then pumped back to both the lungs and through the special bridge to the rest of the body. This special Bridge is called the PDA. In the pictures you can see it near the top connecting the "PA" to the" AO". Normally this bridge will close after birth, and in most babies' cases this is just fine because the left side of the heart pumps to the rest of the body, but in Graces case it would mean serious serious problems. Basically, Grace would die very quickly if the PDA was to close off like it normally does.















The Medication that Grace has been on has kept the PDA open. Today the surgery that she just went through was to make the PAs (the arteries that go from the right side of the heart to the lungs) a little smaller as go off to the lungs so that more blood would be diverted through the PDA to the rest of the body. It seemed to work too, her legs and feet actually felt a little warmer. Tomorrow they will place a little tube (a.k.a. the "stent") in the PDA that will manually keep that open for the time being.
In the end, after tomorrow, Grace's blood will come from the body as blue blood, go to the right side of the heart, get pumped through smaller arteries to the lungs and then sent back to the right side of the heart to mix all up with the blood coming in (purple blood) and then get sent up thought the PDA (thanks to a tube holding it open) to the rest of the body.
That is basically what is happening to grace, as well as I understand it, not the most efficient blood flow (she never really gets "red" blood, just "purple") but it will work for now, and hopefully she can come home and wait for a transplant :-) that will be wonderful, and what we are hoping for at this point.

She is doing wonderfully, She has her own little room now in the ICU...even has her own flat screen T.V. on the wall (though I don't think she cares to much :-) haha The nurses say that she is doing wonderfully. her numbers, i.e. blood pressure, blood oxygen, heart rate, etc. are very good.
The doctor just came in and said that there is an opening in the cath lab tomorrow around 2:00 in the afternoon so Grace will go in to have her stent placed at that time. This second part of the procedure is done through a catheter so they won't have to cut open her chest again. Instead they will just thread a line, starting in her upper thigh, up through her artery. This will allow them to place the stent that will keep the PDA duct open, thus keeps her alive.