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.

Done!!

Wow. So. It's done already. Went much quicker than we thought it would. Dr. Kouredis, (the surgeon) just came out and talked with us, said that everything went smoothly. She tolerated it well and her PDA didn't even spasm and try to shut. She should be back in the PICU in about 45 minutes and then Topher and I can go back and see her. We were worried that her PDA would spasm and try to shut and that then they would have to up her prostaglandin meds, but since that went well, they won't have to raise the levels and so she should be more comfortable. They'll perform the 2nd stage of the procedure tomorrow. We'll let you know when its going to take place. Thank you for your love and prayers. We'll post more once we go to visit our little baby and see how she's doing.

Pre-Surgery

Topher and I, in case you weren't sure, have indeed made a decision and moved forward with the option of transplant. Little Gracey went in for surgery this morning at 8:00. I got to the hospital around 7:30 with my sweet sister Emily and spent about 20 minutes with my little one. I got to half hold her...they let me slip my hands under her head and her bum and just cradle her in my hands for about 10 minutes. I told her how much I and her Daddy love her and gave her kisses, (probably a "no no", but I'm her mommy, so too bad!) said a prayer in my heart that angels would stay with her throughout the procedure, especially when her mommy and daddy couldn't be with her and then went with the Doctors through the hall and watched them wheel her into the O.R.

The anesthesiologist said he would call us in the waiting room and let us know how it went to put her to sleep.

We got our 1st phone call about 30 minutes ago. They said they had started the procedure and that she was doing fine, and that a nurse would be in around 10:30 to let us know how the procedure was going.

Please pray for our sweet little girl that she will be ok and that the Doctors will be perfect!

Heavenly Father has blessed us so abundantly, we know that he is always with us and watching over our little one.

Pray Please?

We just wanted to let everyone know what is going on up until this point. We have decided to have Grace go in for the hybrid surgery (which consists of two parts). The first of these parts (tying off her pulmonary arteries) is going to take place tomorrow morning at 8 a.m.
The 2nd part of surgery will be on Thurs. but we aren't sure at what time yet. We just wanted to let you all know this and ask you to please pray for her and pray for her doctors performing the surgery that all will work out as it should.

Thank you all for your love, support and prayers...please keep it coming. :)

Hugs and Kisses from Bug and Grace and hugs and air kisses from Topher. ;)

Surprises, Information, and Pictures!

Little Gracey had a surprise for her mommy and daddy yesterday...we went to see her and she was under her "tanning bed" (she is a tiny bit jaundiced). When we came they took her goggles off...Topher and I started talking to her and she immediately started to open her eyes to see who it was!
We got our faces nice and close to her and she just blinked at us for another 10 minutes. Just opening and closing her eyes and staring at her mommy and daddy. It was so sweet! It made my day for sure. She has BEAUTIFUL dark blue eyes...and yes, I understand most babies eyes are blue to begin with, but I think hers will stay blue. They are a dark grey/blue and beautiful!!!






Another surprise she had for us was a smile!! Maybe it wasn't really a smile, but it sure looked like one to me. This also brightened our day. Most of the time she is either totally passed out, or she is scrunching her face up and making a sad face from being irritable. But she gave us some smiles, and we of course had to share them.






Mommy changed her diaper again and of course had too much fun as usual.






And here are some pictures of her sun tanning...one is her "pondering" her situation...hehe, and the other one is her sucking her thumb that mommy helped her discover.





The information we got yesterday came from one of the Surgeons that perform the Hybid surgeries as well as the 3 stage surgeries. He came and met with us to bring us a little more up to date.
As it turns out they will be having another meeting with the cardiologists, surgeons and transplant team to discuss more what procedure is in her best interest.
Originally we had been under the impression that she was no longe a candidate at all for the 3 stage surgeries...but what he cleared up for us is that she is a candidate, but, they have no statistics or information on what her condition would be like. They have never actually seen this kind of a heart condition, and so they don't know how her heart would respond to the 1st surgery. He said that theoretically she might be just fine with the first surgery, but also, it might not work at all and be too risky to attempt.
So, on Monday they'll be discussing more if they should offer us the staged surgery still as an option or if they wouldn't be willing to do it.
The Transplant option is still in there for now, but he said that that could change also. The Hybrid procedure is so new that the surgeons have actually only done 6 total. One of them was done for a transplant, and that baby did make it to a transplant. The other 5 were done for different reasons, and he didn't tell us the sucess rate. He did mention however that they are a fairly low risk surgery and was very confident in performing them.
Something else they are trying to determine, (and they are talking a lot with surgeons from Denver) is how soon to perform the Hybrid procedure. They had originally told us they would be able to do the procedure within a week or two, but I guess the protocol at the Denver hospital is that they wait for 1-3 months sometimes before doing the surgery.
The Dr. we talked to yesterday was very supportive of the idea that the best place for the baby to be is at home, and that he was in favor of doing the surgery sooner rather than later so that she could be home, recovering and waiting for transplant, with her family.
Topher and I agree!
So, that is all the information we got yesterday. Again, its a lot. But its also very inconclusive. So, not too helpful. But good to know I suppose.
Hopefully they will come to a more concrete decision of which options to offer us on Monday and then topher and I will be able to make a decision sometime next week.

ALSO...this morning Grace was moved down to level 2 into the PICU instead of the NICU. Supposedly the Dr.'s who take care of the HLHS babies prefer to do that in the PICU...so, we haven't gone to visit her in her new spot yet, but that will be a change for her. Hopefully her view is as good there!

Thank you for all your prayers and for fasting for us. We appreciate the support and don't know what we would do without it.
Love Buggy, Topher and Gracey

*Update*

I didn't realize that this Sunday is Easter. Sorry! For those of you that fast for us, please fast either Sunday OR Monday. That would be wonderful and would help us a lot. But definitely don't feel obligated to fast on Easter!! Thanks again. :)

Long Awaited Information...

Finally...I have a couple minutes, I have my notebook in front of me, and not as many children around me to fluster me ;)

Yesterday afternoon a lady from the Transplant Coordination Team met with Topher and I and gave us a huge amount of information.

Just to warn you, it really is a LOT of information and may be hard to read and really take it all. So I apologize in advanced if its incoherent or doesn't make very much sense or is slightly jumled. I'm doing my best. :)

To begin with, before she can be put on the Transplant List, there are a few tests they have to perform to verify her eligibility:
1. Echocardiogram
-This determines how serious the problem with her heart is
2. Blood Work
-This is to determine her blood type and ALSO to safeguard...i.e. determine if she has been exposed to HIV, STDs, CMV, EBV, Hepatitis etc...
3. PRA
-Don't ask me what it stands for...I don't know. I do however know that this last test is to check for any antigens or antibodies that may already be present in her system. This part of the test needs to come back at 0% so that they know there isn't anything that would immediately start rejecting and attacking a transplant.

Once all of these tests are performed and if she qualifies, she would be put on a Wait List that spans across the country. She is listed according to size, how sick she is, and blood type.

They also have a sort of grading scale. The highest you can be on the list is a 1A, next 1B, next 2, and then I believe it jumps down to a 7 or something.

Each of these levels has 2 or 3 conditions that will justify the baby being in that category. These qualifications are things like what kind of medication the baby is on, if they're on a ventilator, how old they are, if they're at home, and things like that.

So a 1A has to be on a life-sustaining medication, or ventilator for example. In Grace's situation, this would include her Prostaglandins, as well as her ventilator, so she would be a 1A to begin with.

Once they're on the list, the AVERAGE wait time, for anyone on the donor list is 4-6 months. It normally is actually even longer than this for babies however, because babies just don't die very often, and when they, do, a lot of the time it is from a heart defect.

One of the first things that would happen once she is put on the list is a new procedure called the "Hybrid". This procedure consists of them doing a surgery that puts bands around her pulmonary arteries, and then putting a catheter up through her leg to place a shunt in her heart. The purpose of the shunt is to keep the PDA open, (right now the Prostaglandins are keeping this valve open). So, once this procedure is done, the idea is that she could come off the prostaglandins, her saturation and oxygen levels would all stabilize, and we would be able to take her home with us while she waits for a heart. The only downside about this procedure is that since she would be taken off the prostaglandins, she would go down on the list from a 1A to a 1B.

The next step, is that Topher and/or I would be given a pager to carry with us at all times so that when/if a heart is found for her, we would be notified of where/when and the condition of the heart. Sometimes, even once a heart is found, it still doesn't cut it because the surgeon will go to look at it and it doesn't meet the necessary specifications. So, its definitely a lengthy tedious process.

Once she were to get a heart, she would be in the hospital for recovery for about a month or so, and would then come home with about 10-15 medications. 3 of these medications would be immunosuppressants to make sure that her body doesn't reject and attack the heart. The rest would be antibiotics, stomach meds and blood pressure meds. Eventually she would be weaned off of a lot of these medications, but she would be taking 2 immunosuppressant medications for the rest of her life. The major downside of these is that she HAS to take them, but their one large side effect is kidney damage. After a couple years, the damage just gets worse and worse, sometimes leading to kidney failure.

Her follow up care after the surgeries would be 2 visits to the Dr. a week for the first 3 months. Then 1 visit a week for a long time, and after a couple years, their goal is a visit every 3 months. Each of the visits is expected to be 3-4 hours because they do an echocardiogram each time as well as blood work.

The survival rate after the first year of a heart transplant is 85%. Then each year it goes down. After 5 years its 75% and after 10 years its 65%. But then again, there are people that are in their late teens and early 20's that are still on their first heart. It varies a lot.

Some things to know about the Primary Childrens Transplant program is that they haven't actually done transplants at all for the past 7 months because their Transplant Director left. In the past 3 months, they have only done 3 transplants. And, they haven't transplanted a heart for an HLHS baby since the 1990's.

Topher and I are supposed to meet with the surgeons that perform the surgeries sometime next week to ask them more questions about their experience and statistics. Hopefully that will help us make the best decision we can.

Some of you have asked why we can't do the transplant at a different hospital...although this is an option...its not a very good one for us. We can't just go to a different hospital for a month to get the tranpsplant done. We would have to completely relocate to the state the hospital is in, and live there for a year or two before we would even be put on the list there. Then we would have to stay for another year or so after the surgery for follow up care. So, it would be a complete life alteration for Topher and I as well as a very stressful move for Grace.

Theoretically, once the babies have a transplant, they experience a very normal high quality of life. They can do anything that other kids can do, they just have a few extra Dr. visits and medications.

Topher and I do think that this is a blessing in disguise. That it really is a good thing that she can be considered for this option. However, it seems very overwhelming and stressful as well as a very lengthy process where the end is never really in sight.
We are still wanting to pray and fast for the right decision. Please don't think that the decision has already been made or that stories or experiences really help us make our decision. We really just want to pray and pray some more about what is best for our baby and for us. We hope that what is right for her and for us is for her to stay with us as long as possible, but until we have a confirmation from Heavenly Father, we really don't know what the right thing is.

We would like to ask everyone to pray and fast for us and for Grace this Sunday as we try to prepare ourselves for one more meeting with the rest of the Doctors and as we make our decision this coming week. Pray that we won't be led my our own personal desires, but that we'll be able to focus on what the Lord has in store for us and for Grace.

We love you all and so greatly appreciate all of your love and comments. We're amazed at the response we've gotten from every corner of our big family and we're so grateful that we've been able to get all this support and that we've been able to keep everyone updated.

Thank you again for all your love and support. Again, just keep praying! We know it makes a world of difference.

Love Buggy, Topher and Baby Grace

more pics...and side note

we really need to go to bed. we're just both so obsessed with looking at pictures of her. we can't get enough!!!
so...here's a couple more...and then we really are going to go to sleep. :)

just a little side note...

I've heard through grapevines that some of you are sad after the news we've gotten thus far. I've heard that some people were slightly angered by how unfair the situation seems...(and it is very possible that this side note may just apply to my (buggy's) immediate family...)

but, I wanted to let you know that last night, when Topher and I were reading scriptures we were reading in Alma 29. After reading, we talked about our impressions.

Verse 3 reads:

"I ought to be content with the things which the Lord hath allotted unto me"...later in the chapter it says, the Lord "doth grant unto all...that which he seeth fit that they should have...the Lord doth counsel in wisdom, according to that which is just and true".

Topher and I know that our Father in Heaven loves and cares for us. We know that he would never do anything that would make us unhappy, at least...not permanently ;) . We know that the path he has laid for us is one which leads to eternal happiness...even if it has temporal pain and trial.

We don't want to, per say, be banging our heads against the door that has shut, when really Heavenly Father is opening another door just behind us. A door that may have better outcomes. Complicated and overwhelming, yes. But possibly much much better.

Anyways. To be honest, I'm quite unaccustomed to the overwhelming flow of comments and support coming from all over the entire family on our blog. Normally, I get a few comments from my immediate siblings. So I apologize if my ramblings don't make sense to anyone but them. But, I did want to share that we are trying to keep our faith strong. We don't want anyone to be sad or disappointed or angry with the turn things have taken. Especially if any of that anger is directed at Heavenly Father. We truly believe that he loves us and is watching over Grace at all times.

Please continue with all the love, support, faith and prayers. It's the one thing we all can give Grace that will help her the very most.

FINALLY...good night! Sweet dreams!

New Pictures for the Day

I realize that most of you are probably awaiting the blog about our meeting with the Transplant Team today, but Topher and I are completely exhausted and overwhelmed.
We will post, I PROMISE. But, we really need some sleep and time to process all the information.
If it was awful news, we'd post it, and if it was wonderful news, we'd post it. Since it's just overwhelming complicated news...we hope you'll be ok with getting a post first thing tomorrow. :)
So, to hold you over til' tomorrow...here's some pictures we took today.


Topher got to do Diaper Duty!! He only needed help a couple times and encouragement that tightening the diaper so it would stay on was not going to hurt her!!



This is about as beautiful a picture as you can get now that she has the ucky ventilator tube down her throat. Its so sad that you can't hear her little whimpers anymore. Not that you want her to whimper...but they were such sweet little noises.

Well... I don't know where to start. It has been a long day. We checked out of the hospital, and after three days, we are back home for the first time.
We had quite the morning. We made it out of bed, after a questionable hospital "omelet" and started off to see our little Gracey. When we walked into the intensive care unit, we found a small gathering of doctors and nurses around grace's bed; something that we have realized is not a good sign. It turns out that Grace had had a few episodes during the night where her life saving prostiglandins medication had relaxed her muscles to the point where they forgot to breathe and so they were in the process of hooking our baby up to a ventilator. The nurses said that she had done well to last this long without it, and hopefully she would get more used to the medication and be able to come off of it soon, but for now the machine would do the breathing for her. She is starting to look like she is lying in a plate of spaghetti, surrounded by all of her tubes and wires.

Trial of Faith

Well, it may not be the answer we were praying for or expecting or wanting, but its another decision we have to make none the less.

We met with a set of cardiologists around 1:45 today. They had had a meeting with the other pediatric cardiologists as well as the surgeons earlier in the afternoon and I guess that after meeting together and going over Grace's condition it was determined that she isn't really a strong candidate for the 3 stage surgeries anymore.

The reason for this is because Hypoplastic Left Heart Syndrome is of course meaning that the left side of her heart is underdeveloped, therefore their hope is that the right side will be in perfect working order so it can work hard to support bot sides. However, a very important valve called the Tricuspid valve on the right side of her heart, is also very under developed and malformed.

The surgeons said that they didn't think it would be possible to fix this problem. If they were to continue with the 3 stage surgeries, she would have a 50/50 chance of survival or death. And, even if she survived the first surgery her chances of being a candidate for the other two necessary surgeries would also be very slim.

After the cardiologists explained this to us, they told us that our other 2 options are Comfort Care, which many of you have probably heard about somewhere along the line now. If not, comfort care is just where Topher and I are able to take baby Grace home with us, off of her prostaglandin medication, but we are doing so knowing full well that she may only survive a few days or weeks.

Topher and I have never been a big fan of that option, so, on to the next...

They mentioned that because she is no longer a real candidate for the surgeries anymore, she can be considered for Transplantation.

To get a heart through the Transplant system can take anywhere from a month to longer than 5 or 6 months. Also, there is always the risk of the body rejecting the new heart. The heart would only last 10 or 15 years and she would then need another transplant. She has to take medications throughout her whole life to prevent rejection. And of course, what is especially difficult for me, is the thought that someone else's little baby had to die for our little girl to live.

Well, along with this option is the new practice they have called the "Hybrid". This is where they place a shunt in her heart to temporarily allow blood to flow where it needs to, and sometimes because they do this procedure, the baby can come home while it waits for a heart. Sometimes, taking the baby home can put it lower on the list for a transplant, but that has yet to be confirmed.

Anyway....I know that this is a TON of information. As well as VERY overwhelming and possibly not really making sense. I apologize. I'm a little flustered and overwhelmed as well, so I apologize for any incoherence. Topher and I are very confused and sad and just trying to keep up our faith.

We are praying that Heavenly Father will let us know what he has planned for our little girl. We want so much to keep her in our lives, but don't want to be selfish if Heavenly Father needs her back.

Please pray for us to know which direction Heavenly Father would like us to go. Pray for our little girl and pray for the people that are taking care of her. Pray pray pray. Just like you have been. Thank you thank you for your prayers, love, comments and support. They help Topher and I a lot during this tough time.

love you all

-buggy and topher

Going to talk to the surgions....see what they think is the best route for Gracey. We'll let everyone know what happens soon....

No News....But Pictures

Some Pictures of Grace from this morning, I (topher) got to hold her for the first time this morning. She is so beautiful, a cute, cute little face, i don't think I've ever seen such a beautiful newborn. Then again I might be a little bias..... :-)

By the way...just so you all know, (this is mommy talking now) Topher DEFINITELY has the magic touch with her. she was crying a little when we came in and sort of irritable, but as soon as she was in Daddy's arms she quieted right down, went to sleep, and later tried to open her eyes to look at who was holding her!! And...although it may not be a positive...we're pretty sure he got a little smile out of her when he was tickling her chin. All in all, Topher is an adorable daddy and his daughter is taken with him. ;)

We still haven't heard word about the surgeon's meeting. So keep praying and we'll let you know when we know!

PLEASE PRAY!!!!

hello. sorry its been so long inbetween posts and that this one is coming at 3:30 in the morning, but Topher and I are sort of on a wacky sleep schedule at the moment!! We've been sleeping since about 7:00pm yesterday and now are kind of more awake!!

We would like to ask everyone to please please please pray like crazy for little Grace.

Although she is a little figter and doing amazingly well...there are some complications in her path already.

After her echocardiogram yesterday, (an in depth ultrasound that looks at her heart) they verified that she does indeed have Hypoplastic Left heart, but also that her Tricuspid Valve on the right side of her heart is also very small and underdeveloped. This is a complication that they hadn't expected and it may be something that they cannot fix.

They are supposed to be having a meeting with all the cardiac surgeons this morning sometime about whether or not they can fix it.

Sadly, if it cannot be fixed, she is no longer a candidate for the surgeries. And the consequences of that are something Topher and I don't want to think about right now.

We have faith that everything is going as it should and that little Gracey will be fine. But please please, your prayers have helped her so much already, please continue them coming in her direction as much as possible for the next few hours.

We love you all so much and appreciate the love and support.

Hello Everyone!!

This is Buggy! I just wanted to say hi to everyone personally. Topher has been so wonderful to post for me and keep everyone updated on the baby!! Thank you so so much for all your support and comments. Baby is doing great. Topher and I are doing great as well. We're both exhausted and I'm just working on getting Topher to eat since he's gone almost 2 days only eating half a turkey sandwhich and some orange!! Crazy boy.
Topher is adorable and sweet and the sweetest new little Daddy in the whole world. He's completely smitten with his new little girl and is taking amazingly good care of his wife!
Again, thank you for all your love and support and for keeping updated on our situation. Also, thank you so much for all your prayers. They have helped so much and have meant the world to us and have made such a difference on our little girl's development and progress. Keep em' coming!! We'll keep you updated. Sorry if my blog is super boring compared to Topher's past ones with pictures and everything! I just wanted to say hi and thank you for your support and comments!
love you all
-buggy

Day 1

Here are a few more pictures. As an update for what has happened so far: The baby was born at 9:45 am, and she went right into the newborn intensive care unit. We didn't get to see her much more than a glance. She was in there for a couple of hours as they placed all of the I.V.s and monitering equipment and stabilized her condition. She is pretty strong, did well and we were able to go and see her before they moved her to primary childrens. Some of the pictures I posted were at that point. Alysia got to hold the baby for a few minutes, she is so beautiful...both of them!! We gave the baby a blessing and then they stabalized her once again for her "flight" with the life flight technicians across the bridge to primary childrens. I included a few pictures of her in her bubble as she went on her first little trip to her new home for the next few weeks. They then placed her in the pediatric intensive care unit. then they have been doing an echo cardiogram so that they could start to prepare for surgery later in the week..... By the way, i'm sorry if this is a little jumbled, we havn't really had much sleep in the last 2 days. :-) thanks everyone!!!

PICTURES ANYONE?

Well, we are dying waiting to be able to go and see her for real... they said that it will probably be another half hour, but they just brought in a wheel chair for bug, and hopefully, it will be a little sooner. We'll take lots of pictures for everyone. Thank you for all of your prayers and the comments that you leave, I read them all to alysia....I think she is feeling very loved..:-) Thank you!

It's a Girl!!! of course, we knew that, but she is beautiful!!! We got to see her for a moment, as they passed her right into the intensive care unit...she was screaming and so beautiful!!! She is six pounds 11 ounces, 20 inches long. She doesn't need any oxygen yet....pray it may stay that way, she is a strong little girl! Right now they are inserting all of the tubes that she will need for the food and medice that she will need for the next few days!!

My brave bave little buggy!! We love you So So So much!!!!

Still waiting.... not to much yet....

We are mostly just waiting now, the baby is into the birth canal, they just want her to get down a little farther, so that buggy is ready to start pushing. She says "I'm ok" and is finally looking like she is resting a little....I don't know about buggy, but I really really like epiderals..... :-)

here we go......we are just starting the birthing process.....

Things have really moved along now!! Alysia made it through the whole night, and dilated to a nine. She has an epideral now, and the doctors are saying that she will probably be ready to start pushing within the hour. We really havn't had any sleep all night, especially Alysia, she has been in so so much pain. Her contractions are really wierd with the induction medicine, and she is exhasted!! We have hopefully an hour or so to rest now before the real work starts. The doctor expect that Alysia will start really activly pushing with in the next hour. Then they said that since it is a first baby that it will probably take another hour or so? but they weren't really sure about that....so we'll see....pray.....Little gracey will be born today....

The Name

As a quick note, we have had some questions as to what name we decided upon. We have chosen to call Her Grace Anita Andersen. She is our little gracey and with a lot of blessing and miricles we will have her for a long while.

it has been a rather rough 2 hours. The petocin worked very well...my poor wife...she spent the last 2 hours completely exhasted and in a lot of pain. She is still at about a four or a five, and progressing nicely, but the contractionts were coming heavy, about every minute or two, and very painful, and they worried about the baby a little so they took off the petocin and alysia got a little bit of pain medication to help her get some rest...she is soooo exhasted she was feeling sick. Now she is finally lying peaceful again and hopefully falling asleep. Thank you again for your prayers, and pray for alysia to have the strength that she'll need tomorrow.

Long Night

It is a long night, trying to sleep as much as we can. buggy is still doing great, having contractions every one to five minutes or so now. Nothing to major yet, hopefully we can go back to bed for a while, though buggy is grimicing more and more now.

Quick P.S.

Thankyou for the comments...we read them almost as soon as they are posted...thank you for all the love.

Petosin!!

Well... They just came in and checked alysia and she was dialated to a 4 and efaced 70 to 80 percent. They said that she was a "one dose wonder".... the Cevix just opened up..."awsome for a first time baby" So they are starting Petosin! This will put her into labor for real now so things will start moving forward...though it may still mean another 12 hours? who knows...we are still shooting for a daytime delivery though...they want the team at Primary to be all ready to go, just waiting for the baby when she is born... so they are giving her a really low dose for now, I think they said about 2 ml an hour. Hopefully she'll be able to get some sleep and be ready for a big day tomorrow. Thankyou again for everyone's prayers!

Well, this blogging thing is pretty neat. I think that I'll post another. I hope there are some of you out there enjoying this as well, please feel free to leave comments and let us know how all of you are doing. Also, I would like to thank everyone for all of your prayers. We have had so many people that have let us know that they are praying for us, and asked us if there was anything we needed or anything...we've felt very, very loved. Thank you very very much!! We are very nervous and woried, and excited. Not really sure what to expect, but that may be rather normal for having a baby, especially the first. We're praying a lot and really feal that it will end up all right, but we are braced for quite a ride. From what the nurses said to us tonight, we are going to have the baby mid dayish, and then after a quick look she'll be moved right through the window in our room into the intensive care unit and will spend a half hour or so being "stabilized". Not sure everything that will happen at that point, but she will be hooked up to all of the moniters and I.V.s that she will need for the next few days, and prepared for the walk over to primary childrens hospital. At that point they said that she will be put in our room for about ten minutes before the move to Primary childrens. At that point we can have family see her for a moment before she goes over to the NICU and the rules are much stricter on visiters. So we will keep the family posted on the timing and hpefully make that time available to show off our little girl..who will no doubt be the cutest thing ever :-)

So that is about the extent of what we know at this point. Thank yo again for all of your prayers and thoughts!!