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.
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.
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: 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.
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.
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.
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. ;)
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
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:
-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...
-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
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.
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....
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!!
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
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!
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....
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.
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!