Friday, February 26, 2010

The GI Series - #4 - Revelations

Gee, guess what? C does not have reflux. What you say? You have been giving her meds and treating for reflux now for 4 months and now there is no reflux? Yep. That would be correct. Not one tiny, little bit of reflux showed up on any of the biopsies or the ph probe.

Nothing at all.



So, where does this leave us? Well we are not exactly sure. Kevin got the call from the GI this morning. We are scheduled for another nuclear medicine scan...this time of her GI track for Monday, March 1. Our understanding is the doc is looking for any kind of blockage.

Stay tuned for the next turn of events.

If you hear a very, very, very loud explosion from down in our area...that would be mine and Kevin's heads exploding because they did indeed find a blockage. And that is something we have been telling ALL the doctors forever that we think the problem is. If there is a nuclear type of explosion that will be us as well if they tell us C has to undergo another GI surgery when this all could have been corrected in the first GI surgery she had at 8 weeks old.

Now, I must go love on my sweet little girl who is all out of patience with me ignoring her....ha ha.

The GI Series - #3 - After A Good Night's Sleep

well, at least for me..not so much for Kevin. The new hospital is much better at being family friendly and Kevin did have a decent place to sleep in C's room. The lack of sleep comes mostly from C's eating schedule. Since she eats at 11:30pm and 5:30am there is not much time to get sleep in between. Usually I do the 11:30pm feeding and Kevin does 5:30am but with only one of us (Kevin) staying with her in the hospital overnight he got to do both feedings. He volunteered to stay with her because he is just sweet like that. Plus, he knows he can get by with less sleep than me. I will make it up to him tonight though and make sure he gets to sleep early!

C is doing fine. She was her usual self over night with eating. She is having a lot more pain than she had been because she has had to be off her reflux meds (prevacid and reglan) for several days in order to get an accurate ph probe. She cannot be taking meds to reduce the acid when they are trying to measure how much acid she produces. So she has been in pain which makes feeding her much more difficult than usual.

Poor Kevin was also here this morning when the GI doctor came by. When I spoke to Kevin shortly after that visit I could hear the frustration in his voice. I think he said the GI docs are useless. Not sure we would really go that far...but it is frustrating when one one hand you are being told you are doing everything with her feeding wrong but on the other hand to keep doing what we are doing because she looks good. So weird and very frustrating. Unfortunately, the GI docs get kind of a bad rap. Much of what they see and try to treat, like reflux, is not something that can be cured. They can give meds to help with symptoms but they cannot make it go away. Only time will help with that. This all leads to finding the right balance of meds, caloric intake and fluid volume intake in order to keep C growing like she should be. Right now C is not really taking in enough calories or fluid to keep up with what would be consistent in a normal baby much less the increased volume she needs because her heart is working harder than a normal baby's. Somehow, up to this point, she has still been gaining weight but we are in a danger area now. She is at the bottom of the growth charts now and she is in danger of falling off. Once her head shows no growth we have reached critical status. We are not quite there yet but we are doing all this to try and avoid getting to that point.

On the positive side, C does not have any damage to her interior from acid. She does not have an ulcer and her esophagus is not inf lammed. Not sure if that is from being on the reflux meds already but it is good that there is no damage. The biopsies along with the results from the ph probe will be able to tell us a little more info about the reflux. The biopsies will also tell us some other stuff like allergies, etc. (Please forgive me if I am repeating anything I said in yesterday's email...lack of food and hunger tend to make me loopy). The best part is that the ph probe comes out in about 15 mins and after that we can go home. Yea! She did not get put in the cvicu, just the regular floor so there is no one other than GI to get clearance from. If GI says we go home then we do. So, we are actually looking to be out of here soon and even home soon.

Well, the nurse is here to start removing the probe and C is crying so I need to go. Thanks so much for all the support and prayers.

The GI Series - #2 - Why Are We Here Again?

Oh yeah. To try and figure out why C is not eating. To see if there are any anatomical gi issues and/or seriously bad reflux. And well, that just did not happen today. I keep hearing that the very definition of insanity is to do the exact same thing over and over and expecting to get a different result. I think at this point...Kevin and I are completely past insane.

However, C is doing well. She did fine with the anesthesia. She actually did not need the full anesthesia (the paralytic part) and really needed just the heavy sedation. The anesthesiologist did not even intubate her this time. Just was not necessary. Very good thing. We did see the GI doc after the scope and what he showed us is that she is basically fine. So. Great. He did take 3 or 4 (not too sure as I was about to pass out from hunger by this time...get to that in a moment) tissue samples that he sent out to biopsy. Takes about 3 to 5 days to get the results back from pathology. He was explaining all the different things he is testing for...again the hunger thing so I did not catch all but did hear allergies and some other stuff. He does not have any answers right now. Awesome. And even better...he can't tell me what happens next if her GI track is in fact just fine like he thinks (no blockage) and there is no real reflux (she is currently showing no signs of acid damage or ulcer or anything). Again...awesome. So, it seems like we are at the point of ruling out what IS NOT the problem. Kevin finally got to experience my pain when the GI doc said to just keep doing what we are doing...I do think Kevin even mentioned that he wanted to strangle the doc. Hee hee.

C was her usual happy self all day. Even with the 2 hour delay because of really ridiculous (I am tyring to be nice and not call anyone names) scheduling people. First, she was scheduled for her procedure at 12:30pm. Really...a 6 month old baby not to go until 12:30pm. Come on. Second, as you know C is a very hard little one to get an iv into. We told the nurse and everyone else this. You would think we would know at this would think. As usual they don't listen. The iv team came up at noon to place the iv. Really? 30 mins before the procedure? Are you kidding me? Stuck her twice and called it a success on the second one. I was telling them it was not right. She does not keep screaming in pain after the iv is placed if it is correct. one listening. I even told the anesthesiologist this when we finally saw him. Guess what? I was right...again. The iv was not right and she has a different one. Fortunately she was already sedated when the anesthesiologist placed this iv. He said he would sedate her first and try the one iv and if it did not work would place a new one.

Two months ago I did not think there was a better place to be than All Children's Hospital. I was so super happy with our experiences here. I can tell you, after today I think I will be going to St. Joe's in Tampa from now on. The complete and utter stupidity that we have had to deal with today would test the best of people. From being scheduled so late to start with to then getting here and being delayed two hours why the figured out how to get a cardiac anesthesiologist because that is what C needs to the miscommunication to the leaving us to sit for an hour and a half with no communication with what is going on. Complete and utter stupidity.

I am still very happy with the care C is getting. The nurses are awesome and I do love all C docs. This hospital though...I have some choice words for the admin here.

I really did want to post earlier and let everyone know what was going on but I just could not get to my computer until now. Shoot. I JUST got to eat "lunch" at 4:30pm. Grrrr. Stupid hospital.

Anyway. C will be here until tomorrow afternoon. She has the ph probe placed and we will be monitoring it for 24 hours. GI doc will interrupt results once he gets them. She is not going to the CVICU. Yippeee! That means we really will be out of here tomorrow. No intensivist sitting over our shoulder telling us everything we are doing wrong. GI doc will get back with us around Monday or Tuesday next week with all the other results. He said what he saw today is only about 50% of the picture so just waiting on the other 50% to see if there is anything there. C is awake and fully aware. Kevin is giving her a bottle as I type this. We will see just how much more she likes eating with having a tube down her throat...ya know on top of all the other reasons she just loves to eat...goody.

Thank you all soooo much for thinking of us and praying for us today. I think all your prayers are what has kept Kevin and I from taking someone out. Patient is a virtue and one we are still learning. I am so very grateful for each and every one of you and all of your kind comments. We really are blessed to have such amazing family and friends.

The GI Series - #1

C will be going back to the hospital this Wednesday, Feb 24 to have two gi tests done. She has not turned around her eating yet and she is now in a danger area for growth. She is just not gaining as quickly or as much as her docs would like (At 6 months old she is 12lbs, 7ounces...she should be close to or over 16lbs based on her birth weight). So, C is scheduled to have the upper gi scope and have a ph probe placed. The scope should give us some answers about the make-up of her tract and also show if there are any problem areas. The ph probe will be in place for 24 hours and measure how much acid is coming back up and how high up the tract the acid is coming...if any at all. The ph probe will be the definitive answer on whether C does in fact have acid reflux. She was diagnosed as such based on our description of symptoms but has never been tested for it.

We have learned that C will need to go under anesthesia for this. We were really hoping we could get by with just sedation. I really dislike having her go under anesthesia again for what is a 10 minute procedure but her cardio doc says this is the better way to do it.

C will be staying in the hospital at least one night (ph probe needs to be monitored) but we have a strong feeling that she will be there for a little while. Her eating is so horrid right now that we really do not think they are going to let her out. I am sure she will be put back in the cardio icu because of her heart and getting discharged out of the icu is like trying to get Congress to work. Takes forever. The icu docs are always coming up with one reason after another to keep the babies there for "observation" and unfortunately C has a real issue right now with her eating. We are also thinking she will not be leaving the hospital without a feeding tube placed.

However, we are staying positive and hoping for the best. All we really want right now are some concrete answers (yeah right!) and some relief for C. We can definitely now see the toll this is taking on her. She either eats very little (or none at all) and/or eats the bare minimum amount, which would be okay, excepts she throws it all up. All of it. The whole bottle. She gets listless and blueish looking because she is sooo hungry but in pain when she eats. She is treading a very fine line right now and we just want her to feel better so she can be her normal happy self all day.

I will let you all know how she is doing and once we get any kind of answers. Although C will not be having any surgery this time, I am still asking everyone to say a prayer for her. Anesthesia is risky with heart babies. Thank you all so very much for your love, support and prayers.

Wednesday, February 17, 2010

Thursday, February 11, 2010

The Good, The Bad and The Ugly - Sunshine and Rainbows Edition

I was just thinking yesterday, after re-reading my most recent email, that even though I try to be positive, I am always giving you all the bad and the ugly. I know I am a realist and therefore tend to not be all sunshine and rainbows, however, I feel I need to spread a little sunshine and a few rainbows. So here is the good.

Our lives with Carolena are not as horrid or scary as it may seem from our updates. C is very, very blessed to have been born in 2009. 50 years ago, C would probably have passed in her sleep and been considered a SID's death. 30 years ago the doctors were beginning to figure out the 3 step surgery offered for C. Diagnosis of these CHD's was much better and more accurate and the surgeries were having success. 15 years ago the 3 step surgeries were becoming successful enough HLHS babies who normally passed within a few days to a few moths were growing into young adults with relatively normal lives. Today, the success rate and survival rate for HLHS babies is tremendously positive. Everything from the doctors, to surgeons, to medicines, to support machines are a thousand times better. Information, research and trial and error have led to these amazing survival rates for HLHS babies. Who knows, with the way medical knowledge and technology advance C could have a fully grown and functioning heart grown from her own stem cells transplanted back into her when she needs it. The possibilities are endless. I have recently heard there will be national debate on what to do with the babies who are adults surviving with CHD's. Were are going into a new realm here and breaking ground.

C will be 6 months old Feb 19. She is laughing, smiling, talking and playing. She reaches for and pulls down toys from toy bars above her. She rolls all over the place. She still sucks on her hands and has recently found her feet. I just caught her the other day sucking on her toes. She is super fun to dress up. Having two boys I never really appreciated how fun it is to dress a baby. With C it is like having a living baby doll who is just so darn cute in all the little girly stuff.

She is a funny girl and loves to crack herself up. Every time she sees herself in a mirror she gets the biggest smile and tries to touch her face. She knows she is pretty and I think she is figuring out how to use that to her best advantage. Girls sure learn that early.

We do not do that much different than you would with a perfectly healthy new baby. Outside of the myriad doctors appointments, we would be pretty much facing the same adjustments and daily crap we would if C was perfectly healthy. Kevin and I were so darn spoiled with our boys. Even with all this, C is remarkably well adjusted. She only ever cries when there is something wrong. She is not overly upset with shots or pain. She does look to Kevin and I when we are with other people but she does not have a problem with new people. She is actually pretty fascinated with them. She literally smiles all day long (minor exception is 5pm..but I think everyone cries at 5pm...isn't that why that is the mid point of happy hour?).

Anyway, enough of my babbling. I just don't want every update I send to be about C medical condition. Yes, she still sucks at eating and a feeding tube may be in our eminent future but it is what it is. Yes, she cannot be cured at this time, but who knows what they will be able to do in 20 years.

I have attached some pics because, well I can and I just love this little girl so much and want you all to see what I see everyday. (I apologize in advance if these files are HUGE and you cannot get them to open quickly on your computer...I have no idea what the settings are on the pics coming from my blackberry).

Email Update

Sunday, February 7 started the Congenital Heart Defects Awareness week. This whole thing is kind of confusing because there is not too much under the American Heart Association having to do with CHD's. The AHA gears more toward heart disease, etc. and quite honestly there seems to be no real cohesive group to pull everything together. However, each year more children with CHD's are fighting and surviving, living well into adulthood and beyond. CHD's are no longer the consummate death sentence they used to be. There is hope. A lot of hope. And with this hope does come more awareness. There are several groups now that deal specifically with CHD's. My two favorites are:

Each of these groups provide information but also outlets for support for parents and families.

I thank God everyday that there are doctors, surgeons and researchers who believe that one day they can find a cure for CHD's. That one day they will be able to know just exactly what causes CHD's and will be able to prevent them from happening and if not prevent them know how to cure the heart once the baby is born. There is still so much research that needs to be done.

We face this everyday with Carolena. C is a special case. Her CHD's put her squarely on the most rare end of the spectrum for CHD's. Her heart will never be healed. She cannot be cured. The doctors and surgeons do not have a surgical way to rebuild/repair the part of her heart that is essentially missing. The surgeries she has already undergone and the one still to come only re-route her blood flow allowing for her heart to not work as hard and for oxygenated blood to get to all the parts of her body. As the intensivist doctor in the hospital put it...her heart is in a perpetual state of failure, the staged surgeries will allow for her heart to last longer but it will fail.

Now having depressed everyone enough...I would just like to urge you all to take a minute and check out the sites. Remember heart defects are the #1 defect in babies..approximately 1 out of 150 babies is born with one. There needs to be more funding for research.

On to updates: Carolena is still doing pretty well except for her eating. She still sucks. C has now had the swallow study, the gastric emptying study and one session of feeding therapy. She can physically swallow just fine, apparently her tummy empties just fine (we have our doubts about that one) and feeding therapy cannot really help us. Awesome. I did take her to see the GI doc again this past Friday (2/5) because she has decided that she just does not want to eat again. GI doc changed up her Prevacid and is giving her 5 days to respond. If not then he said would look to do Upper GI series and also PH probe. Still really hoping she turns it around on her own soon. On the bright side she does actually like baby food..her favs include apples, pears, sweet potatoes and carrots. Catch the trend here...she loves the sweet stuff! She has also tried peas, green beans and bananas. The only thing she has absolutely just sit out has been bananas. Weird, right? Well, it looks like the banana stash will be safe for big bro Todd (who by the way could be a monkey with all the bananas he eats).

C is really incredible otherwise (and almost 6 months old). She is a happy little thing. Smiles first thing in the morning. Selfishly I like to be the first one she sees because I love her smiles. She is extremely vocal. Just talks and talks. Pretty funny actually. She is rolling all over the place and is still wanting to sit up. She has to do everything the hard way of course. She could probably get to sitting if she just rolled from her side and up but she refuses to do that and is convinced she can go straight to sitting from a reclining position. Silly girl. She is amazingly strong and loves to be on schedule. She sleeps well and her heart and lung function are great. Her oxygen levels are still really high and she rarely looks blue. We are starting to take her out a little more now but still being very careful to not let anyone touch her or hold her. She LOVES her brothers and gets really upset when they leave her alone. She particularly adores Todd. Probably because he tries really hard to entertain her and make her laugh. Her hair is remaining dark, even though it has lightened up a lot I do not think she will be a blonde like her bros...however, her eyes are still blue. Go figure.

Thank you all again for continuing on this journey with us. My family is so blessed by all the prayers, well wishes and good karma being said for us. Hope everyone is doing well.

Monday, February 8, 2010

Congenital Heart Defects Awareness Week

This is hard for me to do.

Mostly because I feel as though I do not have enough time to write a post the way I want to. Also, I want to add pictures and all my pictures are all tied up on my home computer. There is never enough time in my little world anymore.

Time is something you lose when you have a child with CHD.

There is a constant battle with time. We spend so much time worrying about doctors appointments, when to be where, who is taking her this time, who will stay with the boys. Is it time for her medicine. Is she suppossed to eat again. How much time will she spend in the hospital this visit. Will she have to go back. How much time do we have with her. Will her heart fail today, tomorrow, next week, next month, next year. Will her eating get better. Will we always have to fight her. Will she get a tube. How long will she have the tube. When can she be a normal baby, toddler, child. Will she ever have a somewhat normal life. Will we?

We live in a constant state of flux, never knowing what will be waiting for us the next day. We are exhausted and frustrated but we push through no matter what because that is what parents do. Keep going, mostly with a smile, so that the children feel safe and secure. That their world remains a constant. Bills are paid on time. Laundry is done. House is clean. There is good, healthy food in the house. Lunches get made. School projects are done. School events are attended. T-ball for Todd. Go-karting for Kyle. C is happy as she can be.

Parents...we do without. Without sleep, without eating, without worry-free nights, without couple time, without intimacy, without showers, without "me" time, without relaxation. It is what it is. Having a baby is difficult, having a baby with CHD is a thousand times more difficult. The constant state of not knowing is horrible.

Live for now. Live in the present. Great advice. You try it all day, everyday, and get back to me and let me know how it worked out for you. We are all human and will have bad days, and sad days, times when we just want to give up and lay in bed all day with the covers over our head because it is easier to just NOT THINK or do anything.

There is no more time.

I thought I was ready to do this. Have this special child, this angel, who would enrich our family. But I was wrong. You are never ready to have a child with CHD.