Friday, March 26, 2010

Opinions, opinions, opinions

Today we took C to Shands in Gainesville to get a second opinion from a pediatric GI doctor there who is very highly regarded. His office was very good to us and got us an appointment as quickly as they could and today was the day.

Can I just say, traffic right now is just CRAZY. Totally unbelievable how many people were on the interestate today. Holy cow.

Anyway, we met with the GI doctor and he was very nice to us. He listened to what we had to say and did an exam of C. He took well over an hour with us. all did know there was a but coming, didn't you? But, he was not able to really offer us any more answers than what he have already received. We do have a type of plan of action which is what I requested from him but it does include some things we have already done.

So, the following is the breakdown:

1) He did not think the results from the ph probe C had were entirely accurate. He thinks that C does have some reflux. Her reflux may not be as severe but she still has some. He wants us to try the Prevacid again and see how she responds. He does not like the Reglan she was taking before and does not prescribe it at all. He says there are a lot problems with it and it can actually cause vomiting. He thinks the Prevacid will help with the vomiting and emptying. Which brings me to...

2) He thinks she may indeed have some gastric emptying issues. He would like to see a small bowel study (or flow through) test to make sure the food is actually able to go all the way to her colon with no narrowing or obstructions. This could also explain all the noises we hear her little tummy make and the pain that she has when eating.

3) He thinks we may need to try a different formula. This time one that is even more broken down than the Alimentum she is currently on. Plus, these other formulas may taste a little better than the Alimentum. Honestly, I do not think there could possibly be any thing worse than the Alimentum...this stuff smells like dirty, old sweat socks that got stuffed under the bed for months. Horrid. C is now at the age when she is really developing taste so that could be an issue.

4) He is worried about her weight gain as C is now showing a plateau or flat line on her growth chart. As long as she was tracking an upward curve it is not such a big deal (even with minimal gain) but when the curve stops going up there is a big problem. He said he would not go much past another month if C continues with her flat line and no upward curve.

5) And the main thing, he said it really depends on how aggressive we want to be. If we decide that we cannot do what we are doing anymore to feed her and/or her weight gain continues to plateau then we would need to look to do tube feedings.

Sooooooo, all in all pretty much the same stuff we have heard before. When he examined C he thought she still looked pretty good. At least he did not say to just keep doing what we are least not in so many words. And, the best thing was that he gave us his contact info and told us to call if we have any questions or would like to see him again.

Next step will be to see what C's pediatrician and cardiologist say with all this information from the second opinion. I am thinking that when we see both of them again in 2 weeks we are going to see more forward movement.

I really did not expect to have the GI doctor wave a magic wand and say yep, I can fix her but I guess I was kind of hoping we might get something more. But, at least he was very nice to us and really did want to help us.

Today was very long for all of us...12 hours...with most of that in the car. Poor little C was not exactly sure why she had to sit in her seat for so long. By the last hour she was done. Really, really done. Think we will be staying closer to home from now on :)

Thursday, March 18, 2010

March 18

One year ago today.

At 17 weeks and 3 days pregnant with my third baby, I went to Maternal Fetal Medicine for my second check-up and ultrasound (my 3rd ultrasound at this point). Having already received a very good report at my 7 week and 11 week ultrasounds I was not expecting anything unusual. I was actually thinking, gee why do I even need to be here. I have had two healthy children already and so far there is no indication that this baby is anything but healthy. Kevin went to the appointment with me because we knew there would be a really good chance we could learn the gender of the baby that day. Plus, he liked going to the ultrasound appointments with me so he could "see" the baby too.

I remember exactly what I was wearing and even how I had my hair done. I remember thinking that I would soon need to pull out my transition and maternity clothes because my regular clothes were getting way too tight. I had on a knee length denim skirt, a beige camisole and light green tshirt. I was thinking how silly of me to wear my one green shirt that fit me the day after St. Patrick's day. My hair was short and somewhat blondish looking because of highlights.

I went through the normal routine of being weighed and blood pressure checked. I returned to the waiting room and waited to be called back. When the ultrasound tech was ready we followed her back to the room. The first question she asked us was whether or not we wanted to know the gender of the baby. I was excited and said yes..if she could see it clearly. Kevin was still a little on the fence. We did not find out with the boys and waited until delivery. I was pretty adamant that I wanted to know this time because my biggest worry at that point was that I was going to have three boys and how in the world would I handle three boys.

Amazing how quickly those thoughts become so trivial.

I got on the table and the tech began doing the ultrasound. She checked immediately and told us the baby was a girl. Kevin and I were both speechless. The tech was joking about how it was very easy to see because the baby was sitting with her legs wide open. Kevin joked back that it was okay now, but by the time she was 16 she had better not still be sitting with her legs wide open. I think I even got a little teary. I was thinking, oh my goodness, my mom is going to be so thrilled...she is getting a little granddaughter. How cool is this that we are getting a little girl. She took a few pictures and put "girl" on them, including the picture with her legs spread.

She then proceeded with the ultrasound and I could just tell there was something wrong. She kept looking at the heart. The ultrasound techs are generally not allowed to say anything to you about the health of the baby because that is up to the doctors to do. However, I could sense there was something really not right. Besides looking at the heart over and over and over, she was really quiet. Way too quiet. When she left the room my heart dropped. I felt sick. I knew we were not getting good news. I just kept repeating to Kevin that the tech kept looking at the heart and that cannot be good. Kevin, being the eternal optimist, told me to quit worrying that he was sure it was nothing big.

When the doctor came in I was certain it was bad. The techs do not get the doctors in the middle of the ultrasound unless there is something really, really wrong. The doctor introduced himself and looked with the ultrasound himself. He left the room saying he would be back in a few minutes. When he returned he gave us the most horrific news. The baby we now knew would be our daughter may die even before delivery because the doctor could see several extremely severe defects. Really, really, really scary, lethal heart defects. To say that this doctor has no bedside manner is an understatement. He could not or would not really answer our questions and the only option he really gave us was termination. I literally could not move for a good 10 minutes. I wanted him to take it back. I wanted him to say that is was okay and that our daughter would be fine. Fortunately, Kevin was not as dazed as me and when he heard termination he immediately went into fight mode. There was no way we were going to terminate this pregnancy, this little girl, our daughter. We got the mfm doctor's diagnosis of aortic atresia, vsd and one other defect I can't remember now. Kevin then demanded to know where we could get a second opinion. The mfm doctor gave us the name and number of the man who changed our lives and gave us hope.

The rest of the day and night we were stunned. We honestly did not know what to do or even how to tell people. I just kept praying for it to not be real. For God to heal this tiny baby and that everything would be fine. She would be healthy. I kept thinking the doctor just did not see it correctly. My baby girl was not in the right position, she was squished up against the wall or that they could not really see her heart. However, none of that was true. The mfm doctor did see the problems. Kevin called and got me an appointment the very next week to see the fetal cardiologist in St. Pete.

When we got home we researched what the diagnosis was and realized that aortic atresia is most often lethal. Since everyone knew we had an appointment that day Kevin and I had to try and find a way to start calling people. I knew if my mom did not hear from us soon she would be tracking us down. I tried. I tried to tell her. I could not stop crying long enough to be coherent. Kevin had to tell both of our families and friends.

I remember all these details so specifically.

Over the last year I have learned more about the human heart and development in babies then I ever wanted to know. I have seen more sick babies then I have ever wanted to see. I have seen families devastated by the just delivered news that their child did not make it. I would be lying if I said that everything has been great. I was (and still am) scared pretty much all the time. I get sad every time I see my friends babies who are around the same age as C and realize what a normal healthy baby they have and that C will never be normal. I get sad all over again when I have to explain yet again that there is no cure for C and I see the understanding finally click and then I see the pity. I cannot stand being pitied.

There are days, when I am at my most lowest point, when I wonder if I should have taken the easy road. We did have the option to terminate the pregnancy. I struggled then and I struggle now with knowing that I thought about choosing that easy road. I struggled then and I struggle now with being admired for my strength and character. Most days I do not feel I deserve to be admired by all these wonderful people.

And yet, even knowing I thought about choosing the easy road, I chose to fight for my tiny unborn daughter. I wanted to find the best care, the best doctors, the best surgeon and the best hospital. I resolved to do everything I could to give my daughter the best chance once she was born.

One year ago today.

Conversation about Leprechauns with Kyle

Yesterday, the boys school was letting the kids dress down (ie no uniforms) to celebrate St. Patrick's day. So, Kevin let the boys wear and bring all kinds of silly St. Paddy's day stuff to school. The boys learned about St. Patrick and also about leprechauns. You know all the silly little tidbits we all leprechauns are really fast, and like to play tricks and leave pots of gold at the end of rainbows. I guess they also learned that leprechauns are small.

I picked the boys up from school yesterday and Kyle tells me all about his day and how he learned about all the silly things leprechauns do and that the leprechauns did silly stuff in his classroom while they were out playing. He then asks me, "mama, are leprechauns real?"

I ask him back if he is thinks Santa, Easter Bunny, etc. are real.

He says yes, he thinks they are real.

Then I say, well leprechauns are like that...they are magic just like Santa, the Easter Bunny, etc.

Kyle then says with a quite disbelieving voice, "but leprechauns are tiny and I do not think tiny people are real."

At that point I just gave up...of course after laughing.

Wednesday, March 10, 2010

The Latest and Greatest

C had another upper GI scan last Monday, March 1 (her first scan was after she was born and she was a couple days old). After this scan was done we waited to hear from the GI doctor if there were any issues and what suggestions/plan he would share with us regarding getting C to eat better.

Yea...that was a good idea in theory.

Here is the latest rundown in short form:

1. Kevin did finally speak with the GI doctor after speaking with the nurse many times. The GI doctor told us there is nothing wrong, GI wise, with C. He told Kevin that the ph probe showed no acid reflux, the gi scope showed no acid damage, the gi scope also showed no anatomical problem. The biopsies came back normal. The upper GI scan showed no issues. Ok, that is great but can you think of any other reason (besides her heart) why she is not eating well and vomiting A LOT? His response...wait for it...colic. Ummmmm, is that what you are going to go with? Colic? Are you kidding me? Yep. That is what he said. He also said that he does not think she needs to have lower GI testing and that she does not need a feeding tube. This should all be good news and in a way it is...except we still do not have an answer (which we are slowly coming to accept that we may never have an answer) but we also do not have any suggestions or a plan of action. When confronted by Kevin on why he had not taken the time to speak with us personally he pretty much said he could refer us to another GI or we could see another doctor in his group.

2. We took C to her Cardiologist yesterday, moved her normal appointment up by almost two weeks so we could address all this with him. He again reiterated that he does not think her heart is the major issue with her eating. Great. He even did another echo just to check stuff out. Asked if we would like to have a second opinion on the GI stuff. We said YES!

3. Due to my great friend SJH we are moving forward with getting an appointment with a pedi GI doctor at Shands. We will see what this doctor says and go forward....hopefully with some suggestions and/or a plan of action.

4. Saw C's Pediatrician today. Although she is tiny he is not over the top concerned yet. She is still gaining and we are being assured that her heart function is great. He is really hesitant at this point to place a feeding tube if not 100% necessary.

5. Kevin scared the crap out of me yesterday during C's echo when some fluid was found. He thought her peri-cardial effusion had returned and that could explain some of the crappy eating. Ummm no. This is why I should not listen to him sometimes...Her cardio said there is a tiny bit of fluid between her heart, diaphragm and top of lung. He said it could be anything including a little cold. He is not worried. I could have very cheerfully strangled my husband for freaking me out.

6. I did call and speak with the nurse coordinator at Children's Hospital of Philadelphia. They have a specific program for kids with C's main defect...single ventricle. However, we will be staying put with C's care, here in Florida, for the time being.

7. Went to C's second visit with feeding therapy and she is saying her issues are not behavioral. Well that's just lovely.

So, all in all I am super happy that there does not seem to be anything else wrong with C's make-up (outside of all the screwiness we already know about). However, we are still searching for answers.

Today C weighed 12pounds, 13ounces. She will be 7 months old on March 19. For all you mama's out there go pull out your baby books and you can see just how tiny C is. Her pedi said today she is "petite" and her cardio told us yesterday that there is nothing wrong with small people. I am just glad she is a girl! :)

One last thing...this is typical Carolena. She is "finding" her voice right now and babbling and screeching quite a lot. When we were waiting to see her cardio Monday I noticed that she seemed to be the only child there (with the exception of one other 2 year old) who was not just sitting sedately in their parents lap. Oh no. C is moving all around, laughing, talking, trying to get people to look at her, screeching at them when they are not paying attention, smiling at them when they do look at her. I remarked to Kevin, seriously, we have a child with half a heart and we still do not have a sedate child in our little bunch. If you know our boys at all you now how crazy wide open they are! Guess she just feels she needs to keep up...;)

Tuesday, March 2, 2010

The GI Series #5 - Back to Square One

We are very frustrated right now.

C is still not eating and is in a lot of pain. The GI doctors office has called twice and told us there is nothing wrong with C's GI track. No acid reflux, no ulcer, no acid damage, make-up is just fine and fluid and all is moving just fine. Actually the GI office has only called once. We had to call today to see if there was any info from the scan Monday. We still have not talked to the actual doctor. The nurse actually told us today that it looks like the eating issues are heart related and referred us back to her cardiologist. The whole reason we have even seen a GI doctor is because her cardiologist has said from day one that her eating issues ARE NOT heart related. There may be some minor eating issues related to her heart but not the major issues we are dealing with. We do not feel that the GI doctors are listening to us and that there is something wrong with C's make-up that is making eating miserable for her.

I contacted our pediatrician today (almost in tears) to get his help. Fortunately he is great and will help us. He is not going to let C get in a danger area, at least I don't think he will. I am beginning to loathe all these doctors. I HATE the finger pointing. And I really HATE that the GI doctors seem to be the only ones who are not on board with what we need with C. Kevin and I would love to just stop doing all we are with C. Fighting with her for every feeding. Stressing her heart with every feeding. Seeing her in pain. Hearing her crying all the time when she is eating. It is horrid. But we just will not give up on her. We will continue to do what we are because she needs to eat and we have to be the ones to make matter how much it tortures us as well.

So awesome.

I am seriously going to cry.

Right now Kevin and I are weighing our options and seriously considering taking C to CHOP (Children's Hospital of Philadelphia) or Boston Children's Hospital. Both these facilities are the best kids heart hospitals in the country. I have no idea if these are even feasible...will my insurance pay, how do we arrange travel and care of the boys at home, will we get to see the best doctors? Plus, I am out of leave at work and who knows how long we would need to be there. But, we want the best for C. We are still open to finding someone in Florida but our options are smaller with each doctor we see and cross off the list. Any suggestions would be so greatly appreciated. If anyone has any type of in with a great pediatric GI and could get us in to see them I will be eternally grateful. I am not above begging at this point. :)

Other than this latest round of crap with the GI's we are doing well. For every thing C is going through she is still the happiest little thing. She smiles at us all the time and is really laughing now. She LOVES to play and, of course, to be held. The boys are doing great and school is going so well for them. They each keep bringing home awards. Kyle is really loving gokart racing (even though it scares me silly) and Todd is doing great with Tball. We are determined to have as normal a life right now as we can and we are doing pretty well at it... at least most days :)

Thank you again for all the prayers and good thoughts being sent our way. I am so very grateful to everyone who continues to keep up with us and to all those who help us out.