Wednesday, July 28, 2010


That is about all I got.

C did have appointments with the allergist and her cardiologist yesterday. Poor Kevin was gone He left our house at 8am and he did not even see the cardiologist until 5pm. Ugh. Then a 2 hour drive home. He said C was an angel all day and he did get to experience a first with her that he would not have ordinarily been able to see since he is never with her during the day. Yesterday, our big girl finally figured out how to get to a sitting position all by herself. And daddy got to be the very first one to see her do it. Yay!

So, here is the rundown. The allergist tested for the biggest, most common allergens. Milk, soy, wheat, rice, egg yolk, egg white, corn and a few others. She is sensitive to the milk, rice and corn. Ordinarily the doctor would recommend removing these items from her diet but there are several factors to consider: 1) she could be showing sensitivity since the majority of her diet comes from these three things, 2) cost, as the formulas with no milk/soy are really expensive and may not be necessary (see point #1) and 3) we do not want to go upsetting her entire diet all over again. The doctor gave us a prescription for allergy meds to try. He would like to try and control whatever sensitivity she has with these foods (and possibly others) with a medication versus going through the whole process of revamping her diet again. He also does not think she is necessarily allergic to the penicillin antibiotics either but did give us a script for some testing the next time she has a blood draw.

C's cardiologist was super happy with her progress. He actually does not want to see her back for 3 months. I think this will be the longest we will go without seeing a cardiologist since we found out about C's heart when I was 17 weeks pregnant. He was estactic with her mental and physical development and her gross/fine motor skills. Although she did not gain as much weight from last week to this week she has put on almost 2 pounds since this cardiologist last saw her 4 weeks ago. He was very happy with that. As far as the vomiting goes, we are back to GI. Not too sure what we are going to do but will see about maybe tweaking her GI meds for reflux. And I absolutely will not be taking her off her antibiotics again after the cardiologist told Kevin that she could die within 3 hours of getting an infection without having the added protection of the antibiotics. Well. There you go. We can try and switch the antibiotics if I still feel there is an issue but will stay on some form of penicillin as this is the best one to fight the germs they do not want C catching. This also leads to our continued crack down and general hand's off approach with visitors and germs. Which is sad because C gets held by only 3 people. I feel bad for her because she just is not able to get all the loving, hugging and kissing like other babies. But, she is super happy to see other people so that will have to be enough for now.

Overall she is doing great. Her right eye is all red and gunky again which worries me but could be as simple as blocked tear duct. The issues we are seeing now are more for her pediatrician, more general baby stuff. Sometimes it is hard to distinguish.

Still trying to figure out all the stuff for C's birthday. I will be getting invitations out (I am hoping that if I keep saying it, then I will actually get them done). Other than that, we should have a few months break from all the doctors visits. Just need C to cooperate and all will be good.

Friday, July 23, 2010

2nd Verse, Same as the 1st

We really thought we we clear. We thought C had turned the corner. We were actually past excited and into complacency.

Oh how wrong we were. So very, very, very wrong.

C started vomiting again. Lots and lots of vomiting. She tricked us into thinking she was over this nasty puking thing and that she really, really liked and wanted to eat, not just her solid (baby) foods but her formula as well. And from a bottle. A real bottle.

Again, so very, very wrong.

End of June, going into July C decided she just did not want to eat anymore. She refused bottles and then refused her solids as well. Frustration does not even begin to describe the overwhelming emotions pouring from me and Kevin. Just the week before we got the all clear, thumbs up from not one but two separate cardiologists. C looked great, her heart function was great, her arrhythmia in check, she was starting to slowly come up on her oxygen saturation level. She was gaining weight. We were encouraged.

And then she stopped eating.

And then she started vomiting everything we put down her.


We have seen cardiology 3 (yes 3) more times. Just to keep things interesting (and us on the verge of losing our collective jobs, not really, but only because we have awesome bosses) C has also been to the GI doctor, the pulmonologist and her pediatrician. All in the last 3 weeks. Yes, that is as many doctors appointments and days out of work as you think.

Can you guess what the collective answer has been from all these great minds...what for it...reflux.

No, I am not kidding.

How do you combine stress, anger, frustration and just in general pissed-offidness into one solid emotion? If you figure it out let me know because that is where we are.

Poor C just soldiers right through with a big ole goofy smile on her face. She is truly one happy baby. Us, not so much. We no longer give her bottles at all. She gets all her fluids through her tube. So much for using the tube for only supplemental feeding. We have been given a goal of 900 calories per day for her (approx 25% more than what a normal baby consumes at this stage). I cannot even tell you how lovely that has been trying to figure out just how in the world I am going to get this poor baby to eat 900 calories. Finally have it all figured out but the vomiting is still our enemy.

Not too sure what will happen from here. C's one cardiologist mentioned having to do another heart cath if she continues the vomiting. The major risk for her is aspiration. If she aspirates, she dies. Therefore, we really want to get the vomiting in check. Not too mention that she is losing all those vital calories she needs to thrive. Heartwise, C is doing very well right now. I still really think she is having an adverse reaction to her antibiotics. I have changed the form of her amoxicillian, she gets half a tab crushed up now versus the liquid suspension but she still vomits. When I took her off the amoxicillian for 2 weeks she still vomited but much less. When I mention the antibiotics being an issue all the doctors look at me as if I have grown 2 heads. Each one continues to tell me that the antibiotics are not the problem. C will be going back to cardiology this coming Tuesday. She is also seeing the allergist again for testing. Between these two appointments I am really hoping we can come up with some solution for her vomiting because really, the GI doctor, not so much help.

Yet, in the midst of all this, C is progressing beautifully development wise. She is sitting all by herself. Up on her hands and knees and rocking (crawling is thisclose). She laughs, claps, rolls over, scoots around, starting to pull up to standing, sleeps very well, says mama and dada in connection to me and Kevin and in generall looks and acts just like a normal baby. I know my biggest frustration comes from us truly being thisclose to a more normal life. I'm pretty sure most of my negativity today is coming from the inescapable vomit smell coming from my clothes (as C puked all over me at work, formula and yogurt...such a lovely eau de parfume) and my total lack of sleep. C still gets one of her anti-arrhythmia meds every 6 hours so I get up at 12:30 each night to give it to her (and her monitor and feeding pump continue to alarm). I asked Kevin the other day if he thought my insurance would finally cover at home help for us, just to give us a break at night...maybe if I pretended I was crazy they would listen more :)

Sorry I have not posted more pictures but I did post some on FB yesterday. Right now we are in party planning mode and of course you are all invited. C will turn 1 on August 19 and Kyle will be 7 (yes, 7) on September 3. Parties back to back, wooo hooo!

Thanks so much for all your good thoughts, positive energy and prayers!

Tuesday, July 6, 2010

A Little Bit of Levity

My daughter has complex and complicated congenital heart defects with the added bonus of heterotaxy, upper gi malrotation and aspleenia.

For those who are curious the following is what she has:

Structural Defects -

1) Single Ventricle (HLHS - Hypoplastic Left Heart Syndrome variant)
2) DORV - Double Outlet Right Ventricle
3) TGA - Transposition of the Great Arteries
4) TAPVR - Total Annomalous Pulmonary Veinous Return
5) PS - Pulmonary Stenosis (which as of her latest surgery is now technically PA, pulmonary atresia)
6) MA- Mitral Atresia

Electrical Defects -
1) Atrial Flutter - also due to her last surgery

She has had two open heart surgeries, yet not what she was expected to have. She did not need to have an early surgery, actually bypassing the need for a Norwood or even a shunt/banding procedure. She went straight to her Glenn and TAPVR repair at just under 4 months of age. Her second heart surgery was at 9 months of age when her cardiologists detected what they thought was scar tissue but was actually membrane growing around the previous surgery site, causing her head and upper body to swell and fluid collection because her pulmonary veins were obstructed. She has had two heart caths and one abdominal surgery with her LADD procedure to correct the malrotation and an endoscopically placed g feeding tube. She has greater risk for infection because she has no spleen. And yet she has spent far more time at home than in the hospital.

But, she will die because of her CHD's.

I completely understand the issues with my daughter's heart. I know she will never be cured or fixed. She will have to undergo several risky open heart surgeries. She will have to endure numerous heart caths. She will have to sit through endless heart echo's, ekg's and cardiology visits. She will have eating issues forever. She will run the risk of further complications as she gets older and bigger and undergoes more surgeries. She will never be completely normal.

I am steeped in the reality of what my daughter's life will be medically.

I have recently spent a lot of time reading other CHD families blogs, as well as the conglomerate CHD blogs in an effort to find the right extended support system for me. My family and friends are unbelievably supportive but they have a hard time relating to all of what I feel. I was really hoping to connect to other families who are going through similar issues but I have come to the conclusion that I just don't fit in with all the other CHD parents.

Early on, I resisted reading other children's stories and talking to other parents because I was not emotionally in a place where I could handle other people's grief, fear and anxiety. Even more so, frankly I did not want to get in a competitive parenting dialogue about how their children's CHD's were so much worse and how their experience was so much worse. Believe it or not, I have seen this happen. I think it is just human nature. However, I decided to give this support group networking a try. I still have hard time with this some days but I make an effort so I can try and understand what may be in store for us. Kevin is much better than me. He is the one who talks to people and listens to their stories.

I have heard lots of stories now. Some with great results and other stories ending in heart breaking sadness.

I have wanted to connect and share C's story because when I went looking for stories there were very few that offered any hope. Again, I appreciate the reality of C's situation. I guess what I was looking for were stories that had positive undertones throughout the grief, fear and anxiety. Stories of families who have the same wants for their children as I do.

I have several wants for C. Several things I pray for daily.

The main one is that no matter what happens, I do not want C to suffer. I do not want her to be in pain, feeling miserable and scared. When C is called to Heaven I want there to be peace and no pain for her. I want her to be home with us, in her comfy pj's, in her comfy home with her family and no doctors, no nurses, no one to interrupt or make her look at the door in fear.

The second want I have for C is for her to spend as much time at home with us as possible. I have absolutely no desire or need to spend any more time in the hospital than absolutely necessary. I want C to spend all her holidays at home. I want her days at home to far, far outnumber her days in the hospital. I am very grateful for all of the doctors and nurses who provided outstanding care for C but I really have no need to have daily affirmation from them that I am providing the best care for my daughter. I do not need to be best friends with the nurses who took care of C in the hospital. I prefer to be on friendly terms and share updates and pictures when C hits milestones, not have a daily dialogue with medical personnel.

My third want for C is that she know far more people who have no idea about complex CHD's. I want to be able to surround her with people who will not pity her or coddle her just because she has the bad luck of the draw to be born with a broken heart. To quote my dear family friend Carrie, I do not want to raise C as a "cardiac cripple." I want her to know far more "normal" people than medical personnel. I do not want her to fear going to all the doctors she must go to but I also do not want them to be her "best friends." I want C to be as normal as possible and I just do not see that happening if she is constantly surrounded by medical personnel.

I wake up every morning with trepidation for what the day will bring. I wonder if today will be the day that we are hit with a new surprise with C's condition. Will today be the day we hear the words heart failure. Will today be one of the worst days of our lives.

In order to get out of bed every morning, instead of laying there with the covers pulled over my head wishing I could stay in my dreamland where babies do not have CHD's, I choose to add levity to my life. I make jokes or silly comments not in an effort to down play the severity of C's issues or appear to be a moron or to be offensive but because if I did not laugh at some of the absurdity I would absolutely never leave my bed.

Which of course has led me to think I just don't fit in with the other CHD parents.

I am trying my best to live each day. Not just exist or survive, but to actually live without the fear of what will happen next with C. I get side tracked a lot. Just talk to my husband or my boys when I am having a bad day. But, my main purpose in finding an external support system was to hopefully share some of this levity. I constantly feel as though I am stuck in limbo. I have a daughter who for all intents and purposes should not be alive. She has already beaten so many odds and statistics. However, we get treated as if she has nothing more than a hole in her heart that can be fixed with a surgery and we move on. There is no happy ending for C so we must make our happy now, every day.

I will continue to post about C's story, mostly as a record for me and my family. I am not going to feel guilty for the comments I make or the things I say. I will not feel bad for ranting and raving about having a bad day with C when everyone else tells me how grateful I should be she is alive and with me. Trust me, I know first hand how lucky we are to have C with us and doing so well. I absolutely believe that all of the prayers being said for her are working because really there is no medical reason why she has done as well as she had. I will make my life work the best I can with really living and a little bit of levity.