Robbie's Story

Robbie was conceived 1 month after I lost a child at 18.5 weeks gestation due to incompetent cervix. I had a cerclage at 12 weeks. at 14 weeks, I was funneled to the stitch. I was on bed rest 5.5 months. I went into labor at 25 weeks, which was stopped with drugs. I had shots to mature his lungs and was made aware of the complications that are associated with a birth at 25 weeks. The Dr's said they expected him soon and wanted me prepared because babies are rarely healthy that early. I had gestational diabetes and took insulin. we approached each week as a new developmental goal and the objective was to keep him in as long as possible. I had at home monitoring with a contraction monitor and faxed results twice a day. After many scares, I had the cerclage removed at 36 weeks, and was INDUCED at 40 weeks. He wouldn't come out! He was taken by C-Sec 13 hours later. After his pedi did his first physical, The head of pediatric cardiology came to talk to me. I was devastated as soon as he introduced himself. He looked really worried too. I'll never forget this moment. He said "your son has a very large hole in his heart. 3/4's the size of his heart wall." I thought he was telling me I was going to lose another child. He said we'd wait and see what happened. but, that he would probably need surgery. I was wrecked. So was my husband. We had thought if we'd survived this pregnancy, we'd be in the clear.

We told our family, not exactly telling the seriousness of the situation. our whole family was heartbroken. Shortly after coming home, Robbie went into heart failure. we brought him to the ER, they transferred him to Yale by ambulance. He was given MANY drugs and I was taught how to administer them. we were there a week. His day started at 5 am with his first dose till his last dose at midnight. I slept him in my bed so I could watch him to make sure he kept breathing. He was good about two weeks on the meds.

One day I noticed he'd slept all day(which wasn't so unusual since he was so week. He'd only eaten 2 oz of formula all day and his breathing was weird and he was pulling at the ribs. I rushed him to the pedi, who looked scared and had me take him to the ER, they pushed us right through to NICU. They gave him oxygen, and a feeding tube, and told me to call my priest. We had a baptism for him in the hospital, which I knew was really his last rites incase something went wrong, Robbie was transferred to Yale Children’s Hospital. They remembered us when we got there. Robbie had his surgery July 17th, 2005 at seven weeks old. They found an additional hole in his heart and sewed that when they patched the other hole. I can tell you I have never seen anything as horrible as what Robbie looked like in that bed after the surgery. I was told he would be paralyzed the first night so he wouldn't hurt himself. He did, for just a second open his eyes and smile at me, like to tell me he'd be okay. He was a miracle. truly.

It was a horrible journey, but the reward is someone I could never express in mere words his meaning to me. This child saved my life and restored my faith. 4 days later he was home like nothing happened! He was a whole new kid! He was weak for a long time, but he didn't even have pain meds when he came home! He's amazing. He has had great follow ups since and now only has to be checked every three years! He is a healthy 6 year old now, He plays football and is very smart. He has some other health issues, but nothing we can’t handle. He's still a little small but within healthy limits. He'll need no additional surgeries. I tell him all the time that the Dr's fixed his heart, and he fixed mine. He is my best friend.

Robbie's superhero cape!

An EKG should never be normal for anyone,but for Robbie it is.

                                               

                       You would never know Robbie had a heart defect

CHD Awareness

Since February is finally upon us I will be sharing heart stories with my readers for as long as I have enough stories.Technically CHD Awareness week is the 7th-14th,but I am extending it to include the entire month of February. February is more than just Valentines Day.It's a month that many people in the heart community spend making people more aware of the fact that CHD's occur in 1 in every 100 children. Yet the funding for CHD's is significantly less than the funding for childhood cancers or autism. Now I am not saying that those causes are not worthy of funding, I am merely saying that CHD's need more awareness and they need more funding so that people can take them seriously.

4,000 heart babies will not live to see their first birthday. I know several of those babies myself. Including baby Rowan who was born premature with TOF and PA. He lasted only a few days. While I know his family will not be up to spreading awareness this year,maybe next year they will be ready to join the ranks of all heart parents who continue to fight for awareness for their warriors or angels.

And the frustration continues!

Went to the cardiologist today and I got nowhere. He seems to think that this fatigue & low energy could be an issue of dehydration. I had an EKG run and that showed I was in sinus rhythm. He assures me that I am not in afib so that is not what's causing the fatigue & low energy. I nearly told him that I know what afib feels like and I know my symptoms have NOTHING to do with a fib,but of course I didn't actually say that.

He wants me to increase my water intake and he had me schedule an Echo so he could make sure that there is no new structural issues with the heart. My Echo is next Thursday at 4:45pm. If nothing comes up in the Echo I have an appointment with him in 3 months.

So more tests and still nowhere closer to an answer...

I'm starting to feel like it's all in my head and I don't like that feeling. I know what I am feeling is not normal...even for a cardiac patient like me. I don't know what will happen if the Echo shows nothing and my symptoms haven't resolved in 3 months.

So I am still in limbo...

No where closer to answers

Well I played phone tag with my PCP's office all day but I finally got ahold of my PCP and what did the results say...

NEGATIVE!

The labs all came back normal. She asked if I was still feeling fatigued and I saud yes and that I was going to be talking to my Cardiologist about it tomorrow. She asked if I had any questions and I said no and then we hung up.

Now after I hung up I felt a lot of things.Relief that my labs were normal but also so frustrated. I didn't want there to be anything wrong but if there was something wrong in my labs than it wasn't cardiac related. Now I'm freaking out that it could be cardiac related. My mechanical valve is supposed to last 25-30 years and it's only been 6 1/2 so it better not be that. The other option is that it could be my pulmonary stenosis worsening. I know for a fact the worsening of Pulmonary Stenosis has fatigue as a symptom.


I am so thankful that I have my cardiology appointment tomorrow. I actually hope he schedules a cath. Of course I don't want to be in the hospital (It's gonna be a different hospital because my old hospital does not take my insurance anymore) But I also really want some answers. I need to feel better.

-Fatigue
-Low energy
-Occaisional chest pain
-Pounding heart

Those four symptoms are not fun and they have come on in the past four months.

Please pray that I get answers tomorrow at my cardiology appointment and that I am put on the road to recovery soon,whatever that road may involve.

Freaky Symptoms

In July of 2011 I was sicker than a dog. I had gastroenteritis as well as trochanteric (sp?) bursitis in my hip. Now my hips are already screwy due to the Congenital Hip Dysplasia but they usually don't cause me pain. Well with the trochanteric bursitis I experienced a LOT of pain. I was on pain pills before and after steroid shots were administered and I had pretty much no appetite for a month. I really didn't get any sleep for at least 2 weeks.

So when the new semester started in August and I was still fatigued,I assumed that it was just leftover from being sick for a month.As time went on I was still fatigued. By then I attributed the fatigue to taking 5 classes. I hoped that Winter Break would be a nice restful time where I could catch up on sleep.

Well it's now Mid January and I am still feeling fatigued in addition to a decrease in energy. I had to go to my new Primary Care doctor for a follow up (Something I had put off for awhile because I was stressed with school & then really fatigued) I told my doctor what I was feeling and then suggested that she order a CBC and a Thyroid panel. She agreed and also added B12 labs. She said that anytime someone comes in with the symptoms I am experiencing the first logical step is to run the labs that she ordered for me to check for anemia and possible thyroid issues.

Last night (or rather this morning) I woke up with a killer headache and my heart was pounding. Not racing,just pounding. I was really sweaty too (though that could be because I was under 3 blankets) It took about an hour for my pounding heart to calm down.

Hopefully the labs reveal something because I am so tired of being fatigued and having no energy. If the labs don't reveal anything I'll bring these symptoms up to my cardiologist when I go see him on the 31st and see what he suggests/advises.

A rough start to the new year

2011 was a year of changes and adjustments. New house,new friendships and most of all new oppurtunities. What I didn't expect was 2012 to start off with a bang.

My mother had been offered a job that she desperately needed and on New Years Day she found out that the job had to be eliminated to save someone else's job. So my mom is back to the drawing board in terms of finding a job.Of course it is difficult because the job market is so crappy right now.
 She's cranking out those resumes and doing everything she possibly can to make sure that she gets interviews.

Then on Friday morning my mother woke me up at about 9ish and informed me that my uncle (who I am incredibly close to) had been robbed at gunpoint while at work the night before (Thursday) He's all right physically,but emotionally he's still a mess. The dr has diagnosed him with PTSD and he goes in to see his dr again on Monday.

The relationship I have with my uncle is a very close one. He's the one who stayed nights with me at the hospital so that my mom and grandma could get some rest. He is the only man that has been there for me through everything. He and I are very much the same in a lot of ways and I know that his family means everything to him.

We went out to dinner last night for my grandma's husband's birthday but I could tell that everyone's minds were elsewhere. It just didn't feel right to me to celebrate a birthday with everything else that had gone on.

The only good thing about this year so far is that my kitten Prince was tested for Feline Leukemia for a 3rd time at the vet's yesterday and it came back negative. We were thrilled and we were told that they'd never have to run that test again.


2012 can only improve from here....right?

Wow,it's been too long

Well several things have gone on since I last posted. First things first,I adopted a purebred Bengal kitten from a rescue group. Or what I thought was a rescue group. We were assured that he was 11 weeks old and was in good health and was up to date on his shots...Well that's not true.He had a list of issues when we took him to the vet two days after he came home with us and he was maybe six weeks old. He is doing well now and we are anxiously waiting on the next Feline Leukemia test. He's tested a weak positive the first 2 times.So we are going to do it once more and if it's still a weak positive,we'll treat him as a Leukemic kitten.

Here he was on the first day.

Then in September I went to the 2011 Heart Walk and I got to meet one of the most wonderful ladies in the world. I also got to see an old friend of mine who I haven't seen in a few years.

Katie Davis and I. Her beautiful daughter Olivia passed away this past Easter.She had HLHS.

Jami and myself. Jami is a wonderful friend who I really don't see often enough.


The other bit of news is that I've decided to go into teaching. More specifically I want to teach preschool. One of the best things about that is that I am already very close to being able to apply for my teaching permit. The other awesome thing is that this means no more math! Math is my Achillies heel. I I was a mathmetician I could have gone to med school because all of my other grades hgave always been good.

Hopefully it won't be another 3 months before I update the blog next time.