Growing up with CHD/CHF......Part 1.

is hard.

When i was a baby i was always in and out of the hospital with surgeries or just because i was sick. Growing up my parents tried to have me lead as 'normal' a childhood as possible. Although, i do know that 'normal' is a relative word, because what may be 'normal' to one may be 'abnormal' to another. I played sports, was in music, went to public school and had friends. But during all of this there were random stints of time where i wouldn't be able to show up to school; anywhere from a week, to several months. In 2nd grade i missed the whole month of February because i caught Triple Pneumonia. Yes. Triple. That was no fun at all, but i did learn that the PICU has a really great Play room for Patients.Growing up a lot of my friends didn't really know why i would randomly miss school. That was until i got to Junior High and P.E. became an everyday thing....

a photo of a heart during open heart surgery.

When in 7th grade i had to start 'actively' partaking in P.E. I was given a really good teacher that knew i could only do what my body would allow, so if i didn't run the mile; i didn't run the stupid mile. In August of 1998, right before i started 8th grade; i became severely ill. My folks didn't really know what was wrong with me, after a day or two of crazy fever and everything they took me into the docs for an appointment. I remember this day vividly.  We went into the doctors office, i was fairly lethargic....i looked pale....and just really felt like shit. The doctor weighed me and i clocked in at about 80 lbs....that's right, 80 lbs at 13. I was previously about 100. This was just the general clinic so they didn't have an Echocardiogram Machine or anything. But they did have an EKG, he took my EKG and did a few more exams on me. When he completed he looked up at us while grabbing for his phone and told my mom to take me to the ER and that he was calling a head to let them know.....

We got to the hospital and a billion other tests were performed on me. A CT. MRI. MRA. Echo. EKG. STATS. Everything. I was hospitalized for 2 weeks. In the end they diagnosed me with Endocarditis. Inflammation of the Muscle lining on the Heart. And what do i owe the great pleasure of this diagnosis? None other than the Dentist. Yep. That's right. The Dentist. I was already Petrified of this Jackass; but now i have even more reason to run and hide from any mention of the 'D-Word'.....

2 weeks after i was initially admitted to the hospital i was discharged to go home. But it was not that simple. I was going to be on an out patient care program. They sent me home with a Home IV....usually they try to do a home IV the same as an IV at a hospital, through the forearm. This is when we first realized i might have a neurological problem, called Neuraliga; as well. ( Yay me right?) Because when they placed the pick-line in my forearm my whole nervous system went psychotic and basically spit the IV line out of my arm, onto the floor. So in the end i had to go under and have an IV surgically placed into my heart.

It was kind of like a port. I had to wear a fanny pack type contraption to hold the IV medication bags, which was Amoxicillin and Potassium; otherwise known as Banana Bags. On top of the IV medication bags that i had to carry around with me, i also had these medicine balls that i had to hook up to my IV port a couple of times a day with Gentamiacin. Let me tell you; that has to be the worst medication i have ever received. Both Intravenously and Intramuscularly. This medicine had to be kept in the freezer to preserve the antibiotics and protiens. And it BURNS like all HELL when administered. A nurse came to my home a couple of times a week to check on me and help change the dressings on my IV port site. A teacher from my school also came a couple of times a week to teach me my lessons as well as give/ collect homework. It had to be the most boring couple of months in my life. On top of having that IV bag and Fridge and Freezer full of medications i had to carry around needleless syringes pre-stocked with Saline to flush the IV as need in case of back flow.

Yes, back flow. Because if i got to active blood with shoot out of my heart muscle and fill up my IV line. Let me tell you, the first time i had to flush my line i was petrified. My hands were shaking so much that to this day i don't even know how i was able to fit it into the IV port to clear the line. To this day ANY type of syringe makes me cringe. Just hearing the medication Gentamiacin being said makes my spine tingle....it is that bad. I was so sheltered and lonely during this time. I had family of course, but not many friends.

This my mom saw, so 2 months after my diagnosis was my birthday and my mom thought it'd be god for me to throw a surprise birthday party. I was very shocked when i came home from spending the day with my dad to see all of my friends at the house to party. My mom even let the party last hours longer that she usually would have. But part of me was un easy about it. I wasn't sure what to do during the party, for fear of the IV....to be honest at the time it kind of sucked. But i know why she did it.....she wanted to see me happy again.

A week or so after the party i was able to go back into the hospital to have the IV port surgically removed. Which left me with 3 circular scars on the right side of my chest....weird; i know! I was able to go back to school once Halloween passed....little did we know that would be the last of our cardiac issues.......

Sometimes....

i wish i was actually able to go out. I hate this shit. I don't get to fucking do anything. And what infuriates me even more are the Parents that DO get to go out. It's bull. I never get to see anybody. I never get to hang out at 'parties' or shows. Nothing. Science Forbid i bring Izzy with me!!! I Love my friends, but honestly i don't think that they understand. Well they understand some things, but what i don't like is constantly talking to me about a party or get together and then turning around and asking me to find a babysitter for Izzy. Knowing full well that there is NOBODY to watch her. Why hurt me like that? Common People, you know that i don't have a babysitter for her, so if you don't want us to come then don't mention it to us at the beginning. It really bugs me. I was really looking forward to getting out and seeing people, alas i'm stuck at home because "They'd prefer it to be child free". I understand that my Childless friends would want to have their get togethers' child free, but don't invite me if that's the way you want your party to be. You know i can't do anything about it, well other than making Donald stay home from work to babysit so that i could go out. I LOVE my BFF, but this has irritated me beyond belief. She has every right to say who can and can't come to her soire, but just don't invite the people that it will effect. I hate not having childcare. I hate not being able to see people. Or Hang out. Or anything.

I know this is selfish sounding, but sometimes i think back to would i have been happier just Bottle Feeding my children and being able to be a care free 'mom'? Eh, probably not. I'd feel horrible knowing that i was giving my child inferior 'food' that costs so much money, which if i did bottle feed i probably wouldn't be able to afford going out.LOL. That would be selfish .It makes me mad, Nobody will watch my daughter because i Nurse her and she's uncomfortable around people she isn't used to. NEWS FLASH!!! She isn't uncomfortable around people because i nurse her, she's uncomfortable because she doesn't know who the fuck you are! Isn't that a good thing? I'm ecstatic that my children wont go to 'Just Anyone'. Do you know how freaked out and paranoid that'd make me?! But what i hate is that during the first year of life, THE MOST CRUCIAL, nobody in my family so much as volunteered to help me out and babysit or at least come around more often so that the kids are used to them and willing to stay with them while Donald and I are not. I feel like i'm being punished for making the best choices for my family.

My SIL (husbands side) and my Sis are able to go out and do whatever they want because the Bottle Feed, oh! and because they don't know how to get a job or anything so they live off of mom. So of course the child would be used to other people, right? ARRGH! I hate feeling like this. I'm really afraid that this nursing thing and lack of support from my family is going to drive me nuts. i LOVE Nursing my daughter, i would just like it if somebody; my family perhaps, would help me out and give me a break now and then! My health isn't the best and it doesn't seem like anybody really cares. Well at least not until they get in trouble of their lack of caring and big mouth! (a few wks back my SIL (brothers wife) gave me attitude about my daughter crying at a birthday party because my Bro was holding her, mind you she doesn't see them that often so what do they expect. And NO they don't live far away; maybe 15 minutes. Anyways he chewed her out and NOW she wants to try and help.Fuck that. Hell No.)

Anyways back on topic, i just feel that because i chose to be a real parent and do what i'm supposed to; Bf/AP, i'm being punished and kept out. It's ridiculous. There needs to be more support and understanding. And that's something i definitely do not receive much of. It's saddening. It's causing me anxiety, depression, and resentment towards my own children because i don't get a break. Other say, oh Let your husband watch the kids while you go out. Well here's the thing; he works 6 days a week and only gets one day off a week. That's the only time i get to spend with him, why would i want to go out then? Why can't anybody help?! Yes i breast feed my 14 1/2 month old daughter! No i don't CIO! Yes, i actually interact and play with my children and help them grow! Yes i partially co-sleep (she starts off in her crib and when she wakes for her night feeding she comes to bed with me)! Yes i carry my daughter when she wants it! I do babywear more than Stroller! o0o0o i guess that means i'm a crazy ass hippie!!

All of these are basically the reasoning behind be not being able to do anything. I can't go to school, i can't work, i can't go out. All because of people inabilities to wake up and help me out. I will not change the way that i parent. I do not want my children to be raised by a babysitter (both figuratively speaking and actually speaking......my SIL(husbands side) is basically the babysitter to her own daughter)......i want my children to have the best that they can, and i give them all that i can. All that i ask in return is for a little help. But i really don't see that coming anytime soon. I even have the people that used to be supportive of my parenting techniques suddenly changing sides because my daughter is no longer an infant! Ridiculous!Absurd! I know usually i would say 'stay away from people like that.' but how am i supposed to stay away from family? I've thought about it. But it'll just backfire on me like everything else usually does.

Well i have my surgery in less than 48 hrs.....I wonder if my daughter will end up self weaning during this time, part of me wouldn't mind, but a part of me would be really sad. Lame, i know.I know my husband will be able to take care of the kids while i'm having the surgery and while i am hospitalized. I just hope somebody will be willing to help me out later in the week while he has to work, and not because their husband chewed them out! Which, i highly doubt will happen. Well that's life i guess. I'll perservere, i always do. Science forbid i ask for help, right?

As Time Goes By...

I've come to realize who my real friends are and what it is that i truly need and don't need in my life. And Drama is definitely one of the things that i don't need. I love that i have been able to cut out the negative people in my life over the past few years, and just keep the close drama-free friends in my circle. It's been somewhat awkward at certain instances but rather pleasant at others. I know that it sounds like i am just rambling on, but whatever.

I have also come to realize how to properly organize my time in life and to give attention where and when needed. But i have also come to learn throughout the more recent years of Mother Hood that in order to be a good Mother and Wife i have to be secure with myself, have time to myself; because a stressed out Mommy or Wife leads a stressed out household. This past year has been a very eye-opening year, initially with Donald and the loss of his job right during the impending time before Isabellas' birth. His unemployment lasted all the way until she was 5 mons old!! It was a hectic, trying time for us as a family but still we persevered.

I Love being a Mom, i think i never realized how much of a full-time job it is until i actually became one. Right now that is all i do and sometimes i truly do want a vacation. I think it's because when Skylair was Isabellas' age i was working and everything and even when he was an infant i was going to school and just doing so much more. I felt like i had a life outside of being a mother. Now since i've had Isabella i haven't done either. I've strictly been a Stay-at-home mom (SAHM) which is nice because i just have to take care of the house hold and not a million other things, but on the other side i liked working and going to school, it gave me time with other people outside of my family.

You know, it kind of feels odd that it is now 2010 and that my Little Boy will be 4 years old in just 4 months, and that my Little Girl is already 1 Year Old. I can't believe how fast the time has flown. Sometimes i can still remember the most random things from high school or growing up as if it was yesterday. It's kind of sad. haha.

I have come to learn that i do need a break as well. I don't get that too often and i totally miss the times i had to be able to go out and see friends without always having to bring the kid/s along. With Skylair since i went back to school and work when he was young he was used to going over to grandmas house on the weekends because of the time i got out of work or class was so late and that gave me the peace and quiet down time that i truly believe EVERY MOTHER NEEDS.  Now with Isabella it has been the exact opposite, and it has even turned Skylair into a once Super Independent little boy into quiet a Separation Anxiety King. And due to his separation anxiety Donald and i haven't had a single date night since JUNE!! At least with Isabella being home with us it was easier to ring her along to diner and just have her sleep, unlike Skylair where he's so smart and curious he doesn't even let us talk to EACH OTHER half the time.

I would LOVE, and i mean absolutely LOVE to have a date night/ 18 hr period just where it's Donald and Me time. Without the kids. Is that too much to ask? I truly believe that has been part of what's fueled my somewhat depression this year. I believe that if i get out and go back to school, and maybe get some time Alone with my Husband and with friends then it will go away. I had it slightly when Skylair was an itty bitty infant, but i feel like it's stronger and deeper this time around. I don't really feel that it ties into Post-Partum Depression per-se, but it could've definitely stemmed from that.

Does ANYBODY have ANY advice for me? i have gone through the parenting site and mommy connection sites for what feels like a bajillion times and to no avail i don't know what to do. And that's mainly stemming from my childrens' Separation Anxiety Issues. I know it'll be hard for Donald and i to get a date night anytime soon because of his new job, but quiet mommy time with the kids safely at grandmas would be GREAT!