HappyMom4Life's Blog

Alyssa now

happymom4life — Thu, 10 Feb 2011 05:26:12 +0000

My “In Time”

happymom4life — Thu, 10 Feb 2011 04:33:38 +0000

Almost a year later and I can still not write down the details of Alyssa’s surgery and stay at the hospital. Everytime I try to write it all out I get vivid images of Alyssa laying on the table hooked to the tree of drugs and I break down. I believe we handled ourselves well and the overall experience was what it was supposed to be. I just choose to not try to relive it, especially because she is doing so well now. So instead I will be sharing some photos so those that may stumble upon this blog can become aware of what they may see and what to prepare for. (as if there really is a way to prepare to see your child have
To go thru open heart surgery). Alyssa is now almost 15 months old and she is walking all over the place, she is thriving and 19lbs, and she is laughing and smiling all of the time. She hasn’t yet said any words and the dr’s told us that it may be a possibility that she would be a little behind the curve so today we called to try to get Alyssa into speech therapy. Overall, we couldn’t be more proud of our Alyssa Roze! We are very blessed.

In time….

happymom4life — Wed, 07 Apr 2010 18:22:38 +0000

I promise that I will update this blog with Alyssa’s surgery info!!! I have been so busy taking care of her and part of me has been dreading re-living the whole experience – but I will at some point write it all out.

For now, Alyssa is doing great! She is getting over a cold (which after surgery can be scary), but she is still smiling and cooing and overall just such a happy baby.

Her surgery went better than expected, and Alyssa amazed us all with a speedy exit out of the hospital to heal at home.

Is this really happening?

happymom4life — Thu, 04 Mar 2010 06:18:31 +0000

So much has happened in such a short about of time….
Feb 13th we celebrated Alyssa with a 1 in 100 party joined by family. We also tried to make it informative so we had a question answer period which I really appreciated everyone participating in because they got to learn more about CHDs as well as Alyssa’s specific heart defect.
Feb 16th was by far a day that I will never forget. Alyssa had her first real tet spell. She cried for close to 40 mins and turned completely blue. I was panicked! I called my daughters cardiologist but he was out of office and the woman advised me if she turns blue again go straight to the Emergency Room. I turned to Twitter for help, I was a mess, should I wait until she turned blue again or should I go just to be safe. I packed Alyssa and Devin into the car and started driving to my Aunts house just because I didn’t want to be alone. No one was home. So then I drive over to my hubbys work, when I got there his store was slammed. So then I proceeded to the hospital and sat in the parking lot. Alyssa was sound asleep. I kept questioning if I should wake her or not but decided to let her sleep. Eventually we made it back home, but I refused to take Alyssa out of the car seat until my husband got home. When he got home he noticed right away that she was more “blue” than normal. Alyssa had no more fits and seemed to be ok.
Feb 18th was Alyssa’s appt for her echo (also the day before my official return to work date). I explained what had transpired the two days prior and asked if at all possible we could test her pulse ox. She was at 84. Then we proceeded with the echo. The lady doing the echo was great with Alyssa. She let me crawl up on the table and comfort her while she proceeded with the scan of her heart. Everything seemed to be going fine, but also very long. Then all of a sudden I am watching her do the same thing over and over and taking measurements each time. I asked her what it was that I was looking at, and she advised me that it is what measures the Amt of stress on the heart. It looked rather large, so of course me being the worried mom I asked how Alyssa’s looked. She was very honest with me and told me that it was very high, and normally when it’s high like that there is a “chance” that surgery may be moved up. If it stays consistant it may be just fine but chances are she will just get worse.
Feb 26th I took Alyssa in for her Synagis shot at her pediatricians office. They weighed her … And I was sooo excited to hear 8lbs 12oz!!! I was convinced that since I returned to work bc of her weight gain she must be doing really well. So much so I even texted my boss bc I was so excited. It felt great getting back to work, and with her gaining weight better than she had been it was like icing on the cake.
Feb 27th was the 1st annual CHD awareness walk for It’s My Heart organization in which Courtney, Dominque and her beautiful children accompanied me to Fresno(3 hrs away) to walk in the rain in support of Alyssa. It meant a great deal that even in the rain I had people who cared by my side. And Amy from flowerzinherhair.com was there in spirit. She had Alyssa’s shirt on and I was wearing a bow from her heart babies collection. We tried to communicate with her throughout our day.
March 2nd was Alyssa’s follow up appt. for the cardiologist. We were supposed to recieve the results of the echo and just have a normal appt. Alyssa got her EKG, and this time it was so quick. They hooked her all up, and everything worked like it was supposed to and out shot a one page reading in which both ladies doing the EKG said perfect. Well PERFECT was mis-interpreted by me! I heard perfect and immediately thought that the reading on the EKG looked good. WRONG!!! In comes the cardiologist more serious than he had ever been before. I smile and tell him of a new found friend saying to say hello. Then not even seconds later we begin to discuss her recent tet spell and that we will need to begin a blood pressure medicine right away and that it will need to be given every 6 hours and that the surgery needs to moved up to this month and will have to be done before month end. He said something about the velocity of her heart…(I wish my brain had a record button). He would be meeting with the surgeons and having a conference the following day to discuss Alyssa and after that we should get more details. More than likely we would get more information in two days. As we were leaving I felt as though I had my heart ripped out of my own chest and I felt absolutely helpless. I broke down as we were leaving and all the women immediately came to comfort me as did my husband. I mean I was there during her echo… But I though if anything they may be moving Alyssa’s surgery up 1 month not 4 or 5 months!!! So as I tried to gain what composure I could Chris and I went towards target bc we needed more formula. He was hungry, I knew I couldn’t eat, I felt nauseas as soon as I left the cardiologists office. He grabbed some food for him and Devin while I sat in the car and called my family. I had already called my boss, she was 1st bc I felt as though I owed it to her bc I just returned back to work only a couple of weeks ago. This came out of left field for us, and being a manager I felt as though I was letting my team down by coming back and possibly having to leave again so soon. Well after calls were made and Chris and Devin ate we made it into target. I really did buy a bottle of wine… It said relax… I was sold. For any of those that trully know me… After becoming a mom I rarely drink. You finding a 4 leaf clover would happen more often than I drink. While in line, I feel very closterphobic, too many people too close to Alyssa and this Lil mutt (yes a dog – which I am normally an animal lover) that won’t shut his trap with unrully kids with no supervision of their parents. I think I am about to snap… I say out loud “I am going to scream”. This poor lady behind me whom I was totally in her way was almost to scared to ask me to timidly move out of her way. That’s when my husband sees that all my ducks are not in a row and comforts me. We check out then head off to go get Alyssa a pulse ox so we can test her if need be. Chris got a call explaining that on Monday we would be meeting with Alyssa’s surgeon and shortly after an email to confirm and with what to expect. Ie. Expect to be there 2 hours for an echo and ekg etc. Then with both kids in the car we head to walgreens to fill Alyssa’s presciption. Let’s just say the gentleman(prob. The 1st time anyone has called him that) who helped(using that word loosely) us stated her prescription would need to be ordered and that the didn’t carry it. We had no problem with that as Alyssa’s cardiologist told us more than likely that would be the case. And if so, he wanted them to give us an adult pill that would be crushed and mixed with water so she could get something into her that night. The “gentleman” decided that he was not making any effort to reach out to the dr to confirm what was needed. So I called the cardiologist and had requested that they call walgreens so we could get the help we needed. They of course did so immediately. Come to find out later the walgreens we went to just couldn’t help us – so after we called to try to figure out what was going on we were told that her prescription would be ready after 7 at a different pharmacy. My in-laws came over and watched the kids and Chris and I went to pick up her prescription…and the plan was to try to go to a sit down resturant and relax for a dinner. I knew still there was no way I could eat. As we were leaving walgreens I didn’t even make it to the car. I got sick. Yup right outside of walgreens in the pouring rain… Then again on the way home. Chris had to pull over. No nice dinner for us. We got home and I litterly went straight to bed and pulled the covers over my head. I needed complete darkness and just wanted to be left alone.
Mar 3rd as I was leaving my manager meeting I was checking my messages and responding back to emails. My husband had called and told me that Alyssa would be having her surgery Tuesday. TUESDAY??? As in this Tuesday!?! Omg I need to gain composure call my boss and let her know. I need to be strong and go into work and try to be my happy go lucky self all while trying to swallow this big pill. So as it stands Alyssa will be having her surgery in less than a week. I am ok for 1 min. then a nervous wreck the next. I am overwhelemed, I’m paniced, I’m sad, I’m worried, I’m FREAKING out!!! I am a ball of all sorts of emotions. It’s not as if I didn’t know the surgery was inevitable, or that Alyssa would be better without the surgery. I know that without the surgery Alyssa would not survive. I just wasn’t expecting everything to happen so suddenly.

If you pray please pray for Alyssa, or take a moment and think and send positive thoughts as I know this will help her get through all of this. Thank you.

Below are some pictures over the last few weeks…

The Heart Babies Collection

happymom4life — Mon, 08 Feb 2010 03:06:19 +0000

If any of you read my last post you know that I recieved an e-mail that was by far the best e-mail I have ever recieved. Amy who us the proud owner and CEO of flowerzinherhair.com is doing the unthinkable for our family. She is donating 100% profits from the orders she recieved from the new Heart Babies Collection to help with Alyssa’s medical expenses. I don’t know how to ever really thank Amy and her family for this gracious gift. Our family is in awe and greatly appreciates everything they are doing. Her family is now apart of our family and we will always hold a special place in our hearts for them. I have to take a moment to thank my friend Courtney for introducing me to Amy through Twitter and her beautiful website. After I got to bring Alyssa home I desperately wanted to put a pretty little bow in her beautiful hair. However, all of the bows and headbands were just way to big for her. Amy came to my rescue. She had preemie headbands with interchangeable bows and flowers. I fell in love with everything on her site and it gives me such joy to see Alyssa in Amy’s beautiful hair accessories. And with the wonderful prices of the bows/flowers I now have quite the collection. I later found out that Amy was also a heart mom. She offered her support and told me she was there for me and was willing to share her story. Amy is by far one of the most amazing people that I have ever met. I would greatly appreciate everyone taking the time to look at Amy’s website. You can read about Alyssa and Amy’s heart child Chandler and see all of the beautiful work she does.

Flowerzinherhair.com

Blue…

happymom4life — Wed, 03 Feb 2010 07:51:35 +0000

So today we went in to the cardiologists office because we wanted Alyssa’s pulse ox to be looked at. Last week Alyssa turned blue during a spongebath… Her hand went completely blue. Her fingernails have been blue and just a few days ago her toes began to turn blue. So being the paranoid heart mom I needed to make sure her pulse ox was good. After her spongebath incident we had taken Alyssa up the street to her peditrician to check her level but when he did it he got a 75! He was using one for a bigger child so we felt that was the reason it was so low, it couldn’t be right. At her cardiologists today we got a read out of 96. A sigh of relief. However he did tell us that the ventricle is beginning to get tighter/smaller and starting to close. Which is the reason why we are seeing her fingernails and toes turn blue. We just have to watch her closely and any signs of a tet spell we will need to call 911. I know it’s somewhat “normal” for her to look a little blue, but it’s still frightening and not something you want to see your child go thru. Especially knowing that she is blue due to lack of oxygen.

On a lighter note….
This morning I woke up and did my normal routine….grabbed my iPhone, checked my missed calls and texts, then opened my e-mail. It was once I opened my e-mail that my mouth hit the ground. Not to mention the tears which could have filled up a koi pond. Let’s just say that I have met an unremarkable woman thru my best friend Courtney all over the Internet. I was already in love with her and her family and today I believe that her and her family has to be a group of the most amazing people in the world. I can never truly express my gratitude or appreciation for what they are doing for our family. I am not going to tell you what the e-mail said… However when the time comes I can’t wait to share the outcome. Today I am very humble and feel extreamly blessed.

P.S. If you know a woman in Utah named Amy…reach out and give her a huge hug for me! It very well could be the very same Amy who has a heart made of gold and may just be the sweetest person I have ever met.

Letter to Oprah

happymom4life — Sat, 23 Jan 2010 18:40:37 +0000

To raise awareness for CHD – all parents of heart babies were supposed to e-mail and mail a letter to Oprah on 1/21. Feb 7th-14th will hopefully be recognized worldwide as CHD week.

My Letter….

Dear Oprah,

Thank you for taking the time to read these very important words. My name is Melissa Dickerson and someone I love has been affected by Congenital Heart Defect (CHD). Alyssa Roze was born 11/13/09, 5 weeks early via a surprise c-section after being told during a stress test that I had severe pre-eclampsia. It came as a huge surprise that we would be having our daughter that day. To say the least we weren’t prepared, let alone did we have the slightest clue as to what news was to come just a few hours later. Alyssa was born at only 3lbs 13oz. I didn’t get to see her until 5 minutes before hearing she had a heart defect called Tetralogy of Fallot, and then a transport team whisked her off to go to another hospital that was more equipped to care for her. I wanted to die. It all felt like a dream, even the next day when I woke up in the hospital without her I felt as though this couldn’t really be happening. I felt and still feel extreme guilt for bringing a child into this world who will have to endure this. Open Heart Surgery is planned at 8 months of age, unless something happens causing her to need to go in earlier. It is hard to hear that CHD is the most common defect that children are born with and until my daughter was born I had no idea what it was. It has been a little over 2 months and every day is a struggle. Just recently we found a support group and are currently communicating via Facebook. Being Pre-mature as well as being a “heart child” requires that my daughter gets a shot monthly (during the flu season) called Synagis which helps protect her from RSV.(RSV is like a normal cold for adults and can lead to death in infants.) My mouth hit the ground when I received a call from CVS pharmacy, who is supposed to send the shot to the doctors office for Alyssa, telling me that they needed $960.00 before they sent out the shot.$960.00 dollars every month? Again I felt like I failed because no way could I afford that.We would have to sell my husbands car. Come to find out that they only had my insurance on file, where as Alyssa is covered by both my husband and I. So then the shot got reduced to $250.00 monthly. My mom has offered to pay for the shot for Alyssa b/c even $250.00 a month extra for a family of 4 just wasn’t do-able for us. Everyday we are grateful for all of the support we have gotten. We applied for SSI – and after collecting all the forms, filling out all the paperwork, and waiting to be seen…just to be told that we make too much money to receive any help (and I can assure you we do not have a lot of money), yet due to her meeting not 1 but 2 of the criteria she would have been approved very quickly. Devastated, not knowing how we will pay for her medical care we asked what else we could do. We were told of Medi-cal (which we are still waiting to receive the paperwork for), and a program called In home Supportive Services (which advised me that we have to be approved by medi-cal first before we even apply and due to funding if we do get approved it won’t be for much). It is important that anyone expecting a child knows about CHD and we as a country need to be better prepared on how to deal with it. Thank you for everything that you do, and thank you for listen to our story as well as many other CHD families.

Heartfelt Thanks,

Melissa Dickerson and Family

So most of you – if you have read my blog have heard this all before. But hopefully with all CHD families participating we will start to make a difference.

Doctor appointments and the Social Security office…

happymom4life — Tue, 05 Jan 2010 04:19:52 +0000

The 28th of Dec. Alyssa had a appt. with her pediatrician. 6lbs!!!! Yes! My lil angel is getting HUGE. I haven’t quite figured out if the pediatrician just doesn’t like us or maybe he’s moody – maybe he is just annoyed b/c he sees too much of us… I dunno but something just feels weird. They have had the results back from her belly button and made a referral to the urology dept for our daughter yet never called with the results or called me back when I called to inquire about them. He told me that day that if she has what I originally believed she had that it can turn out to be bad if we don’t get it corrected. (so thanks for filing us in now!!! – GRRR) We also told him that we had tried getting a hold of his office b/c we were sure our son had an ear infection – he didn’t even bother to look at our son. Frustrated - the next day when we saw Alyssa’s cardiologist we asked if he had any recommendations for good pediatricians that would also take in consideration her heart defect. Our current pediatrician was actually highly recommended b/c other doctors refer their patients to him b/c he is known for being educated on the heart and can assist more so if there is a problem… so as it stands I guess we will keep him. At the cardiologists the visit went smoothly. I was put into a PANIC when her oxygen level was at 89, when her last read out was at 98 just 2 weeks prior. She had a cold and it caused it to drop. Needless to say b/c of that it prompted me to beg my husband to stop by the office today just so we could see what her oxygen level was . A safe 98 again. WHOO HOO!!! We had made an appt. with the social security office to get SSI for Alyssa which was what a social worker had told us to do. SO we arrived at the appt. on time with all of the required (a ton) of paperwork filled out and ready to go. We waited for what seemed like an eternity (or an equivalent of DMV wait time) to be seen. Once we got in we sat with a nice gentleman that stated simply I made too much money and because of that she won’t qualify for the program. Under different circumstances she would be a perfect candidate and would get approved right away b/c not only the TOF but also b/c she was premature with a low birth weight. He told us what some options were , and we will have to look into them. This may result in Chris staying home to take care of our kids. - I can’t lie and say that doesn’t hurt a little bit b/c I would love the opportunity to be able to stay home and care for my children however due to the fact I make more money and I am in a management position it makes more sense for me to continue working. – So this is just a little update on what has been going on in our lives. I will try to keep this blog more updated than I have as of recent. We have just been a little busy

I hope everyone had a great Christmas and a very Happy New Year!!!!

Due Date

happymom4life — Tue, 15 Dec 2009 23:09:38 +0000

Today was Alyssa Roze’s official due date. Numb I guess best describes how I am feeling. This morning while my husband and son laid asleep next to me I held my daughter in my arms and just wept. I didn’t think I would be able to stop. Just barely over the 5lb mark and over a month old. I couldn’t imagine having her today knowing that the doctor told me while I was carrying her she stopped growing and began losing weight. Smaller than 3lbs 13 oz at full term? Seems crazy to me. I am so thankful to have her. Seeing her open her eyes and look around lights up my day. People tell me all the time how strong I am, and although I try my best for my children, my strength doesn’t even begin to compare to my daughters. We have a tough road ahead of us, yet it will ensure a longer road to travel upon together as a happy healthy family.

Will I get used to days like this?

happymom4life — Sat, 12 Dec 2009 07:42:03 +0000

Today we visited Alyssa’s cardiologist. Anxious and nervous, we arrived at the office on time with all of the forms pre-filled out. Once there, a calmness took over. I don’t know how to explain it. Maybe from just knowing that this doctor is the best there is and I can see the passion in his eyes for what it is that he does everyday. Or maybe it was the picture on the wall of the beautiful little girl that gave me the hope I was looking for when I began this blog. Who knows.

Alyssa got hooked up to the EKG machine and it took over 20 mins just to get a read on her heart b/c she is so tiny that the machine kept failing. Finally, after several attempts they got what they needed. They checked her oxygen level, it was at 98. She got weighed…5lbs 1oz! Yes!!! Finally she made it to 5 lbs. The doctor came in and checked Alyssa out, and gave her heart a listen with gentle hands all while trying to keep her calm and warm with her blanket.

Then began the question and answer part of the visit. What to expect. What to look for. What expectations to set for those that will be watching her. I was still in the back of my head hoping to hear… “We made a mistake, she s fine. She doesn’t need to be here”. Obviously, that didn’t happen. Nor in reality will I be hearing that on any of our future visits. He asked how she has been doing, and if she has had any tet spells (A TET spell occurs when there is a sudden tightening of the narrowed area below the pulmonary valve. The blood that normally goes out of the pulmonary artery to the lungs, goes out of the aorta to the body instead. This makes the child look blue or bluer). We told him what we had observed over the time which she has been home. Only one time had we seen her get blue, however she didn’t pass out, and it seemed to go away. We discussed her weight, and possibly increasing the amount of calories that she consumes at each feeding. The doctor had told us with TOF babies the minimum amount of weight gain is 1/2 oz a day. So as long as she keeps that up she will be able to stay home and continue her same eating routine.

We discussed the surgery, if all goes well being closer to 8 months of age is when it is best to preform the surgery.However, he did explain if her oxygen level gets into the 80′s or she has tet spells then the surgery may need to be moved up. He advised us at any time we can come to his office and weigh Alyssa and check her oxygen which made me feel a great deal better.

Alyssa has to get her 2nd Synagis shot tomorrow at her pediatricians office. That helps protect her against RSV. Alyssa’s cardiologist was happy that she was getting the 2nd one tomorrow b/c premature babies as well as babies that have heart issues have a much higher risk if they get RSV. He also advised us we need to make sure we limit the contact and those that are around Alyssa need to wash their hands and sanitize. This we already do, and will obviously continue to do. Her cardiologist will see us back in 2 weeks.

Alyssa had her ultrasound a few days ago for her belly button. We have yet to get the results back, yet it looks like it has finally closed. YAY!!! While I was at the radiology office I found it a little concerning that the radiologist knew of my situation b/c my OB had recently been in contact with her. She asked of our situation and I had explained to her what Alyssa’s diagnosis was, and she asked me if we had known she had the defect from the ultrasound from when I was pregnant. Hmmmm…. NO! Supposedly at 20-22 weeks that office does the ultrasound which shows the outflow on the heart and they would have been able to detect the defect then from it. Well, lucky for we… I was 18 weeks along when I had my 1st ultrasound at he office and they didn’t preform that ultrasound portion. However, my OB had called b/c he had a concern from one of the pictures of the heart he viewed. Why was I never informed of this? And why did my ob not request that at one of the several other ultrasounds that I had the outflow then be checked? (The radiology office only preforms it at 20-22 weeks unless requested by the dr). I know that even if we had found out nothing could be done right away and this is something that I am just venting about at the moment, however it would have been nice to know. To better prepare ourselves for the situation that we are in. I think we are adapting just fine do to the circumstances, but it would have been appreciated if we were informed.

Well – that is it for now. I am going to go hold my beautiful baby girl and let her know how much she means to me.