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…. April 7, 2010
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? March 4, 2010
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 February 8, 2010
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.
Blue… February 3, 2010
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 January 23, 2010
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.