I know what my dreams are each morning. For Big JaMonkey to love her Sister as much as her little heart can. For Little JaMonkey to grow out of this SVT mess, for no alarms to sound all day long and she sleeps for at least 5 hours one night. Ok, the last one might have been more my dream but I’m sure she would like it too.
I stay up until midnight each day to make sure she has her medication on time. I keep her bed inches from my face so I can hear if she is breathing. Her monitor is next to my bed blinking towards my face. Thank goodness that things have been doing well so far since we’ve been home. She hasn’t had and SVT since before we came home from the hospital. Only a handful of the alarms that have gone off were a rush to action but they are getting further apart.
Big JaMonkey melts my heart more and more every day. She wakes up and comes into our bedroom and the first thing she asks me is, Mommy if I wash my hands can I touch my baby? She washes her hands and comes over to her bed to pet her head and tell her that she loves her so much. She also turns to me to remind me of how cute she is. She gets upset if the baby starts crying. She rushes over to make sure she hasn’t spit up or needs her pacifier. Her best friend came to visit and she just kept telling her that it was so cool having a baby sister. She was hyping it up because her best friend was also getting a new baby Sister any day now but was not very excited about it.
Later that day I took her to get some ice cream for a special treat and my shy little girl exploded into the store and told anyone and everyone that would listen that she was a big Sister. That she named her Baby Sister Adelia and that she is so cute. The women behind the counter indulged in her excitement and had her raving until I finally dragged her out of the store. It was the sweetest thing I had ever seen.
So far the doctors are all pleased with her progress. Her medication dosage is perfect for her heart right now. We have to do something about her reflux though she is loosing nearly half of what she eats making our night VERY long. Making sure she doesn’t choke on it along with her being hungry a short period later. We have another round of doctors appointments next week so I’m hoping to switch her reflux meds then.
My dreams of some peace with her heart condition are starting to come true. I’m not as stressed. I no longer feel hopeless for Adelia Hope.
This made me cry…
Hugs, dear friend!
Hugs to you! My preemie was my first child and I’m familiar with the monitor, I’ve mentioned before. I am in the midst of sleepless nights with a two week old myself, but she does not have the monitor situation or any other adverse health issues -so I know where your 5 hours of sleep dream is coming from! I fall asleep feeding her ever single time! You daughters are beautiful and your youngest is lucky to have such a strong mother and loving sister. (you may not feel strong, but trust me when I say you are….you are! Nobody knows how strong they are until they are forced to do things or live through things they didn’t think they would be able to do.) Hugs again…..
So glad things are going okay. You are doing such an amazing job. I hope all your dreams come true for you and every big & little member of that sweet family!
Sounds like she’s doing great mama! Keep up the great work!
Hi, I just found your blog looking into babies with SVT. My baby girl was born at 38 weeks with SVT. She weighed 5 lbs 12 oz due to lack of growth from being in SVT in utero and nobody knowing about it until birth. We spent 4 days in NICU but were released home with a clean bill of health after no SVT in those 4 days. They gave us a stethoscope and told us to listen to her heart every diaper change but they were confident the SVT wouldn’t come back. 3 days after going home we were rushed to the local children’s hospital because our baby girl was lethargic and unresponsive and her little heart was beating at 280 bpm. We spent 3 weeks in hospital trying to get her heart to stay in normal rhythm, she was released to go home again when she was 4 weeks old, she has been taking Propanolol 3 times daily and Amiodarone once daily since then, she’s now 9 months old and still has occasional SVT episodes. It has been quite a journey with her! I wish you and your little one the best. You can visit my baby’s blog and comment any time :o). http://www.thestoryofababywithsvt.blogspot.com
Hi Meghan, how’s your little one? My sister just delivered a baby boy 2 weeks back with SVT and I’m rooting for all the support I could get and I just bumped into your site. The article made me really emotional and all the comments are so positive and give me so much hope. Thank you.
She is great! She was cleared of all cardiology at 6 months. Kids are so resilient, we think they are so fragile when they are that little but they are built tough. Aside from her immune system not being as strong as her sister’s, she is perfectly healthy now. SVT sounds a lot scarier than it is. I’ve met so many people that have it as an adult. As long as you have a good cardiologist that takes the scary out of it, it is very manageable. Best of luck to you, your sister and her little boy!