Tuesday, January 6, 2015

Cardiology Appointment

Today was Lilah's cardiology appointment. She is having them every three weeks now until surgery. It couldn't have gone any better. First of all, my big girl weighed 6lbs 9oz three weeks ago and today...... 7lbs 14 1/2 oz! She is also 21 inches long. I couldn't believe it. In fact, I had the nurse check the weight again. I think her reflux medications are helping. She is still throwing up after every feeding, but not as much volume. I have also been giving her more tube feedings verses bottles. My little girl is very stubborn and most of the time it is a fight for her to drink a bottle. By the time its over we have puke everywhere and lots of tears. SO I decided to make it easier on everyone that I do mostly tube feedings throughout the day and at her 2 a.m feed. Okay back to Cardiology appointment. The doctor is putting Lilah's case before the board on Friday and hoping to get her on the surgery schedule within the next four weeks. As happy as I am for this to finally be happening, I am SO scared of losing my daughter. I also know if she doesn't have the surgery that we will eventually lose her to heart failure. So it is really a double edged sword. Right now the only thing I can do for her is keep her healthy and growing until surgery. Of course the bigger she is, the less risk. 

I go back to work next week. My sister will be watching the girls for a week and then my MIL is coming down to keep Lilah for two weeks. My aunt is flying in from California for a month and Al is taking off work (without pay) for about 5 five after surgery to keep Lilah. We don't feel comfortable with anyone else keeping her after surgery. Since we have been dealing with all the medical issues with her since day one, we want to keep it that way as much as we can. Unfortnanetely Al found out yesterday that his disability pay only works if it is for him and no other members of the family. He decided to sell his mustang last month just in case something like this happened. So we will be able to keep him home for a month or so with her while she is healing. 

Miss Olivia will start back to daycare in a week. I am So happy it is only down the road from my job. Now I can go get lunch cuddles with her! We are also trying to wean her down on feedings. Since Lilah came home from NICU we kept them both on the same feeding schedules and it is wearing us down. The girls will be four months in four days and they still eating every three hours around the clock. Today the Cardiologist said we can move Lilah to every four hour feeds instead of three. So we will also be changing Olivia's feeds as well. 

Please keep our Lilah in your thoughts through the next few months. It is going to be hard on her and hopefully it will all pass soon and we will have a healthy heart little girl.




  1. Yay! That is such great news that Lilah is gaining so well. And yay for every 4 hour feeds. We did every 3 hour feeds with our daughter until about 3 months and it was so hard! That extra hour of sleep makes such a difference! I will continue praying for your family and the surgery.

  2. Oh my goodness, I can't believe she was able to pack on the pounds! Hopefully she has the same hefty weight gain before her surgery. I am praying praying praying for that sweet little one. Your girls make my heart smile SOOO much!!! My niece was 6 months old with her first open heart surgery and it's just hard on the family, so I will be praying for all of you!! XO

  3. So happy to hear that the appointment went so well. Go Lilah!! I know you're very frightened about the upcoming surgery. Will continue to keep all of you in my thoughts as you progress. May it be smooth and a fast recovery.

  4. She looks incredible!!! That weight really looks good on ya, baby!

  5. Sweet girl, always praying for you. 💗💜💗💜

  6. Sending her lots of healthy and healing vibes for a great surgery in a few weeks!