Tuesday, November 11, 2014

Grade 6

Grade six. That is the size of Lilah's vsd. The largest possible hole. Today was their 2 month check up and shots. Every time I hear how "huge" her whole is, I feel sick to my stomach. I just want to live in denial that my daughter has congenital heart failure. At home Al and I are both doing every thing possible to help our daughter grow strong so she can get her open heart surgery. She takes 7 different medications daily ( 3 of which are diuretics). We have to blow air in her stomach every 3 hours to make sure her tube is in place. It is scary. I cringe every time she coughs ( scared her tube is not in her stomach). We have boxes and boxes of medical supplies, tubes, syringes, tegaderm, stethoscope, etc. With all the fear, all we can do is what she needs from us. We are her parents and protectors. I look in her eyes when she is awake (which isn't much throughout the day) and know how much I love this little girl. I hope that one day we will have our sweet Lilah healthy. Not lethargic. Not pale, but healthy and pink and full of energy like her sister. I know we will get there and it is going to be a long road.

Today she weighed 5lbs 6 oz, that is 2lbs 6 oz bigger than birth and she has gained 4 oz in a few days since being released from the hospital. Of course we need to keep a close eye on her to ensure she doesn't have to much fluid on her lungs. So we want her to gain weight, but not to fast and not to slow..

Olivia is up to 6lbs 8oz and that is 3lbs 3oz bigger than birth.

Al and I are tag teaming this parenting twin thing and doing amazingly well. Our schedule is working so far ( knock on wood). The girls are sleeping in their crib at night and doing great so far ( knock on wood). We are actually each getting 6-7 hours of sleep a night! ( knock on wood)....



11 comments:

  1. Precious! I'm sure that Lilah will be fine!

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  2. I have lurked on your blog for awhile but have hesitated to reach out until this point because I was unsure how serious Lilah's VSD was. I wasn't sure if their situations were at all similar. My nephew was born with a grade 6 VSD (he is now 10) and was unable to have it patched. He underwent a Fontan procedure. With Lilah are they still talking about patching or is a Fontan in her future? If you would like I can put you in touch with my sister who went though all this with my nephew. Feel free to email me if you are interested erinvns@yahoo.com

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  3. Rooting for Lilah and thinking of you and your girls every day. Hope you keep finding strength to deal with everything. Glad to hear you are all doing ok. Take care

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  4. That does sound overwhelming, but I know you can do this. You managed to learn all about your medications and protocols for IUI and IVF to get yourself here--and now you're an expert. Little Lilah is so loved and cared for. 6-7 hours of sleep a night? You guys are pros!

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  5. Your girls are precious. Lilah will thrive, she has the best possible momma and papa to love on her and get her through this. It will be hard, of that I'm certain! I am fully confident that you guys will get through this! Praying lots for the whole family!!! XOX

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  6. You guys can do this. You are doing a fantastic job! Lilah is going to rock her surgery!

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  7. You guys have already gotten through so much, and you'll get through this. She's such a fighter, and we can all see where she gets it!

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  8. You guys are amazing, plain and simple!

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  9. Tag teaming is the best!!! Good job mom and dad. Working together and having each other's backs. It's not as easy as it seems when you're stressed and exhausted.

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  10. Wow! I think you're getting more sleep than me with twins! Ha!
    So glad they are both home. Keep up the good work!

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  11. You and Al are amazing, and the perfect parents for those sweet girls.

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