Friday, October 3, 2014

Making Progress

The last few days the girls have made some nice progress. The thing to remember in NICU is "small strides are huge milestones". Gaining a few ounces, pooping, maintaining temp, not vomiting, etc. They were concerned yesterday that Olivia might have an infection because her stomach has been distended for a few days and she had some "molding" which could be early sign of infection and gives the baby's skin a look of lace. After doing the x-ray and labs, everything came back totally normal. Her stomach is filled with gas and that is because of the fortifier. That stuff is a necessary evil. It is hard on stomach, but helps them put on and maintain vital calories. She should also be getting her Picc Line out today. If for some reason she needs to be hooked up on IV's again, they will need to put the line back in, but it can cause infection by being in with nothing going through it. She is 4 lbs now and growing so much. She is such a freaking happy baby! Always smiling and laughing. I could sit there and stare at her for hours ( oh I do)! Our little fighter Lilah is also doing pretty darn amazing. With the hole in her heart, treatment is different and so are her milestones. She is not putting on as much weight as her sister. This is because they have to be very careful on getting her high calories, but not high volume of liquid. It will put added stress on her heart and that is something we definitely don't want. I also spoke with the Cardiologist yesterday and Lilah will need to be on multiple heart medications and probably larger amounts until her heart surgery. This little girl amazes me daily. She is such a little fighter.

Last night was pretty special for me. I did kangaroo care with both girls for the first time. Al and I had a misunderstanding and he wanted to be a part of this. So when I sent him a picture, he was so hurt and upset. Luckily we talked about things and he realized it wasn't on purpose. We are going to try again with the girls this weekend and pretend it is the first time. I love that he is so involved with them and their care. All the nurses and doctors LOVE him! It kind of makes me feel like crap because I see the girls at night when everyone is gone. Last night talking to the Cardiologist, she mentioned that she "always" sees Al and must be missing me. Talk about a huge punch in the gut. I already live with overwhelming daily guilt of leaving my girls in the NICU while I go home. It has been so bad that I am not even sleeping at night anymore. I check my phone constantly to make sure the ringer is on and the hospital hasn't called. To make things worse, I have been told at least ten times " Well wait until the girls come home and then you won't be able to rest like you are now" 


I don't have five extra minutes in my day as is and I am lucky to eat two meals a day and shower (if time permits). I just can't believe  how people comment on things they know nothing about. It is very offensive. Not only am I a mom to twins, I am a mom to twins in the NICU. Not taking away from other parents, but this is a really hard job and very stressful. Of course like I have said before, worth every minute.

Here are some pictures for your viewing pleasure:


  1. Simply cannot get enough of these girls :) Where is the blogger emoji with the heart eyes?! LOVE!! XOX

  2. Grow, girls, grow! They are so stinking beautiful, it makes my heart happy to see them and see you holding them both at the same time. I'm sorry people are making ignorant comments to you. They have no idea what all you've been through and are going through now. I know you want nothing more than to have them home with you and that seems to be a pretty insensitive comment to make. XO

  3. They are more than gorgeous! I love their little faces! So precious!
    People who are not in your shoes cannot understand. Don't take their words to your heart. Keep your heart for loving your family:)))
    I hope Lilah will finish with all the treatments sooner than you expected.
    All the best!

  4. People just don't get it. Unless you've been there....there's just no way they'll get it. Talk to moms who have been there. They will keep you sane.

  5. I love LOVE the double photo of you with the girls. Brings me back to those moments (both in NICU and at home).

    You know my stance on comments like the one you got. But I'll restate it: until you've been there, it's impossible to understand the rollercoaster that is NICU. Yes, having them home has been its own adventure, but anyone who assumes NICU is easier is fooling themselves.

    You and Al are doing an amazing job. I know the guilt, but know that I am beyond impressed with you both and it shows with how well O&L are doing. Keep up the fight Rapp family. And I can't wait for that photo of when they come home.

  6. I think you are making the ultimate sacrifice by going back to work A WEEK after your section so that you can spend more time with the girls when they come home. I'm sure it's difficult for you to sit at work instead of snuggle all day but you are doing what you are doing because you are a good Mommy. Don't feel any different!

  7. So happy for you that they are doing so well! They sound like strong little ladies already!

  8. It is definitely a challenge getting in sleep when they get home, but it is nothing like when they are in the NICU. People really don't understand unless they have been through it. You are such a trooper and working so hard for your girls! I think it is impossible not to have mom guilt, but truly, you are doing a GREAT job managing everything. I am so happy that you and Al have such a good relationship that you are able to talk through your misunderstandings.