I won't lie. I am overwhelmed. You hear stories from NICU moms and can't truly understand until you have been in this place. I am trying so hard to balance being a mom to my girls and also being my own caretaker. It is easy to forget simple things like eating, drinking, sleeping and showering. Until this point I was never an emotional person and now I find myself crying all the time. I worry about my girls....
For the most part they are both doing very well. We get compliments from nurses to doctors etc. on how "amazing" they are doing for twins born at 30 weeks.
Everyday they are getting stronger. Both are off the nose cannulas and both are just breathing room air. Their feedings have been increased daily. I am providing their breast milk. As of today Lilah is weighing 2 lbs 12.9 oz and Olivia is back up to 3 lbs .7 oz.
We did get some bad news today. Lilah has a hole in her heart. It is moderate to large and the position of it will most likely require open heart surgery. The cardiologist wants her to be at least five pounds before surgery. It looks like we have a few weeks to a month before that huge hurdle. I am scared. There is no other way to put it. I worked so hard to get these babies and the fear of losing one absolutely kills me. I have been trying so hard to keep my shit together for my little baby, but it is so hard. This really puts life into perspective. To think this morning I woke up feeling sorry for myself because I was hurting still after surgery and finding it hard to get around. Who would have know that later in the day I get news like this?
All we can do is take things one day at a time. I know my little peanut is a fighter just like her mom. I know that if anyone can make it through a surgery like this, it will be her for sure. Heck today she ripped her feeding tube out 3 times and also her respiratory line. I think the nurses are refer to her as Spitfire Rapp.
My beautiful Olivia is moving right along and she is such an amazing little girl. She has the most heart warming smile and she knows exactly when to smile at me.
I will leave you with pictures from today. PLEASE keep both my girls in your thoughts and prayers.
Oh T! I wish I could be there with you, helping in any way I could. All of this is overwhelming and hard, even with the best of circumstances. And the news about Lilah is so scary. Even thiugh I know she's one hell of a fighter, it's so overwhelming.
ReplyDeleteWith all of it, I'm going to reiterate the positive: your girls are off respiratory support and are gaining weight. That's HUGE!! And they are both increasing their feeds. That's incredible! Remember that it's the NICU milestones that need to be celebrated and O&L are hitting them (all while flipping the bird).
Holding you in my heart tonight. Rest up and know you are not alone in this.
Praying her heart heals on its own. And prayers for strength for you. I can't even imagine how hard this all must be.
ReplyDeleteOh honey, i am so sorry to hear this, but yes believe your little one is a fighter. You've fought so hard for them and i know you will continue to do so. You and your family are in my prayers! God Bless!
ReplyDeleteOh no, I am so sorry to hear one of your little girls has to have surgery. I can't even begin to imagine what you must feel right now. I will keep all of you in my prayers.
ReplyDeleteGlad to hear they are doing well. If it helps at all, I was born with a hole in my heart too, and they fixed it when I was a baby. Praying for little Lilah that everything works out just as well for her! Thinking of you and your girls.
ReplyDeleteKeeping you all in my thoughts and prayers. Sending lots of love to all of you. xoxo
ReplyDeleteT, Lilah is going to be fine! I know 2 cases, one 24 years ago and another 16 years ago where both babies had to travel from one continent to another to have an operation for the same reason like your girl. Today, they are healthy and no problems. Your little flower will be alright, too. Just feed her well to be as strong as possible.
ReplyDeleteT, I'm so sorry you're going through this. Lilah is tough, and I can tell you of at least three people that I know personally who had holes in their hearts fixed through surgery as babies, and they're all just fine. I don't know if that helps any, but we're all thinking of you.
ReplyDeleteI'm so sorry to hear about Lilah's heart. Like you said she's a fighter just like her mom, and she will be fine and stronger then ever. It's so normal to be emotional after having a baby or babies in your case. But having them in the NICU is so much different. I had a hard time with Oliver being in the NICU for two weeks. It's hard going to bed at night and they are not with you. I know how you are feeling. And I will promise you time does fly even though it seems like it's not. They will be home before you know it!!!
ReplyDeleteThinking of you, T. I know you must be scared to death to get news like this, but your girls are prospering and getting stronger. Your sweet Lilah IS a fighter like her momma and she's going to pull through just fine. Sending up some prayers for you and those precious angels. XO
ReplyDeleteYour girls are beautiful. Thinking of you. My IVF miracle was born at 33 weeks and we spent time in the NICU as well. It is tough but you are tough and can do this. I wish I had more poetic words to share, but just know you are not alone and they are going to do so, so well.
ReplyDeleteOh the crying. I remember the crying. Don't be too hard on yourself about that because you have hormones raging out of control! In addition to the stress of worrying about your tiny babies. I have heard of the hole in the heart thing on several occasions and each one of them had a successful surgery to fix the issue. I believe that your Lilah will be an additional success story. Hang in there!
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