Sharing Sisters

I have to start this post with an apology...Facebook has taken up way too much of my blogging time. What is it that is so addictive and time consuming about Facebook? I haven't actually written anything in such a long time and I've had some very raw and intense things to write about as we just passed the 18 month anniversary of Zoe's passing. So, I'll write more later because it's 12:30 a.m. and I really need to go to bed...I'll leave you with this little story that my FB friends have already read, but for the rest of you here it is....

The other day Lily wanted to wear Avery's orange shirt with the little people embroidered on it. My dad and stepmom brought each of the girls a shirt like this from Guatemala. Lily's is blue, Zoe's is green, and Avery's is orange. Avery wasn't in the room with us when Lily asked; even knowing Avery would probably have a problem with this, I put the orange shirt on Lily anyway.

We head out to the family room and immediately Avery says "That's my shirt Yi-Yi. Take it off!". To which I reply "I told Lily she could wear it, would you like to wear Lily's shirt?". Avery emphatically says "No!"

Lately Avery has been requesting to use Zoe's paci (no, we're not completely weaned off pacis yet), so I think to myself "hmmm, maybe she'll want to wear Zoe's shirt?". I suggest this option to her and she agrees. I then tell both Lily and Avery that the best thing about being sisters is that you can share.

We get Avery into Zoe's green shirt; and she looks at me with her huge chocolate brown eyes and says "Zoe is a good sister to Avery." I say to her, "Yes, she is. Avery, Lily, and Zoe are good sisters to eachother."

I love these girls so much, I truly think my heart may explode.

And another one that was just told to me...most mornings I wake up in the girls' room because one or both of them has come to get me in the middle of the night. Lily is always the first to wake up BEFORE it's light outside. I can usually get her to lay down for another 20 minutes or so but she will inevitably begin asking continuously for milk. (Thankfully Richard leaves the monitor on and comes in with a cup before too long) After all this repeated asking for milk Avery wakes up. They'll busy themselves with books and baby dolls for a little while and then they start saying "Yets go in the puh-yay-woom (playroom) or yets go in the kitchen, I need some dinner (they don't quite know which meal happens at which time)." I always respond "Five more minutes, I just need five more minutes." Of course I try to say this as many times as I can get away with...and on nights where I haven't slept at all I'll take them into the kitchen/family room, turn on Caillou or Sesame Street, give them each a cup of cheerios and curl up on the sofa under the blankets while Richard makes the coffee.

Richard stepped in for me this afternoon so I could go work my Mothers of Multiples consignment sale and said that when Avery woke up from her nap she came into the family room, curled up on the sofa under the blankets and said to him "Five more minutes, I just need five more minutes."

Update on all the babies

I apologize I haven't updated sooner...thank you Mary for asking.

Natali's little boy was discharged last Thursday with the viral form of meningitis. There is no treatment for the viral form but it is not nearly as concerning as the bacterial form. I haven't spoken with Natali in detail but the snippets I've gotten indicate he's doing just fine, no more fever, eating, and sleeping just like he should be. Phew!

The 26 weeker twins are also doing a bit better but still need many, many prayers so please don't stop praying for them just because they've begun to improve. The little girl is on the conventional ventilator now. They've been able to regulate her blood pressure but her heart rate is still a bit erratic, though not nearly as high as it was. My friend went to visit the babies and she said the little girl was awake and alert and looking around. This was the first time she had seen her baby's eyes open in well over a week! She still has a way to go and will be in the NICU for some time, but any baby step forward is wonderful! The little boy is on si-pap, a form of cpap I am not familiar with. He is doing well with his breathing however reflux is giving him a lot of problems and causing him to brady often, sometimes several times each hour. I know they are trying different combinations of medications to get it under control. Reflux is such a monster! And such a common issue for preemies to deal with. Our girls were well over a year old before we were able to wean them completely off prevacid and zantac. We practically had to stand Avery up as a tiny baby after each feeding to try to keep it from coming back up!

The 32 weeker twin has cystic fibrosis, which I failed to mention in the last post. I'm supposed to speak with his mom tomorrow. Last week the doctors were saying he would be coming home two days ago...that didn't happen. One common issue for CF kids is the inability to gain weight. He was gaining really well, but then didn't gain at all for the last week. So he has now been moved up to the pediatric floor. While this may seem like a good thing to not be in the NICU it raises many other issues for the parents from a logistical standpoint. The nurses have more babies to take care of and aren't as available as when your baby is in the NICU. When Zoe was on the peds floor a week before she died we didn't leave her side for even a minute because the nurse would only have time to come in, change the IV fluids, do a quick assessment and then leave. I couldn't bear the thought of her being in that room all by herself. With Zoe she had a scarred vocal chord which made her cry almost inaudible...and because she was getting stronger she wouldn't desat when she cried to alert the nurse that something was wrong. So I wasn't taking any chances! In our situation I was lucky enough to have my mom and my dad at home with Lily and Avery while Richard worked so all of the babies were covered. This mom has the other twin infant at home and a 6 year old and they live an hour from the hospital. I'm not sure what she's worked out in terms of being with the one little boy in the hospital, caring for his twin, and getting the 6 year old to school and activities. I'll find out more tomorrow.

Thank you all so much for your prayers. Please continue to lift these families up!