It’s been too long…

Hi, everyone. I know I’ve been neglectful about posting about the girls.  I’m still hoping that this blog can be a way to educate people about what life with preemies is like, even as we inch closer and closer to a normal life. So here’s the latest scoop since the last post: the main struggle that we deal with now is feeding.  The girls still don’t eat very well, and even though we have them completely on Nutramigen (nice costly formula) they still throw up once or twice a day.  We think this weekend all four of us caught a stomach bug from somewhere, so their vomiting has been a little worse, as well as their feeds.  But we’re starting to get back to where we were.  Unfortunately the girls have become even more selective about who they will eat with, and so Kevin and I are the only ones they will eat with.  Sometimes they won’t really even eat with me. That means grandmas can’t really help out in this area any more. For that reason we decided to let them go back to their normal lives, even though we were so grateful for all they did for us. It also means that Kevin has decided to come home every three hours to help with feeds until we get them on track.  We are so blessed that he is in a position that he has the flexibility to do that, although we are working hard to find a solution so that he doesn’t need to come home from work so often. We are hoping to talk to the doctor this week about adjusting the feeding schedule to find something that works for them AND us, whether that means feeding them less amounts more often so their tummies don’t get so full, or going longer stretches and getting more down at feeding times since their digestive systems are so slow and take more time to empty than normal full-term babies do. On the plus side, we are finally starting some cereal, and Eva really seems to like it! Abigail still needs to adjust some, but maybe she’ll like it in a week or two.  That seems to be the time frame for everything with the girls: Eva does something, the next week Abigail does it, too. 🙂

I want to stress that even though feeding/weight gain is still a struggle for us, we are by no means in any kind of serious health risk for the girls.  I’ll elaborate later on that. Abigail had her overnight pulse oximeter test again at the end of May, and we are now finally off of oxygen completely! It’s so nice not having to drag that oxygen tank everywhere.  It’s also very nice not to have to deal with Apria anymore.  A couple of weeks after she was taken off oxygen she had an appointment with her pulmonologist, who discharged her from his care, informing me that her chronic lung disease is completely gone. It was a huge shock to us, because we had assumed that she would deal with it for YEARS. And the information came just in time as the smoke from the Arizona fires began to blow over and cover Albuquerque.  We still kept the air conditioner off as much as we could just to be safe, but it was nice to know that it wouldn’t affect her so greatly. Also, we’ve been having our home healthcare nurse make weekly visits to check on the girls, and this week should be the last week that she comes.  She informed me last week that she would discharge us, too, because the girls are basically healthy.  So we are taking teeny weeny steps in the right direction. We still have a physical therapist that comes twice a month to work with the girls to help them get where they need to be developmentally.  They certainly don’t act their age! Eva has already figured out how to roll from her back to her tummy, but she hasn’t quite figured out how to get back onto her back.  It’s amusing and annoying to have her keep flipping over onto her tummy, only to whine when she needs to be flipped back over.  She’s figured it out a couple of times but isn’t really consistent about it.  Abigail has been able to get from her tummy to her back, but not the other way yet.  She’ll get there at some point. 🙂

I also just want to clarify that despite all the problems the girls have with feeds and gaining weight that it is not a cause of concern where we might be approaching the need for a feeding tube. The reason Kevin helps so much with feeds is that we are doing everything in our power NOT to have the girls need a feeding tube.  I reached out to some friends about this, and my friend Sherry informed me of a feeding clinic in Dallas that takes on babies like the girls to work with them intensively and get them on track for eating without a feeding tube.  So if we do get to the point where we need that we have decided we would rather take the girls to Dallas then to have them have a surgery that makes it even HARDER for them to develop normally.  Instead of a 2-year catch-up (which we have right now) it would take 5-10 years to catch the girls up developmentally if they got feeding tubes.  It seems like such an easy solution but trust me, it’s not the best one. I know people read this for info about the girls, and I know some of you are very concerned.  God gave these girls to Kevin and I to make the best decisions for them, and people who burden us with their worries only make it that much harder for us. I keep in touch with our pediatrician at least once a week through email, and if there’s ever a concern on mine or the doctor’s part she is quite good about getting us in to see her. I still keep in touch with a couple of our NICU nurses, and I know I can always reach out to them if need be.  I also stay in touch with friends who also have preemies and deal with the same struggles.  The resources are out there, and we are making full use of them. I write these blogs to ENCOURAGE everyone about how the girls are doing, not to create more concerns. We always appreciate prayer, and right now that’s what we need from everyone.  We trust the Lord; He has already done so much for us! He has preserved their lives for His purposes, so we need not fear.

I just want to also take this opportunity to remind everyone to be grateful for what you have, especially you parents.  If your child is sick and fussy, be grateful that you don’t have to worry about things like oxygen and hospital visits. Be grateful that weight gain is something you don’t even have to think about. Be grateful for every poopy diaper you change, because it means your child is eating well enough to have poopy diapers. I can speak for all my friends with preemies that we have daily battles that most parents don’t even have to think about. I’m going to post a link here to an article I found on about parents of preemies and the insensitive comments we have to deal with. And of course, I have pictures to share! Now that the girls have gotten out of the house a few more times we have more pictures with friends and family. Much love to you all for all your support.  It means the world to us!

All dressed up for the ball!

Like her mommy, she too is a "hat" person 🙂

Got them both asleep

Testing out our stroller!

Giggles from Miss Eva

One picture where they DO look identical

Right after Abigail got her oxygen off...which one is she? 🙂

Eva practicing standing with Grammy

Abigail enjoys her baths now

Nonno with smiles from Eva

Cousin Hosanna came to visit and play with Auntie Lowo 🙂

Abigail sleeps on Auntie Sarah

Great-Grandpa and Great-Grandma Gonzales with the twins

Auntie Mima (my Aunt Cathy) gets cuddles in

Caught in the act!

The Coffings come to visit!

Uncle Adam and Eva laugh

What are you looking at?

Eva and Aunt Sarah got along very well


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