Caleb:Socially, Mr. Caleb has really started to come out of his shell in the last few months. He used to hang in the corner by himself and not really get involved with the other kids. He is now rambunctious and wants to be in the middle of the excitement. I was so worried about his reticence, so I'm super happy to see him joining the group.
Developmentally, his motivation hasn't changed much. Caleb's thought process goes a lot like this, "Why would I walk over there if I can just crawl?" Granted, through lots of therapy, we finally got him walking, but he was the last kid to do so. He needs a lot of encouragement to try new things. He is making strides developmentally, it's just a bit on the slow going side with him.
Verbally, Caleb speaks the second most words with his vocabulary consisting of, "oh," "no," and "uh-oh." By the age of two, kids should have somewhere between 100-250 words and small phrases in their vocabulary. We obviously have a ways to go. At the end of January, all of the kids will start seeing a Speech Therapist to help them learn how to talk.
Physically, Caleb sees a Cardiologist, Occupational Therapist, and Physical Therapist. The therapists are helping him catch up as he is consider 16 months old skill-wise on their chart. Right now, his cardiology appointments are once a year to follow the two holes in his heart. He still has a Patent Ductus Arteriosus (PDA) from when he was born and also has a hole between the top two chambers of his heart, called an Atrial Septal Defect (ASD) that affects blood flow.
All kids have PDAs while in the womb, but normally they close by the time the child is born or just after. In the case of preemies, there often isn't enough cooking time in the womb for the hole to close.
The ASD is actually a bigger issue. ASD's effect blood flow causing oxygenated blood and unoxygenated blood to mingle instead of everything moving in the correct direction. What happens is that blood that leaves the heart pumps to the lungs with that mixture of oxygneated/unoxyengated blood and causing the heart to overwork. As a child, this isn't a huge issue because the body is small, but the bigger the person grows, the harder the heart has to work to make up for the inefficiency. Eventually it has to be fixed before adulthood (if you are an Arnold Swartzenagger fan, this is the same heart surgery he had as an adult...late in life!). Heart failure is a potential outcome if the hole isn't fixed. So, I don't know if that was clear as mud or what, but long story short, it was confirmed at his annual checkup in December that the holes have not closed at all and he will need heart surgery in the next couple of years. We have been told that we can make it another year with the holes in his heart and he will be reevaluated in December 2013 with a surgery date most likely set after that. If he had had this surgery as a baby, it would have been open heart. Instead, they will be able to go through his groin, insert two plugs to close both holes, and send him home the same day. We like this version a lot more!
I promise, I really am trying to make this as interesting as possible!
Abby:Socially, Abby loves people! She is a flirt and always has been (Daddy needs to prepare himself!). We are pretty sure that Larry the Cucumber is her current crush. Haha! She prefers to play on her own, but interacts well with her siblings. She has no fear of new people or new places and takes off for the toys without saying goodbye to Mommy and Daddy when she goes to the church nursery to play (when it's not winter).
Developmentally, Abby does pretty well. She is still considered to be 16 months developmentally, but is willing to try new things. Given the opportunity, I'm sure she would climb straight up to the roof. I can hardly keep both of her feet on the ground! Motivation isn't an issue for her...unless we are talking about eating. Speaking of which, will feeding this child ever get easier?! From the beginning, she has been a very different feeder, and that really hasn't changed much now that she is a toddler. She makes every attempt to live on: milk, crackers, bread items, chips, and peanut butter and jelly sandwiches. The problem is that there aren't enough calories or nutrients in those to keep her growing. The doctor now has her on Boost shakes to get her caloric intake up. Yep, she got slapped with the "failure to thrive" label. Thanks for making me feel like an awesome mom, Abby.
Verbally, Abby doesn't speak. She does babble but doesn't have any words yet.
Physically, Abby sees just the Occupational Therapist with the Speech Therapist starting this month as well. She has been discharged from seeing an Opthamologist regularly for Retinopathy of Prematurity (ROP) and now just sees her yearly along with the other kids for regular eye exams.
Still with me? Two down, two to go!
Elijah:Socially, Elijah is a huge snuggler. He loves people, loves laughing, loves making people laugh, loves helping...just generally loves being in the middle of everything and pleasing his parents, siblings, and therapists. One of the best parts of Elijah's personality is his sweet, sensitive heart. He visibly worries about his siblings when they are upset. He can run into a wall and not even notice, but if he feels like someone has slighted him, his feelings are incredibly hurt. He also gets upset if one of his siblings is upset. I so appreciate his sweet spirit and hope that I do a good job of guiding him to manhood without crushing his spirit.
Developmentally, we had the same motivation issue with Elijah for awhile that we did with Caleb. Not quite to the same degree, but he still doesn't want to work harder than he absolutely has to.
Verbally, Elijah can make a few sounds, but I haven't heard him say any words. For the most part, he will mouth sounds, but doesn't like to say them out loud. However, he has developed a stand-up comedy routine and keeps Daddy, Mommy, and siblings in stitches all of the time. Now if we could just get him to use words instead of babbling so that we can understand what he is saying...
Physically, Elijah is doing what the others are: walking, running, and working on squatting. The therapists often have him do (modified) planks to strength his core since that's always been a week spot.
One kid left! If you've made it this far, you are seriously hard core!
Ellie:Socially, Ellie can't get enough of people! It seems that every person that she meets is her new best friend. She hasn't met a stranger, which is somewhat concerning from a safety point of view, but ultimately so adorable!
Developmentally, Ellie is the furthest ahead cognitively. It's exciting to see her process what we are saying and respond with her actions. She also sees things that need to be done and fixes them herself: wipes up spilled milk with her stuffed animals, takes favorite loveys to siblings who are sad, finds little pieces of paper or trash that other siblings would eat and brings them straight to me. Such a sweet, helpful little girl! She is all about pleasing others. My hope for her is that I can encourage her kindness but make sure that she knows she is always loved even when she does something wrong. I see a lot of myself in her, and I know how easy it is to mix those two things up.
Verbally, Ellie has the most words in her vocabulary at this time: "Daddy," "Mommy," "please," "bye," "ball," and "pants." However, she doesn't use her words very often unless prompted. She will also be seeing the speech therapist in a few weeks. I hope that the speech therapist is ready for all of this!
Physically, Ellie has developed far beyond what we hoped. When she was in the hospital, we were told that because of the cysts on her brain, she was a very good candidate for cerebral palsy. She also had severely bowed legs and feet and we weren't sure how much work it would take for her to walk. We were prepared for boots, casting, extensive therapy, and the idea that she might not walk for a long time, or possibly at all. On top of that, there was also an issue while she was in the hospital with the breast milk that was given to her. The nurse on one of the night shifts mixed up my breast milk with another NICU mom's milk and gave Ellie the wrong bottle (scroll to the end of the linked post if you want more details). The other mom, through no fault of her own, had contracted some diseases prior to having her baby, and we were told that Ellie would need additional testing to make sure she hadn't contracted anything. All of her tests came back negative, but we were told that HIV can take up to six months to actually show up in a blood test once it's been contracted. Although HIV cells are considered to be to big too pass through breast milk, there was still a chance that Ellie could end up HIV positive.
All that to say, Ellie has overcome every hurdle by the grace of God! Ellie was our second baby who learned how to walk toward the end of May 2012. I will never forget the feeling of awe I had for God's provision for our baby on the day that she took her first steps. She was walking! We didn't even know if it would be possible! And in November 2012, she had a second blood test that showed she is HIV negative, and we can now cross any leftover fears from the breast milk mix-up off of our list.
Right now, the main thing that we are working on with her is her weight. Ellie has also been labeled by the pediatrician as a "failure to thrive" child. Hers is more severe than Abby's, so she has been going in for weight checks every other month. We've been able to get her back on the weight/growth curve, but she is still drinking Boost everyday to keep her weight moving in the right direction. Let me tell you, nothing makes you feel better as a mom than to hear that your child is failing to thrive. *sigh* I promise we feed these kids, and we feed them good, nutritious food too! Abby just doesn't like to eat, and Ellie is eating but burning more calories than she consumes.
All of the kids are considered to be 16 months developmentally based on the skills they have. The two main things that they need to do to move up the curve is 1) jump with both feet leaving the floor, and 2) go up and down the stairs without assistance or crawling. Once they master those two things, they will be considered around 20 months developmentally. However, as of age 2, they will no longer be working under adjusted ages, and doctors will consider them officially their correct age.
We are also in the middle of our final winter lockdown. Our kids don't have immune systems or lungs that can withstand the severe illnesses that come during cold and flu season. By next year, they should be strong enough to be out in public.
So there you have it! A very, very long update on how the kids are doing. So many of you asked specifically for an update on the kids when you took the survey, and I have to tell you how very much that meant to me as a mom. That you all would still care so much about how they are doing even two years after they were born means the world to me. Sometimes I read back through comments that you all have left on previous posts and find them so encouraging on rough days.
Thank you for continuing to pray for and cheer my family on!