In rereading some of my old posts, I know that God has been preparing me for my little Avery. I don’t know that I would have been prepared for her in the ways that I am now, had He not given me the trials that He did.
I endured losing a baby before it ever had a chance to make it out into the world, learned how to trust God in all situations, and experienced a much worse situation with a miraculous outcome before bringing home the Avery that I have now.
So as we discover and uncover new problems, or work towards figuring out how to treat those we already know of, it’s become just a normal part of life that doesn’t worry or stress me out unduly. I know what the alternatives are, and I’d much rather have the baby that I have than to endure another loss, or suffer through the what–might–have–been.
With that in mind, it’s almost become a badge of honor to talk about the complications of my baby. I’m not sure if how I’m handling this is good or not, though.. on the one hand I explain away her issues with nonchalance and maybe taking it a little too lightly, as if I were proud of the things she’s enduring and the number of doctors visits she’s had, and look how well I’m handling it. Sometimes I feel that I must look that way and appear pompous or something. When in reality what I’d really like to convey is that I’ve come to terms with the issues, and not only has God provided me with a number of resources to help us through this and in many ways make it even easier than a baby without issues, that He’s also used some of the smaller issues to reveal larger ones that wouldn’t have been discovered until much later otherwise.
And in reality, none of her issues are that great. They’re all “mild” and treatable. I have nothing to complain about compared to other mothers with life long issues, or fatal issues. I just have to continue to keep it in perspective, which is another reason I explain it as not so big a deal.. who am I to make a mountain out of a few little issues? I guess it depends on who you’re talking to.. some people seem so upset for us because they didn’t have any complications with their children. Others offer comfort by telling me their own stories, which are often much much worse than what Avery is dealing with.
I do still cry over her on occasion. I know that I’m not quite the lighthearted person I was before. I’m not sure how much of this is due to the last couple of months of stress, uncertainty, hormones and overwhelming love for a helpless innocent who doesn’t even know what she’s dealing with, and how much of it may be postpartum depression.
I think what upsets me the most is when Aria hurts her. I know that Aria has just started her terrible twos, that I don’t spend as much time with her as before the baby, or as much as I should be spending because of the needs of the baby, and she’s dealing with a lot of change right now. Everything about her can be rationalized and explained away. But none of that matters when she walks over and starts by patting Avery but it turns into scratching her. Or a kiss becomes a bite. Or a “hold this!” cuddle turns into a violent squeeze and who knows what else and the baby begins to cry. I hate it when Aria makes her cry. It makes me cry.
How could she want to harm this tiny helpless little baby that has done nothing to her? I know it’s jealousy, but for goodness sake take it out on me instead! Doesn’t she know what this tiny person has endured already? And what she has yet to go through? Of all the people in Aria’s life, Avery is the most heartbreaking for her to harm.
She’s two, Lisa. She doesn’t realize what she’s doing.
And once Aria is made to stop hurting Avery, Avery gets over it immediately. She may have a new scratch or bite mark or other badge but she gets over pain exceptionally fast and continues her curious stare at her older sibling as if nothing had befallen her.
I will say we’ve made great strides in taming the wild Aria. Between advice from family and friends, our therapists, and articles, etc. I’ve managed to take new approaches to Aria to reduce the number of attacks. She’s now afraid of biting for fear of a spanking, and she doesn’t really hit that hard anymore, it’s more a test of if we’re paying attention to her, and we’re getting good at catching her before anything actually escalates and put her to bed before she really gets cranky. Also, she’s learning to focus her frustration at us more than the baby, which I will gladly take.
I don’t want to make Aria sound like a monster. She is a typical terrible–two–toddler who is behaving as expected with all of the changes and with less attention than she’s become used to, and most of the time the violence doesn’t start until close to bedtime and she’s losing control of her emotions and temper. And it’s not like this is terribly frequent or terribly violent, but when something does happen, it breaks my heart, because it’s targeted at Avery.
So Avery. What we know about and are still exploring:
She has a cleft palate, and partially clubbed feet. She also has torticollis and plagiocephaly, a sacral dimple and potentially Spina Bifida and/or tethered cord.
Her suite of specialists include a team of Cleft Palate folks (including the surgeon, nurses, social workers, coordinators, etc. all of which we have to meet with at each visit), an Orthopedic doctor and team, a Neurologist, an ENT, a Genetics doctor, a Physical Therapist as well as Feeding Therapist, some other folks that are tracking her for different reasons (Early Intervention, Medical Assistance, etc.), and of course her Pediatrician.
I’ve learned more medical information in the past two months, and what’s interesting is I had never heard of any of these issues before. Not even Spina Bifida. I had seen those commercials for cleft lip over in third world countries, but not cleft palate, and never dreamed it would happen to us. So Avery has been an phenomenal learning experience for me, but as I mentioned, we have so much help, I believe there are at least 25 people out there working towards making Avery whole.
More about each issue:
- The cleft palate (a hole in the roof of her mouth) is fixable via surgery, around 9 to 12 months, but she currently has a feeding therapist that comes to our home once a week to help me and teach me as there are lots of other things that come with the territory, and she’ll need speech therapy when she starts talking.
- The partially clubbed feet (the top 1/3 of her feet are turned inward.. medical term is metatarsus adductus) are currently being corrected with casts, and she’ll get special shoes later. She’ll have physical therapy for this once the casts are off.
- The torticollis (tight muscles from being cramped in the womb, has a hard time turning her head one way which means she has a flat spot on her head, and can cause developmental delays from not using the other side of her body because she won’t look that way.. etc) and plagiocephaly (head is not round (caused by the torticollis) and not symmetrical) are both also correctable through physical therapy and potentially a helmet. Her face isn’t completely symmetrical, but fortunately it’s not terribly obvious unless you spend a lot of time looking at her, which I do, but it’s supposedly all correctable. She has a physical therapist that comes once a week to work with her and teach me stretches and things to do with her, ways to encourage her to turn her head to the other side so that it can help round out her head and correct the asymmetry.
- Sacral dimple (a very strange indent on her lower spine) is usually related to Spina Bifida (neural tube defects, usually an issue with a hole in the spine) which can lead to tethered cord (this is the latest potential finding, and can cause all sorts of issues in adulthood, but can be surgically corrected in childhood.. still learning about this, and how it would be corrected if she does have it). This stuff is still up in the air and more tests have to be done. They found in an ultrasound that her cord was lower than it should be, so want to do an MRI to better evaluate, but that requires sedation and won’t happen for a couple months.
- The ENT is because of the cleft palate, as the hole in her mouth means a lot of what she eats gets into her sinuses, so she’ll most likely have tubes in her ears, etc.
- The neurologist is because some of these issues, like Spina Bifida, can affect the brain, and they also want to follow what happened in the hospital and ensure that she really is, truly and still, without calcification.
- The genetics is because there are so many different issues that they want to see if these are all coincidences or if there is a syndrome or some other underlying chromosomal issue, and to identify anything else that we should watch for if it is.
The upcoming tests that still need to be done are an MRI, another CT scan, and a chromosome blood test.
Every single week of maternity leave we had at least one appointment, but usually had multiple per week. Avery and I got so good at traveling together that when I started back to work I must have checked the back seat a dozen times for fear that I’d brought my baby along with me.
The only scary issue is the tethered cord. But really, if she does have it, they can correct it. And it would be an amazing blessing that it was caught in infancy as it was. It may never have been been caught if she didn’t have other issues that brought it to light. A tethered cord is where the spinal cord, which should be free at the base, is not and as the child grows it pulls on nerves and can cause all sorts of bodily issues. When discovered in adulthood it’s because a lot of damage has already been done, and although they can untether it, they can’t reverse the damage, just keep it from getting worse. If she has it, I would rather it be corrected before anything irreversible happens. And again, we wouldn’t have known if it weren’t for some of these other issues.
So the cleft palate is both a blessing and curse. Because she can’t nurse I have to pump, and I hate pumping. But I’ve found ways to make it less tedious, such as feeding her while pumping. But the blessing side is that after she’s eaten she really should be held upright to reduce reflux. And so I have the most perfect excuse to hold her on my chest, snuggled under my chin, and recline on the couch or in bed and just hold her. For a good while to make sure it stays down. So I have my snuggle bunny and it’s wonderful. Another blessing from the cleft palate is the need for a feeding therapist who has given me the most wonderful advise on how to get her to sleep through the night. So at two months of age she is sleeping through the night most nights! It’s wonderful.
Oh the snuggles. My cuddling snuggly little angel puff.
I love having a baby again. And on the occasions that I wish she were older so she could have some of these issues corrected, or have a better chance of fending off her sister, I remind myself that once this tiny snuggly stage of life is gone it’s gone forever, so just cherish it as much as possible while I can.