text:
Oh my little baby girl that puts me through emotional acrobatics. I love that little squishy baby so much, and she's just so stinkin' cute I just have to absorb her cuddles into me.
Ok, that's out of the way.
Ok now really.This last week was a good week. We learned some new news, but pretty much all positive.
We first visited the hospital's NICU developmental program, who wants to follow Avery to track how she's developing, and whom at first I was somewhat hesitant to visit because we are already visiting specialists for everything and it seemed a little redundant and like a potential waste of time. That being said, this was only the second appointment, the first having been at 3 months when I first learned about her chromosomal abnormality, so I did kind of have a bitter taste from that experience. But we went anyway, with the intention of trying again and if it wasn't helpful, then I just wouldn't schedule a follow-up. Well I'm glad we went. There were three ladies, one who played with Avery, one who sat and took notes, and one who sat next to me and asked a bunch of questions as well as narrated what the one who was playing with Avery was doing. They put her in a highchair and gave her different objects, like a ring with a string attached. The narrating lady explained, "she'll put the ring out of her reach and see if Avery can figure out that she can use the string to pull it closer.. see, there she figured it out. This is a problem solving skill and is part of a next step ability, a skill you would need when driving, or when they figure out they can push a chair up to the sink." Oh great. Another child that can push furniture around and get into things, just what I need!
They kept gushing over how pleasant she was and how sweet and adorable. I'm pretty used that that kind of talk and I tend to assume people say that to all the cute little babies, but the one who was playing with her said so many times that I actually lost track, "why can't all my patients be this good!" They asked me if she's always this easy-going and I replied that she was, unless she was hungry or sleepy (which when I told her pappy he said it with me verbatim in stereo when I was telling him the story). They noted that when she did something they asked that she looked for approval with a big smile, and it made me think about how we've been working on different skills and how when she does them we (PT, OT, grandparents, myself) all make a big deal with lots of applause. They asked about her motor skills and I did warn them that she might give heck if they put her into a crawl, so they saved that for the very end. And she did. She was so sweet and complacent the whole time, and sure enough, when they tried to force her onto her hands and knees she raised heck, but stopped the minute they put her back into a sit.
Because her back surgery caused her to be immobile and basically stuck on her back with little to no stimulation to her gross motor skills for 7 weeks, I joke that her 9mo adjusted age is 7 months. I told them that too, because I know that she's doing roughly what Aria was doing at 7 months and that she's a little delayed on getting to a sitting up position on her own as well as working on crawling.
Well sure enough, she scored at 7 months on her gross motor skills. But she scored above her age on her fine motor skills, and at or above her age on cognitive abilities! So basically, when she couldn't move around much, she focused her efforts elsewhere 🙂 She's not a lazy one, that little tot! They think she's doing wonderfully and they had no concerns about her mental capacity. They do want to continue following her for her vision, as she seems to have some strange tendencies, like taking a vision break and looking over your shoulder or at your forehead, or tilting her head back to look at some things, which in all honesty I'm so glad someone else observed because I often feel like I'm the crazy one when I bring up quirks of hers and I get brushed off. It seems like some of her uniqueness is either out of everyone's specialty or unexplainable.
So yeah, really glad we went, they saw all the things I and PT/OT see, I'm not crazy, and my baby is on track to being a normal healthy baby girl (and the cutest!).
Next we went and had her head scanned for her plagiocephaly (flat spot) and they said she could go without the helmet during the day but should keep it on at night for another four weeks. Yay for helmetless baby girl!
After that we went and saw the Cleft Palate folks and prepared for the surgery coming up in June. It was pretty straigtforward, and the doctor explained the risks and whatnot, and said, "less than 1% in my hands" which sounded both odd and comforting to me. Typical recovery is 2 nights in the hospital, but if she's doing well the doctor said we might be able to be discharged after the first night, but my mother-in-law and I agreed that it would probably be best to just stay so that Avery can focus on recovering and not trying to keep Aria from jamming things in her mouth. Which she does, like play food. Plus Avery will be restrained to keep her from putting things in her mouth. Upon reviewing the appointment summaries on our Children's account online, I found that the surgeon had left her review of the appointment, including my consent and her evaluation of Avery, which included, "On exam Avery is an adorable, alert, interactive 9-month-old female in no apparent distress. She is well cared for and well groomed." 🙂
Last was ENT and after the doctor asked about her past Audiology appointments and based on his finding fluid in her ears that day, he recommended we move forward with putting tubes in her ears when she had the cleft surgery. So backing up a second: we've seen Audiology twice, but the first one was kind of a loss because her ear drums weren't moving and she wasn't responding to the tests consistently. So we went back in April and while her left eardrum didn't move properly, she did hear mostly normally out of that ear, but her right ear drum was moving but she failed all of the hearing tests on that side and the audiologist said it appears she has hearing loss. But she did recommend that at the very least we repeat testing several more times with different audiologists to get the most accurate measurements, and ideally we would have an ABR test, which can only be administered while she's sedated but would be the most accurate as it would actually measure brain activity so we'd know whether the brain could hear the noises or not, instead of just measuring Avery's reactions. Back to the present: While talking to the ENT doctor he explained we couldn't coordinate the ABR with the two surgeries (cleft palate and tubes in the ears) and I gave my hesitations about having her sedated again later, as it would be so many times (with these surgeries we'll be at three in less than a year 😦 ). BUT, he said that even though the last audiology appt showed her right ear as being healthy but hearing loss, it could very well be that she did in fact have fluid in there and it may be why she couldn't hear. SO, the tubes might actually improve her hearing on that side and she may not have the hearing loss.. or at least not as bad as we thought! After learning this Eric and I discussed waiting to schedule the ABR until we let the tubes work and follow up with Audiology again and see what we get. I would feel much better about that.
So that was one day, then another day we went to Orthopedics and learned a lot more! So her scoliosis is due to the plates between her vertebrae growing at odd angles instead of square/rectangular shapes. Its based on the cells growth and I'm not 100% sure I understood how that all works or how it would be corrected if it continues to grow wonky, but based on her last x-ray and this one it had not changed, and currently the scoliosis is very mild and he would be perfectly happy with her in 10 years if she continued growing the way she is now. He explained why, from his perspective, it was so important that we had the tethered cord release. From what I had understood, it was more about the future potential damage that it could do as it pulled and stretched where it shouldn't, but from his perspective it was causing her nerves to not communicate with her body the way it should. So it impacted her scoliosis, her clubbed feet, her hips not moving correctly.. and now corrected it will take time for it to communicate properly so her body has some catching up to do. Wow! He couldn't explain why her hips won't abduct out flat the way they should, but said that might correct now. He kept using the words uniquely made, and God's design when talking about her, like her extra rib that is fused with another rib. I brought Denise, my mother-in-law, with me to absorb whatever he might tell us because I was prepared for it to be a lot (which it was), and she brought up how Avery can be sitting there and reaching for something way out in front of her and her nose will pretty much touch the floor as she stretches forward. I hadn't thought anything of it because babies tend to be flexible, but he actually explained that she has extra laxity in her joints. This means she will be more flexible than most, and may very well be a contortionist when she figures out how to move her body, and it will both be blessing as well as problematic as she'll be more likely to dislocate joints. Speaking of which, she doesn't show any signs of hip displaysia which everyone's been watching for. He said her legs and feet looked beautiful, and he recommended we leave the special shoes on for another year to help them set and allow the muscles in her feet adjust but we could also swap out for regular shoes on the wrong feet. Otherwise he said she has a great structure and he had every belief she was going to be able to walk, run, jump, climb and do whatever she wanted and otherwise be a normal little girl!
So. This week. My baby is going to be ok. Normal. Uniquely made but capable of being a normal little girl. That's all we really wanted.
And it finally sank in that God really does got this. He gave me her lullaby when we were in the NICU, before we ever learned all she'd undergo or how intense the first year of her life would be, or even before we knew she didn't have calcifications in her brain.
My little Avery
just so small and sweet
you are so dear to me
my precious Avery
You will overcome
all that was undone,
And may the Lord be true
and bring new faith through you
He's done exactly as I asked and he told me through song that He would. She'll always have little tale-tale signs of her unique makeup, like her eyes and the one crease on her left hand, but maybe those are so she can share the story of how God healed her and made her whole so that she can plant many many seeds of faith for Him.
So now my emotions are just coming to terms with looking at Avery as "normal" and not thinking of her as special. She's been so special for such a long time now, and has had to be treated as delicate, that it's hard, but I don't want to set her back or expect less of her or overcompensate for her when she has every possibility of doing more than I ever imagined she'd be able to do. So the new normal is thinking of my baby as a perfectly normal baby girl, like most parents expect their babies to be, with just a little bit of an interesting history behind her 🙂
This little girl is trying so hard to become mobile. She rolls around and then checks out her surroundings.
Avery playing the piano: (about half way through the video Aria takes the phone off of me, so stop watching if you get motion sickness!)
New developments in the realm of my little Avery. Yesterday was to be a day of "routine" checkups, routine meaning based on what we know about Avery and not expecting anything new to occur.
But occur something new did.
We visited the Cleft Palate folks at Children's and talked about the surgery which was recommended to take place closer to a year of age due to all of her other issues, and we wouldn't need to see them again until a few weeks before surgery. So that was checked off.
Then we went over to ENT to see how her ears were holding up, and besides narrow ear canals that needed to be cleaned, her ear drums were moving properly so no indication of fluid behind there. They also did a swallow analysis by putting a camera down her nose and had me feed her, and she actually only fussed while it was being put in place then proceeded to drink without issue or complaint. She has an inefficient suck/swallow coordination, but has adapted well so no other tests were required, as well as no follow-up unless I requested one. So that was checked off.
Then we went downstairs and had the poor baby's blood drawn so Genetics could evaluate whether she has a syndrome or some other underlying cause behind all of these mischances. Again, she cried like mad while they were sticking her (which took two tries) but once the needle was in she was ok. Like.. while it was still in. Strange strange baby. So that was taken care of and by this time Avery was incredibly exhausted and could care less where I set her as long as she was allowed to sleep.
We packed up and went a couple blocks away to the hospital where I delivered her for their NICU Follow-up program. She was so tired that the evaluation they had originally planned for her became a discussion of my observations instead.
Early into the discussion I mentioned that she had just had her blood drawn for Genetics. The doctor, who I had failed to look at before (was staring at Avery instead) but upon looking up at her immediately recognized as the doctor who had shared the calcification as well as CMV-negative and never-mind-about-the-calcifications news, and who looked somewhat dismayed to see me, asked why Genetics wanted bloodwork done. I told her they wanted to look for a syndrome and she said, "we did that." I had had no idea that they had tested already and she disappeared to go find the results. Granted, the results took a while to come back so we wouldn't have gotten back the results while still in the hospital, so I guess it's understandable it was left unreported…
She was gone for a very very long time. I know the visit started at roughly 1pm and we didn't leave there until after 3pm, so I'm guessing she was gone for around 45 min or so. The nurse practitioner carried on the oral evaluation without her and we assessed that Avery seemed pretty normal and on track based on my observations and what I could report from her specialists' and therapists' evaluations.
Finally the doctor returned. She explained that she had the lab results but wanted to provide literature to me at the same time and never wanted to have a repeat of walking into the room with results and no answers as she did to me with the ultrasound results showing brain calcification. I told her that I didn't blame her for not showing us images at that time, because when I did finally see them and then started googling it, Avery's was bad. Bad bad. Like most of her brain, bad. So yeah, the doc was pretty wary of giving me more bad news without a whole lot of answers behind it. So she had educated herself thoroughly before returning.
Avery has Trisomy 8 Mosaicism. Or Mosaic Trisomy 8 syndrome, or T8M. However you want to research it, it basically means that some of her cells have an extra 8 chromosome. The best resource I've found so far is rarechromo.org.
So this is very rare and has a wide array of outcomes. There very well may be a great deal of people with it with no outward signs at all, who never discover it. There are those who discovered it later in life when trying to identify issues, but who had no developmental problems or any of the common symptoms.
But there are also those who have severe disabilities because of it. Everything from developmental or speech delays and physical deformities to mental retardation or a higher chance of developing leukemia. I'm seriously praying that she was only affected in her skin and outward signs, and not in her bone marrow or brain.
Several of Avery's unique marks are now recognizable trademarks of this syndrome. She has the cleft palate, difficulty feeding, deep creases on the bottoms of her feet, a sacral dimple and potentially tethered cord, probably has issues with her hip joints, and was delayed in her primitive reflexes and a little late on some milestones (like social smiling).
Upon being told about this diagnosis I could feel myself beginning to panic. I didn't want to relive the calcification/CMV nightmare. I didn't want to be told that I was going to lose my precious baby at 8 years of age. She talked as quickly as she could to give me as much information at once as possible. That if it had been full Trisomy 8 it would have been fatal and she never would have been born, so Mosaicism is always better because not all of the cells are affected. And if it had been a different Trisomy she might have had a shortened lifespan, but it seems T8M typically has a normal lifespan. It's not hereditary, it appears to be a fluke, spontaneous and uncertain as to why it happens. She read to me that there are lots of people who seem to be fine who have it, such as a college professor. She could be a college professor.
Once I was able to look up again and was a little more focused we had a lot of deep discussions. She and I, while being silently observed by the practitioner, and with a tiny sleeping baby snuggled on my chest, shared. I told her about my sister-in-law who had lost a baby at 22 weeks because of a genetic disorder, and how odd it was that mine was born with one. I asked if it was common, and she sighed a big sigh and said that no it wasn't. But that she too had had 3 miscarriages, one in the second trimester due to a genetic disorder. She had lost her third baby at the same time the adoption she was planning fell through, and it was the worst Christmas she'd ever had.
I said told her it was still better than brain calcification and she told me how much she had hated telling me that. One of her peers had ordered the ultrasound and she was the one who saw the results and had to tell us. She said it was terrible having to tell us the results without having any answers. But then she relived the moment she saw the CT scan. She had been so mad at the neurological examiner when he had said, "well do you see any calcification?" as if she were crazy. She had been floored by the disappearance of it. The nurse practitioner who hadn't made a noise during this whole time asked quietly, "what happened?" and the doctor fumbled for the words, saying "oh they said it was.." and she couldn't think of the word, and I chimed in, "artifact." She confirmed, "yes, that's right, that's the word." I spoke into my baby's soft hair and said, "I think that she is a miracle baby," and the doctor said very matter-of-factly, "me too."
So here we are.
I just keep living on this rollercoaster of emotions. One minute I feel so blessed to have a mostly-healthy baby who seems to be progressing normally and has physical issues that are correctable. Then another moment I can't hold back the tears and I just want to feel sorry for her, and for myself. I remind myself that it's not down syndrome, it's not cancer, it's not CMV or a calcified brain. The doctor said she had to tell another mother that her baby had CMV.. and the mother was HIV positive. That poor family. I have one perfect child (at least according to my motherly biased evaluation), and one child who may have every chance to be completely healthy and normal once some issues are corrected and this will one day all be a distant memory. Or maybe it will be a life changing experience that we will endure with God's help for the rest of our lives. Who knows. I do know that God is going to provide the strength we need, for whatever may come, but sometimes I just want to cry anyway. I want to be strong and an example of giving over my burdens to God, and at the same time I want to talk about it and let down my guard and be emotionally distressed over my precious baby.
The doctor recommended I get a complete copy of Avery's medical records from the hospital, that way I would have it to share with Children's and so last night I stayed up late reading through it. It was really interesting to read, from the doctors' perspectives, the evaluation of Avery over the course of those 10 days, as they observed things they wanted to evaluate further, and their notes on her progress. It matched everything I remembered and wrote about, but also had a few additional bits of information that I hadn't been aware they were concerned about. I also read through the T8M information and finally managed to fall asleep, but then woke up really early this morning. And today I'm not doing very well at actually working.. I would rather read and write than work. What I really want is to find someone else going through this and just spill my guts to them. I reached out to the group that runs rarechromo.org in the hopes that I'll have a support group through them, but it would be so neat to see a family with a child who started off much like Avery and just share stories.
I've already decided that I don't want to tell Avery about this until she's in her 20's, maybe, so that she can never use it as a crutch or feel sorry for herself. I'll keep all the feeling-sorry-for-her for myself. But who knows, it may come up at some point anyway.
My constant prayer has been for me to be Hanna – I want God to let me keep her here, but I want to give her over to God. Let her be a little blessing and light in this world. Let her plant many seeds for Him.
While still in the hospital I wrote her lullaby which doubles as my ongoing prayer for her:
My little Avery
Just so small and sweet
You are so dear to me
My little Avery
You will overcome
All that was undone
And may the Lord be true
And bring new faith through you
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.
Her name was picked from the very beginning. I didn't have this with the last baby that was miscarried, but with this one, I just knew her name was going to be Avery Faith, long before I was even told she would be a girl. I just knew. And the few times Eric and I did talk about names, we both liked the idea of giving her a faith middle name like her sister's Grace, so once I heard him say he wanted to name her Faith, which is exactly what I was thinking, the name was pretty well set in stone for me. But I couldn't ever get him to really talk about first names with me, until literally the morning we were driving to the hospital. That was when he started talking in earnest, but he finally told me, after me rejecting a few he suggested, that he knew I was pretty set on Avery and nothing he said was going to sway me. He was right. I wanted to hear his thoughts, but she'd been Avery Faith in my mind for nearly nine months, and I was kind of stuck on it.
The hospital stay was a little different this time. With Aria the whole operating room and post partum section had been under construction, so it was much nicer this time. But just as scary. We checked in and were asked the same questions by every nurse, doctor, resident, etc. that would be assisting that day, which was a lot, and the closer it got the more nervous I got. Oh, and because I would need an IV they started trying to get one in. Five tries later they finally did, and I had bruises all around both elbows for about three weeks after.
At one point a nurse asked if I had fallen in the last three months. I asked Eric if me tripping over the baby gate counted. He said, "did you fall?" sarcastically, because he knew I had, and I said, "well yeah.." so the nurse started typing, while muttering, "I wouldn't have told me that…"
My wrist was adorned with a bright yellow bracelet stating Fall Risk and everything else was too, including my charts, the whiteboard in my room, etc. They wouldn't even let me walk down the hall to the operating room unassisted, because I might fall. *sigh*
So we get down there, and Eric in his scrubs had to wait while they put in the spinal and got me situated. That was the worst part. The spinal is the most scariest thing in the world, and I had a very vivid recollection of the last time. When we were preparing to go down there they asked me how I was doing and asked why I was so nervous, I told them about the spinal experience from last time and so not only was "the best anesthesiologist in the hospital" there, but her boss, the head one, as well. But like last time, it took a good long while, with them trying to calm me, and another doctor was holding my shoulders, making me rest my forehead against hers and answer questions about my life. It felt like forever, and it probably was a very long time, and it took two tries, but they finally got it in without paralyzing me permanently.
Once I was stretched out and they got the blue curtain up, Eric was allowed in. Then someone decided the IV wasn't working correctly so they tried yet again and the sixth one was the charm. Right in the crease of my elbow so I couldn't bend my arm effectively.
This time around I wasn't shaking as violently, and was able to carry on conversations with Eric, but I don't really recall what all we talked about. To me, all of the doctors on the other side of the blue curtain were far away. Later it dawned on me they were working on my belly, so were actually very close by and no wonder they kept overhearing what we were talking about and laughing or asking questions about what we were saying.
Finally, a million years later, my tiny little baby was announced with "she's a peanut!" 5 pounds and 10 ounces. She was born on her due date; based on my period, based on the ultrasound dating, she was right on time.
She didn't cry. I asked if she was still in there with us, or if they'd taken her away, and they said no, she was still here but just being quiet.
That bothered me. In fact, the last 1/3 of the pregnancy I was bothered. I'm not sure why, but I kept thinking something was wrong. My mom kept telling me I was being overly dramatic, that I was overreacting because of my sister-in-law's miscarriage at 22 weeks which had been so hard on everyone. So I tried to not worry too much when the baby would have bouts of lots of movement followed by a day or two of very little.
But when Eric brought the new tiny bundle over so I could see her, and she was just so very tiny, despite being full term. Her tiny little head was peeking out of her swaddling, and something inside me panicked. I asked Eric, "is she ok?" He replied she was fine. Why wasn't she crying?
We were able to have her there with us for a little bit longer before they said they needed to take her back. And before I was done with my surgery they said they had to take her to the nursery.
Hours later, once I was through recovery and in the room where I'd be staying for a few more days, they kept saying they needed to keep her just a little longer. First it was that they needed to warm her up to bathe her, then it was they needed to warm her up from her bath..
She was born just before 3:30pm, but we didn't see her again until after 7pm. Finally they brought her in with the explanation that she just needed some help getting warm because she was so small (with no fat on her, except in her little cheeks).
Then the pediatrician on call told us that she had a cleft palate. We had known one of her feet would be slightly turned because of the ultrasound halfway through pregnancy. At the time this was discovered they did some tests to determine if it was Spina Bifida. That had been hard for me, thinking about what her life would be like, until we learned that the turned feet were a family trait, most likely not Spina Bifida, and was completely curable before she even began to walk. It was mostly disregarded at this point, and pregnancy had continued as normal.
But now this. I'd never heard of a cleft palate before. I didn't really learn much about it except that she had a hole in the roof of her mouth, and that we'd be contacted by the Cleft Palate center over at Children's. At this point no one made much fuss over it, but said we'd have to work with them once discharged.
After that the focus was all on me, helping me recover. I was awoken at all hours of the day and night to be checked, given medicine, asked questions, etc. I was afraid to hold my baby because she was so small and fragile, but I did try to hold her as much as possible. We had visitors, and everything was pretty normal. Maybe all of those fears for her had just been hormones or paranoid new mommy fears. I was encouraged to nurse her to get my milk in, and to work on getting myself up and out of bed.
She had been born on a Monday, and by Tuesday I had a hospital pump to help get my milk to come in sooner because Avery was loosing too much weight and had to be taken to be warmed up a few times.
It was odd because it felt like no one was terribly sure what to do or what advice to give. I was told by several that I should continue to try to nurse her, I was told by the guy I spoke on the phone with at Children's (for Cleft Palate) that she would never nurse, and I was told to give it a shot by others. I was so confused, and really had my hopes up that I could nurse her, but when she reached 5 lbs 2 oz the Pediatrician started a regimen where she was given formula and her temperature and blood sugar tested every couple of hours.A nurse would come in and prick her foot to test her sugars and the results weren't where they should be. She kept trying new things throughout that day, including special bottles to help Avery overcome the hole that was making suction difficult for her. The pumping helped, I had milk by Wednesday night, and I even went to the Discharge class they encouraged us to attend.
But Thursday morning a NICU (neonatal intensive care unit) doctor came in and explained that he and the Pediatrician were in agreement that Avery should stay a little longer. We weren't told how much longer, but that she wasn't actually going to the NICU but to a special wing where we could have our own room together and she'd be monitored.
I was discharged and the nursers were super nice in providing me things I would need to help me endure at least a few more nights, like pads and whatnot, and I held my tiny baby as we were pushed in a wheelchair down to the second floor.
The room was small, but not tiny, and Avery had her own giant crib and I a little couch, but it also had it's own bathroom and sink.
The nurse that "registered" us explained how things worked, including that I would be brought breakfast but would get a voucher for lunch and dinner, that I would have to keep a sheet recording when and how much she ate, how long she nursed on each side, what was in her diaper, and her temperature. Our routine also included a blood sugar check before each feeding, so I had to wait for a nurse before I could start to feed her.
I was on my own. Granted, she had monitors attached to her for her heart, etc., but they wanted me to take over taking care of my baby.
Eric went home that night and the next day brought me more clothes and things to get through an indeterminate amount of time. We really had no idea how long it would be, but were both pretty sure it would be by the end of the weekend at the latest.
The NICU doctor came to visit on Friday and said they weren't really sure what was going on, but that she had to have 48 hours of good temperatures and blood sugar before she'd be discharged. Friday night the nurse offered to take the middle of the night feeding and I very tiredly accepted. By this time I'd given up on nursing because it was just frustrating the baby and, as one lactation nurse finally explained to me, was going to be unrealistic once I got home, to try to take care of a newborn, a toddler, have a life, and try to nurse, pump and bottle feed a baby, which was three times the work and time verses pumping and bottle feeding which would only be double the work I'd grown used to with Aria. I'd settled on one special bottle type that I was comfortable with and so the nurses used it when feeding her for consistency.
8 am the next morning I was awoken by little chirps. My tiny baby was looking towards me from her perch on her giant crib (it was really normal sized, just looked enormous around such a tiny bundle) and making little chirps. I looked at the clock and panicked. The day nurse wasn't there yet, my baby was hungry, it had been at least four hours which was too long. She had barely been keeping relatively acceptable numbers at just three hours between feedings. It had been much too long. My heart sank and I rushed down to the nurses station and very frantically, trying my best to be polite but incredibly frustrated, explained that they had to test her NOW because I needed to feed her.. it had been too long!
The nurse tried to remain calm, but I could tell she was worried too. She kept talking, while getting the testing device out, and when the first result came back too low, she said, "we'll be ok" and tested again. My poor baby. But it was too low. The 48 hours started over. I was so upset. I held a grudge. I wasn't sure if I was mad at her or the night nurse for not passing on the regimen, I was just so upset. I was mad at myself, how had I slept so long? And not to mention who knows what it was doing to my poor baby to go that long without eating.
That afternoon they brought in an isolet, which is one of those incubator things you see in the NICU. It was put at something like 90 degrees and she was stripped down to a diaper, socks and a hat, which was a lot less than she'd been in (add to that one of those long sleeved shirts the hospital puts them in, plus a long sleeved footed sleeper, a swaddling blanket and a full blanket folded on top of her). She stretched out and enjoyed the warmth, and just looked content to finally be warm. I was also encouraged to spend skin to skin time with her. I had been holding her like that when we were both upstairs in postpartum, but now I was so afraid to strip her down for fear of freezing her, but I did and kept her under my shirt, under a few blankets. She was just so tiny with that little head sticking partially out of the top of my shirt.. so tiny and precious.
So Friday when the NICU doctor had visited and didn't have any answers for us I asked if it would help if he had information about the placenta. I told him my OBG had sent it off to be analyzed; she had told us at the time that she sent it off because it was small, and it was standard procedure. He found the results and was happy that it had been analyzed because it did offer some answers… he told me that it was small and Placental Insufficiency was most likely the cause of her small birth weight. But he was also worried about an abnormal blood flow and wanted to do some more tests.
On Sunday someone came in and took an ultrasound of Avery's head. That afternoon, when Eric was on his way to visit, another NICU doctor came in and said, very nervously, that they had found calcification in Avery's brain.
Wait what? She couldn't tell me what that meant or where or anything else, and I very firmly requested that the NICU doctor that we'd been working with pay me a visit.
Shortly after Eric walked in the room and found me sitting there sobbing. He dropped the items he'd brought me, and asked what was wrong. I told him.
A short time later our NICU doctor walked in with the comment, "my heart breaks for you." We were both crying as we listened to him explain that something had happened in the placenta, and there were a few known causes for calcification, one of which was the CMV virus. They were going to do more tests, and she'd be followed by the hospital through her infancy and childhood, we'd be given information for Early Intervention, a neurologist was going to see us, etc. etc.
After he left Eric started Googling. He spiraled into a depression over the next day or so. He would come visit in the morning and sit there on the couch with me all day, waiting for more information. The more research Eric did, the more depressed he became. CMV was a crippling virus that would allow her to start out fairly normal, but would degenerate into more and more brain damaged and less functioning child as she aged.
We were going to have a brain damaged, possibly mentally retarded child, with a cleft palate, turned feet, and who knew what else. Out of curiosity I had tried to test some of her reflexes, and she wouldn't grip my hand, had no startle reflex, and wouldn't do the stepping reflex either. In fact she wouldn't even stiffen her legs, she would just go completely limp if you tried to stand her up.
Every night, and periodically through the day, I cried. I spent so many tears over my little baby as I fed her, held her, cuddled her, kissed her.
One night I kissed every inch of her little head while praying that God would heal her, that He would take away the calcification. I had this very strong image of the woman in the crowd who said to herself, "if I could just touch his cloak I'll be healed" and I thought to myself that if I could just touch Jesus' cloak my baby would be healed. I was so very sure of it, there wasn't a single doubt in my mind that God could heal her, I was beyond sure that, given the opportunity, I wouldn't hesitate to reach out and touch his cloak to heal my child, and I knew she'd be completely healed. But I wasn't sure if that was God's will for her. Maybe she was meant to be this way for another reason.
I came to terms with her calcification, although deeply saddened by it, but modified my prayers to include that if it wasn't His will to heal her, to let her be a light in this world. Let her be named Faith for good reason, that she would strengthen or bring new faith and glory to Him. Let her life be a story of encouragement.
And our family and friends prayed. And they told others who also prayed. We found out that we'd been put on several prayer chains and were being prayed for by so many people. Our neighbors had learned of it and were praying for us and spreading the news so others could pray for us.
My sister said her church was praying for us, and her pastor had prayed that the doctors were wrong.
At one point the doctors told us that she didn't have any outward signs of seizures, but that didn't mean she didn't have electrical ones in her brain, so they did an EEG. They tested her eyes for something, and took numerous blood samples for tests. We waited and continued to pray.
On Tuesday when Eric came to visit I told him I just wanted to get out. I hadn't been outside since checking into the hospital, and I really wanted to go get ice cream. He found a place across the street so we went. Then we sat in the green space outside the hospital and just sat and chatted.
One of his friends from years ago walked up and saw us, saw the tears on our faces, and asked what was going on. We told her and she started to cry. She had been bringing cookies for the nurses and was very sad for us and said she too would pray for us.
Another thing that happened Tuesday was our sister-in-law Bobbi took Aria with her family to a fair or block party or something, along with another cousin as well. The kids all got Faith stamps on their hands and she sent us a picture of their hands with caption, "Team Avery "Faith"!!" This made me sob, for so many reasons.
During this week we had visitors, including Eric's parents, his sisters-in-law.. each one would ask if it was ok to visit and I would hesitantly allow it despite my increasing spiral into reclusivity.
Thursday morning one of the NICU doctors came in in a rush, and told me the CMV tests had finally come back, and it was Negative! I immediately called Eric and his relief and joy was palpable through the phone.
Shortly after that they took Avery away for a CT scan that the neurologist had ordered. She was gone a very short while, and it wasn't much longer after that that the NICU doctor and our nurse came in, with unusual looks on their faces and a computer on a cart. The doctor told me to sit down. I didn't, I was too nervous at what they'd found, but I did ask if I could call Eric before she said whatever she was going to say.
With Eric on speaker phone, she showed me her computer screen. It was images of Avery's brain from the ultrasound. She said, "look at these images, do you see all these white spots? These are the calcification." She had a name for the pattern, with image after image showing whatever this pattern was, which included deep white matter. All that was well beyond me, but I paid attention as best I could.
Then she said, "now look at this," and opened up the CT scan results. She asked, "do you see any white?… it's all gone."
I looked at her unsure of what she was saying. She looked at me and said, "the white spots are gone. There's no calcification."
I heard Eric take a huge breath and could hear the tears in his voice. "She's ok?"
"She's ok. It's all gone. She doesn't have calcification."
I still couldn't talk.
The nurse started to laugh nervously and said something like, "she's speechless!"
I was. I had come to terms with the calcification, that was no longer the issue. I was more worried about what else was wrong with her. To be told that she no longer had it was.. well kind of unbelievable. What sort of joke was this? It was surreal. We'd already started making plans for how we were going to deal with this; I'd lived with it for several days and had held my precious baby, who didn't exhibit natural born reflexes, and what do you mean she's normal?
The doctor said she'd never experienced this before and she didn't know how to explain it.
Finally something clicked in my head and I blurted out, "I know what happened, she's a miracle baby. Everyone was praying for us and God healed her!"
Shortly thereafter Eric showed up and we were discharged. It had been a crazy 11 days but we were finally going home. Avery's temperature and blood sugar had stabilized during that time, they were done with testing her, and although the NICU doctor had given me a page full of appointments she'd made for us going forward, along with her personal cell phone in case of questions or help, we were free to go home.
We notified friends and family that the many prayers on our behalf had been answered and received back so many praises to God. It was unquestionable how much glory was given to Him.
And once we were home she started gripping, stepping, and startling as well as any other baby.
There are a number of blessings that have come from this experience. One is that it had been a blessing for me to have that time to heal from the c-section and have time with just Avery before being thrown into the chaos of life with a toddler, and I was torn between leaving behind this isolated life that was a mix of camp and prison and going home to see my precious first born who I hadn't seen in so long (other than the two brief visits she'd made during that time) and returning to somewhat normal life.
Another is how close Eric and I became during that time. We could spend hours just sitting next to each other, comforting one another, waiting for information. We had deep conversations about what life was going to be like, and how we both hurt, and we hurt for Aria, to have a little sister that wouldn't be the perfect playmate that we had originally planned. We never fought, we just survived together and we were on the same team.
Now, after the fact, there is the blessing of knowing what we almost endured. When things get difficult because she is difficult to feed with her special bottle and special ways of holding her, or her casts from her feet are obtrusive, or we learn of other complications she has or may have, it's all in perspective that everything she has now is correctable, and "it's not brain damage." We compare everything to that. And we reflect on what other parents are enduring, those that didn't witness a miracle and still have to live with much worse maladies, those that cannot be surgically corrected. Or cancer. Those are who we should pray for, while we give thanks for our little blessing.
There's also the ongoing blessing of uncovering other issues. If she hadn't had low temperatures, they wouldn't have found the low blood sugar which would have damaged her brain over an extended time. If we hadn't been sent to the NICU to monitor her, we would not have started to evaluate the rest of her which has now turned up issues that wouldn't have surfaced until adulthood that can be remedied now before they cause damage.
And lastly, there is the blessing of the glory given to God because our baby was healed and she can now be a living example of answered prayers, and all those people who prayed for her were able to witness a miracle.
Prepare yourself for a tale of sleeplessness, anxiety, pain and fear!
OK, maybe not quite that dramatic, but I did learn an incredibly life changing lesson.
Let's begin with last weekend.
I was sore. Oh so sore. Eric made us start up our workout routine again, and Saturday I did Jillian's "Killer buns and thighs" for the first time in almost a year. Ugh. Painful. But the best part is the very next day the whole family participated in a high ropes/climbing/zip lining course. Well, Jason/Crystal/Mark, Eric/Lisa and Brad did while Bobbi and grandparents watched all the tots. It was a little stressful because we had to rush out of church and home to change and Eric had to pick up his car from the mechanic and we had to get Aria to Bobbi's house all while trying madly to get on the road as soon as possible. We didn't get to eat lunch because we were running late.
So we did that and at first I was just cold and hungry, and sore from working out.. But it ended up being a blast and Bobbi had soup and grilled cheese sandwiches waiting for us when we got home (5 hours later!) which was really nice and welcome.
So Sunday night I put Aria to bed, with many hugs and kisses, then packed for my trip. This time just one night, but the difference this time was a) I was presenting for the first time in about two years, and b) was doing so in front of a customer! Haven't done that before ever (in this career)! Ok…so no pressure…except what the heck was I going to wear! 🙂
I get all packed, set my alarm for 4:30, and try to go to bed. But Aria starts screaming. I go and hold her and rock her back to sleep, and she falls asleep in my arms. Such a little adorable sleepy one, I was ok with getting a little less sleep in order to hold my baby a little more.
So now when I went to bed I was going to get around 6 hours. But then she woke up again. I sat up in a panic thinking I'd overslept, but it was only 2:30.. She fell back asleep before I could formulate a plan to identify what was wrong with her, so I went back to sleep.
Then again at 3:30… This time she didn't go back to sleep. I gave her some medicine and held her but she didn't want to sleep. Instead she stared at me and would occasionally poke my mouth or nose. I held her for a while longer then tried to put her back down, and she just cried. I went and got a bottle and held her a little longer, but around 4:30 I decided I should really get going.
Just before 5:00 I was ready to go, and Aria was still crying. I crawled into her crib with her to see if I could hold her and let her fall back to sleep, but she just wanted to climb on me and play. I gave up and kissed everyone goodbye.
As I drove away at 5:10 and I was feeling pretty good about my time. I was thinking how I'd stop and get coffee and then when I got to the airport I'd get some chocolate covered pretzels for the trip and maybe some breakfast. I glanced at the clock and was calculating in my head what time I'd get to the airport.
It's 5:15 now, which means I'll get there around 6:15… wait… why doesn't that seem right? For a 6:30 flight I have to leave at 5:30 which means get up at 4:30… no wait.. why doesn't that seem right.
I shook my head, to try to clear the fog. Had I really miscalculated? No, I do this all the time, I can't have messed up when I leave and when I get there… could I?
Ok, Lisa, so for a flight that leaves at 6:30, you have to BE at the airport at 5:30. Parked. It's 5:20 now and I just left. Oh my goodness.. what did I do????
I started to panic. I've only been working for this new boss for a little while and last time I flew I missed my flight because I overslept (sick child that time also!). It was the first time I had ever missed a flight and it was so stressful. I had managed to get on a later flight and make it on the same day, but there were no meetings on the first day last time. This time was different. This time I was presenting, and the meeting was that afternoon. I HAD to make it, and I also didn't want this boss to think I couldn't manage travel. WHAT WAS WRONG WITH ME??
My heart was racing, I stepped on the gas and started praying a mantra "please let me make this flight, please let me make this flight."
My brain was processing my options: if I miss this flight the next flights available wouldn't get me there until early afternoon.. IF I could get on another flight… I'd have to call and tell my boss and the sales person driving us around would have to pick me up later and then we'd have to hustle to the meeting. The morning spent going over the presentation as a team wouldn't happen. And oh the costs! We're supposed to be managing our costs right now and I just blew a plane ticket and would have to buy another, or at least pay some hefty fees.. Would she ever forgive me? Maybe. But really, two missed flights within a few months? Really Lisa???
"Please let me make this flight, please let me make this flight."
A little ways down the road I had a new thought. God will take care of me. Who woke me up so that I could leave earlier than I had planned? Who made me realize that I was running late so not to stop and get coffee and poke around getting there?
I took a deep breath and said, "God, I know you have a plan. I'm not worried. This will all turn out according to your will and I will just do all that I can to not make any more mistakes."
A total peace came over me. I was still driving along at the highest speeds I could safely (and mostly-legally) maintain, but I wasn't worried anymore. If I missed this flight, God would get me on another one. If I wasn't meant to make it to the meeting, God would have some other plan for me. Why worry? God was in control.
There were a few times along my route that I started to get a little bit nervous, like when it started to rain, but that passed. Then there was a big slow down, but that too was only for a minute then everyone sped back up again.
So for the entire duration I listened to the radio and sang my Klove songs and didn't fret. I wasn't in control so what could I really do but to just get to the airport when I got there?
When I got to the parking lot I parked, grabbed my luggage, and ran across the parking lot. It was 5:50. The plane was to board at 6:00, with takeoff at 6:30.. meaning it would already be on the tarmac by that point and no longer accepting passengers.
By this point I was pretty sure I wasn't going to make this flight, but might as well hurry to the security gates anyway.
I run through the doors, and there in front of me is a line at security that wraps back and forth like an amusement park line, and no one is moving. It's at least 30 minutes minimum based on past experiences. I glance at the sign that points upstairs for the alternate checkpoint, and it says, "Closed".
I sigh, resign myself to whatever God has planned, and walk up to the entrance of the line. There's a TSA agent standing at the entry point. Oh, maybe he'll wave me through to the pre-check line, which is only about 10 people long, and you don't have to unpack or take off shoes or anything. It's like the old school way of traveling where you just walk through the metal detector and continue on your merry way. Oh maybe oh maybe.. but he waves the lady in front of me through to that side. Oh. Well there goes that chance.
I walk up to him and start to head for the long line, and he says, "this way ma'am."
Really??? Really God? You're going to let me go through the short line?? Does this mean I'll get to make my flight??
I'm standing in that line, which is moving quickly, and my heart is racing. I can feel my eyes rolling as my thoughts are flying around, "I have absolutely no business being on time for this flight. Absolutely none. I don't deserve this."
I get through, I check my phone for the boarding pass, and there is no gate listed. When I get off the tram thing that takes us to the terminals I rush to the screen that shows flights and gates and whatnot, and it takes me a few minutes to find my flight. It's 6:10. I finally find that I'm in terminal A and with construction of the main section of the airport, it takes me a while to figure out which way to go and to get over to A. My gate is at the very end. I rush. I hurry. I make myself calm again, "all in God's hands."
When I get to my gate they haven't started boarding yet.
The whole rest of my trip I kept thanking God and telling him I want to share this story with others to give him glory.
I don't want to give him glory for getting me to my flight on time. I mean I do, but that's not the lesson I learned. I never ever ever want to test him or try this again. It was much too stressful and I don't want to experience something so preventable ever again. No, what I learned was that even in an incredibly stressful situation, where it looks bleak and completely impossible, God can give me peace. I can just give everything over to Him and just wait to see what happens, and not worry. This example may not be that impressive in the grand scheme of things, but knowing that when I'm 120% sure that I've messed up beyond recovery and will have a lot of people to answer to and am stressed out beyond belief, that He can take all of that away and just fill me with peace and trust, is utterly amazing.
Believe me when I say that this spreads to all aspects of life. Why worry about when or if I'm going to have another baby? God's plan will be fulfilled whether I actively participate or struggle against Him to do my own will. Why stress about the little things in life, when I know that He is watching and He knows what I endure? He will make all things right, and in the mean time He will give me peace and joy that I could never find or supply on my own. Thank you God. You are truly amazing.
Oh, and just to finish off the story, my flight was on time, the second leg (which I would have missed) was on time, we had the morning discussion over the presentation, were able to go do a store walk so that we had the perspective needed to be able to talk to these folks directly about what we saw in their stores first-hand; the presentation to the buyers was phenomenal with a better-than-expected turnout and lots of questions and praise and lots of requests for follow-ups. My boss and I had shared the presentation, and we both were highly praised from the internal team afterwards.
Then Wednesday when I was back at the office at home, both the Director over the team we had visited with (as well as other teams) and the CCO (head of sales, reports to the CEO) asked how the meeting went. They are literally never in this office.. this was the first time in several months that either was in, and both of them to boot! I was able to tell them all kinds of information because I had been there and didn't have to shirk with a, "I missed the flight, so I wouldn't know.." Thank you God. So not only did God let me make the meeting, but he blessed me with doing a good job, and recognition by higher-ups afterwards. I really don't deserve any of it. I screwed up beyond repair, but he blessed me anyway. I feel like someone in the Old Testament.
I realize that only God can give this kind of peace, but hopefully the next time you're stressed out you'll remember my story and just give it all over to God.
Oh, and Lord, please bless that wonderful TSA agent who let me go through the fast line.
…then ends abruptly.
I had wanted to write a poetic post depicting the changes of life, as Aria transitions fully into toddlerdom with her first birthday, and my little baby is a distant memory, but at the same time a new life was beginning. On Aria's first birthday I knew I was pregnant. I didn't have confirmation yet, but I just knew.
I had wanted to be pregnant so bad, and had that nagging thought in my mind for a long while… in fact, more than I had wanted to be pregnant the first time, as I now knew what I was asking for.
I think the first time I had the craving was my first day back to work after maternity leave. I was walking in and I thought to myself, 'I wish I was pregnant.' That could be explained away by the fact that the last time I had been to work I had been pregnant, so it was rather a comfortable feeling, unlike the newly empty belly and breast pump bag thrown over my shoulder, which became my travel companion for the next year.
The next time I felt it was when I finally fit back into my regular clothes and was putting away all of the maternity clothes. Funny, they had grown loathsome to me because I had a limited wardrobe and everything had started to rub or pinch or be too tight or was tiresome to look at anymore, and I couldn't wait to be rid of it.. but when I was folding it all neatly away I thought to myself, 'I can't wait to wear these again.'
As soon as I got the green light from my doctor, when Aria was nine months old, I started trying again. Because of the c-section I was not allowed to try before then, so as soon as that day came I went off birth control. I had my first period in such a long time, and when it went and another came I didn't let myself get discouraged, that was just the first try. Then another came and went and this time I was a little sad, but didn't worry about it. Finally, the next period did not come. It was my hope that I could tell Eric, on our anniversary, that I was going to give him another child. However, the test came up negative, and I was super depressed and violently moody, and knew that I was pregnant anyway, screw the stupid test and its wrongness.
I had scheduled an appointment to see my doctor because I'd had some weird cramps and pains in my lower abdomen, and when I showed up my period still had not. They asked some questions and when it was discovered that I was a couple weeks late they gave me a test there, and sure enough, it was positive. All of the procedures to determine what was wrong with me went out the window, as now pregnancy was more important. I think my doctor was a little miffed at me, as she basically said, "well now we have a lot of work to do.."
I went and had the necessary blood work done, and was told to wait a little bit longer for the ultrasound so that there would be something to see. So I did, waiting until I was roughly nine weeks along to go in. It was Eric's first day back to work, so I went alone, but I had done so many of these before that I was completely ok with that, and I was thinking to myself that I would make him come when we hit the 20 week mark and could see what gender it was.
The only thing that was different was that this time I had to have an internal ultrasound, because of the earliness of the pregnancy. It was a little uncomfortable, but I still got to see the delicate and beautiful little heart beat, and learned that based on the size the baby was actually a few days shy of eight weeks, which bumped the due date to early April.
Aria has my sister's birth month, and this new baby would have mine, 21 months apart. I was going to have my sister and myself. I was a little giddy.
She gave me my sonogram picture with the word "Baby" written on it and I went home to work from there. It was Friday.
Denise had been watching Aria, so as I walked in I announced to her, "happy Friday!" and showed her the picture. She was happy but didn't seem too surprised. I told her it would be ok to tell family, but that was all, as it was still so early.
So she did; she went home and told Mal, who then told everyone that I think he determines falls into the category of "family."
That night I had a little spotting and some mild cramps, but was not too concerned as there had been an internal ultrasound and that seemed like a normal consequence. Plus I had been having mild cramps on and off throughout the entire pregnancy so far.
Saturday that pattern continued, until the evening came. All of a sudden the spotting became brighter.. and heavier.. and the cramps a little more pronounced. By 10:00 pm it was bad. Bad bad. I was scared. And in a lot of pain. Eric convinced me to call the on-call doctor, who told me to come in if the bleeding was excessive (not going to go into details) and told me to go into the office first thing Monday morning.
That night I didn't really sleep, and Sunday I just writhed around in pain from what felt like really intense period cramps, and was pretty useless all day long.
Monday morning I had an appointment already scheduled, so I just went to that and they started with the usual pregnancy paperwork. I stopped them with, "what if there isn't a pregnancy any more?" To which the shocked attendant responded, "oh.. ok let's wait on this until you see the doctor."
When I was taken to my room and my nurse came in, it started along the same lines, "let's go over the usual questions, just like last time," to which I tearfully responded, "I think I had a miscarriage." She looked me in the eyes and said, "I'm so sorry," to which I responded, "I'm sorry too" because she had just gone through one as well.. hers at eight months and my compassion for her was so much the greater because I had a glimpse of what she endured. I had learned about hers on the last visit – she had told me she was pregnant right before I had Aria, and I had remembered and had enthusiastically asked her how her baby was to which she had solemnly replied about her loss.
The doctor came in and started asking questions about what I had experienced. She was completely unconvinced I'd had one, which made me feel so weird inside. I was torn between sadness and a resolve to come to terms with the loss, and a hope that maybe it had just been a rough weekend and everything was ok. It was like my brain and emotions were warring and it was causing me to tremble because I was confused and unable to know how to feel or what to believe.
"Your blood work was perfect, the ultrasound was perfect, everything is right on track so the chances that you actually had a miscarriage are about 3%."
She sent me immediately to get an ultrasound, at the same place I had just been three days before. She called over so when I walked in (right down the street) they were expecting me. The technician remembered me and asked what was wrong. I told her and then said, "I don't want to see, if the baby isn't …" She turned the screen away then we began. I lie there waiting to be told something.. all I could hear were the clicks of her taking her measurements on the computer, and the sound of the air conditioning.
I waited.
Then she said, "ok, get cleaned up, and I'll call the doctor."
When she walked out of the room I started crying. I had to go wait in the waiting room for what seemed an eternity before the doctor called back. She advised me that it was all gone. My body had done all of the work of removing the pregnancy, and I didn't have to go and have anything else done, except to go get blood work done to make sure my hormone levels were coming down.
I walked out to my car, and bawled. It was over. I drove to the other place, had my blood work done, and cried some more.
I went home and by then it was around 10:30 am, and Denise stayed until Aria was ready for her nap, then she left and I attempted to get some work done but ended up sleeping a good portion of the day.
I am ok though. I might catch myself tearing up when I have a thought, such as, "now I can drink, eat, or use whatever medicine I want without having to worry about anyone but myself…but I'd rather have the baby." But otherwise I've been able to be myself during the day. At night is a little harder, because my mind has time to wander and I think about things like how much I wish there was a tiny baby lying next to me on the bed, snuggled up against me like my little snuggle monster had when she was itty bitty. Things like that set me off, but Eric has been so sweet, patient and kind during all of this and will just hold me.
I know it's all part of God's plan. I'm hopeful that He will let me have another baby, but for now this is where He wants me, and what He wants me to see and experience. And I'm ok with that. I do really want a baby, and I was really excited about that one, but something else is in store for me in the mean time, and He has given me strength to endure this, as well as the most adorable little girl I could ever ask for.
He's also providing in the most unusual ways. Aria was sick last week with a really high fever. She'd never had one that high before and had no other symptoms. The pediatrician couldn't find anything wrong with her and just said to keep an eye on her and make sure she had fluids. So Aria is outwardly just fine, besides the fever that first day, but ever since last Wednesday she has been so incredibly cuddly and clingy. I think if this had not all happened, I wouldn't enjoy or appreciate her new found attachment to being held and carried. But now, I adore it. My little snuggle monster has reappeared, just slightly heavier and a little more vocal about her opinions, but has the most beautiful smile and can give me kisses now to tell me how much she loves me.
Thank you God for giving me your peace and comfort in trials, for surrounding me with more loving family and friends than I could have asked for, for one beautiful child already, and for using opportunities like this to teach me, grow my compassion, and for giving me an opportunity to be your light in the world.
I've been struggling. First I was torn to go back to work and leave my little bundle behind. But my employer has let me work from home a couple days during the week each week. Then I was torn because it was a struggle to manage my time at home… if I was playing with the baby I felt guilt over not working while technically on the clock, but if I set the baby down to play and ignored her to work I felt like a terrible mother. Then I struggled with just getting my brain in the right place after so much time away – it felt like my brain was in first gear and wouldn't shift.
With each of these I prayed for a lot of help, and asked my Bible study group to pray for me as well.
God took care of us. I keep learning that I don't need to worry, that He'll provide, whether that be money or time or whatever.
One day I was struggling with working at home and my boss called and asked for me to send over a presentation that I'd been working on for a week.. he said to just send him what I had. I had two slides with some pictures and no insightful information. I panicked. But then I prayed, "God, please put my brain in the right place, make me good at this kind of work again, and help me to finish this today."
All of a sudden I thought, Oh, I should get this information which will prove this point. Oh and I already have this data which will support this statement and all I need is to quickly go find this one thing which will sum up this slide nicely.
And it all came together. A week's worth of work all crammed into a couple hours in the afternoon and voila I looked productive at home (I was most afraid of losing my ability to work from home if they thought I couldn't handle it).
So that's how God helped me with the productivity aspect. And as for managing my time between the two, Aria now sleeps a good chunk in the middle of the day. I let her nurse and she'll fall asleep in my arms and I just leave her laying across my arms as I work on my laptop in my lap, on a pillow. It works pretty well, because I'm right there if she stirs, but I can focus on work for a good portion of the day, and give her attention when she wakes up. See, He provides.
Oh, and the best part – I was scheduled to travel a LOT during these two months. Something like four different trips each four days long. Not only would this have been time away from my precious family, but I was worried I was going to lose my milk supply from too much stress and not enough opportunity to pump. But it was all cancelled!
It has all worked out so well. They will let me continue working from home for the rest of the year, Eric and Aria bonded and learned each other's habits and schedules during my few days away, and God has helped me be able to be both productive and motherly while at home.
I'm so blessed.


text:
Visual minds adapt to achieve academic success
Robert Lawton sits on the edge of a stone fireplace, wired for a TV interview with his hands clasped calmly in front of him.
Robert is, by most accounts, a normal 12 year old. He loves the sound of the snow under his board when he gets going really fast, admires Danny Kass and says lunch is his favorite subject.
But the brain housed under Robert's neatly trimmed hair works a little differently than most, says Dr. Cheri Florance. His is a Maverick Mind, one with highly developed visual abilities and underdeveloped verbal ones. Although that brain endows him with certain talents in analyzing images, it hasn't always served him well in the classroom, where lecturing, note taking and writing all rely on verbal capabilities.
Robert and his family's frustration peaked almost two months ago when they realized that hours of studying weren't translating into improved grades. A family friend referred them to Florance, a brain scientist who specializes in reengineering Maverick Minds for success in a heavily verbal society.
Robert can convincingly describe the tools he has learned from Florance's training in several takes for both news and production company cameras. In addition to two news interviews, today Robert is the focus of a couple of promotional B-rolls.
'"It gives me a zoom lens so I can focus on what the teacher is saying,'" he says.
Before his interview, Robert and his sister Elizabeth demonstrated some of the tools that Florance has developed to reengineer a visual mind toward verbal communication. In one exercise, the siblings filled in song lyrics to the Diana Krall tune '"Peel Me a Grape.'" After that, they found hidden pictures in an illustration and worked on a memory exercise.
For that activity the two took a standard sheet of printer paper, divided it into four squares and filled each with what they could remember from activities they conducted weeks ago.
'"It's just incredible to watch 'em,'" says their mother. '"See how quickly they can whip through and find those hidden pictures.'"
Mom has been thrilled with Robert's progress in the seven weeks since he started Florance's program. She saw progress within the first hour that the family started running through the exercises.
The same cannot be said of Florance's own son, Whitney, who is the inspiration for Florance's research on brain disorders. Florance noticed problems with her third son as early as infancy, and doctors eventually labeled the uncommunicative and tantrum-prone child as autistic.
Although Whitney seemed to fit the description of an autistic, his mother refused to accept the prognosis such a diagnosis entailed. A PhD in speech-language pathology and psycholinguistics who had pioneered research for children and adults, she chose to focus her research on her son.
'"I decided that if I could help stroke patients, then I could help my own son,'" Florance said.
'"I kept steering my clinical practice in that direction as more people kept coming.'"
What she learned in her research was that some people diagnosed as ADHD or autistic actually possesses Maverick Minds.
'"It's an entirely different group of people,'" she says. '"They are often hidden within these larger groups because the symptoms can be exactly the same.'"
Autism is a spectrum disorder that affects communication, social interaction and behavior, according to the website of the Autism Society of North Carolina. Although the diagnosis has existed for 50 years, little is known about what causes the condition, which often has a range of manifestations.
Several treatment options exist for those diagnosed as autistic, from rigorous behavior modification to the 'do nothing' acceptance of autism as a different way of thinking proposed by some autism advocates. Almost all autism treatment methods are controversial to some degree.
Judy Smith-Meyers, a parent advocate for the North Carolina Autism Society, says it is more likely that autistics get misdiagnosed as something else. Nonetheless she acknowledged that incorrect diagnoses of autism occasionally occur.
What separates a Maverick Mind from the psychiatric condition of autism is the way it is diagnosed, Florance says. Autistics must be labeled as such by psychiatrists who observe them over time. In comparison, Florance administers standard tests to benchmark levels of visual and verbal intelligence. Those who score very high on visual intelligence and low on verbal intelligence qualify for her therapy.
That therapy trains the mind to do well in school, like warm-up exercises for a runner. The singing exercises focus verbal abilities and memorization. In addition to the Krall song, the Lawton children repeated rhymes from more complicated tunes.
By finding the hidden pictures, the kids worked on focusing their visual abilities to hone in on specifics. The four boxes '— that's a memory exercise.
Lawton's thesis about Maverick Minds struck Robert's mom like a thunderbolt, not only because of her son, but also because she noticed some of the same tendencies in her own life. The former engineer and current executive seemed to navigate the corporate world well, but once she got home and took off her watch, time started slipping away from her. She would lose hours running errands and keep her husband and family waiting.
Several of Florance's first patients were similarly high-achieving medical and law school dropouts who came to her for help focusing their intelligence. She learned from the less impaired patients how to help her son.
'"Whitney's brain was so damaged that it took years for him to recover,'" she says.
But recover he did. Whitney and his older brother Will are accompanying their mom on this business trip to Winston-Salem. They both study chemical engineering at Manhattan College; Whitney's a sophomore and Will is a senior.
Those without access to the press releases would have a hard time determining which of the brothers was ever diagnosed with a communication disorder. Whitney is more affable than his serious brother, and more eager to put the circumstances of this visit behind him.
'"It was like watching a TV, but it was on mute,'" Whitney says about his early years. He still struggles sometimes, but works hard to maintain good grades.
'"It made me really humble because I had to just sit there and do so much more work than other kids to get the same result,'" he says.
He spent some of his elementary years in special education classes but went mainstream in the sixth grade. By ninth grade no one remembered that Whitney had ever studied in special classes.
'"I like to do all the usual college things,'" Whitney says. '"I hang out with friends, walk in Central Park and I like meeting new people, if you know what I mean.'"
Florance said that Will, the Manhattan College senior, proved instrumental in helping his younger brother get better. Will has worked in the family therapy business in some capacity since he was about six and plans to continue after he graduates.
'"I feel like I've been very privileged, because not only was my mother this amazing doctor, but also my brother was very sick for a while,'" he says. '"Growing up it was sort of all encompassing.'"
Despite that, he never resented working with his brother.
'"I mean, it was like, 'I love the kid, so we're going to get through this','" he says.
For kids, family involvement is key to the success of the program. The Lawtons are exemplars of such an approach.
'"We help structure the program around the family,'" Will says. '"It usually ends up strengthening the family's bonds and they start restructuring themselves. Once you start the program, you start to see the world in a whole new way.'"
To comment on this story, e-mail Amy Kingsley at firstname.lastname@example.com.

subset: commoncrawl


text:
Erin & Jack's ICA Boston museum wedding is on newsstands everywhere in The Knot! 😍 These superstars earned themselves a 3 page spread - they planned out every little detail from the menu, to their vendor dream team, to the best dance floor jams! ⚡ The cherry on top of a wedding day is getting published - but I'd say this is the whole banana split! 🙏🏻
Check our their wedding blog here and the full magazine spread here!


text:
We believe Jesus came to proclaim good news to the poor, and has chosen the poor to be rich in faith and to inherit the kingdom. Our approach is very simple, and can be adopted almost anywhere:
Go to where the poor are
Jesus promises that the poor will always be with us. In most cities, the poor have access to mercy ministries like homeless shelters, soup kitchens, food pantries, etc. Beyond this, every city has its vulnerable neighborhoods.
Be present in these spaces. Walk your dog around the neighborhood park. Volunteer at a hurting school. Simply show up.
Get to know someone
On the surface, the marginalized have several material needs and wants. But when we engage relationally, we discover the humanity behind the poverty.
Start a conversation with someone who is different than you. Ask their name, where they're from. Listen to their story. This is a launch-pad to friendship, which is often the very thing people are desperate for.
Ask someone how you might pray for them. Most people are willing, if not eager, to receive prayer.
Share the gospel
We so often bypass the good news of Jesus and get right to material help.
But Jesus' message was first good news to the poor. If a person is open to prayer, they may be open to hearing the gospel. Share a passage of scripture, or your personal testimony. The important thing is bringing Jesus into the conversation.
Love consistently
Whether or not someone responds to the gospel, continue to love them. Pray for them. Spend time with them. Regardless of the spiritual outcome of our efforts, love is the end, and the ultimate measure of our effectiveness.