I'm having a really hard time right now. With everything.
I'm not even sure what's bothering me the most. All I know is that a heaviness has settled on me, and I can't seem to wriggle out from under it.
Part of it is definitely work, and total exhaustion after trying to squeeze work in between all the many unusual things we've had going on since Christmas. Writing isn't the kind of work that can just be done any time. So many things have to be right, including focus and mood, and moreso than that, I have to have time.
I've been trying to push through these last few days and finish a big project, and so far I haven't succeeded, despite throwing everything I have at it. I'm just exhausted, irritated, worried. I need to finish this project. I really freaking need to, and I also really need a BREAK.
Ugh! I don't understand why God keeps throwing all this at me. I'm TIRED, and I'm not a superhero! Here's what it's been like since December: Weekend of the 18th - Christmas w/ my mom's family, out of town; 21st - Headed to hubby's family's Christmas, several states away; 27th - Ev's eye shows its first signs of infection/redness/whatever as we head from TN to LA for the birth of my sister's first child; January 18 - work conference - ulcer appears; February 7 - We are in crisis mode w/ Ev's eye - commence traveling 2.5 hours away every other day to check on ulcer; somewhere around the 25th - second opinion in Philly - can you say road trip w/ a toddler?; first week of February (I think??) - mass confusion over what to do w/ eye - no work is being done; last week - finally settle on a plan for eye.
The funny thing is, I think I just totally botched the timeline above. I'm so crazy I hardly know what month it is! I don't know when what happened ~ ARGH. This is what's wrong with my life right now.
Even typing that out makes me feel so stressed I don't even want to keep blogging.
The chemical pregnancy is really weighing heavy on my heart. I think it's also messed up my hormones some, because I've been sad every night for the last few nights.
I'm still stressed Ev's eye won't heal and he'll end up having to have it sewn shut. Stressed that if we go to Boston it will be a bad experience w/ Ev being the age he is.
We've recently realized Ev seems behind in speech, and that's pretty upsetting since hubs and I are both very language-oriented, fairly articulate (believe it or not), writers, etc.
Have moved Ev's ear surgery up to this summer, b/c we're doing a smaller surgery w/ less anesthesia, which requires less than 2 hours under, total, and very light anesthesia, thereby enabling us to put the 'big' surgery for his ear off until about age 6. This one will mostly get the ear off Ev's face, so he doesn't get teased too much in the meantime.
Need to buy a house before August.
Worried about getting preggo the second time and not having a problem (chemical pregnancy, GHS, etc).
Really need to finish work project!!!
I was going to say more but computer is dying. Yeah- this is where I am right now.
Just sad and tired. :(
Friday, February 22, 2013
Fifty percent healed!
We found out Wednesday that Ev's corneal ulcer is 50 percent healed! How awesome is that? We're keeping on keeping on, with another checkup March 1.
If you're interested keeping on keeping on involves using Vigamox drops and some ointment I think is called Bactrin. Probably spelling that wrong. For Ev, this is the magical combination. We're also using Refresh PM sensitive gel once an hour.
If you're interested keeping on keeping on involves using Vigamox drops and some ointment I think is called Bactrin. Probably spelling that wrong. For Ev, this is the magical combination. We're also using Refresh PM sensitive gel once an hour.
Wednesday, February 20, 2013
Fast-forward...
The day after my last post, we went to our regular cornea doctor in the big city 2.5 hours away, for an appointment in which we'd planned to meet the tarsorrhaphy surgeon and schedule the procedure. DH and I had prayed and prayed, but we just did not feel comfortable. The appointment was a mess. First off, Ev had just woken up from his nap when we pulled him out of his car seat and took him into the office. We had a different nurse that day and when he fully woke up, he flipped out. Like, seriously flipped out. If he'd been an adult you'd have thought he was having a psychotic episode. He thrashed, cried, jumped, and was either trying to get into my arms or trying to get out of them. Honestly it was pretty alarming, because he's never done anything like this ever before. Retrospectively, I like to think Ev was making it impossible for us to sit down at talk with Dr. B about the procedure, thereby making it impossible for her to talk us into it, because that's exactly what happened. We didn't get a moment with her in which Ev wasn't totally losing his shit, and by the time he calmed down she had clearly moved on to other patients and the surgeon came in to talk to us. The whole thing was very haphazard, largely because of Ev but also because Dr. B always seemed hurried and eager to get away from us. The surgeon made the egregious error, in a conversation about how long the tarsorrhaphy had to remain in place, of proclaiming that if he never thought it ought to be taken 'down' (number of stitches reduced to open the eye further), then he just never would agree to do it! He would leave Ev's eye shut forever if that's what he thought was best. He didn't care what we thought. Um, yeah, we could tell he didn't work with children and their parents very often, because guess what? I'm boss!
Dr. B wandered in around this time and just cooled her heels while her co-worker acted horribly unprofessional, including bashing some other doctors we'd consulted - and not just bashing, either. He did the most unprofessional bash job we've ever heard, and we've heard doctors bash each other a lot, because we see so many specialists.
Eventually a resident wandered in, presumably looking to get a view of how NOT to treat a family with a small child, and we all agreed that DH and I did not feel comfortable and should see yet another doc for a third opinion. We had little hope for the new doc, as she was an acquaintance of Dr. B.
I went to the car and sobbed, not only unhappy with the tarsorrhaphy and putting Ev under again, but also unhappy that we didn't have a positive, guiding force to carry us through this hard decision.
I decided that night that if I was going to give Ev the tarsorrhaphy against my better judgment, I would do it only after doing everything else. I stayed up until 2 a.m. e-mailing every specialist I hadn't consulted, and was able to consult Miami, Baltimore, Boston, and Atlanta within the next 12 hours - a true miracle. Somewhere during this time, Dr. Colby in Boston helped us get in touch with Dr. Joseph at the Boston Foundation for Sight, and we started talking about a PROSE lens in place of the tarsorrhaphy option.
When we saw Dr. F in the big city Wednesday (the third opinion Dr. B had set up for us), the stars aligned and we LOVED her. I then talked to Dr. J in Boston and it was decided that Dr. F and Dr. J would work together on our little Ev.
Dr. F prescribed some new drops and oointment that, since last week, seem to have almost healed Ev's ulcer. As soon as it's healed, we can go to Boston and get a PROSE lens to help 'maintain' Ev's eye. We are about to leave the house now for a check up with Dr. F, and we hope and pray she sees as much progress in his eye as we do. No tarsorrhaphy! That's what I'm hoping for. But now if they suggest it, we'll do it, because we trust Dr. J and Dr. F - which is a major blessing.
In other news, I had a chemical pregnancy this week, so that's another thing to blog about... :(
Dr. B wandered in around this time and just cooled her heels while her co-worker acted horribly unprofessional, including bashing some other doctors we'd consulted - and not just bashing, either. He did the most unprofessional bash job we've ever heard, and we've heard doctors bash each other a lot, because we see so many specialists.
Eventually a resident wandered in, presumably looking to get a view of how NOT to treat a family with a small child, and we all agreed that DH and I did not feel comfortable and should see yet another doc for a third opinion. We had little hope for the new doc, as she was an acquaintance of Dr. B.
I went to the car and sobbed, not only unhappy with the tarsorrhaphy and putting Ev under again, but also unhappy that we didn't have a positive, guiding force to carry us through this hard decision.
I decided that night that if I was going to give Ev the tarsorrhaphy against my better judgment, I would do it only after doing everything else. I stayed up until 2 a.m. e-mailing every specialist I hadn't consulted, and was able to consult Miami, Baltimore, Boston, and Atlanta within the next 12 hours - a true miracle. Somewhere during this time, Dr. Colby in Boston helped us get in touch with Dr. Joseph at the Boston Foundation for Sight, and we started talking about a PROSE lens in place of the tarsorrhaphy option.
When we saw Dr. F in the big city Wednesday (the third opinion Dr. B had set up for us), the stars aligned and we LOVED her. I then talked to Dr. J in Boston and it was decided that Dr. F and Dr. J would work together on our little Ev.
Dr. F prescribed some new drops and oointment that, since last week, seem to have almost healed Ev's ulcer. As soon as it's healed, we can go to Boston and get a PROSE lens to help 'maintain' Ev's eye. We are about to leave the house now for a check up with Dr. F, and we hope and pray she sees as much progress in his eye as we do. No tarsorrhaphy! That's what I'm hoping for. But now if they suggest it, we'll do it, because we trust Dr. J and Dr. F - which is a major blessing.
In other news, I had a chemical pregnancy this week, so that's another thing to blog about... :(
Sunday, February 10, 2013
In which I'm angry, bitter, and ungrateful
I'm so angry right now. I don't want to be, but I am. What I want to be is grateful for our many blessings. Instead I just want to punch something. Or someone. Preferably someone in a white lab coat.
I'm not sure how gathered this post is going to be, because I really need to let it all out so I can be fresh for our tarsorrhaphy consultation tomorrow. So be warned. This might just end up being a bunch of ranting.
I just don't feel peaceful or happy about the tarsorrhaphy. For one, it follows three general anesthesia procedures Ev has had which were not strictly necessary.
He was put under for a 'minor' heart procedure in November 2011 at 2.5 months old; his heart worked fine but he had a double aortic arch that was forming a ring around his esophagus and trachea; we were told it was better to go ahead and fix it to prevent any long-terms problems with his trachea. First he had a CT scan, necessary for the surgery, so we subjected him to a huge amount of radiation that increases his risk of childhood cancer. I hate that we had to do that, and I will always hate it with my whole heart.
The surgery was a miserable experience, and I still want to punch the nurses who wouldn't even let me sneak a peek at him during the night when he was in the CICU, and I was staying right next door in a family room. I don't know when I'll stop being furious about that, but trust me, it won't be tonight. Those visitation rules were arbitrary, made even more so by the fact that a few months after Ev's surgery, the CICU (as well as the NICU and the regular ICU) all became completely open, with parents allowed to literally live in the room with their sick kids. But because we were a few months early, I will always have to live with that memory of having to leave my son writhing on a huge hospital bed with a tube in his throat, crying without sound and surely wondering where mom was. That makes me want to fucking hit someone. The visitation rules were so arbitrary, and I begged so many nurses to let me come peek in on him. It was Ev's only night in the CICU, so it's not like we needed to get used to being apart. They could have made an exception, and beforehand, they had told me that they would - but the head nurse that night was a stickler. Fucks to you, (redacted) CICU staff. You will never get a card from me.
The next time we had to put Ev under was in February 2012, for a MRI, a procedure adults don't have to be put under for. That makes it all the more frustrating that my child, vulnerable to GA and still developing, did have to be put under! Fucks to you, people who can't make a speedier MRI machine and people who can't make anesthesia that won't rot my child's developing brain. I hope you sit on a tack or even a handful of them. After the heart hell, I was petrified for the GA for the MRI, and the effects on Ev were very minimal, presumably because no one actually hurt him. Our stupid hospital did adhere to the no parents in the recovery room rule, so by the time they let me back there, I could tell Ev had been sobbing on the table by himself for a while, something we don't do because we don't believe in cry-it-out and basically practice attachment parenting. So fucks to you, recovery room staff. Thanks for once again making me go against my basic child-rearing beliefs, and for an arbitrary reason at that. I hope you sit on a big, fat tack.
The MRI found that Ev had a tethered spinal cord, a very minor spinal issue, but one that could ultimately damage his bladder nerves if left uncorrected. (Allow me to point out that the surgery itself can cause the spinal cord to become re-tethered, and to check for this, Ev has to have a big tube shoved up his penis for 45 minutes every year for the next few years. Oh, the fun). The surgery went very smoothly and so did the recovery, but the idiot nurses kept Ev away from me for almost two hours after recovery because there was no one to wheel him upstairs to where I was waiting! By the time he got to me, they'd had to give him a narcotic pain med because he was inconsolable and because of that they had to give him oxygen. Narcotic pain med made him crazy and we almost had to give him morphine to keep him from freaking out more. Luckily, we learned narcotics = hell during the heart surgery, so we stuck to our tylenol and with a little prayer he eventually stopped crying. But still. Imagine if I could just push Ev upstairs myself as soon as he was ready to leave recovery! Novel, right? The nurse who brought him back to me told me to pat him on the butt, about two inches from his fresh incision, because that would make him feel better. I told her I didn't want to hurt his wound, and she said he must like it because he wasn't crying when she did it; he was doped up on Demerol and that was before it started making him crazy. Thanks for telling me my business, bitch who kept my child for two hours too long. Go sit on a really sharp tack.
After our son had been under GA three times before his first birthday, I came upon this gem: http://www.webmd.com/parenting/baby/news/20120820/anesthesia-may-harm-childrens-brains
It basically says GA will likely give Ev language and reasoning difficulties. Um, because as the son of two writers he's not going to need his language skills?! Right? Fuck 'em! Maybe he'll be good at math instead (NOT).
I'll have you know, NO ONE mentioned anything about brain development and GA to us, EVER, not one single time. And for not mentioning it, I hope they sit on something bigger and sharper than a tack. Seriously, even thinking about this makes me sick. It makes me want to punch God right in the nose. It isn't fair! It isn't right! What world am I living in? This one is shit! My kid already has to look funny and now he gets to have his intelligence stolen?
(Obviously I don't really think Ev will be unintelligent, and I think he's beautiful, too, but this is my blog where I get to rant and say what I want).
If Ev loses intelligence because of GA, I will want to kill someone. (NO I won't really kill anyone, of course). I just don't think that I can handle that!
He has so many physical handicaps, he really needs his brain! Anyone suggesting I put him under GA is threatening his future. I'm sorry, but that's how I see it. I don't care how great a doctor they are. If they've never heard of this research and don't help me avoid GA, they can go sit on a motherfucking tack.
I actually just looked the research up because I wanted to refresh myself on it, hoping maybe it would be 'better' than I remembered. Instead it's worse.
Ev is supposed to have surgery next summer to fix his ear and surgery when he's five to install his BAHA, and more and more surgery! I HATE IT!!!!!!!!!!!!!
Didn't hear me?
I EFFING HATE IT.
Unless you've been in my shoes, you don't know how much!
I don't want this stupid tarrhowever the hell you spell it! I just don't!
I'm not sure how gathered this post is going to be, because I really need to let it all out so I can be fresh for our tarsorrhaphy consultation tomorrow. So be warned. This might just end up being a bunch of ranting.
I just don't feel peaceful or happy about the tarsorrhaphy. For one, it follows three general anesthesia procedures Ev has had which were not strictly necessary.
He was put under for a 'minor' heart procedure in November 2011 at 2.5 months old; his heart worked fine but he had a double aortic arch that was forming a ring around his esophagus and trachea; we were told it was better to go ahead and fix it to prevent any long-terms problems with his trachea. First he had a CT scan, necessary for the surgery, so we subjected him to a huge amount of radiation that increases his risk of childhood cancer. I hate that we had to do that, and I will always hate it with my whole heart.
The surgery was a miserable experience, and I still want to punch the nurses who wouldn't even let me sneak a peek at him during the night when he was in the CICU, and I was staying right next door in a family room. I don't know when I'll stop being furious about that, but trust me, it won't be tonight. Those visitation rules were arbitrary, made even more so by the fact that a few months after Ev's surgery, the CICU (as well as the NICU and the regular ICU) all became completely open, with parents allowed to literally live in the room with their sick kids. But because we were a few months early, I will always have to live with that memory of having to leave my son writhing on a huge hospital bed with a tube in his throat, crying without sound and surely wondering where mom was. That makes me want to fucking hit someone. The visitation rules were so arbitrary, and I begged so many nurses to let me come peek in on him. It was Ev's only night in the CICU, so it's not like we needed to get used to being apart. They could have made an exception, and beforehand, they had told me that they would - but the head nurse that night was a stickler. Fucks to you, (redacted) CICU staff. You will never get a card from me.
The next time we had to put Ev under was in February 2012, for a MRI, a procedure adults don't have to be put under for. That makes it all the more frustrating that my child, vulnerable to GA and still developing, did have to be put under! Fucks to you, people who can't make a speedier MRI machine and people who can't make anesthesia that won't rot my child's developing brain. I hope you sit on a tack or even a handful of them. After the heart hell, I was petrified for the GA for the MRI, and the effects on Ev were very minimal, presumably because no one actually hurt him. Our stupid hospital did adhere to the no parents in the recovery room rule, so by the time they let me back there, I could tell Ev had been sobbing on the table by himself for a while, something we don't do because we don't believe in cry-it-out and basically practice attachment parenting. So fucks to you, recovery room staff. Thanks for once again making me go against my basic child-rearing beliefs, and for an arbitrary reason at that. I hope you sit on a big, fat tack.
The MRI found that Ev had a tethered spinal cord, a very minor spinal issue, but one that could ultimately damage his bladder nerves if left uncorrected. (Allow me to point out that the surgery itself can cause the spinal cord to become re-tethered, and to check for this, Ev has to have a big tube shoved up his penis for 45 minutes every year for the next few years. Oh, the fun). The surgery went very smoothly and so did the recovery, but the idiot nurses kept Ev away from me for almost two hours after recovery because there was no one to wheel him upstairs to where I was waiting! By the time he got to me, they'd had to give him a narcotic pain med because he was inconsolable and because of that they had to give him oxygen. Narcotic pain med made him crazy and we almost had to give him morphine to keep him from freaking out more. Luckily, we learned narcotics = hell during the heart surgery, so we stuck to our tylenol and with a little prayer he eventually stopped crying. But still. Imagine if I could just push Ev upstairs myself as soon as he was ready to leave recovery! Novel, right? The nurse who brought him back to me told me to pat him on the butt, about two inches from his fresh incision, because that would make him feel better. I told her I didn't want to hurt his wound, and she said he must like it because he wasn't crying when she did it; he was doped up on Demerol and that was before it started making him crazy. Thanks for telling me my business, bitch who kept my child for two hours too long. Go sit on a really sharp tack.
After our son had been under GA three times before his first birthday, I came upon this gem: http://www.webmd.com/parenting/baby/news/20120820/anesthesia-may-harm-childrens-brains
It basically says GA will likely give Ev language and reasoning difficulties. Um, because as the son of two writers he's not going to need his language skills?! Right? Fuck 'em! Maybe he'll be good at math instead (NOT).
I'll have you know, NO ONE mentioned anything about brain development and GA to us, EVER, not one single time. And for not mentioning it, I hope they sit on something bigger and sharper than a tack. Seriously, even thinking about this makes me sick. It makes me want to punch God right in the nose. It isn't fair! It isn't right! What world am I living in? This one is shit! My kid already has to look funny and now he gets to have his intelligence stolen?
(Obviously I don't really think Ev will be unintelligent, and I think he's beautiful, too, but this is my blog where I get to rant and say what I want).
If Ev loses intelligence because of GA, I will want to kill someone. (NO I won't really kill anyone, of course). I just don't think that I can handle that!
He has so many physical handicaps, he really needs his brain! Anyone suggesting I put him under GA is threatening his future. I'm sorry, but that's how I see it. I don't care how great a doctor they are. If they've never heard of this research and don't help me avoid GA, they can go sit on a motherfucking tack.
I actually just looked the research up because I wanted to refresh myself on it, hoping maybe it would be 'better' than I remembered. Instead it's worse.
Ev is supposed to have surgery next summer to fix his ear and surgery when he's five to install his BAHA, and more and more surgery! I HATE IT!!!!!!!!!!!!!
Didn't hear me?
I EFFING HATE IT.
Unless you've been in my shoes, you don't know how much!
I don't want this stupid tarrhowever the hell you spell it! I just don't!
Wednesday, February 6, 2013
Up and down. Repeat.
I've been up and down and back and forth about Ev's eye. I have some moments where I actually feel grateful ~ that we aren't living in a third-world country, or in 1700, where/when Ev could die from something like this. When we got home tonight I felt angry and disappointed. Leaving for the long trip to Philadelphia five days ago, I'd hoped for both a better long-term prognosis for his eye as well as a more palatable treatment plan for now.
The night I started this blog, Hubs and I fought some, both dealing with our feelings over the tarsorrhaphy. The next day, yesterday, we both admitted that we were hoping, with prayer and a lot of lubrication, the eye might heal on its own before surgery is scheduled (probably sometime next week).
All day today, in the car driving home, we discussed various options, and whether the tarsorrhaphy is truly the best/only plan. How frustrating it is that nerve growth factor drops seem to work but aren't available here in the U.S. and aren't approved by the FDA; if we did decide to order them from another country, could child services take Ev away from us, citing parental negligence or violation of some stupid FDA law? We talked about how maybe this serum that uses nerve growth factor extracted from a patient's blood could work, but Ev would hate to have his blood drawn. How if we offered our eyes to God, maybe one of us could lose an eye and Ev's eye would be healthy again. Whose eye would be more beneficial to Ev? Hubs' eye has better sight but mine is the exact same color as Ev's.
We discussed, again, what if any role breast milk played in staving off epithelial degeneration when Ev was a baby. How many times did I drop that into his eye, only to see the redness disappear within hours? Doesn't breast milk also contain nerve growth factor and that insulin growth stuff? (Yes.) Should we put that in his eye? What about colostrum? My good friend just had a baby. How inappropriate would it be to ask her for some colostrum (answer: very).
We got 4G on our Kindle Fire last night, so I read medical articles for hours in the car while poor Ev sat, bored, in his car seat, his eye looking redder than ever, the white spot still covering the entire pupil. It really breaks my heart that he can't see out of the eye right now. This whole thing breaks my heart, but especially knowing it could have been avoided if we'd known his cornea had no feeling and we should keep it lubricated at all times.
It's all just so frustrating and sad.
My sister is sending us some breast milk, which we think could maybe help between now and surgery. If his eye healed, we wouldn't have to do the surgery. True, the sugar in breast milk could invite infection, but we have strong antibiotics for that very purpose, and besides, breast milk has natural antibiotics. Wonder if we will actually have the balls to put it in his eye. We've done it so many times before, but that was before he had an ulcer. Maybe we should just order human growth hormone from overseas. Maybe if I wake up every hour or two to re-lubricate the eye tonight.
Maybe.
The night I started this blog, Hubs and I fought some, both dealing with our feelings over the tarsorrhaphy. The next day, yesterday, we both admitted that we were hoping, with prayer and a lot of lubrication, the eye might heal on its own before surgery is scheduled (probably sometime next week).
All day today, in the car driving home, we discussed various options, and whether the tarsorrhaphy is truly the best/only plan. How frustrating it is that nerve growth factor drops seem to work but aren't available here in the U.S. and aren't approved by the FDA; if we did decide to order them from another country, could child services take Ev away from us, citing parental negligence or violation of some stupid FDA law? We talked about how maybe this serum that uses nerve growth factor extracted from a patient's blood could work, but Ev would hate to have his blood drawn. How if we offered our eyes to God, maybe one of us could lose an eye and Ev's eye would be healthy again. Whose eye would be more beneficial to Ev? Hubs' eye has better sight but mine is the exact same color as Ev's.
We discussed, again, what if any role breast milk played in staving off epithelial degeneration when Ev was a baby. How many times did I drop that into his eye, only to see the redness disappear within hours? Doesn't breast milk also contain nerve growth factor and that insulin growth stuff? (Yes.) Should we put that in his eye? What about colostrum? My good friend just had a baby. How inappropriate would it be to ask her for some colostrum (answer: very).
We got 4G on our Kindle Fire last night, so I read medical articles for hours in the car while poor Ev sat, bored, in his car seat, his eye looking redder than ever, the white spot still covering the entire pupil. It really breaks my heart that he can't see out of the eye right now. This whole thing breaks my heart, but especially knowing it could have been avoided if we'd known his cornea had no feeling and we should keep it lubricated at all times.
It's all just so frustrating and sad.
My sister is sending us some breast milk, which we think could maybe help between now and surgery. If his eye healed, we wouldn't have to do the surgery. True, the sugar in breast milk could invite infection, but we have strong antibiotics for that very purpose, and besides, breast milk has natural antibiotics. Wonder if we will actually have the balls to put it in his eye. We've done it so many times before, but that was before he had an ulcer. Maybe we should just order human growth hormone from overseas. Maybe if I wake up every hour or two to re-lubricate the eye tonight.
Maybe.
Monday, February 4, 2013
Partial Tarsorrhaphy
I want to say so much more about this, but it's late and I'm tired. Basically we didn't know our son had an anesthetic cornea. I feel crazy that we didn't know, but the fact is, no one ever told us until it was way too late and he already had a neurotrophic ulcer. If we'd known, we could have kept it lubricated and (I think) kept it in good health. Now the eye has an ulcer right over the pupil, he's already probably lost some vision, and they're having to sew the eye partially shut to get the ulcer to heal. This means Ev will have to go under anesthesia for the fourth time in less than two years sometime in the next week, so they can do these stitches. We're left hoping that it heals quickly so the scar is minimal and we can start working on bringing the vision back up to snuff. Everyone seems pessimistic about how the scar will heal, and once again, I'm just sitting here not believing this. How is this happening to Ev? He already has very limited neck mobility when turning his head left; he has no hearing on that side, and now no vision.
This is me shaking my fist at the universe. I know God loves me enough that he can handle all my anger, and tonight there is a lot of it.
This is me shaking my fist at the universe. I know God loves me enough that he can handle all my anger, and tonight there is a lot of it.
Bye-bye normal, you were never really ours
I'm a big fan of mommy blogs, specifically the blogs of special needs moms, but I never considered starting my own until recently. Probably because I'd hoped - ridiculously, I'd hoped - that Goldenhar Syndrome wouldn't be a big part of my son's life.
Sure, he was born with one of his ears on his cheek, disconnected from the pipeline to the inner ear and lacking hearing; his jaw is too small on one side; he has some abnormal vertebrae in his neck; one of his pinkie fingers doesn't straighten all the way. Yes, since he was born I've heard the standard comments about having a 'special kid' and of course, I'm the first person to tell you how amazing he is. But in my mind he's always been totally normal. Just him. Nothing different about that, no more than anyone is different. He's not special because of these congenital issues. He's special because he's had his own taste in music since he was six months old, because he's always seemed to know exactly who he is and exactly what he wants. Because he can throw a ball better than some adults I know. Because he's hilarious and smart. His beautiful hair is special. His amazing smile is special. Having Goldenhar Syndrome does not make him special. So I didn't want to start one of these blogs. Maybe no mom does.
I remember when he was a little baby all the doctors saying we were in it for 'the long haul'. Seriously, I think four doctors told us that in the span of two weeks once. My son was tiny, and I think my husband and I just blinked - oblivious.
Ev was born by c-section at the end of a labor he didn't tolerate very well, and when my husband held him out to me, just long enough so I could brush my cheek against his smooth one, I don't think I noticed his ear. I noticed it in the recovery room, but I didn't care at all. I was overwhelmed by being his mother. He was perfect and glorious. My husband took the ear thing hard, and I remember thinking he had lost his mind. It was just an ear. What did that matter?
His face was remarkably symmetrical at birth, at least compared to now, so it looked like he'd been socked in the right cheek and maybe that cheek was a little swollen compared to the left one, and when he cried, the left side of his mouth didn't pull down like the right side did, but those were mini issues to me. I had my baby, my first baby, and I was floored.
Shortly after Ev's birth, my husband called our priest, very upset, and the priest came to the hospital. He was there by the time I started coming around more in the recovery room, and unreasonable though it may be, I still hold that against my husband. Turning my joyous occasion into a catastrophe worthy of calling the priest. I know this isn't fair - and for what it's worth, our priest is wonderful, and didn't do anything to make the experience negative - but I still feel that way.
The sky wasn't falling. It was just an ear, a slightly smaller cheek, a mouth that didn't turn down on one side. What did that matter?
The next day, at time when I was (somehow) alone in my hospital room with Ev, our pediatrician and another doctor came in and told me Ev was likely deaf in both ears, and that they thought he had Treacher-Collins Syndrome. The weird thing is, I don't remember how I felt. I guess I was devastated. I remember thinking Jim and I both love reading and Ev would never be able to enjoy books. We already had him a bookshelf full of books, even books for older kids, like our British copy of Harry Potter and the Philosopher's Stone.
Looking back at the records I now have of our time at the hospital where Ev was born, it's clear he was never really nursing well, and we should have gotten a lot more help than we did. But we were discharged at 48 hours, technically given a choice but basically urged out the door because of our lousy medical insurance.
We were re-admitted almost 48 hours later because, during a strangely intense crying spell, we gave Ev Mylicon and he slumped and turned blue. When we got to the ER, we found that his blood sugar was horrifyingly low, he was seriously dehydrated, and all that sucking he'd been doing on my breast hadn't been getting him anything, due to the differences with his mouth and his jaw. That was my first truly terrible Goldenhar mom moment. I hadn't been feeding my precious new baby, and I hadn't even known it? What could possibly be worse than that?
I remember I didn't want to hold Ev. I was so upset, so ashamed and so embarrassed, I wanted to withdraw from the world. They did a spinal tap to be sure his low blood sugar wasn't due to some rare metabolic problem, and I remember when they brought him back to me, they told me he'd done so well. The doctor was perky, young, well-educated, and clearly keyed up over her unusual patient and what to do with him. I wanted to punch her in the nose. My baby hadn't done well during a spinal tap. He'd probably been so dehydrated and malnourished he didn't have the energy to scream.
It didn't take too long for the nurses on the pediatric floor of our small-ish local hospital to realize all we were dealing with was a serious feeding issue. I remember my favorite one, M., trying to convince me that it wasn't my fault. "It's his fault," she said. "He's the one who won't eat, not you." I wanted to scream at her for blaming my poor, innocent child for not being able to eat. The nurses kept referencing his 'facial paralysis', and my husband and I would just look at each other, and when they left the room we would whisper, "What are they talking about? He has facial paralysis? No he doesn't."
It was there for anyone to see. We just couldn't.
Throughout that entire time period, from the day after his birth through our visit to the pediatric ENT about two weeks after, I kept our local doctor's clumsy diagnosis of deafness to myself. My husband wasn't taking things as well as I was, and I knew he would be devastated if I told him our son was deaf. Also, I could tell Ev's right ear was fine - it had been a little crumpled from birth - and a quick Google image search revealed that he did not, in fact, have Treacher Collins Syndrome. But I still remember putting my mouth on his head so he could hear the vibrations of my voice.
The next two months are a crazy blur. My baby blues came and went, but appointment after specialist appointment revealed one problem after another, and I could tell I wasn't myself. Post-partum hormones plus the insanity that is figuring out all the issues with a GHS baby had me tied in knots. I was a mess, and I knew it. Ev avoided a G-tube because I almost killed myself keeping him fed. I fought our way to a laryngomalacia diagnosis and we thickened his expensive donor breast milk with three different thickeners in an attempt to find a concoction that didn't cause permanent constipation. I screamed for a sleep study, and the doctor ordered one despite his own belief that Ev looked fat and healthy; whaddaya know, he had sleep apnea. A visit to the cardiologist revealed a heart defect associated with feeding and breathing difficulties. In November, a few weeks after I threw in the anti-antidepressant towel and filled a prescription for Wellbutrin, he had heart surgery and spent about a week in the cardiac ward.
Clearly, my baby had a lot of difficulties. I even had a wretched sheet of paper from the geneticist diagnosing him with 'multiple congenital anomalies', a phrase I remember felt like a knife straight through my heart.
We were living day-to-day, and all I wanted in the whole wide world was for it all to just be over. The long haul? Try the sprint. We were sprinting from one problem to the other, just trying to get there in one piece. The heart problem was fixable. The spinal cord was fixed. We didn't have to do the feeding tube. We didn't need the trach. We outgrew our need for reflux meds. We even got cleared of sleep apnea at six months when he outgrew the laryngomalacia.
What I remember most about those early days was Ev screaming from reflux. I remember his fussy little face, and how he had a permanent crease between his brows - congenital frown lines. I remember how ashamed and anguished I felt that my baby had had a spinal tap, a heart surgery, an IV in his precious, soft little head. How when he went to sleep I couldn't cuddle him because I had to put an apnea monitor on his toe and oxygen in his nose. How the doctors sometimes looked at me like I was stupid and other times seemed to wonder what I had done wrong to cause these issues, when in fact I spent my pregnancy double-filtering my water and avoiding freshly paved streets and plastic shower curtains.
I didn't want to be a Goldenhar mom. I just wanted to be normal.
I wonder sometimes how much sleep I lost crying over how Ev would find a girlfriend. He's a beautiful baby with traditionally handsome features. The right side of his face is attractive by any standard. He's so athletic and so smart. But when he was an infant, I spent countless hours worrying over what girls would think of him when he's older.
I don't remember anymore where I was or what I was doing, but Ev was still in infancy when I heard a loud voice in my head say, "She won't love him for his looks. She'll love him for his strength." That was the first time I heard God speaking to me loudly about Ev's GHS, and it definitely soothed my heart some.
In March of last year, things settled down, and finally normalcy was ours. No more reflux meds, no more apnea monitor, no more oxygen. We'd always had Ev in a sidecar off our bed, but at that point we started bedsharing - something I adored and still enjoy, even as we consider adding another family member sometime soon.
I pretended, for a few months, that Goldenhar Syndrome would be a backseat issue, one we only acknowledged when we went to a crowded area and put on Ev's hearing aid. (He doesn't wear it much at home b/c Ev's dad and I both work from home and do everything LOUDLY so he can hear it in his right ear; he's always been ahead in speech, so it seems to work).
His vertebrae are abnormal, but they're stable. Yes, he only has one kidney, but it works fabulously. We'll get his ear fixed on the outside and probably do a BAHA implant when he's five. His jaw will have to wait until the early teen years, but we can handle weird looks in the grocery store if we have to.
We'd been told Ev's left eye was normal, a rarity for GHS kids. Recently we've found out that's not true at all, and in a week or so we'll be sewing the eye partially shut. After so long in normal land, this has really hit me hard.
I'll write more about it soon, but for now, I hear Ev stirring in the hotel bed!
Sure, he was born with one of his ears on his cheek, disconnected from the pipeline to the inner ear and lacking hearing; his jaw is too small on one side; he has some abnormal vertebrae in his neck; one of his pinkie fingers doesn't straighten all the way. Yes, since he was born I've heard the standard comments about having a 'special kid' and of course, I'm the first person to tell you how amazing he is. But in my mind he's always been totally normal. Just him. Nothing different about that, no more than anyone is different. He's not special because of these congenital issues. He's special because he's had his own taste in music since he was six months old, because he's always seemed to know exactly who he is and exactly what he wants. Because he can throw a ball better than some adults I know. Because he's hilarious and smart. His beautiful hair is special. His amazing smile is special. Having Goldenhar Syndrome does not make him special. So I didn't want to start one of these blogs. Maybe no mom does.
I remember when he was a little baby all the doctors saying we were in it for 'the long haul'. Seriously, I think four doctors told us that in the span of two weeks once. My son was tiny, and I think my husband and I just blinked - oblivious.
Ev was born by c-section at the end of a labor he didn't tolerate very well, and when my husband held him out to me, just long enough so I could brush my cheek against his smooth one, I don't think I noticed his ear. I noticed it in the recovery room, but I didn't care at all. I was overwhelmed by being his mother. He was perfect and glorious. My husband took the ear thing hard, and I remember thinking he had lost his mind. It was just an ear. What did that matter?
His face was remarkably symmetrical at birth, at least compared to now, so it looked like he'd been socked in the right cheek and maybe that cheek was a little swollen compared to the left one, and when he cried, the left side of his mouth didn't pull down like the right side did, but those were mini issues to me. I had my baby, my first baby, and I was floored.
Shortly after Ev's birth, my husband called our priest, very upset, and the priest came to the hospital. He was there by the time I started coming around more in the recovery room, and unreasonable though it may be, I still hold that against my husband. Turning my joyous occasion into a catastrophe worthy of calling the priest. I know this isn't fair - and for what it's worth, our priest is wonderful, and didn't do anything to make the experience negative - but I still feel that way.
The sky wasn't falling. It was just an ear, a slightly smaller cheek, a mouth that didn't turn down on one side. What did that matter?
The next day, at time when I was (somehow) alone in my hospital room with Ev, our pediatrician and another doctor came in and told me Ev was likely deaf in both ears, and that they thought he had Treacher-Collins Syndrome. The weird thing is, I don't remember how I felt. I guess I was devastated. I remember thinking Jim and I both love reading and Ev would never be able to enjoy books. We already had him a bookshelf full of books, even books for older kids, like our British copy of Harry Potter and the Philosopher's Stone.
Looking back at the records I now have of our time at the hospital where Ev was born, it's clear he was never really nursing well, and we should have gotten a lot more help than we did. But we were discharged at 48 hours, technically given a choice but basically urged out the door because of our lousy medical insurance.
We were re-admitted almost 48 hours later because, during a strangely intense crying spell, we gave Ev Mylicon and he slumped and turned blue. When we got to the ER, we found that his blood sugar was horrifyingly low, he was seriously dehydrated, and all that sucking he'd been doing on my breast hadn't been getting him anything, due to the differences with his mouth and his jaw. That was my first truly terrible Goldenhar mom moment. I hadn't been feeding my precious new baby, and I hadn't even known it? What could possibly be worse than that?
I remember I didn't want to hold Ev. I was so upset, so ashamed and so embarrassed, I wanted to withdraw from the world. They did a spinal tap to be sure his low blood sugar wasn't due to some rare metabolic problem, and I remember when they brought him back to me, they told me he'd done so well. The doctor was perky, young, well-educated, and clearly keyed up over her unusual patient and what to do with him. I wanted to punch her in the nose. My baby hadn't done well during a spinal tap. He'd probably been so dehydrated and malnourished he didn't have the energy to scream.
It didn't take too long for the nurses on the pediatric floor of our small-ish local hospital to realize all we were dealing with was a serious feeding issue. I remember my favorite one, M., trying to convince me that it wasn't my fault. "It's his fault," she said. "He's the one who won't eat, not you." I wanted to scream at her for blaming my poor, innocent child for not being able to eat. The nurses kept referencing his 'facial paralysis', and my husband and I would just look at each other, and when they left the room we would whisper, "What are they talking about? He has facial paralysis? No he doesn't."
It was there for anyone to see. We just couldn't.
Throughout that entire time period, from the day after his birth through our visit to the pediatric ENT about two weeks after, I kept our local doctor's clumsy diagnosis of deafness to myself. My husband wasn't taking things as well as I was, and I knew he would be devastated if I told him our son was deaf. Also, I could tell Ev's right ear was fine - it had been a little crumpled from birth - and a quick Google image search revealed that he did not, in fact, have Treacher Collins Syndrome. But I still remember putting my mouth on his head so he could hear the vibrations of my voice.
The next two months are a crazy blur. My baby blues came and went, but appointment after specialist appointment revealed one problem after another, and I could tell I wasn't myself. Post-partum hormones plus the insanity that is figuring out all the issues with a GHS baby had me tied in knots. I was a mess, and I knew it. Ev avoided a G-tube because I almost killed myself keeping him fed. I fought our way to a laryngomalacia diagnosis and we thickened his expensive donor breast milk with three different thickeners in an attempt to find a concoction that didn't cause permanent constipation. I screamed for a sleep study, and the doctor ordered one despite his own belief that Ev looked fat and healthy; whaddaya know, he had sleep apnea. A visit to the cardiologist revealed a heart defect associated with feeding and breathing difficulties. In November, a few weeks after I threw in the anti-antidepressant towel and filled a prescription for Wellbutrin, he had heart surgery and spent about a week in the cardiac ward.
Clearly, my baby had a lot of difficulties. I even had a wretched sheet of paper from the geneticist diagnosing him with 'multiple congenital anomalies', a phrase I remember felt like a knife straight through my heart.
We were living day-to-day, and all I wanted in the whole wide world was for it all to just be over. The long haul? Try the sprint. We were sprinting from one problem to the other, just trying to get there in one piece. The heart problem was fixable. The spinal cord was fixed. We didn't have to do the feeding tube. We didn't need the trach. We outgrew our need for reflux meds. We even got cleared of sleep apnea at six months when he outgrew the laryngomalacia.
What I remember most about those early days was Ev screaming from reflux. I remember his fussy little face, and how he had a permanent crease between his brows - congenital frown lines. I remember how ashamed and anguished I felt that my baby had had a spinal tap, a heart surgery, an IV in his precious, soft little head. How when he went to sleep I couldn't cuddle him because I had to put an apnea monitor on his toe and oxygen in his nose. How the doctors sometimes looked at me like I was stupid and other times seemed to wonder what I had done wrong to cause these issues, when in fact I spent my pregnancy double-filtering my water and avoiding freshly paved streets and plastic shower curtains.
I didn't want to be a Goldenhar mom. I just wanted to be normal.
I wonder sometimes how much sleep I lost crying over how Ev would find a girlfriend. He's a beautiful baby with traditionally handsome features. The right side of his face is attractive by any standard. He's so athletic and so smart. But when he was an infant, I spent countless hours worrying over what girls would think of him when he's older.
I don't remember anymore where I was or what I was doing, but Ev was still in infancy when I heard a loud voice in my head say, "She won't love him for his looks. She'll love him for his strength." That was the first time I heard God speaking to me loudly about Ev's GHS, and it definitely soothed my heart some.
In March of last year, things settled down, and finally normalcy was ours. No more reflux meds, no more apnea monitor, no more oxygen. We'd always had Ev in a sidecar off our bed, but at that point we started bedsharing - something I adored and still enjoy, even as we consider adding another family member sometime soon.
I pretended, for a few months, that Goldenhar Syndrome would be a backseat issue, one we only acknowledged when we went to a crowded area and put on Ev's hearing aid. (He doesn't wear it much at home b/c Ev's dad and I both work from home and do everything LOUDLY so he can hear it in his right ear; he's always been ahead in speech, so it seems to work).
His vertebrae are abnormal, but they're stable. Yes, he only has one kidney, but it works fabulously. We'll get his ear fixed on the outside and probably do a BAHA implant when he's five. His jaw will have to wait until the early teen years, but we can handle weird looks in the grocery store if we have to.
We'd been told Ev's left eye was normal, a rarity for GHS kids. Recently we've found out that's not true at all, and in a week or so we'll be sewing the eye partially shut. After so long in normal land, this has really hit me hard.
I'll write more about it soon, but for now, I hear Ev stirring in the hotel bed!
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