what a long, strange trip it's been

yeah, no...this is not a post about the greatful dead. in fact, i'm not even a dead fan but i was looking through some cd's yesterday and i guess my husband has a couple of copies of that album and the title just seemed to fit the way i have been feeling the past week.

so, since my last post we have been discharged from the hospital. it was found on sunday that evan did not have an infection in his picc line afterall. the first blood culture was probably contaminated and gave a false positive. the second and third cultures grew absolutely nothing. now those that know me know that i'm not really all that in to god (in fact, i don't really know how i feel about god and religion...but that's another post for another time, i suppose) but i swear that there was some sort of divine intervention that lead us to the hospital for when evan had his seizures. and i am so, so thankful that we were there when it happened.

so we spent sunday night and the greater part of monday at the hospital, just waiting to get the all clear from the neurologist to go home. e had an eeg on monday morning and it came back normal, so we were told it as alright to go home. at first, evan was terribly cranky and just not himself. i was worrying that this whole episode had somehow changed him. and i was feeling sad about it. and worried. for those that don't know him, he is just the most laid back kid ever. he's always happy and cheerful and just the sweetest thing ever. seems like he got the very best qualities of both michael and i and shows those traits all the time. anyway, after 24 hours of not knowing who this child was, michael and i thought that maybe it was the increasae in the antiseizure meds that was causing the difference. so we called and spoke to the on-call neurologist about decreasing his dosage from 3ml's back to 2ml's, since the seizure were related to the fever he had. the doctor said to keep the 3 at night but to give him the 2 in the morning, so we took that to mean that we could change them both back to 2. and, sure enough, that brought our sweet angel back to his normal self. seriously, it has made all the difference in the world.

so we were able to enjoy our christmas together, at home, as a family. it was the greatest gift i have ever gotten. honestly. i know its silly to say, but i couldn't have gotten a more special gift. ever. i went from thinking that i was going to lose a child, to thinking that my child was going to be a different child, to having him back to himself and loving everyone and everything around him. and that was something that meant more to me than i could ever really put in to words.

a friend of mine once told me that once you have children you give hostages to fortune...and that they will age you in dog years. and boy, was she ever right.

oh, what a long weekend.

you know, the funny thing about this disease is just when i think we're out of the woods with something bad, something else happens.

on friday afternoon evan had a fever of 101.4. usually i'd just give him some tylenol and let it do its thing, but since he has the picc line any temperature over 100.5 means he needs a blood culture done in order to rule out infection. so i called sara (our wonderful hemo nurse) and let her know and she told me i should bring him in. i didn't realise this meant we would be admitted for at least 48 hours. picture me hearing this in the middle of a public hallway and starting to cry. i really need to work on this emotional shit.

so we are brought up to our room and the nurses take blood cultures and urine samples and start pre-emptive antibiotics. standard care, i suppose...and i'm still infusing him every 12 hours, so i am figuring we will just be here for the next couple of days and then be done. his cbc comes back and the nurse explains that his white cell count looks good and that she doesnt think he's fighting an infection, so we are probably going home on sunday.

the next morning after the shift change, the new nurse breaks the news that there is bacteria starting to grow in his culture, and that it probably means a 10 to 14 day stay here. dammit. it's christmas and we have an older son and what are we going to do? we're supposed to go out of town, but that can at least be put on hold for now. and i immediately start crying. again.

i manage to stop the tears rathar quickly and focus on the fact that my son isnt feeling well and needs to get better. his temp has been in the 101 to 103 range over the past 12 hours (even after having tylenol) and if he's going to be sick somewhere, i suppose this is just the right place.

fast forward about six hours to the scariest moment i have ever had in my life. michael, noah, evan and i ware playing in the playroom. i stepped out to run back to our room to grab e a snack and some milk and i come back to noah scurrying about putting on his shoes. he tells me that michael left with e because something is wrong with him. i figure this is noah jsut being dramatic, so i walk out calmly to go find them. michael is holding evan at the nurses station and when i get up to see him, evan's eyes are rolled up and to the left and his face (and lips especially) are blue.

my baby stopped breathing.

michael handed him to the nurse, who rushed him back to our room. she laid him on the crib, tilted his head back and gave him the breath of life. it took a few seconds, but he started to breathe on his own again and his color started to come back.

i am trying so hard to be a mother to both of my boys at this moment. the oldest one, who is bawling his eyes out because he just watched his brother stop breathing and turn blue. and the youngest one, who just stopped breathing.

and all i wanted to do was puke.

immediately after this happened, evan sat with michael and was just not himself. his eyes would only look to the left. he wouldn't respond to me when i called his name. all he would do is chew on a paci in a way that he never had done before. finally after about 10 minutes he was showing signs of getting back to normal.

when the nurses determined that he had a seizure, they paged his hemotologist and rushed him down for a ct scan. all within about 30 minutes the ct scan came back normal and showed no sign of hemmoraging in the brain. which, of course, is good. but it doesnt explain why in the hell he had a seizure.

so, after all the drama of the evening, michael told me to go home and rest. not that rest was really possible, but i still have a ton of shit to do. laundry to fold. presents to wrap and put under the tree. more crying to do. so i left. reluctantly, but i went.

about forty-five minutes after i got home, michael called and told me that evan had another seizure. same thing as before, but that he was alright. i threw my stuff back together, got int he car and made it all the way back to st. joe's in about 20 minutes.

when i got back, evan was all doped up on atavan and completely asleep. he looked so sweet, and all i could do was press my lips against his cheeks. and, of course, cry. he was moved to the picu where he was to spend the night. michael had me leave, so i drove three minutes down the road to my sister's house and spent the night there.

i came back to hear that evan had an uneventful night, and i was pretty thankful for that news. we spent the day wandering around the picu, seeing things i would prefer to not see again any time soon. eventually we were moved back to the observation unit where we started out on friday. the hemotologist came in and told us that there is no bacteria growing in evan's second blood culture, so they now believe that there is no infection in the picc line. but, since the ct scan showed that his hematoma had reabsorbed into his brain that we should be able to stop the factor and take the picc line out. if he still needs the antibiotics we can give those orally.

so, that is pretty much where we are at right now. except he still has a high fever. it was 103 about two hours after he was given tylenol. the fevers are worrisome, because they are what the doctor believes are causing the seizures. so here i sit, in a bed next to my baby, thinking about sleep but pretty sure it won't really come because i am scared out of my mind that his oxygen levels are going to plummet and they will have to get him breathing again. and then my mind drifts to the "what if" part...and i don't really need to be there right now.

but at least i'm not crying.

we're down to two!

well, i took e to the hemotologist on thursday morning for a factor level draw before i infused him. it was actually pretty cool, the nurse had me flush his picc line and draw his blood. never in my wildest dreams did i ever think this would be something i would do (or be sort of excited about) but it was sort of empowering. it's strange that these sort of milestones make me feel like i am helping evan and sort of defeating this disease.

anyway, his level came back at 51% after 8.5 hours between infusions, so the doctor said he could go to being infused once every 12 hours for the next week. we will go back for another early morning factor draw this coming thursday and if his levels look good we can hopefully go to once a day infusions. selfishly i am hoping for this because my husband and i are going out for our christmas date this coming saturday night and it would be nice to not have to be home by 9. although my mom, who will be babysitting, said that she would infuse evan...i think i would feel better if she didnt have to. only because its the night infusion and i do it while he is laying in his crib and its dark. well, i use a flashlight but whatever.

you know, this whole ordeal has really put a spin on me. i have noticed that i still have trouble eating. my stomach hurts a lot and my mind is always going. i am having trouble sleeping too. but evan can hardly even tell that something so scary happened to him. and he doesn't even really try to play with his picc line. he is one seriously amazing child.

pictures

here are some pictures of evan after he had his eeg. they had to put glue all over his head to stick the little things to. i wanted to get a shot while he was all gussied up, but i sort of forgot. plus i was thinking the flash could mess up his test. so i didnt take any.



here are a couple of pictures of evan and i in the picu. this is after i had about three hours of sleep in a hospital chair the night before. we were up at 5:25 that morning so that evan could have his second ct scan. he was utterly exhausted. i am actually showered and clean thanks to my mom staying with e while i ran down the street to my sister's house to shower.sdf
this picture is typical of how e was feeling while he was stuck in the picu. he was tired and annoyed and just wanting to sleep. the lights in there are so bright that they don't really lend to being able to get comfortable and dozing off to sleep for any real period of time.

this is my mom with evan. she was such an enormous lifesaver to me while i was in there with him. she came home immediately from her thanksgiving trip when i called to let her know that e was bleeding in his head. she was in my hospital room the next morning at 8:30 and stayed with me until my husband arrived that late afternoon so that i wouldnt be alone and would have some help with my little one. she also came back and did it again on thanksgiving day. she stayed with e while i went home to visit with the company that was at our house and so that i could shower and get refreshed. i owe a lot to my mom. she's really awesome.


here is e trying to snuggle up with his favorte blanket. he was dying to find a comfy spot to sleep. even if it meant that he was sitting up in his crib.

and here's evan looking sweet and utterly exhausted. all the poking and prodding really did him in. but he is just the sweetest thing on the face of the earth and he just kept smiling and trying to play and be himself, despite the hell that he was going through. i mean, not only is he being pulled at by doctor's and nurses, and poked more times than i was either time i gave birth...but he has an inner head bleed. that has to cause some decent amount of pain in there. and he's just as sweet and as lovely as ever.


here are the views of e's arms after they tried (unsuccessfully) to put his picc line in with the iv team and his doctor. his right arm doesn't look near as bad as his left does. two days later the radiology team was able to get the picc line put in to his right arm.


and here are the final pictures from our stay. these show e's third iv. this one was a bitch to get in...it took four different nurses, five pokes and over an hour to do. poor little boy has difficult veins to find...and he's so small, so his veins are small. and he is fair skinned, which the nurses told me makes it more difficult to find veins too. this was e's second foot iv, and this time they placed a diaper under the foot so that he absolutely could not walk with this one. we were running out of room to poke him, and losing this iv would not be good at all. so, since he couldn't walk evan wanted nothing but to be pushed all around the hospital floor either in the wagon we used upstairs or in his stroller. this picture was taken shortly before we went to radiology, where the picc line was placed. i was a nervous wreck with him in there. he was under strong sedation, and i knew that his veins were small and close to his arteries (the reason they could not place the picc in the picu the other day). i was completely nervous about an accident happening and something hitting the artery. i am so thankful for the team of doctors that placed the line in him. these people are amazing.

man, what an insane last few days we have had. on tuesday morning, evan woke up cranky and not himself. noah noticed his facial twitching had come back (which had happened a couple of times the week before, but i thought was just a normal twitch) and i could tell that he wasn't quite right. i put him in his highchair and he couldn't lift his milk and wouldn't eat. i took him to the hospital, and on the way his head was twitching in his car seat while his arms bent up at the elbows and him hands laid down looking atrophied. i would periodically call his hame in the car and his eyes would look at me in the mirror, so i felt a little less scared when he did that.

when we arrived at the hospital evan could not lift his head and his shirt was covered in drool. i rushed him in to the pediatric emergency room and within two minutes evan was in a room and the nurses were working on getting advate in him. he was very upset and it took what seemed like a lifetime to get an iv in him. it was probably more like 10 minutes or so, i don't really remember. i do remember the first nurse tried three times, and then she brought in someone else and she got it on the first try. holding him down for all of this was insane. he is pretty little, but so strong.

within a minute or so after the infusion, evan's face was back to normal. he could hold his head up again and open his eye. he was brought in for a ct scan a few minutes later. it took maybe 10 minutes for the results to come back, and the er doctor came in to let me know that there was bleeding in evan's head. he has what is called a subdureal hematoma, which means a bleed in between his brain and the skull. he was admitted into the pediatric icu and we went up there maybe 20 minutes after the doctor told me of the bleed.

once we got to the picu we had all sorts of nurses and doctors in to look at him. we had a team come in and give him an eeg (which is quite difficult to get a 1 year-old to lay still for 20 minutes so that someone can read his brain activity). we hardly slept. poor little boy was so tired, but kept being poked and prodded and moved around. he finally fell asleep tuesday night around 8 while he was in the middle of being checked by the hemotologist.

wednesday morning we were up at 5:25am to have a second ct scan. the neurologist wanted to have the results by the time he came in to see us that morning. i was working on 3ish hours of sleep in a hospital chair and was trying to make sense of what the hell was happening. my mom came to the hospital in the morning and my husband stayed home and got our house ready for company to come then went to work for a bit in the afternoon. i told him not to worry about hurrying to the hospital becaus there wasn't much he could do to help out...and my mom was there to give me a break. i left and showered but couldn't sleep. the doctor wanted to try to put a picc line in evan so that we could infuse at home and be there for thanksgiving. he tried later that afternoon to get it in, but evan's veins were too small and close to his ateries to thread it through. this meant we were stuck there for thanksgiving.

i spoke to the hemotologist in the afternoon as well, and she reminded me that evan is lucky to be alive. she said that she has seen these sort of things before where the outcome results in death. it reminded me just how lucky this little boy is. and how lucky we are that the factor seemed to help him right away. the neurosurgeon also came in late in the afternoon and reminded me of how lucky he was. he ordered us in the hospital until at least friday morning, so the picc line wouldn't have mattered today anyhow. he was confident brain surgery would not be necessary, but wanted to be positive by ordering another ct scan for 5:30am on friday morning.

late wednesday night we were moved from the picu to the regular family suites at the childrens hospital. basically we just moved down the hall, but it felt like such a different place. it was far less restricted and a little more happy (in terms of colors and things to do).

thursday came and went without much of anything eventful happening. i went home for a few hours while my mom came and stayed with evan. i don't know what i would have done without her. i am so thankful that she was there.

friday morning we were up at 5:20 again for another ct scan, which thankfully came back with positive results. the hematoma had not grown and was stable, so the neurosurgeon said we would be able to go home if we could get the picc line in. so at 12 evan went to radiology where they were to attempt to put this in with more sophisticated equipment than they had available in the picu. he was sedated, which made me nervous as hell, and they went to try and thread the catherdar in through his arm and up into his chest. knowing that his arteries are so close to his veins made my stomach turn. if someone made a mistake and hit an artery it meant very bad things for my little boy. thank god whoever did the procedure didn't fuck it up, and e was able to get his picc line without incident. ***side note here that i wish i would have been able to speak with the man who did the procedure because i really wanted to thank him...he did something for our family that means so, so much.***

evan was put into recovery after his line was put in and he laid asleep for a while from the sedation. it took everything michael and i had not to scoop him up out of bed and kiss and hug the heck out of him.

we were told that we would be discharged from the hopsital after evan got his infusion at 5 o'clock. i was to be taught how to do the infusion so that evan can get factor every eight hours for the next two weeks, and then once a day for the following two weeks. i was completely intimidated and a little scared, but i knew that i had to do it. and i did. the nurse was awesome and taught me everything, including how to mix the factor with a needle and syringe in case the mixer doesnt work. she even called me on my cell on my way home to tell me i could give him less heparin than i had in the syringe if i felt i didn't have enough.

i am so, so glad to have evan home. and even more happy and thankful to have him alive. without any sort of brain damage. seriously. i have never felt so close to losing a child in my life, and i hope i never get this close again. and maybe i am not as close as i thought, but it sure as hell feels like it. i would die without my children. and i would die if something happened that changed who they are. i am so thankful for the fantastic medical care we received. especially for sara and kathy, who called me several times on their days off for the holiday to check in on me and my family. these are some very amazing people and i am so thankful to have them when i need them. now i need to find a proper gesture to show them how appreciative i am.

and while i am thinking of it, i have to say (even though they may never read this) how incredibly thankful i am for adrienne, candy, meg, jillian, martha and stacy for their incredible kindness and invaluable friendships. and to my friend meghann, for being totally awesome and coming to bring me coffee and laughter at a time when i needed it most.

i will do a secondary post later with whatever pictures i have of our hospital trip. i know i don't have many, but i have a few.

frustrated.

this is definitely an emotion that i feel a lot dealing with this disease. i feel like i am making real progress in understanding and coping with it all, and then.....nope.

evan had his blood tests done last week. i called sara (the hemo nurse) yesterday to check on his results and she said that his factor level came back all wonky at 0.6% so the lab tech was going to run another level and that she'd get back to me today.

i am thinking this isn't going to be such a big deal, because this has happened once before, and his labs came back at 3%.

yeah, not today. sara called and let me know that they re-ran his factor level and that it's at 1.1%. not what i wanted to hear. not even a little. this can mean many things, but she cautioned me not to get too upset over it...that we need to pay attention to the way his body is acting as a hemo. and that if he isn't having joint and muscle bleeds, that that's a good sign.

but to me...his mom...it's a kick in the face. it reminds me that i need to be more cautious when i pick him up and not lift him under the armpits, but instead scoop him under the butt and have him sit on my arm. it reminds me that i NEED to have him in his helmet all.the.time. no if's, and's or but's. i need to start checking him more for hot spots, or small lumps i may be missing. it means i need to start thinking about the possibility of prophylaxis. it means i have to remind myself all the time that my idealistic view of how my baby was going to be is being broken again.

and the hardest part (for me) is trying to do all of this while not getting sad about it. and while not letting evan know (however small he is...he'll know) that i am treating him differently. special. i mean, he is special...and delicate...but i don't want him to know that. and maybe he would never know the difference, but in my mind i know the difference. and i think i may communicate that to him somehow. and i don't want him to know my frustration of how i have to treat him differently. and its the having to treat him different, not wanting to treat him different, that really pumps my nads. i've always been proud of the type of mom i am. i think i am pretty damn good at it. i have a wonderful older son that is living proof. and to have to alter the things that i have done to turn him in to the wonderful young man he is makes me mourn a loss of something that never really existed with evan. and i suppose that makes me mad too.

on the bright side, there was no evidence of an inhibitor. so i guess i will have to take what i can get.

ugh...hemophilia anxiety.

so i spoke with the head nurse at the hemotology clinic yesterday and she said she'd like the have E come in for a check-up. i didn't think it was that big of a deal until i spoke to her today. apparently he needs to have blood drawn for a factor level and an inhibitor check. and then she rattled off some other tests the hemotologist may want to order, but i don't really know what they're for.

i hate, hate, hate that he has to get poked. it is pure torture to watch them put the needle in his arm. even if he doesn't cry or get fussy, i still hate it. and the worst part is having to pretend like i'm all happy and like it doesn't hurt that much. and that i am always by myself for this shit. and its hard to be strong for evan when i feel weak and vulnerable at these appointments.

so, here's hoping to only one stick and no inhibitors.

as promised...

e's new helmet came in on monday. it is fantastic. better than i could have ever imagined. its soft and cozy and he has hardly tried to take it off. i know its sort of silly to get so excited over a helmet (that my husband still can't come to terms with him having to wear) but i find that with this disease, in order for me to truly accept and embrace it, that i need to get excited about the little things. and i am excited about this. he looks so freaking cute in it that i can't help but kiss him a million more times than i was already. seriously, he is just the most beautiful thing ever.

if you're looking for a good cause to contribute to

i strongly recommend donating to your local hemophilia foundation. i was speaking to someone there that i speak with quite often about how to use the best verbage to speak to my insurance company to get them to cover a new helmet for E, and she told me that the hemophilia foundation will buy it for us. i was so excited. i'm still so excited about it. these helmets are expensive, and at the rate evan's head is growing, he's gonna need a new one in about 6 months.

anyway, i know it's donations that help these organizations and i hope that other families feel as greatful for these things as i do. i promise to post pitures of him in his new helmet when we get it.

not for the squeamish.

so i finally uploaded some photos today and realised that the pitctures that i took from the hospital visit that prompted me to start this blog have yet to be shared. they tell the story of what e goes through at the er better than i ever could. except that i forgot to bring the camera in with me for the ct scan and didn't want to look like a total ass and leave to go and get it. i guess those will have to wait for another day.

this is the nasty lump-bruise about 15 minutes after e smacked his head on the floor. for a frame of reference, he was sitting on a padded square tray that is part of a storage ottoman that was sitting on the floor. its about three inches off the ground. he fell forward and didn't catch himself and hit the kitchen floor with his forehead. well, at least i think that is what happened. i was cooking dinner at the time. this bruise was instant.

this is part of what happens in the triage area. there is a nurse that takes his pulse and blood pressure, and gives him is ankle hospital bracelet. they also take his weight, but i forgot to snap a picture there too.


since e's fall happened right at dinner time, we had to improvise and eat at the hospital. so here he is in his stroller, waiting for his meal of raisins and mozzarella cheese. and, of course, with his cup of milk. one good thing about our shipments of factor to our house is that they come packaged with these awesome ice bricks that stay cold for about 24 hours. so i throw those in the bag when we go to st. joes to keep things cool for him. you can also get a better sense of the color of his bruise here. the light in the first picture from home made it look a little lighter in color.


here are the nurses getting ready to stick evan and give him his factor. they are so good with him. and don't mind at all that i have my camera out. they didn't even ask me not to get them in the picture. the nurse in the back just fell in love with him.


and here they are searching for a vein. poor baby has difficult ones to find, just like his mom.









and we have entry! the vile of clear liquid on the left is his factor. with this particular vein they only got about a third of the factor pushed through before the needle somehow left the vein and they needed to go and poke him again in order to push the rest of the factor.


here is the spot of blood that was on e's inner elbow when they took the needle out. i look at this picture and i want to yell at his blood and tell it to shape up and work like it's supposed to and we won't have to do this anymore. unfortunately, it doesn't listen.


in this picture they are pushing more factor. they had to put the needle in his wrist, and i could barely bring myself to look at it, let alone photograph it. it was very painful for e, and he squirmed quite a bit and the needle dislodged again. so it was off for another site, giving us poke number three.



the third and final poke was in the top of evan's left hand. the nurse really didn't want to do it there because she noticed there was some scarring from times that he's already been poked there. and she's afraid that it will be more difficult to get to the vein.

and this is how he feels about the poking. i can't say that i blame him.


and finally with the last poke they were able to push in the rest of his factor. they seriously were so great about it. and it only took about three minutes total. but it's amazing how long those three minutes can feel when you are watching your baby go through stuff you never dreamed he would have to.


and here is evan with the last poke. i debated posting this picture or not. but it says so much about how he feels. and about how i feel too. this disease is hard. i mean, its managable and i am so thankful for that. but it's difficult to understand why he has it. it's trying to change your idealistic views of how you would raise your children when you are affected by something like this. it is sad to think about the things that could happen as a result of one simple accident when you are dealing with someone whose body just can't do what ours does.

i am getting better all the time with his diagnosis. but some days i feel like it's a one step forward, two steps back kind of equation. today my husband and i took evan outside to play and he was walking on the driveway and the sidewalk and i was beside myself with tension and fear that he was going to fall and hurt his head. or skin a knee. or scrape his foot. or an elbow. and it's those types of feelings that get my stomach in knots. because he's a kid. and they're going to get hurt. and i need to control the way my tension and stress might affect him. and by affect him, i mean the things that i automatically don't want to let him do, but that logic tells me he needs to do in order to grow.

but, he is the sweetest most loving baby in the world. and i know he gets good care when he needs it. and i know that we love him so much and that he will feel that always. even if we have to crush his dreams of becoming some sort of professional WWE wrestler.

oh, the irony.

well, today was e's 15 month check-up. weeeeeeeeeeee! he is definitely growing. he's now up to 23.5 pounds and 31 inches. this may not mean much to anyone else, but it means a lot to me. e is now in the 35th percentile for weight and 46th percentile for height. this is HUGE considering he had been in the 10th and 14th percentiles (respectively) at his last visit. and before that, he was in the 5th percentile for weight. i guess it's all the whole milk and cheese.

and something a little bit funny happened at the doctor's office today, too. we didn't see his regular pedi, as he was on vacation. we did see one of his colleagues, who seems to not understand the invention that is floss. anyway, he looked at e's head circumference measurement (which is in the 80th percentile) and seemed concerned. he said that he would like to re-measure his head in six weeks when he comes back for his next flu shot, and if it measures bigger he would like to send him for a ct scan to be sure there are no tumors or anything growing inside. and i laughed and said "oh, there's no need for that...he's had three ct scans in the past three weeks...everything in there is fine."

i guess the silver lining there is that being a hemophiliac (and a somewhat clumsy one at that) has it's advantages in early detection of abnormal growths in the head. or rather, reassuring us that there are none in there.

you know, sometimes people are assholes.

why would i say this? it's simple...i am a truthful person, thats why. this past monday i had to take evan to the er (again!) for yet another head injury (in the same spot as it was the monday before). anyway, when i was getting evan into his "room" at st. joes some arbitrary nurse comes in to ask what happened. i give her the run through of how he was scooting a plastic pitcher across the kitchen floor and he lost his footing and kinda slid over it and (i assume) hit the kitchen floor (it could have been the edge of the pitcher, i don't know...i was making dinner).

anyway, this lady looks at me with this stern, frigid face and asks me if he has a helmet. i tell her yes, but that he doesn't wear it often. in this nurses head, she thinks this is the perfect opportunity to school me in mothering and tells me that she has seen many hemophiliacs die from head injuries and lack of a helmet. i wanted to punch her.

now, i know that i should be more diligent about this. i know. but he was playing on the kitchen floor. he wasn't running around the block. he wasn't skateboarding. he wasn't jumping off the banister. he was on the kitchen floor. playing with plastic pitchers. not mallets or knives. plastic. pitchers.

and who says that? seriously. do they not give some sort of nurse tact class in nursing school? because i think they should. hell, i would even chair it up to keep stuff like this from happening. i felt bad enough as it was...the last thing i needed at that very moment was some random woman telling me that i suck at life. it's difficult enough being in the emergency room for the second time in seven days, by yourself, with a little baby that is about to endure the pain of several needle pokes plus another ct scan.

i'm still annoyed by this. i need to let it go.

in other news, i have had evan in his helmet every day since. even if he is on the floor, playing with plastic pitchers.

farewell, foreskin.

in an effort to get caught up on evan's past 14 months, i'll start with our first hemophilia hump. the circumcision. we knew we wanted to have him cirumcised, but since he was diagnosed with hemophilia my ob declined to do the procedure. so, off to the pediatric urologist we went.

e's circumcision came right around the time he was 7 weeks old. the wounds were still fresh from his diagnosis, and this simple 10 minutes procedure landed us a two night stay in the children's hospital at st. joe's. since it was being performed on a monday morning and michael had to work, i was at the hospital overnight by myself on sunday and monday. michael drove with me to the hospital on sunday evening and we checked in. he stayed with me while they put e's iv in and left around 10:00 that night. i was breastfeeding and evan was still so little...and they told me i couldn't feed him after midnight. i was dreading the night with him, alone in a hospital where i couldn't nurse him to calm him down. luckily he nursed right before midnight and didn't wake up again until 4 where i gave him a paci and he went back to sleep until around 6. his appointment was at 8, and he did pretty well with not eating.

i brought him downstairs and checked him in with the urologist. he showed me the board with straps that evan would be put on while they did his procedure. the whole time they are explaining this to me, i kept asking myself what in the hell we were doing making him go through this. so little and helpless being strapped to a board. so i left and went to get a coffee. i knew when i got back that they would be finished. i didn't want to be within earshot in case he was crying. i was already in a fog from lack of sleep, post-partum emotions, and the freshness of his diagnosis. i didn't need anything else to possibly tip my scales.

i came back a little later to pick him up...he did great (well, that's what they told me anyway). now he could nurse and sleep and be infused every 8 hours for the next 24 hours just to be sure he would clot up. i was going to try to get a little sleep, but that didn't work so well.

being at the hospital with him was hard. it was difficult to see all the little kids that had been there for weeks...some of them months...with their own linens in their rooms to make them more comfortable. kids with cancer and other horrible diseases that were making them weak and sick and probaly unable to see their next birthdays. and then there was me...a mom with a baby whose disease was managable. it isn't likely to kill him...and there is so much hope for him to have a totally normal life. it made me feel a little better about it, though i felt guilty for feeling that way with all these other kids around. not that i was sharing these thoughts with them...but it was still so sad.

my mom brought noah to visit us that afternoon. and then my dad came, too. and michael came after work and brought dinner for us. it was so good to have people there...and made me miss being home. i just wanted to be at home...in a normal setting...with our new baby. but we weren't. and i remember feeling the unfairness of it all. again questioning why this had happened to our son. the questioning and crying didn't do any good though. and i knew it wasn't going to change the diagnosis. so i kept telling myself to stop. as hard as it was to do that...i kept trying.

the next morning we were able to leave...though not until around 11. i was so happy to leave. it was just one hurdle that we had gotten over in our new relationship with this disease. and it turned out alright. while we were there, the doctors drew blood from evan to check out his factor level. we got the results back that he was at 6%...this was fantastic! it meant he was in the mild range, and we were so thrilled to hear this. we have since had him retested (twice) and found that he is at 3%, putting him in the moderate range. still not bad...but not as good as we thought it was.

anyway...we got to go back home, as a family, to keep figuring this thing out together. and it was great to get back there.

so this is my first post.

well, this is quite a step for me. my very first post on my very own blog. it's sort of strange to me...sharing my thoughts and feelings about something so personal for anyone to read. not that there is much that i keep to myself, but it's the voyeristic part that sort of weirds me out. i guess it's just the venture in to uncharted territory that has me scared and excitied and nervous all at the same time.

so, welcome to my world. pull up a chair. enjoy your time here. feel free to comment, or ask questions, or tell me i need to stop whining. not that i anticipate much whining...i'm not really the whining type.

and here i go...the beginning of our journey with hemophilia. evan was born on july 3, 2007 at 4:11 pm. it was a dream birth...so easy. in fact, too easy...my doctor missed the birth and a doctor from a totally different practice was pulled out of the hall to deliver our little guy. he was so beautiful...so sweet...so perfect. michael and i enjoyed our stay together with evan in the hospital, but were eager to get home.

on the morning we were supposed to leave, a nurse came in to check on me. as she was leaving, i noticed e's ankle bracelet had fallen off of him and was laying on my bed. the nurse offered to put it back on him on her way out...and when she did, she noticed his pants were soaked in blood. she whisked him off in his bed down to the nursery to try and figure out what was wrong with him. it took nearly an hour to get the bleeding under control (which was all caused by his pku test). the nurses called the nicu doctors in to help, and they immediately suspected hemophilia or von wildebrand's disease. a couple of hours (and several tests) later, dr. wynn (the on call pediatric hemotologist) came to my room to explain to me what was wrong with e (michael had left to go home for a bit and was on his way back to the hospital). i was in complete and utter disbelief. honestly, i still cannot describe the sadness and confusion i felt that day. i didn't understand why my son had a genetic disease when there was no history in our family. i couldn't figure out why he got this disease. i felt myself racing in my mind to find a reason...trying to think of something i could have done differently while i was pregnant to have changed it. i felt a lot of guilt...and a lot of sadness. thoughts of ryan white raced through my mind, and the idea that my child could be infected with hiv while being treated for this disease like he was brought me to tears.

but i went to the nicu and stared at my brand new son...who had an iv in his scalp...laying there looking perfect and completely unphased by what was going on (which, i mean, he had to have been...he was only 48 hours old, but still). he was still so sweet, and so beautiful and so perfect...and i decided that i wasn't going to let this define him.

so, fast forward to now. 14 months later. and he's still perfect. in fact, more perfect than i could have ever imagined. and he's going to be alright. and i'll write all about his first hospital visits...but not now. i think my first post is long enough.