Well, I've been home now since Tuesday (was it Tuesday? I've lost track of time).
I've been soo happy to be home, trying to get some things taken care of (desk/work things) in case I end up back in the hospital for the duration. It's amazing when you feel like time is working against you how much there is to do!
All's been well until yesterday when I started bleeding again, small, dark again, but none-the-less, it's definitely new, as the few days prior it had hardly been anything at all.
I had started feeling really frustrated about my lack of freedom/movement when everything seemed just fine to me, but I do know that this is likely what is going to happen and that it IS important for me to stay off my feet (which I've been doing).
Kaitlyn is having a tough time, she can't understand why mom can't lift her or do the things I used to do (bathing, feeding, playing) etc. The main thing we do is read books on the couch together, I can't seem to do much more with her as she gets very agitated/and moves around a lot which ends up being sharp elbows in my baby-belly which obviously isn't good. It's just her "normal" self, always on the go, not liking to sit still, but it's making things tough.
Brian's working his 3rd day in a row right now, thank goodness for our amazing nanny....Wow, were would we be without her?
So many friends/neighbors/moms have been coming by bringing me meals, which have been so appreciated, this way my nanny just heats up the food for me and brings it to me. I'm feeling more up-beat then when I left the hospital, amazing what being at home does to your spirits.
I am getting a bit stir-crazy, as not only am I off my feed and house-bound, but the crazy fires we are having in California are wrecking havoc with our air, and we have to keep our windows shut 24/7 as it's so smoky outside.
I will be 32 weeks this Wednesday. Belly is really starting to grow, and the little guy is kicking and moving like crazy! (a good thing as far as I'm concerned so I know he's safe)
Saturday, June 28, 2008
Monday, June 23, 2008
Monday Update
Unfortunately I had quite a number of contractions last night at midnight, so I was given a shot of Terbulatine "Terb" which is given to control contractions. It makes your heart race and makes you all jittery, so it's no fun but it worked.
Now I'm still at the hospital, after thinking I'd be at home already today by noon.
We'll see how the day goes.
Thanks everyone for your emails/ posts and offers of support. I have limited email connectivety, I can read emails on my cell phone, but can't seem to send emails currently.
I know (assuming I make it home) or even if I don't that my main concern is obviously Katilyn. We are very lucky that are care-giver has offered to help, but as she doesn't drive and needs to be there by 6:30 am when Brian goes to work for 24 hours is making things a bit tricky. Brian is back at work today and our care-giver is home with Kaitlyn.
Tuesday update:
I'm home! I was "released" last night at 4pm and was so happy to come home, take a shower and spend some time with Kaitlyn. Sleeping in my own bed was Divine. So far so good in the bleeding department...Let's just hope this guy and my placentia behave!
I'm on limited activity/bedrest, very bummed about loosing my freedom, but I have to say I'm in a much better frame of mind about not doing it in the hospital. For those of you out there that are on bedrest, especially the ones on hospital bedrest. Hang in there, it's a very hard thing to do, even though you know you are making these sacrifices for such an important reason. I know I go through all sorts of thoughts every day myself.
Now I'm still at the hospital, after thinking I'd be at home already today by noon.
We'll see how the day goes.
Thanks everyone for your emails/ posts and offers of support. I have limited email connectivety, I can read emails on my cell phone, but can't seem to send emails currently.
I know (assuming I make it home) or even if I don't that my main concern is obviously Katilyn. We are very lucky that are care-giver has offered to help, but as she doesn't drive and needs to be there by 6:30 am when Brian goes to work for 24 hours is making things a bit tricky. Brian is back at work today and our care-giver is home with Kaitlyn.
Tuesday update:
I'm home! I was "released" last night at 4pm and was so happy to come home, take a shower and spend some time with Kaitlyn. Sleeping in my own bed was Divine. So far so good in the bleeding department...Let's just hope this guy and my placentia behave!
I'm on limited activity/bedrest, very bummed about loosing my freedom, but I have to say I'm in a much better frame of mind about not doing it in the hospital. For those of you out there that are on bedrest, especially the ones on hospital bedrest. Hang in there, it's a very hard thing to do, even though you know you are making these sacrifices for such an important reason. I know I go through all sorts of thoughts every day myself.
Saturday, June 21, 2008
All is quiet in the hosptial
Well, not much news here from my hostpial bed, which is obviously GREAT news.
My bleeding is still very limited, really more spotting, very dark. it's looking VERY likely that I'll be relseased to go home on Monday on bedrest with some limited activity.
I'm going stir crazy, boy how easily I forgot how hard bed-rest is, I'm back to mourning the life of being a healthy pregnant woman once again. I keep thinking of how much I was enjoying just being pregnant and "living my life" that I never go to do before.
I guess I could sit here and feel sorry for myself (which I'm doing some of), but at the same point know how lucky I am that I'm over 30 weeks now. But really, why do I seem to have the luck.
That's life from the 'fast-lane' here in a San Francisco hospital bed.
My bleeding is still very limited, really more spotting, very dark. it's looking VERY likely that I'll be relseased to go home on Monday on bedrest with some limited activity.
I'm going stir crazy, boy how easily I forgot how hard bed-rest is, I'm back to mourning the life of being a healthy pregnant woman once again. I keep thinking of how much I was enjoying just being pregnant and "living my life" that I never go to do before.
I guess I could sit here and feel sorry for myself (which I'm doing some of), but at the same point know how lucky I am that I'm over 30 weeks now. But really, why do I seem to have the luck.
That's life from the 'fast-lane' here in a San Francisco hospital bed.
Thursday, June 19, 2008
24 Hours
OK, I think I forgot how much bedrest sucks, especially when it's in the hospital!
I've been here now for more than 24 hrs...
have had both doses of steroids, I'm feeling flushed (my cheeks are red) and am not feeling all that great.. forgot about the side-affects, must be the steroids.
Had some larger bleeding this morning, still older blood so hoping that it was just the clot coming out (the peri said we should be expecting it) and still have some more spotting. I'm here for the weekend either way, and will be reassed at that point whether I can leave or not. I have have red bleeding, I'm here for the duration.
After one day on bed-rest I forgot how miserable it is. I think it gets easier over time. (from what I recall). I think in the beginning you forget out much it SUCKs to loose your freedom. I got downgraded today to a different room, which is tiny and I'm going stir crazy.
dad and Kaitlyn came to visit again, but it's really hard to have K here, she wants to pull off my contraction monitor, my iv out of my arm (nothing attached, just the port for emergency if needed) and every other cord she sees every where and when on the bed with me elbows my belly (no good) as she doesn't really like (or isn't able) to sit still. I read her a few books which was great, but it was stressful to have her here in this tiny room. SUCKS. I miss her, I miss my freedom.
But as soon as she walked in the door I remembered why it's all worth it, for this little guy inside of me.
I've been here now for more than 24 hrs...
have had both doses of steroids, I'm feeling flushed (my cheeks are red) and am not feeling all that great.. forgot about the side-affects, must be the steroids.
Had some larger bleeding this morning, still older blood so hoping that it was just the clot coming out (the peri said we should be expecting it) and still have some more spotting. I'm here for the weekend either way, and will be reassed at that point whether I can leave or not. I have have red bleeding, I'm here for the duration.
After one day on bed-rest I forgot how miserable it is. I think it gets easier over time. (from what I recall). I think in the beginning you forget out much it SUCKs to loose your freedom. I got downgraded today to a different room, which is tiny and I'm going stir crazy.
dad and Kaitlyn came to visit again, but it's really hard to have K here, she wants to pull off my contraction monitor, my iv out of my arm (nothing attached, just the port for emergency if needed) and every other cord she sees every where and when on the bed with me elbows my belly (no good) as she doesn't really like (or isn't able) to sit still. I read her a few books which was great, but it was stressful to have her here in this tiny room. SUCKS. I miss her, I miss my freedom.
But as soon as she walked in the door I remembered why it's all worth it, for this little guy inside of me.
Wednesday, June 18, 2008
I feel in deja vu....
Where to start, well, should just get right into it...
I've been admitted to my L&D Hospital (CPMC in San Francisco for at least 4 days........
Backing up to yesterday, around noon I noticed (sorry if this is TMI for you) a dark brown swath on my panty-liner, clearly dried blood. Dried, very dark not a ton, but enough that came out and made a streak (as opposed to a spot). Call my Perinatologist...Said take it easy, it's dark old blood by your description of the color. I had it again in the evening. I tried to take it as easy as I could but I was on my own after 4pm with a 26lb toddler that still has to have diaper changes, feeding therapy, bath and put into crib (as easy as all that is).
Didn't sleep well (obvious reasons of being scared) and haven't slept well in general the last handful of nights with all that's been going on....Grandma gravely ill and then passing, Brian being out on a dangerous strike team, lack of money, you know that sort of stuff.
In the late morning, had another swath, so called my peri again, They wanted me to come in for a scan at 1pm...I CONTEMPLATED packing a few things, (namely my computer, toiletry bag, phone charger) but I thought no, this is such a small amt that he's going to just send me back home on restrictions and see what happens.
Upon getting the u/s, baby boy looks great. Cervix looks long, no noticeable contractions, then he wanted to do the wonder-wand vaginal internal exam and saw a pool of blood right behind my cervix, which means its' coming from my Placenta Previa (and this is what we have been fearful of). he was quite quiet for a bit and I knew he was determining what he wanted me to do, he finally spoke and said you are not going to like what I"m going to say, (my gut was saying that go home on strict bedrest), but no, he wanted to admit me ASAP. I asked if I could go home pack somethings, as I was currently wearing flip-flops, a floral skirt and a tshirt, my cell phone charge was almost out, and had nothing,....oh and my the way my husband was out of town in an area that had little to no cell reception, and my nanny at home with Kaitlyn speaks little english. So could I go home first? He asked where I lived in SF, I said I lived in North Marin, 25 min from the hospital basically (with no traffic), he said he really didn't advise I go there. He said the main risk of severe bleeding/abuption happening is 48 hours after the bleed started, (which was noon yesterday).
So with that, They found me a translator who spoke to my nanny and said she was fine to do whatever to help....(what a relief)...Left brian a message as to the news, and said once he got home to call me so I could tell him what to pack for me. My cell phone died not long after that (I got out a few text messages filling some folks in) And no way to charge it until Brian showed up.
So with that, I drive myself to CPMC. was feeling very calm in fact, thinking that this WASN'T it (but ha, I said that I wasn't going to deliver the night that I did too) but I'm still trying the positive thinking.
Just a few days ago I told Brian, laying on the couch after he got back from the fire that I was feeling so great, that this pregnancy thing was pretty damn cool, i loved my belly, feeling my little guy kick, strangers asking me when I'm due, it's summer and warm out side and just plan enjoying being pregnant and couldn't believe that I only had 6 or 7 weeks to go (as they wanted to take him at 36 weeks) I'm 30 weeks today.
I did NOT expect to find myself admitted to the hospital. crapola!!
A few good notes this time around:
1. I know all the things to ask for to try to get more comfortable. As I won't be L&D in this bed (as I have to have a csection either way) it doesn't seem to make sense for me be on the HARD labor and delivery bed that are meant for moms to bear down on and delivery their babes. I knew there were other options this time around. So they just brought me in a post-labor bed which is much more cushy.
2. I asked to take a sleeping pill! I've already been sleeping so horrible anyways.
3. I knew the food menu items to order without looking at the menu....Wow you'd think things would change after almost 3 years on their menu. I asked if there were any strikes planned. as last time all the service workers were on strike and it was very hard to get food as they were out of everything and screaming and striking every morning at 5am that sucked! No strikes planned this time thankfully.
4. I asked if their was dial up access and think I have some access on my computer (Yeah) at this point, not sure if I can get my email to work.
5. I asked for the take-out menus that they have for local restaurants (I didn't know about these until a day or 2 before I delivered)
6. The IV they put in my arm was killing me. I've had enough IV's to know that it really shouldn't hurt as bad as it was, so I asked if they could redo it. I think they felt I was just complaining about it, but the nice nurse I have said she figured if I wanted to get restuck again (which is the worst part of an IV) that this other one must really hurt. And it's soooo much better having it redone.
7. They wanted to put the huge belly band on my tummy, but that caused a horrible heat rash last time around and I wanted no part of that, so we are with a small monitor to monitor contractions. I'm thankfully not required to have 24hr monitoring of heart-rate, as that's an impossible task and you never get any sleep (from my memories last time).
I just had my first dose of steroid shot (I forgot how much that med hurts going on, OUCH).
Kaitlyn and dad came to visit, she didn't seem too freaked out (good thing obviously) not sure what to try to tell her about the whole thing so she continues to stay not freaked out, but I"m sure she won't understand why I'm not coming home with her and dad.
Dad will call in sick for his next shift on Friday, our nanny will be there to help as much as we need her she's told us (WE are SOOOOO grateful to have Julia in our lives). I think I wouldn't be as calm as I am now if it weren't for Julia and love for Kaitlyn (and us) and that she can be so flexible.... After that we'll play it by ear. If this is long-term in the hosp, Brian does have to work and try to work over time shifts as we are so in the red every month if he doesn't work over time.
I will get another steroid shot tomorrow. These shots will help baby boy's lungs SHOULD he need to be delivered in 48 hours (the shots take 48hrs to go into effect). They results of the shots last approx 2-3 weeks I think, and after that I'll be further along that His lungs won't need as much help.....
SO basically from what I understand here's my outcome:
1. I'll be monitored for contractions 24/7. I've had a few minor ones that I didn't even know about (no on seems worried about these at all, I think they are typical). If that changes, it's another story.
2. My blood loss with be monitored. I continue to have small bits (dried) leak out of me. While I was in the doc office getting my scan he saw a pool of blood. He said this pool will need to leave, but if the bleeding becomes excessive and bight red that I may never be leaving. But if the blood is the same and hopefully stops once this pool leaks its way out than I may most likely be released for bedrest/limited activity (not sure which) at home.....
So, that's it for now.
I can't believe I'm here. It's soooo surreal! Many people know me from last time around. The nurse tonight commented on what a BIG deal it was that I lasted 10 weeks without amnitoicfluid last time around - that just doesn't happen! It was surreal having Kaitlyn here at the hospital with me...Wow. So many emotions going through my brain.
I got to take a sleeping pill, so typing this a little bit groggy, but just figured out how to get on line somewhat....
Here I was going to post today how GREAT Kaitlyn has been eating as of late. This made me cry yesterday:
my nanny called to me from my office and said Liz you've got to come see. Julia was making a pizza bite for her - we've really been working on chewing....and told Kaitlyn she was going to have pizza...and lo and behold, K climbed up in her high=chair on her own (didn't know she could do that we watched her try to do it today and I have no idea how she did it on her own without falling), but she was up there, banging her hands saying" "pizza...pizza" OMG. Only someone how understands how incredible this was can appreciate the fact that I started crying there on the spot. Maybe my daughter will someday eat regularly. That I'm not on a 10 year road feeding hell after all. I can attribute it to 2 things: getting her on periactin the last few weeks has stopped the pghlem. She is still vomiting, but it's with a gag (as she still has serious chewing issues, but they are improving now every meal as she's so motivated!) and the feeding program that Dr Patel put us on..... WOWEEEE! Well that was going to be my good news post
Sunday, June 15, 2008
Sad news to report
Sadly, my grandmother passed away yesterday on June 14, 2008. She had just turned 94 years old in May. On her birthday, my mother was visiting, so my mother, myself and Kaitlyn all got to talk briefly to my Grandmother on the phone. She wasn't doing very well at the time, and sadly went down-hill quickly not long after that.
I was at our local community pool when I got the call of her passing. I felt very sad and alone, as Brian is still away on his forest fire and I couldn't talk to anyone. I was reminded of the time when I was a little girl and learned to swim in my Grandmother's pool while visiting Florida. She was on very strong, proper lady.
It was her time, she lived a wonderful-long life, but it's still so "final" as my mother said. Even though we all knew it was time, it is still very sad. I keep getting teary-eyed.
In true fashion for my grandmother, she asked the hospice workers what was the best way to die "properly". Only my grandmother would be concerned about being proper even in death.
I miss you terribly Tommy (our nick-name for our Grandmother). You've left quite a legacy behind you. 3 children. My mother Corinne, her sister Nancy and brother Carl. All together Tommy had 6 grandchildren (I'm the eldest, Liz, Chris, Kathy, Gary, Christina and Jennifer) and 3 living great-grandchildren, 1 great-granddaughter deceased (Corinne) and 2 great-grandchildren on the way (baby boy McCarthy and Christina's baby due)
The good news, I just finally spoke to Brian. It looks like the fire is on it's way out, and he's doing fine! Phew!!! I feel so relieved. He'll likely be home tomorrow or the next day.
Happy Father's Day to all the Father's out there.
I was at our local community pool when I got the call of her passing. I felt very sad and alone, as Brian is still away on his forest fire and I couldn't talk to anyone. I was reminded of the time when I was a little girl and learned to swim in my Grandmother's pool while visiting Florida. She was on very strong, proper lady.
It was her time, she lived a wonderful-long life, but it's still so "final" as my mother said. Even though we all knew it was time, it is still very sad. I keep getting teary-eyed.
In true fashion for my grandmother, she asked the hospice workers what was the best way to die "properly". Only my grandmother would be concerned about being proper even in death.
I miss you terribly Tommy (our nick-name for our Grandmother). You've left quite a legacy behind you. 3 children. My mother Corinne, her sister Nancy and brother Carl. All together Tommy had 6 grandchildren (I'm the eldest, Liz, Chris, Kathy, Gary, Christina and Jennifer) and 3 living great-grandchildren, 1 great-granddaughter deceased (Corinne) and 2 great-grandchildren on the way (baby boy McCarthy and Christina's baby due)
The good news, I just finally spoke to Brian. It looks like the fire is on it's way out, and he's doing fine! Phew!!! I feel so relieved. He'll likely be home tomorrow or the next day.
Happy Father's Day to all the Father's out there.
Friday, June 13, 2008
Fire season is here!
Brian was called out yesterday to go on a "Strike Team" for a large (10% contained) forest fire in Northern California. He'll likely be gone for a week. He's there currently with 2,800 other fire-fighters.
It's in Butte county, California but it's being called the "Humboldt Fire" for whatever reason.
Click here for info on the fire he is helping fight:
And info from 2 local papers there:
www.paradisepost.com/
www.chicoer.com/
As of 6/13: Strong winds are making it very difficult to get crews ahead of the fire. The fire continues to spot in multiple directions.
Here's a fireman's poem:
Oh Lord, please help this firefighter To be skillful and brave. Please let me never falter When there are lives to save. Be with my fellow firefighters And ride with us each run; From the moment we "suit up" Until the job is done. Be with me as I guide a child Through the dark and smoky haze; Give me strength and courage As I fight the deadly blaze. Lord, I put my safety in your hands; But in the chaos and the strife, Help me act with selfless courage. God, just help me save a life. - Author unknown
Please pray for Brian to come home safe as well as my Grandmother who is gravely ill.
It's in Butte county, California but it's being called the "Humboldt Fire" for whatever reason.
Click here for info on the fire he is helping fight:
And info from 2 local papers there:
www.paradisepost.com/
www.chicoer.com/
As of 6/13: Strong winds are making it very difficult to get crews ahead of the fire. The fire continues to spot in multiple directions.
Here's a fireman's poem:
Oh Lord, please help this firefighter To be skillful and brave. Please let me never falter When there are lives to save. Be with my fellow firefighters And ride with us each run; From the moment we "suit up" Until the job is done. Be with me as I guide a child Through the dark and smoky haze; Give me strength and courage As I fight the deadly blaze. Lord, I put my safety in your hands; But in the chaos and the strife, Help me act with selfless courage. God, just help me save a life. - Author unknown
Please pray for Brian to come home safe as well as my Grandmother who is gravely ill.
Marin Multiples (MPOMC) Garage Sale
I think I've mentioned in the past that I am still actively involved with my local Multiples (Twins) club MPOMC where I live in Marin County.
Every year the club puts on a "garage sale" that is hard to describe! Members tag all of their items that they want to sell, there is strict quality control, and then members put on the sale. The night before the sale starts, all the members get a pre-shopping time. These pictures were taken right before any shopping was done. If you missed it this year, be sure to come next year! Lots of great bargains to be had.
A percentage of the sellers proceeds go back to the club to help in community outreach as well as club events. After the public sale ends on Saturday, families are chosen to come and shop for "free" and then all remainder items are donated back to the community. It's a wonderful thing to see.
The MPOMC Garage sale committee did an amazing, amazing job to put this sale on. I always feel so welcomed in the club and so many know my story. Everyone is so happy to see me pregnant and I feel like I get so much support from those who understand, as they would never say, "well, at least you have one baby!".
Thank you MPOMC members for your continued support of my family which started back in July 2005 when my water broke from amnio. Members brought me meals in bed, came by to give me company and have continued to support me ever since.
Every year the club puts on a "garage sale" that is hard to describe! Members tag all of their items that they want to sell, there is strict quality control, and then members put on the sale. The night before the sale starts, all the members get a pre-shopping time. These pictures were taken right before any shopping was done. If you missed it this year, be sure to come next year! Lots of great bargains to be had.
A percentage of the sellers proceeds go back to the club to help in community outreach as well as club events. After the public sale ends on Saturday, families are chosen to come and shop for "free" and then all remainder items are donated back to the community. It's a wonderful thing to see.
The MPOMC Garage sale committee did an amazing, amazing job to put this sale on. I always feel so welcomed in the club and so many know my story. Everyone is so happy to see me pregnant and I feel like I get so much support from those who understand, as they would never say, "well, at least you have one baby!".
Thank you MPOMC members for your continued support of my family which started back in July 2005 when my water broke from amnio. Members brought me meals in bed, came by to give me company and have continued to support me ever since.
My Grandmother is gravely ill
Hello, Just a message to all of my blog readers out there.
My grandmother, who is 94 years old, is gravely ill.
She lives in Florida and isn't likely to be here with us much longer.
Just a note to let the heavens know that I'm thinking of you Grandma Tommie and love and miss you very, very much. So does your great grand-daughter, Kaitlyn.
My grandmother is blind from Macular Degeneration and has never been able to meet Kaitlyn. Soon she may be able to meet her daughter's name-sake, Corinne, of course Kaitlyn's twin sister in heaven.
My grandmother, who is 94 years old, is gravely ill.
She lives in Florida and isn't likely to be here with us much longer.
Just a note to let the heavens know that I'm thinking of you Grandma Tommie and love and miss you very, very much. So does your great grand-daughter, Kaitlyn.
My grandmother is blind from Macular Degeneration and has never been able to meet Kaitlyn. Soon she may be able to meet her daughter's name-sake, Corinne, of course Kaitlyn's twin sister in heaven.
29 weeks and counting!
On Wednesday I turned 29 weeks and had yet another detailed ultrasound (hey, there's a bonus of having pregnancy complications, right?).
Placentia Previa (PP) is still definitely in place, and not likely to go away as it's so complete. We've started talking about when they want me to go in for a csection (they want 36w, I'm asking to go for 37w, as I'd like to have NO NICU time (as I'm sure you can all understand why), but my doc spoke to me about a woman who couldn't make it to the hospital in time when she started bleeding (from PP) and the baby died (near term). So big decision for us.
Still no bleeding or spotting and I feel great- yeah!
The best news is that Baby Boy McCarthy is now: hold on to your seats: 2 lbs and 11 ounces!!!! That means he weighs exactly 1 pound more than Corinne did at birth and 1 pound 1 ounce more than Kaitlyn did at birth! It made me feel really excited - that I'm going to have a baby to take home with me that isn't a micro preemie! I can't tell you the elation I felt at knowing how much he weighed!
Placentia Previa (PP) is still definitely in place, and not likely to go away as it's so complete. We've started talking about when they want me to go in for a csection (they want 36w, I'm asking to go for 37w, as I'd like to have NO NICU time (as I'm sure you can all understand why), but my doc spoke to me about a woman who couldn't make it to the hospital in time when she started bleeding (from PP) and the baby died (near term). So big decision for us.
Still no bleeding or spotting and I feel great- yeah!
The best news is that Baby Boy McCarthy is now: hold on to your seats: 2 lbs and 11 ounces!!!! That means he weighs exactly 1 pound more than Corinne did at birth and 1 pound 1 ounce more than Kaitlyn did at birth! It made me feel really excited - that I'm going to have a baby to take home with me that isn't a micro preemie! I can't tell you the elation I felt at knowing how much he weighed!
Brian left yesterday for a week "strike team" which means he's out being a hero fighting the california forest fires that have already started. Please pray for him to stay out of harms way. He's located at the extremely large Humboldt County Fire in Northern California. I'll post more as I hear from him.
Finally some pictures for you to enjoy:
Finally some pictures for you to enjoy:
Belly picture at 29 w
Kaitlyn and Mom last week (everyone tells me I look "glowing"..I dont know it's just me!)
And a 4D ultrasound movie clip of Baby Boy McCarthy:
Wednesday, May 28, 2008
Continuing the Vomit plea post
I've been making some updates to the end of my vomit plea post.
But this deserved it's own post:
First of all THANK YOU everyone for all of your suggestions, I'm digesting them all, going to copy many of them and MAKE Kaitlyn's doctors do something!! I've read every single one of them (here and on Stacy's blog too, thank you Stacy for posting my plea on your blog:
ThePreemieExperiment
Mainly though this post is a huge sense of "relief" I'm feeling tonight. I feel like jumping for joy and elation.
I think I know can better understand why I get so depressed and can't stand feeding Kaitlyn. I mean REALLY can't stand it. I think I may have been serious mental alert-watch myself if it wasn't for my nanny doing the majority of the day-time feeds 4 days a week. There is NO way I could feed her 7 days a week. NO WAY. My husband caught me the other day bawling while sitting feeding Kaitlyn, slumped over, at my wits end. (I don't normally post about this stuff). (oh, and my heart goes out there to all of you readers who have to feed a feeding disorder child every meal every day....This is serious stress for the mother here and worth a whole post on the subject.)
We started K back on Periactin 3 nights ago (so 2 full days of feeling the effects). The first morning after the first dose (5ml) her morning feed was amazing, she ate her entire bowl (or more correctly we fed her as we always do) of oatmeal, (that we can usually hardly get down with all the chocking/coughing/pghelm) in 15 minutes!!!!. And this happened with no pghlem whatsoever! The rest of her feeds also where pghelm-free until dinner.
We went all day with no vomits until the night-time feed, when she was showing some minor (not as bad as normal) signs of pghelm/coughing/throat clearing so I stopped the feed without finishing, BUT it was too late and she emptied her stomach on a throat clear.
Today (the 2nd day) we gave her a nap-time 2nd dose of Periactin (smaller, just 2ml) in addition to the night-time dose and lo and behold it was a NO VOMIT DAY.
The drug is supposed to be sedating, but I haven't seen much of that. She still took an hour 1/2 to go to sleep tonight (after giving it to her, which can be normal for her after putting her to bed if she got a long nap in).
But what I have to say the most amazing thing was when I fed her dinner tonight was that I got her whole dinner in with no pghlem. She even wanted to eat. She asked for the spoon and took about 6 bites of her own food (then refused, so I fed her the rest). I was finished in about 15 min max. It was actually a pleasure. a PLEASURE! we had fun together and giggled and played.
The love I'm feeling for my daughter tonight is especially indescribable, being forced to eat when she feels so horribly. she is one amazing little girl.
So this is how it's supposed to be??? I can now understand a bit (or have some sympathy for myself) why I'm so depressed all the time over Kaitlyn's feeds. It's really, really, really awful especially when you work at feeding her for 30+ minutes only to have her vomit it ALL back up again. It's all I know. Every meal. 4x a day. Every meal (including prep time, and vomit clean up time takes about an hour) Can I say how extremely, horribly awful it is normally? And that's my "normal" and my living-torture hell, not to mention how poor Kaitlyn feels.
Seeing how much better/easier it can be was an eye-opening experience for me. Maybe I will really be able to parent my new baby. (I've been terrified, as it's been sooooooo hard up to this point without much improvement).
I now know Kaitlyn needs antihistamines.. Now to get her doctors on board so we can come to the bottom of why it's happening in the first place (as I hate having her on the drugs, but I'm the one who suggested the periactin in the first place). I'll probably want to explore other ones (that so many of you have suggested). I don't care as much about the "appetite stimulate" side-effects of periactin, my gut tells me that if the pghelm stops maybe she'll want to eat...
(oh as I side note, I had a bout of morning sickness the other night (bleh vomiting -took my prenatal vitamins on not enough food in my tummy), and after the heaving was done (thinking about Kaitlyn the whole time), I had all this nasty pghelm in my throat that kept coming up on it's own for about the next 20 minutes. I can't even imagine being forced to eat while this was happening. Poor, poor Kaitlyn.
Oh and a few basic comments on some of the comments you've given me:
Kaitlyn's pghlem has always seemed to be in her throat (not her lungs), she always to be an EXTREMELY noisy breather (upper respiratory) until we got her on the blended diet. The Pulmonologist was never worried about the stuff, as it was upper. But it's also always been worse in the morning, she never gave me any solutions, and breathing treatments never seemed to make a difference. She doesn't snore at night unless her neck is positioned funny.
Does she really need a motility agent???
Let's see how the next week goes....I'm also already afraid of when I'm supposed to "cycle off the drug"...
But this deserved it's own post:
First of all THANK YOU everyone for all of your suggestions, I'm digesting them all, going to copy many of them and MAKE Kaitlyn's doctors do something!! I've read every single one of them (here and on Stacy's blog too, thank you Stacy for posting my plea on your blog:
ThePreemieExperiment
Mainly though this post is a huge sense of "relief" I'm feeling tonight. I feel like jumping for joy and elation.
I think I know can better understand why I get so depressed and can't stand feeding Kaitlyn. I mean REALLY can't stand it. I think I may have been serious mental alert-watch myself if it wasn't for my nanny doing the majority of the day-time feeds 4 days a week. There is NO way I could feed her 7 days a week. NO WAY. My husband caught me the other day bawling while sitting feeding Kaitlyn, slumped over, at my wits end. (I don't normally post about this stuff). (oh, and my heart goes out there to all of you readers who have to feed a feeding disorder child every meal every day....This is serious stress for the mother here and worth a whole post on the subject.)
We started K back on Periactin 3 nights ago (so 2 full days of feeling the effects). The first morning after the first dose (5ml) her morning feed was amazing, she ate her entire bowl (or more correctly we fed her as we always do) of oatmeal, (that we can usually hardly get down with all the chocking/coughing/pghelm) in 15 minutes!!!!. And this happened with no pghlem whatsoever! The rest of her feeds also where pghelm-free until dinner.
We went all day with no vomits until the night-time feed, when she was showing some minor (not as bad as normal) signs of pghelm/coughing/throat clearing so I stopped the feed without finishing, BUT it was too late and she emptied her stomach on a throat clear.
Today (the 2nd day) we gave her a nap-time 2nd dose of Periactin (smaller, just 2ml) in addition to the night-time dose and lo and behold it was a NO VOMIT DAY.
The drug is supposed to be sedating, but I haven't seen much of that. She still took an hour 1/2 to go to sleep tonight (after giving it to her, which can be normal for her after putting her to bed if she got a long nap in).
But what I have to say the most amazing thing was when I fed her dinner tonight was that I got her whole dinner in with no pghlem. She even wanted to eat. She asked for the spoon and took about 6 bites of her own food (then refused, so I fed her the rest). I was finished in about 15 min max. It was actually a pleasure. a PLEASURE! we had fun together and giggled and played.
The love I'm feeling for my daughter tonight is especially indescribable, being forced to eat when she feels so horribly. she is one amazing little girl.
So this is how it's supposed to be??? I can now understand a bit (or have some sympathy for myself) why I'm so depressed all the time over Kaitlyn's feeds. It's really, really, really awful especially when you work at feeding her for 30+ minutes only to have her vomit it ALL back up again. It's all I know. Every meal. 4x a day. Every meal (including prep time, and vomit clean up time takes about an hour) Can I say how extremely, horribly awful it is normally? And that's my "normal" and my living-torture hell, not to mention how poor Kaitlyn feels.
Seeing how much better/easier it can be was an eye-opening experience for me. Maybe I will really be able to parent my new baby. (I've been terrified, as it's been sooooooo hard up to this point without much improvement).
I now know Kaitlyn needs antihistamines.. Now to get her doctors on board so we can come to the bottom of why it's happening in the first place (as I hate having her on the drugs, but I'm the one who suggested the periactin in the first place). I'll probably want to explore other ones (that so many of you have suggested). I don't care as much about the "appetite stimulate" side-effects of periactin, my gut tells me that if the pghelm stops maybe she'll want to eat...
(oh as I side note, I had a bout of morning sickness the other night (bleh vomiting -took my prenatal vitamins on not enough food in my tummy), and after the heaving was done (thinking about Kaitlyn the whole time), I had all this nasty pghelm in my throat that kept coming up on it's own for about the next 20 minutes. I can't even imagine being forced to eat while this was happening. Poor, poor Kaitlyn.
Oh and a few basic comments on some of the comments you've given me:
Kaitlyn's pghlem has always seemed to be in her throat (not her lungs), she always to be an EXTREMELY noisy breather (upper respiratory) until we got her on the blended diet. The Pulmonologist was never worried about the stuff, as it was upper. But it's also always been worse in the morning, she never gave me any solutions, and breathing treatments never seemed to make a difference. She doesn't snore at night unless her neck is positioned funny.
Does she really need a motility agent???
Let's see how the next week goes....I'm also already afraid of when I'm supposed to "cycle off the drug"...
Deep breaths
A funny video of Kaitlyn a month ago practicing some "deep breathing" I think she got that from watching a Dora video or something. You'll also hear some of her quiet talking as well as some seriously bad eating behavior (trying to work on Katilyn feeding herself (which we know she can do as seen by a prior video). Once we get back to "our feeding her" she shapes back up to her post Feeding Therapy behavior.
She's sick in this video, but her cough at the end is very typical as to what we hear all the time (with feeding) when she's not sick.
It made me giggle. Enjoy!
She's sick in this video, but her cough at the end is very typical as to what we hear all the time (with feeding) when she's not sick.
It made me giggle. Enjoy!
Monday, May 26, 2008
26 weeks 6 days
My beautiful twins together for the last few days (October 2005, 26 weeks)This night (in 2005), when I was 26 weeks and 5 days pregnant, I started going into labor in earnest that couldn't be stopped. Not long after midnight, my fever really started breaking and we know that I had to deliver. I remember this night like it was yesterday. I had just spent the last 3 months lying in bed and I remember telling the L&D nurse over and over No, no, no, it's too soon, I'm keeping these girls inside of me until I'm 30 weeks. I guess nature had other plans for me and my daughters for the future.
Tonight, on the other hand (2008), I'm going to bed (my own bed) with no signs on impending labor, what a difference. I'm actually enjoying being pregnant! I feel great! (PP worries aside)
The pictures above were taken just a few days before I delivered in 2005.
Wednesday, May 21, 2008
Please help solve our vomit issues...
SEE UPDATES AT BOTTOM OF POST:
So many of you read my blog out there, that I'm pleading for help. I'm at my wits end. Kaitlyn continues to vomit and my docs don't seem to have any answers (I've given up in the past about getting an answer) but I was hoping and praying that it would just go away. It's not going away. it's HORRIBLE. This is our life. It SUCKS. It sucks for poor Kaitlyn . It sucks for mommy, daddy and Julia too. (our nanny). Please help us!!
She's still phlegmy! And the the phlegm is what causes her to vomit. Here's an example....
Called: "All Done Vomit"
She does this typically every day. Oh and did I mention that after she finished eating, she vomited again in the kitchen sink??? Well my nanny was able to catch her before she vomited and carted her to the sink (you become very experienced at knowing when when she's about to vomit the the pghlemy sounds she makes.) I actually heard pre-vomit sounds from my office, found my camera and caught the above vomit on film.
We work soooooo hard to get the meal in her and then to have her vomit it all back up, and pour it down the drain... it's a waste of everything, the food, the money, the time, our45 minute efforts per meal, her ability to gain weight not to mention poor little Kaitlyn having to "get used" to this and damage to her teeth and esophagus.
If you have any suggestions as to what we can do to eliminate the phlegm I will be eternally grateful!
Update post otherwise:
I think I had mentioned that Kaitlyn got sick AGAIN, the 3rd time in about 6 weeks. Luckily she only lost a tiny bit of weight and we continue to NOT doing night time feeds! This is huge. We've even been able to get a few oral meds in her (this could never happen before, as she gagged and vomited it up (along with anything that she had eaten before)....so maybe, maybe we can take out the tube in the "near" future? Now we still give her 2 tube water/drug feeds each day. One at night one during nap. Right now it's not bad having it, just knowing it's there is a relief actually, just in case. (and I have to say, it was quite nice to giver her Tylenol when she was sick at night without having to wake her up - hey trying to look at the bright side of having a tube)
I switched her back on to Prevacid Solutabs (for reflux) as her breath smelled horrible and I worry about acid damage....it doesn't seem to make any difference in her pghlem (and vomits). (wonder if it's worse?) As I recall last time I removed the drugs, she was less pghlemy?
I had a frustrating time last weekend, I went to a good friends 3 year old birthday party and when all the kids sat down to eat, I was hunched over (Not easy being pregnant) sitting on a child's chair on the other side of the room trying to feed Kaitlyn and became very jealous of how easy it is for the other parents. Pity party here (warning), but I have to say when I'm at home feeding her I don't "realize" how easy others have it sometimes. I think it's why we rarely go anywhere.... it's just a lot of work to feed her. A LOT of work. Now that she's older it's much more noticeable how different she is. I came home very bummed out. I hate feeling this way. I wish I could just be happy-go-lucky and not get jealous, but I have a hard time with comparing my daughter and my situation to others. Does that make me a horrible person? I feel that way.
I also spent the entire time chasing her around, no sitting down calmly for Kaitlyn doing art projects...she rarely sits down calmly....My gut still tells me that she has developmental issues, she seems very different to me than other children her age (or even age 2).
Yes, I tried to sit her down, even thought she said "cake" she wouldn't sit and have anything to do with food and joining the group.
OK, enough with the pity party....
My pregnancy:
I'm 26 weeks today! Wow. I delivered the twins at 26 weeks and 6 days. I had been in the hospital by this point for a week already and had been on bed-rest for almost 10 weeks. Here I am up and about with no seemingly complications (except of course that my placentia is completely covering my cervix and could start causing serious issues at any time (or no issues). I have a ultra/sound today, so wish me luck on it clearing! I feel great pregnancy wise. With twins by this time I was having a really hard getting comfortable and sleeping (maybe had something to do with the fact that I never got out of bed), but carrying a singleton is so much easier.
I'm stressed over other issues: Maybe it's all hormonal being pregnant, but life's been a bit difficult lately, primarily financially. The real estate market has obviously been hit hard and that has hit our families wallet directly. It's frustrating to work a lot and not make any money. Seems pointless at times. Our house is little, so we are trying to sort and organize to get ready for the new arrival. The kids will both share a room. AS I need my 3rd bedroom for my office (again seems pointless at times)...Brian built closet-built ins to help fit both of their clothes, but then there was no room for my clothes (which took up 1/2 Kaitlyn's closet). Feeling cramped, cluttered and broke. Not a great time personally.
Oh again, enough with the pity party.
Gratitude thoughts: Kaitlyn is eating 100% orally, she's maintaining her weight, she is talking up a storm (hope you enjoy some of that after the vomit fest on the video), I am pregnant and I'm still pregnant, We are all healthy, We have a lot of friends and family who love us and care about us. (oh and just realized I've had over 200,000 visits to my blog since it's inception!) wow!
UPDATE (5/25):
Thank you all for all of your suggestions/ideas, please keep them coming. Many of you have had questions, so I'm going to give some more detailed medical background of our vomiter:
-No nissen, we've refused. The GI has been ok with us not doing one, as K has gained weight on her own little nice chart (albeit with a LOT of work on our part making up for the vomit). I truly believe this will not help her. I know with a Nissen she would continue to gag and get phlegm - it will just stop the vomit from coming up, but isn't going to solve the problem of the phlegm
-Her left vocal chord is paralyzed from her PDA ligation
-I often take her in the shower with me in the morning, hoping it will help clear her pghlem. Also for a while she was on daily morning steroid (Pulmicort) breathing treatments, but it never made a difference in reduction of the pghelm morning vomits.
-She has her tonsils and adenoids (never been looked at), as I hate having her scoped as she is already so oral averse. Does not have ear tubes. She had 2 ear infections this year and 2 last year, minor ones.
-she is a very good pooper, never been constipated, EVER. That's why I've never felt her issue was delayed gastric emptying.
-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs straight at night without vomiting mostly.....she could only tolerate breast milk, any formula and she vomited at night too (this was donated breast milk so it wasn't "dairy free diet" breast milk. Because she never/rarely vomited at night, I've always believed that she didn’t have a milk issue. It's when she's awake that causes more problems. As an infant she slept on in include. NO longer, and was tube fed (BD) laying flat with no problem whatsoever.
-We had tried all the hyper allergenic formulas at one time or another, and no reduction in vomit. (a long time ago)
-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2 weeks, with no difference in reduction of phlegm
-when she was RAST allergy tested (at 14 mo), no milk allergy shown
-never had any other signs of allergy (no blood in stool) no rashes (except for some recent eczema on her feet and ankles)
-I just set an appointment to see an allergist (which is months away)
-it was when we switched to a BD (Blended diet) that her vomiting finally got under control 2-3 times a day and we could much more rapidly give tube feeds and we even were able to get rid of the night pump. We still gave her last BD feed after she went asleep, but we finished by midnight, and she never vomited. Her BD is milk/yogurt based, (again, remember at night we could feed her BD asleep with no issues of vomiting and she was lying flat)
- Her vomits are now one of 3 types: - phlegm induced (she tries to clear her throat and ends up emptying her stomach), gag induced (she's a horrible chewer and often swallows food whole which results in a vomit) or occasionally unannounced reflux type vomit (just comes all of a sudden, but this is VERY rare).
-She's been on prevacid solutabs for almost her whole life (after zantac didn't do anything, nor did prilosec), then again, we never saw any difference with prevacid either (no reduction in vomit, I know, PPI don't stop vomit, just reduce the acid)
-I took her off prevacid about 3 months ago, and felt strongly that her phlegm seemed to decrease. I just started her back on it again, as I'm afraid of the damage to her esophagus/teeth from the vomiting., but I happen to strongly think that it's increased how much phlegm she is dealing with.
-we tried a few weeks on Periactin and went 3 days without vomit and hardly any phlegm (first time EVER), then she got sick afterwards 3 times back to back, so we haven't tried that again.
-she now eats 100% orally, only purees and doesn't "like" to eat, especially when she has all that phlegm in her throat (for obvious reasons) Not a good chewer, although she tries to chew meat, it takes forever, and for us to get calories in we have blend her food
-her lungs are doing quite well all things considered, she doesn’t have asthma, has never had pneumonia since leaving the NICU (which typical refluxers get a lot of pneumonia) (although has had some serious colds that go into her lungs - one time bronchitis) and has had oral steroids a few times.
-She's been on probiotics for years now.
-she never writhed/screamed with eating like you think of "typical" refluxers, not signs of being uncomfortable except the refusal of eating.
-She was on reglan upon first coming home from NICU, no reduction in vomiting, stopped years ago.
-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.
Here are my ideas:
- She needs something to stop the production of phlegm. I think I’m going to take her off prevacid again and see if we get a reduction in phlegm like I think I did last time) as a trial. I'll put her on zantac to reduce the acid damage to her esophagus.
-now that she's not sick any more I'll put her back on periactin
-contemplating trying Domperidone (which I know isn't legal in the US), but my thought on Dom is that it is supposed to speed up processing time of food, don't know if she needs this but I've heard form quite a few other moms that it was a miracle worker for their vomiters. I'd like to know more why this drug was pulled in the US and how much of a dose I should give (Kaitlyn weighs just under 26 lbs)
UPDATE 5/27:
-Mother's intuition...I KNOW her vomits are pghelm related not GERD. I took her off back off the prevacid on Saturday (not much difference in vomiting and pghelm), put her back on 2ml of Zantac (last night) and last night gave her 5ml of Periactin before bed, and LO AND BEHOLD, she wolfed down her hot cereal this morning in 15 minutes, at the ENTIRE bowl (again with us spoon feeding her - we normally Can NEVER get the entire bowl in her due to all the pghelm and knowing she'll vomit if we push it), and NO pghlem and NO vomit!!!!
The question now, should I give her a daytime dose of periactin also? Last time on Periactin I gave her 5ml at night and 2ml at nap time. We had 3 days of no vomit (which was a first ever).
what's causing her pghelm? I know periactin is given to oral averse kids to increase appetite, but it's also an antihistamines, right? Claritin didn't seem to do anything
So many of you read my blog out there, that I'm pleading for help. I'm at my wits end. Kaitlyn continues to vomit and my docs don't seem to have any answers (I've given up in the past about getting an answer) but I was hoping and praying that it would just go away. It's not going away. it's HORRIBLE. This is our life. It SUCKS. It sucks for poor Kaitlyn . It sucks for mommy, daddy and Julia too. (our nanny). Please help us!!
She's still phlegmy! And the the phlegm is what causes her to vomit. Here's an example....
Called: "All Done Vomit"
She does this typically every day. Oh and did I mention that after she finished eating, she vomited again in the kitchen sink??? Well my nanny was able to catch her before she vomited and carted her to the sink (you become very experienced at knowing when when she's about to vomit the the pghlemy sounds she makes.) I actually heard pre-vomit sounds from my office, found my camera and caught the above vomit on film.
We work soooooo hard to get the meal in her and then to have her vomit it all back up, and pour it down the drain... it's a waste of everything, the food, the money, the time, our45 minute efforts per meal, her ability to gain weight not to mention poor little Kaitlyn having to "get used" to this and damage to her teeth and esophagus.
If you have any suggestions as to what we can do to eliminate the phlegm I will be eternally grateful!
Update post otherwise:
I think I had mentioned that Kaitlyn got sick AGAIN, the 3rd time in about 6 weeks. Luckily she only lost a tiny bit of weight and we continue to NOT doing night time feeds! This is huge. We've even been able to get a few oral meds in her (this could never happen before, as she gagged and vomited it up (along with anything that she had eaten before)....so maybe, maybe we can take out the tube in the "near" future? Now we still give her 2 tube water/drug feeds each day. One at night one during nap. Right now it's not bad having it, just knowing it's there is a relief actually, just in case. (and I have to say, it was quite nice to giver her Tylenol when she was sick at night without having to wake her up - hey trying to look at the bright side of having a tube)
I switched her back on to Prevacid Solutabs (for reflux) as her breath smelled horrible and I worry about acid damage....it doesn't seem to make any difference in her pghlem (and vomits). (wonder if it's worse?) As I recall last time I removed the drugs, she was less pghlemy?
I had a frustrating time last weekend, I went to a good friends 3 year old birthday party and when all the kids sat down to eat, I was hunched over (Not easy being pregnant) sitting on a child's chair on the other side of the room trying to feed Kaitlyn and became very jealous of how easy it is for the other parents. Pity party here (warning), but I have to say when I'm at home feeding her I don't "realize" how easy others have it sometimes. I think it's why we rarely go anywhere.... it's just a lot of work to feed her. A LOT of work. Now that she's older it's much more noticeable how different she is. I came home very bummed out. I hate feeling this way. I wish I could just be happy-go-lucky and not get jealous, but I have a hard time with comparing my daughter and my situation to others. Does that make me a horrible person? I feel that way.
I also spent the entire time chasing her around, no sitting down calmly for Kaitlyn doing art projects...she rarely sits down calmly....My gut still tells me that she has developmental issues, she seems very different to me than other children her age (or even age 2).
Yes, I tried to sit her down, even thought she said "cake" she wouldn't sit and have anything to do with food and joining the group.OK, enough with the pity party....
My pregnancy:
I'm 26 weeks today! Wow. I delivered the twins at 26 weeks and 6 days. I had been in the hospital by this point for a week already and had been on bed-rest for almost 10 weeks. Here I am up and about with no seemingly complications (except of course that my placentia is completely covering my cervix and could start causing serious issues at any time (or no issues). I have a ultra/sound today, so wish me luck on it clearing! I feel great pregnancy wise. With twins by this time I was having a really hard getting comfortable and sleeping (maybe had something to do with the fact that I never got out of bed), but carrying a singleton is so much easier.
I'm stressed over other issues: Maybe it's all hormonal being pregnant, but life's been a bit difficult lately, primarily financially. The real estate market has obviously been hit hard and that has hit our families wallet directly. It's frustrating to work a lot and not make any money. Seems pointless at times. Our house is little, so we are trying to sort and organize to get ready for the new arrival. The kids will both share a room. AS I need my 3rd bedroom for my office (again seems pointless at times)...Brian built closet-built ins to help fit both of their clothes, but then there was no room for my clothes (which took up 1/2 Kaitlyn's closet). Feeling cramped, cluttered and broke. Not a great time personally.
Oh again, enough with the pity party.
Gratitude thoughts: Kaitlyn is eating 100% orally, she's maintaining her weight, she is talking up a storm (hope you enjoy some of that after the vomit fest on the video), I am pregnant and I'm still pregnant, We are all healthy, We have a lot of friends and family who love us and care about us. (oh and just realized I've had over 200,000 visits to my blog since it's inception!) wow!
UPDATE (5/25):
Thank you all for all of your suggestions/ideas, please keep them coming. Many of you have had questions, so I'm going to give some more detailed medical background of our vomiter:
-No nissen, we've refused. The GI has been ok with us not doing one, as K has gained weight on her own little nice chart (albeit with a LOT of work on our part making up for the vomit). I truly believe this will not help her. I know with a Nissen she would continue to gag and get phlegm - it will just stop the vomit from coming up, but isn't going to solve the problem of the phlegm
-Her left vocal chord is paralyzed from her PDA ligation
-I often take her in the shower with me in the morning, hoping it will help clear her pghlem. Also for a while she was on daily morning steroid (Pulmicort) breathing treatments, but it never made a difference in reduction of the pghelm morning vomits.
-She has her tonsils and adenoids (never been looked at), as I hate having her scoped as she is already so oral averse. Does not have ear tubes. She had 2 ear infections this year and 2 last year, minor ones.
-she is a very good pooper, never been constipated, EVER. That's why I've never felt her issue was delayed gastric emptying.
-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs straight at night without vomiting mostly.....she could only tolerate breast milk, any formula and she vomited at night too (this was donated breast milk so it wasn't "dairy free diet" breast milk. Because she never/rarely vomited at night, I've always believed that she didn’t have a milk issue. It's when she's awake that causes more problems. As an infant she slept on in include. NO longer, and was tube fed (BD) laying flat with no problem whatsoever.
-We had tried all the hyper allergenic formulas at one time or another, and no reduction in vomit. (a long time ago)
-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2 weeks, with no difference in reduction of phlegm
-when she was RAST allergy tested (at 14 mo), no milk allergy shown
-never had any other signs of allergy (no blood in stool) no rashes (except for some recent eczema on her feet and ankles)
-I just set an appointment to see an allergist (which is months away)
-it was when we switched to a BD (Blended diet) that her vomiting finally got under control 2-3 times a day and we could much more rapidly give tube feeds and we even were able to get rid of the night pump. We still gave her last BD feed after she went asleep, but we finished by midnight, and she never vomited. Her BD is milk/yogurt based, (again, remember at night we could feed her BD asleep with no issues of vomiting and she was lying flat)
- Her vomits are now one of 3 types: - phlegm induced (she tries to clear her throat and ends up emptying her stomach), gag induced (she's a horrible chewer and often swallows food whole which results in a vomit) or occasionally unannounced reflux type vomit (just comes all of a sudden, but this is VERY rare).
-She's been on prevacid solutabs for almost her whole life (after zantac didn't do anything, nor did prilosec), then again, we never saw any difference with prevacid either (no reduction in vomit, I know, PPI don't stop vomit, just reduce the acid)
-I took her off prevacid about 3 months ago, and felt strongly that her phlegm seemed to decrease. I just started her back on it again, as I'm afraid of the damage to her esophagus/teeth from the vomiting., but I happen to strongly think that it's increased how much phlegm she is dealing with.
-we tried a few weeks on Periactin and went 3 days without vomit and hardly any phlegm (first time EVER), then she got sick afterwards 3 times back to back, so we haven't tried that again.
-she now eats 100% orally, only purees and doesn't "like" to eat, especially when she has all that phlegm in her throat (for obvious reasons) Not a good chewer, although she tries to chew meat, it takes forever, and for us to get calories in we have blend her food
-her lungs are doing quite well all things considered, she doesn’t have asthma, has never had pneumonia since leaving the NICU (which typical refluxers get a lot of pneumonia) (although has had some serious colds that go into her lungs - one time bronchitis) and has had oral steroids a few times.
-She's been on probiotics for years now.
-she never writhed/screamed with eating like you think of "typical" refluxers, not signs of being uncomfortable except the refusal of eating.
-She was on reglan upon first coming home from NICU, no reduction in vomiting, stopped years ago.
-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.
Here are my ideas:
- She needs something to stop the production of phlegm. I think I’m going to take her off prevacid again and see if we get a reduction in phlegm like I think I did last time) as a trial. I'll put her on zantac to reduce the acid damage to her esophagus.
-now that she's not sick any more I'll put her back on periactin
-contemplating trying Domperidone (which I know isn't legal in the US), but my thought on Dom is that it is supposed to speed up processing time of food, don't know if she needs this but I've heard form quite a few other moms that it was a miracle worker for their vomiters. I'd like to know more why this drug was pulled in the US and how much of a dose I should give (Kaitlyn weighs just under 26 lbs)
UPDATE 5/27:
-Mother's intuition...I KNOW her vomits are pghelm related not GERD. I took her off back off the prevacid on Saturday (not much difference in vomiting and pghelm), put her back on 2ml of Zantac (last night) and last night gave her 5ml of Periactin before bed, and LO AND BEHOLD, she wolfed down her hot cereal this morning in 15 minutes, at the ENTIRE bowl (again with us spoon feeding her - we normally Can NEVER get the entire bowl in her due to all the pghelm and knowing she'll vomit if we push it), and NO pghlem and NO vomit!!!!
The question now, should I give her a daytime dose of periactin also? Last time on Periactin I gave her 5ml at night and 2ml at nap time. We had 3 days of no vomit (which was a first ever).
what's causing her pghelm? I know periactin is given to oral averse kids to increase appetite, but it's also an antihistamines, right? Claritin didn't seem to do anything
Monday, May 12, 2008
Happy Mother's Day 2008
What a fabulous Mother's Day I had!!
Brian handed me breakfast in bed (even though I said I never wanted to "eat" in bed again after 10 weeks of it forced on me), flowers and the sweetest card, addressed to "Kaitlyn and Corinne's mommy" which of course made me cry. Brian fed Kaitlyn every feed yesterday, which is the best break of all for mommy. (Have I indicated how much I HATE feeding Kaitlyn?)
Kaitlyn woke up SICK again, (I guess we should have figured when she vomited in her bed the night before which she hasn't done in ages). Poor thing, I was complacent on turning on the monitor (it had been so long since she vomited once in bed) and Brian heard her crying when he walked by her room. Her cry is still so quiet we can't hear her. She was covered in vomit saying, "I'm ok, it's ok", my heart just melted.
Anyways, back to the good news of mother's day, even thought she was starting a cold, we decided to go ahead with our plans and take her to Train Town
in Sonoma County, which has trains to ride on, and mini amusement park rides. Kaitlyn had so much fun and of course I teared up again. Knowing that Mothers Day is all about seeing the joy in your children! Here are some pictures from the day! (as well as a few other recent pictures!)
Some Misc Pictures:
Pregnant mom holding Kaitlyn
Kaitlyn attempting to "smile" on comand on camera, she's not much of a smiler
Kaitlyn modeling her safety goggles
Belly pic of mom at 24 weeks
On a rare warm day, putting on sun-screen about to go in her kiddie pool
Kaitlyn has recently REALLY been looking at things up closely, this is new. We have to get her eyes checked out again.
Mother's Day pictures:
Kaitlyn on the plane ride, this was K's first "ride" on her own! No adults allowed
She couldn't figure out how to make the plane go up and down, but she tried!
Kaitlyn's first roller coaster ride with dad! She looked a bit nervous on the ride, but seemed to enjoy it!
Dad and Kaitlyn in the miniature firehouse in Train Town
A view of the "small" train as well as the miniature buildings of Train Town. It was so cute!
Dad and Kaitlyn getting ready for our ride (yes that's a washcloth pinned to K to wipe her constantly running nose)
A rare smile on camera!
Mom and Kaitlyn on the merry go round, what better mothers day could I ask for?
The family!
What a great day we had
Feeding the goats
Mom and Kaitlyn feeding the goats
After we left Train Town, we went downtown to the town of Sonoma and picked up some bread and cheese for a picnic. We then went to a winery and had a picnic and I celebrated with a 1/2 glass of wine. Dad fed Kaitlyn and we headed home. (K didn't have a nap so she was one tired girl by the time we got home).
Wow, what a great Mother's Day I had yesterday! Thank you Brian!
Brian handed me breakfast in bed (even though I said I never wanted to "eat" in bed again after 10 weeks of it forced on me), flowers and the sweetest card, addressed to "Kaitlyn and Corinne's mommy" which of course made me cry. Brian fed Kaitlyn every feed yesterday, which is the best break of all for mommy. (Have I indicated how much I HATE feeding Kaitlyn?)
Kaitlyn woke up SICK again, (I guess we should have figured when she vomited in her bed the night before which she hasn't done in ages). Poor thing, I was complacent on turning on the monitor (it had been so long since she vomited once in bed) and Brian heard her crying when he walked by her room. Her cry is still so quiet we can't hear her. She was covered in vomit saying, "I'm ok, it's ok", my heart just melted.
Anyways, back to the good news of mother's day, even thought she was starting a cold, we decided to go ahead with our plans and take her to Train Town
in Sonoma County, which has trains to ride on, and mini amusement park rides. Kaitlyn had so much fun and of course I teared up again. Knowing that Mothers Day is all about seeing the joy in your children! Here are some pictures from the day! (as well as a few other recent pictures!)
Some Misc Pictures:
Pregnant mom holding Kaitlyn
Kaitlyn attempting to "smile" on comand on camera, she's not much of a smiler
Kaitlyn modeling her safety goggles
Belly pic of mom at 24 weeks
On a rare warm day, putting on sun-screen about to go in her kiddie pool
Kaitlyn has recently REALLY been looking at things up closely, this is new. We have to get her eyes checked out again.Mother's Day pictures:
Kaitlyn on the plane ride, this was K's first "ride" on her own! No adults allowed
She couldn't figure out how to make the plane go up and down, but she tried!
Kaitlyn's first roller coaster ride with dad! She looked a bit nervous on the ride, but seemed to enjoy it!
Dad and Kaitlyn in the miniature firehouse in Train Town
A view of the "small" train as well as the miniature buildings of Train Town. It was so cute!
Dad and Kaitlyn getting ready for our ride (yes that's a washcloth pinned to K to wipe her constantly running nose)
A rare smile on camera!
Mom and Kaitlyn on the merry go round, what better mothers day could I ask for?
The family!
What a great day we had
On the ferris wheel
Feeding the goats
Mom and Kaitlyn feeding the goatsAfter we left Train Town, we went downtown to the town of Sonoma and picked up some bread and cheese for a picnic. We then went to a winery and had a picnic and I celebrated with a 1/2 glass of wine. Dad fed Kaitlyn and we headed home. (K didn't have a nap so she was one tired girl by the time we got home).
Wow, what a great Mother's Day I had yesterday! Thank you Brian!
Tuesday, April 29, 2008
To My sisters...
This was recently sent to me:
To You, My Sisters (and Brothers!)
by Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
To You, My Sisters (and Brothers!)
by Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Friday, April 25, 2008
22 week ultrasound
I had another ultra-sound a few days ago at 22 weeks, and sadly, my Placenta Previa (PP) is still in place. (my placenta is covering my cervix) For those of you who want a bit more info as to what PP is, here is a picture:
I have Complete PP, which means my cervix is compltely covered by the plaenta.
From the Mayo clinic.com "If you have placenta previa, the placenta will detach from the lower part of the uterus as the cervix begins to open in preparation for labor. This can cause severe vaginal bleeding. Thankfully, placenta previa is nearly always detected before a woman or her baby is in significant danger. Although some women have light bleeding or spotting during the first trimester or early second trimester, bleeding associated with placenta previa usually occurs near the end of the second trimester or the beginning of the third. The amount of bleeding may range from light to heavy. And it may stop, but it nearly always recurs days or weeks later. Some women who have placenta previa experience contractions with bleeding."
So, that's it, just wait and see.
Now it is still very likely (wishful thinking) that it may go away as the size of my uterus grows with our baby boy. But it's a waiting game! If it doesn't go away, it could cause serious complications (pre-term birth), so every time I have an ultra-sound I'll be hoping for good news. My next ultrasound will be at 26 weeks (wow, that's when I delivered before - very surreal).
The good news is that all the extra ultrasounds means that I get to see my little guy. And it's definitely a little guy!
Kaitlyn and I caught dads bug, at least in me, it's just a cold, but Katilyn once again has developed a bad cough, so we are back to doing breathing treatments again around the clock.
And not great timing, tomorrow is our March of Dimes Walk! Thanks to ALL of you have so generously donated in name of our girls! Brian's firehouse donated $500.00! Wow, thank you San Francisco Fire Station #1!! In that I'm so inovled iwth our local Family Teams Chapter, we'll be going no matter what, but wiht my PP and all, I think it will be a short walk this year for the McCarthys. We have about 7 others joining us this year, so it should be a lot of fun!
I have Complete PP, which means my cervix is compltely covered by the plaenta.
From the Mayo clinic.com "If you have placenta previa, the placenta will detach from the lower part of the uterus as the cervix begins to open in preparation for labor. This can cause severe vaginal bleeding. Thankfully, placenta previa is nearly always detected before a woman or her baby is in significant danger. Although some women have light bleeding or spotting during the first trimester or early second trimester, bleeding associated with placenta previa usually occurs near the end of the second trimester or the beginning of the third. The amount of bleeding may range from light to heavy. And it may stop, but it nearly always recurs days or weeks later. Some women who have placenta previa experience contractions with bleeding."
So, that's it, just wait and see.
Now it is still very likely (wishful thinking) that it may go away as the size of my uterus grows with our baby boy. But it's a waiting game! If it doesn't go away, it could cause serious complications (pre-term birth), so every time I have an ultra-sound I'll be hoping for good news. My next ultrasound will be at 26 weeks (wow, that's when I delivered before - very surreal).
The good news is that all the extra ultrasounds means that I get to see my little guy. And it's definitely a little guy!
Kaitlyn and I caught dads bug, at least in me, it's just a cold, but Katilyn once again has developed a bad cough, so we are back to doing breathing treatments again around the clock.
And not great timing, tomorrow is our March of Dimes Walk! Thanks to ALL of you have so generously donated in name of our girls! Brian's firehouse donated $500.00! Wow, thank you San Francisco Fire Station #1!! In that I'm so inovled iwth our local Family Teams Chapter, we'll be going no matter what, but wiht my PP and all, I think it will be a short walk this year for the McCarthys. We have about 7 others joining us this year, so it should be a lot of fun!
Tuesday, April 22, 2008
Teaching the bunny to vomit
Ok, I'm posting this picture for all of us moms out there whose children vomit non-stop without any explanation form the doctors. This seems to be a common thread of early micro-preemies. Unexplained vomiting. And knowing from experience it's really an awful thing for us parents as much as it is for our children. Not only do we live in constant fear of vomit-fest, we smell like vomit all the time from cleaning it up, our carpets are ruined forever, we limit were we go in public, we never go on vacation and on top of it, we work sooo hard to get food in them it's the most frustrating experience that unless you "live" it you can't imagine, but seeing all that "effort" go down the drain, literally.
This was taken by my good friend Lisa here in SF. She has 2 sets of twins, all preemies. One of her daughters has a very serious, life-threatening medical metabolic condition, which has landed her in the ICU too many times to count. She turns blue all the time without reason, she's also is a huge vomiter and doesn't eat.
This picture was taken in the ICU, where Morgie was "teaching her bunny how to vomit." Sometimes we need some humor! She even has the mouth motion going to teach the bunny how it's done!!
This was taken by my good friend Lisa here in SF. She has 2 sets of twins, all preemies. One of her daughters has a very serious, life-threatening medical metabolic condition, which has landed her in the ICU too many times to count. She turns blue all the time without reason, she's also is a huge vomiter and doesn't eat.
This picture was taken in the ICU, where Morgie was "teaching her bunny how to vomit." Sometimes we need some humor! She even has the mouth motion going to teach the bunny how it's done!!
Thursday, April 17, 2008
April Update
Kaitlyn had Bronchitis, but some serious anti-biotics helped take care of it. (thankfully). She still has a bit of a runny nose, but is now sounding much better (meaning, no more breathing treatments). Her skin rash (eczema?) also seems to have cleared up (using cremes and such) not sure really what caused it, maybe it was the goats milk or the soy milk products we were using when we went cow-dairy free.
She is still vomiting too, The other night I was having a really good dinner, nearing the end and she tried to swallow a potato from her potato salad whole (even though it's mashed down) and ended up gagging (normal for her) and emptying her entire stomach and then some. I was so shocked by the size of the vomit, I had to weigh it, it was 175 g....her meals aren't that much, so there was definitely water and food from her previous feed.
Here's the best news of all, we charted Kaitlyn's weight (not a lot the last 4 months) but she's still right on her own little curve on the chart, but she's one active little girl and I was very tiny as a baby also. So we decided to DC the night tube feeds! Do you know what that means? It means my daughter will be eating 100% orally for the first time EVER. We are not increasing the amount she takes in during the day (there is no way she could tolerate it), but the night feeds have supposed to have been for supplementing what she looses when she vomits. We'll try it for month, closely watching her weight to see how she does.
What this means: I can sit on the couch like a "normal" parent once she goes to bed. I don't have to prepare and make her Blended Diet, I don't have to get up every 20-30 minutes to push in a syringe of food into her belly, I don't have to wash the syringes, flush the tubing, ugggghhh, I can't tell you how great this is going to be for us! I can't wait!
We had a bout of incredible weather last weekend (it was nearing 90) and Kaitlyn and I went to the beach (Dad was out of town for a week) and we had a blast, (excepting of course that she vomited at the beach, and I longingly watched other toddlers sitting nearby nicely eating their food and was wracked with a bit of jealousy). Kaitlyn also did not like getting dirty, she wanted to leave not long after we got there in fact, which sucked as it's an hour drive from my house. But Mom sure enjoyed the sunshine and Kaitlyn loved putting her feet in the ocean (even though it was freezing).
Pregnancy:
I'm 21 weeks as of yesterday (5months 1 week). My next ultra sound is next week to see if possibly hopefully my planctia previa may have moved. I feel great! Just worried. I've grown a lot all of a sudden!
Brian is quite sick sadly. He was out of town for a week, with his newly finished four-wheeler (He had a great time and I was so happy for him, especially that it's finished). He went to work the day after he got home and has been in bed since he got off work yesterday. He feels horrible! Hoping that Kaitlyn, myself and baby boy don't get it!
10pm update: first night of no tube feeding - WOW, it feels so strange! I'm really enjoying this! But Kaitlyn did just have a weird crying/moaning/trashing bit in her sleep, this is her first NIGHT without food! Wonder if it's related?
Kaitlyn's peeling hands
We are back to using the DVD for most of the feeds. We start the feeds without one, and unfortunately you get some of this behavior: (so different than the last video I posted right?)She is still vomiting too, The other night I was having a really good dinner, nearing the end and she tried to swallow a potato from her potato salad whole (even though it's mashed down) and ended up gagging (normal for her) and emptying her entire stomach and then some. I was so shocked by the size of the vomit, I had to weigh it, it was 175 g....her meals aren't that much, so there was definitely water and food from her previous feed.
poor baby...yes, that's a bowl full of vomit
Dr Patel (http://www.clinic4kidz.com/ Was here today (her feeding therapist). She was amazed how well Kaitlyn was doing. I don't see as much improvement from day to day, because it's my life sadly, but she kept saying over and over how well she was doing.
Here's the best news of all, we charted Kaitlyn's weight (not a lot the last 4 months) but she's still right on her own little curve on the chart, but she's one active little girl and I was very tiny as a baby also. So we decided to DC the night tube feeds! Do you know what that means? It means my daughter will be eating 100% orally for the first time EVER. We are not increasing the amount she takes in during the day (there is no way she could tolerate it), but the night feeds have supposed to have been for supplementing what she looses when she vomits. We'll try it for month, closely watching her weight to see how she does.
What this means: I can sit on the couch like a "normal" parent once she goes to bed. I don't have to prepare and make her Blended Diet, I don't have to get up every 20-30 minutes to push in a syringe of food into her belly, I don't have to wash the syringes, flush the tubing, ugggghhh, I can't tell you how great this is going to be for us! I can't wait!
We had a bout of incredible weather last weekend (it was nearing 90) and Kaitlyn and I went to the beach (Dad was out of town for a week) and we had a blast, (excepting of course that she vomited at the beach, and I longingly watched other toddlers sitting nearby nicely eating their food and was wracked with a bit of jealousy). Kaitlyn also did not like getting dirty, she wanted to leave not long after we got there in fact, which sucked as it's an hour drive from my house. But Mom sure enjoyed the sunshine and Kaitlyn loved putting her feet in the ocean (even though it was freezing).
Pregnancy:
I'm 21 weeks as of yesterday (5months 1 week). My next ultra sound is next week to see if possibly hopefully my planctia previa may have moved. I feel great! Just worried. I've grown a lot all of a sudden!
Brian is quite sick sadly. He was out of town for a week, with his newly finished four-wheeler (He had a great time and I was so happy for him, especially that it's finished). He went to work the day after he got home and has been in bed since he got off work yesterday. He feels horrible! Hoping that Kaitlyn, myself and baby boy don't get it!
10pm update: first night of no tube feeding - WOW, it feels so strange! I'm really enjoying this! But Kaitlyn did just have a weird crying/moaning/trashing bit in her sleep, this is her first NIGHT without food! Wonder if it's related?
Tuesday, April 08, 2008
An amazing feed (2 months ago)
I sometimes hesitate to post really great videos like this one here, as I then hear from people, oh wow, Kaitlyn is fine. She's eating just like a toddler. and they think that my life is "easy." It's so far from the truth. Sadly, Kaitlyn's eating started really going down-hill not long after this, her bad behavior came back in and we've had to reinstall her watching the DVD and she's not willing to feed herself more than 2 bites any longer.
But anyways, this was a really great feed and I forget sometimes as I'm in the middle of vomit and marathon feeding sessions that she is eating and 6 months ago she ate NOTHING by mouth.
Enjoy
But anyways, this was a really great feed and I forget sometimes as I'm in the middle of vomit and marathon feeding sessions that she is eating and 6 months ago she ate NOTHING by mouth.
Enjoy
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