Part of Baby I's surgery consult was a script to go get some blood typing done--because I am Rh-, all of our children have their blood typing done at birth to see whether or not I need the second Rhogam shot after birth (lucky me, every single child is Rh+ and that second shot hurts way worse than the first during pregnancy......). So they were able to get Baby I's blood type (B+) but the birth hospital did not run all the screenings they need so the following week she and I headed for our local hospital to get it done.
Baby I had the charm turned on :) She charmed people while we were signing in at registration, while in the registration waiting room, while we were sitting with the registrar, signing in to the lab, waiting in the lab waiting room.....well, you get the picture :p Every where we went in the hospital, Baby I made a new adoring fan and there are many people now sending her prayers and well wishes for her upcoming surgery.
We were in the lab waiting room for a while waiting for a tech to come that could do a blood draw on such a little baby. Then we had to wait for the blood draw cubicle that had the little bed to lay her on. Then we had to wait for several other techs to be free to help. Baby I laid on the tiny bed and I held her free hand and her head. Someone else stood at her feet and held those (kick kick kick.....). Someone else held the arm they were drawing off. The woman doing the blood draw got the needle in (oh, my, the screaming! Poor baby :( ) and filled the first vial but because she had to hold the needle in (even with someone holding her arm, Baby I was a wiggle machine trying to get away) to ensure it stayed in place so she couldn't exchange her vials. I guess they expect this because yet another tech stood behind her and would step forward, remove the full vial and slip the next one in. Thankfully, it was done quickly and Baby I had her band aid and some cuddles and was soon all smiles again.
It does make me nervous, though, about her surgery. I get all misty eyed when she gets shots or a blood draw and things will be so much worse :\
Fast forward to today: Baby I's fever broke but she still has a little cough. Still hoping she'll be all better by Monday.
Oh, and we had S's IEP meeting yesterday and there is much to report but I think that shall have to wait until I have more time (and energy) to get it going. I am hopeful, however, that the proposed changes to the way both we at home and the school will handle him will be positive for him :) I am VERY glad I pushed for the full evaluation--we found out things that will be so helpful that we wouldn't have known had the experts not done those evaluations :)
Thursday, March 29, 2012
Tuesday, March 27, 2012
:(
I am behind a few posts on what has been going on (no time) but quickie update:
**B hates speech therapy playgroup for 75% of the time we are there. The other 25% he thinks is awesome. I am hoping those ratios get better....
**I am sick. Again. I need to not be sick because if I am sick when Baby I has her surgery, I can't be with her :(
**This may be a moot point, however, since Baby I now has her very first fever. If she isn't well on Monday, we have to call and reschedule her surgery.
**S has been having evaluations at school for his ADHD to get an IEP. Our meeting is tomorrow but the occupational therapist emailed me the report just now--she believes he also has a Sensory Processing Disorder and wants him to have occupational therapy at school and at home.
**B hates speech therapy playgroup for 75% of the time we are there. The other 25% he thinks is awesome. I am hoping those ratios get better....
**I am sick. Again. I need to not be sick because if I am sick when Baby I has her surgery, I can't be with her :(
**This may be a moot point, however, since Baby I now has her very first fever. If she isn't well on Monday, we have to call and reschedule her surgery.
**S has been having evaluations at school for his ADHD to get an IEP. Our meeting is tomorrow but the occupational therapist emailed me the report just now--she believes he also has a Sensory Processing Disorder and wants him to have occupational therapy at school and at home.
Saturday, March 24, 2012
Surgery Consult, PT II
The surgeon we were meeting with, Dr W (Chief of Cardiovascular Surgery), got out of his surgery right about the time we were finished with the echo so we had a short wait while he got ready for the appointment. He came out, introduced himself, and let us know he was just going to run over to cardiology to review her echo so we wouldn't have to wait for it to be sent over.
When he was done, it was time to talk surgery. He said she is doing fairly well and we don't need to go in immediately but that he wouldn't wait longer than a month or two because he doesn't want to risk permanent damage to the heart and lungs. So he checked his schedule and his first available is April 10th so we are on the books. He did warn us that he has been seeing a lot of more urgent cases lately so it is possible we could get bumped for a baby (or babies) that need surgery right away. I'm okay with that. If my baby was in a position where she needed her surgery immediately, I should hope another family would be understanding and willing to give up their spot if their baby is like Baby I and has time before surgery becomes an immediate need. Part of the workup was to give her the official Failure to Thrive diagnosis because of her inability to gain weight. He said not to worry about it because in his experience, after surgery she will be an excellent gainer and will soon lose the label :p
Dr W was very thorough in going over everything going on. He talked about the size of her VSD and drew some diagrams about where it is and how it is effecting the bloodflow. He believes the disparity in the size of her Pulmonary Arteries is being caused by the extra bloodflow from her VSD and once the hole is repaired, the PAs shouldn't cause any problems but they will keep a close eye to make sure and Baby I may end up needing a cath at some point. The extra vein Dr E mentioned is an extra Superior Vena Cava that comes in from the left side (LSVC). Dr W says it is considered within the normal for hearts because it doesn't cause any problems and they usually don't even know people have them unless they are looking for something else. It makes the surgery a litte more complicated because they have to adapt the bypass but he says he's done it before and it isn't a big problem. The ASD was almost closed last month at cardio and they didn't see it on the echo this time--Dr W isn't sure if it is closed because they didn't get a clear view of the area during the echo because Baby I was not the most cooperative ;) However, part of her pre-op is another thorough echo so he will take a good look to see if he can see a hole so he can be prepared if it definitely needs to have a stitch or two to close it.
He talked us through the surgery, what to expect, what would happen, how long it normally takes, his expectations for recovery, etc etc. So much information.....We also met with the nurse after meeting with Dr W and she repeated some of the same information and gave us a folder full of handouts and policies and things. And a script for Baby I to go get her blood typing done so they can order the blood for the bypass machine.
It was a very long day and I am sure I have forgotten many things--information overload!
Oh, and Mr. Piper and I were talking about Dr W on the way home--we both got the same impression of kindness, knowledge, reassurance and calm. Excellent qualities to make you feel better about the fact that your baby will soon be undergoing such a major surgery...
When he was done, it was time to talk surgery. He said she is doing fairly well and we don't need to go in immediately but that he wouldn't wait longer than a month or two because he doesn't want to risk permanent damage to the heart and lungs. So he checked his schedule and his first available is April 10th so we are on the books. He did warn us that he has been seeing a lot of more urgent cases lately so it is possible we could get bumped for a baby (or babies) that need surgery right away. I'm okay with that. If my baby was in a position where she needed her surgery immediately, I should hope another family would be understanding and willing to give up their spot if their baby is like Baby I and has time before surgery becomes an immediate need. Part of the workup was to give her the official Failure to Thrive diagnosis because of her inability to gain weight. He said not to worry about it because in his experience, after surgery she will be an excellent gainer and will soon lose the label :p
Dr W was very thorough in going over everything going on. He talked about the size of her VSD and drew some diagrams about where it is and how it is effecting the bloodflow. He believes the disparity in the size of her Pulmonary Arteries is being caused by the extra bloodflow from her VSD and once the hole is repaired, the PAs shouldn't cause any problems but they will keep a close eye to make sure and Baby I may end up needing a cath at some point. The extra vein Dr E mentioned is an extra Superior Vena Cava that comes in from the left side (LSVC). Dr W says it is considered within the normal for hearts because it doesn't cause any problems and they usually don't even know people have them unless they are looking for something else. It makes the surgery a litte more complicated because they have to adapt the bypass but he says he's done it before and it isn't a big problem. The ASD was almost closed last month at cardio and they didn't see it on the echo this time--Dr W isn't sure if it is closed because they didn't get a clear view of the area during the echo because Baby I was not the most cooperative ;) However, part of her pre-op is another thorough echo so he will take a good look to see if he can see a hole so he can be prepared if it definitely needs to have a stitch or two to close it.
He talked us through the surgery, what to expect, what would happen, how long it normally takes, his expectations for recovery, etc etc. So much information.....We also met with the nurse after meeting with Dr W and she repeated some of the same information and gave us a folder full of handouts and policies and things. And a script for Baby I to go get her blood typing done so they can order the blood for the bypass machine.
It was a very long day and I am sure I have forgotten many things--information overload!
Oh, and Mr. Piper and I were talking about Dr W on the way home--we both got the same impression of kindness, knowledge, reassurance and calm. Excellent qualities to make you feel better about the fact that your baby will soon be undergoing such a major surgery...
Saturday, March 17, 2012
Surgery Consult, pt I
Thursday was Baby I's surgery consult. Normally, we go to the Children's Hospital in the mornings for her Synagis so there is no problem with parking. Her surgery consult, however, was in the afternoon and we just kept going up and up and up and up in the parking garage. The fourteenth floor was the top and we finally found a parking spot. I was out of the car helping guide him in and he finally gets the van parked......and he can't open his door because of a cement column LOL So out he pulls and manages to turn the van around (very very narrow lanes and parking spots) and pull in the other way so he can get out.
We head inside and go to registration and sign in. And wait. And wait. And wait. No one is there, we are the only ones on the list, no one seems to know where the registration people are or where to find them and we just "need to be patient." Good thing I am a stickler for being early whenever we have an appointment at the Hospital. The registration lady finally comes back and tells us we don't need to register (despite the instructions telling us to register when we got the confirmation message) but actually just need to grab a pass from the front desk (that no one ever asks for or looks at so what was the point?).
Up to Pediatric Cardiovascular Surgery we go where the check us in and send us over to the Cardiology department. Where we wait. And wait. And wait. They let us know they are running late but the surgeon we are meeting with after the echo got pulled into surgery today so he is late, too, so no big deal, I guess :p Baby I had fun watching people :)
They get a weight check on her and she has eked out a few more ounces! Yay! Up to thirteen five :D She puts on a tiny tiny hospital gown--I didn't even know they made them that small. It was so cute but my husband refused to take a picture of her in it. He says he doesn't want reminders of this time. I think that some day, she may want to know about the scar on her chest and she might want to know these little details and pictures. And a picture of her smiling and looking cute in a little yellow gown isn't so bad :) I took a few with my phone but she was having such an active day they are a bit blurry and some have parts of her head cut off because she was bouncing around :p If I think about it, I'll edit once I am on my computer and upload the best of them here :)
So now its time to do some more waiting in the back hallway of the cardiology department until an echo room opens up. It seemed to take forever but that may have just been because the chairs were really uncomfortable and Baby I decided she needed to nurse RIGHT NOW. Nothing like nursing thirteen pounds of wiggle worm on an uncomfortable chair ;)
We finally make it into an echo room. At first, Baby I reacts as she does to all of her echoes--she is happy and smiley and there is a little leg kicking and some grabbing of the wand and attempts to chew on the tech's fingers. And then she decides she has had enough and oh, the crying and the squirming and the tiny impotent fury. The next hour saw us trying everything we could think of to keep her calm and still long enough for the tech to get a few pics--cooling her down with damp cloths, playing a musical/lighted toy, letting her chomp on my finger, holding her. patting her, stopping to nurse, stopping to cuddle, breaking out the toy again, trying a cartoon on the tv, singing to her, etc etc. Fun times. Eventually, between the tech and one of the cardiologists, they got what they needed and we headed back to the surgery department.
To be continued......
We head inside and go to registration and sign in. And wait. And wait. And wait. No one is there, we are the only ones on the list, no one seems to know where the registration people are or where to find them and we just "need to be patient." Good thing I am a stickler for being early whenever we have an appointment at the Hospital. The registration lady finally comes back and tells us we don't need to register (despite the instructions telling us to register when we got the confirmation message) but actually just need to grab a pass from the front desk (that no one ever asks for or looks at so what was the point?).
Up to Pediatric Cardiovascular Surgery we go where the check us in and send us over to the Cardiology department. Where we wait. And wait. And wait. They let us know they are running late but the surgeon we are meeting with after the echo got pulled into surgery today so he is late, too, so no big deal, I guess :p Baby I had fun watching people :)
They get a weight check on her and she has eked out a few more ounces! Yay! Up to thirteen five :D She puts on a tiny tiny hospital gown--I didn't even know they made them that small. It was so cute but my husband refused to take a picture of her in it. He says he doesn't want reminders of this time. I think that some day, she may want to know about the scar on her chest and she might want to know these little details and pictures. And a picture of her smiling and looking cute in a little yellow gown isn't so bad :) I took a few with my phone but she was having such an active day they are a bit blurry and some have parts of her head cut off because she was bouncing around :p If I think about it, I'll edit once I am on my computer and upload the best of them here :)
So now its time to do some more waiting in the back hallway of the cardiology department until an echo room opens up. It seemed to take forever but that may have just been because the chairs were really uncomfortable and Baby I decided she needed to nurse RIGHT NOW. Nothing like nursing thirteen pounds of wiggle worm on an uncomfortable chair ;)
We finally make it into an echo room. At first, Baby I reacts as she does to all of her echoes--she is happy and smiley and there is a little leg kicking and some grabbing of the wand and attempts to chew on the tech's fingers. And then she decides she has had enough and oh, the crying and the squirming and the tiny impotent fury. The next hour saw us trying everything we could think of to keep her calm and still long enough for the tech to get a few pics--cooling her down with damp cloths, playing a musical/lighted toy, letting her chomp on my finger, holding her. patting her, stopping to nurse, stopping to cuddle, breaking out the toy again, trying a cartoon on the tv, singing to her, etc etc. Fun times. Eventually, between the tech and one of the cardiologists, they got what they needed and we headed back to the surgery department.
To be continued......
Friday, March 16, 2012
Tuesday, March 13, 2012
Six Months Old
Baby I turned six months old on Friday and on Monday, she had her six month well baby visit. She really loves her pediatrician--she always gives her big smiles and starts bouncing around on my lap when Dr A comes in :)
Dr A says she is looking good, although she is the size of an average three month old. She gained a tiny bit of weight since her Synagis appointment last week--up to 13 lb 2.6 oz. And she added a little length as well--25 and 3\4 inches.
Her Zantac isn't working very well lately so Dr A upped her dosage to 2ml every twelve hours. Last night was a bit better so here's hoping the new dose kicks in soon and she is back to feeling a lot better. There has been far too much crying lately :( She seems fairly happy and content at the moment and this is the longest I've been able to set her down in days so I am a little bit hopeful. And I really should go do some laundry or something while I have a few moments LOL
Dr A says she is looking good, although she is the size of an average three month old. She gained a tiny bit of weight since her Synagis appointment last week--up to 13 lb 2.6 oz. And she added a little length as well--25 and 3\4 inches.
Her Zantac isn't working very well lately so Dr A upped her dosage to 2ml every twelve hours. Last night was a bit better so here's hoping the new dose kicks in soon and she is back to feeling a lot better. There has been far too much crying lately :( She seems fairly happy and content at the moment and this is the longest I've been able to set her down in days so I am a little bit hopeful. And I really should go do some laundry or something while I have a few moments LOL
Thursday, March 8, 2012
B had his first speech therapy playgroup yesterday and that boy was not in the mood to be cooperative! The therapists and other parents told me that it is pretty normal for a new kid in the group and that it takes most kids a few times to get into the rhythm of things. I sure hope so because that was pretty stressful LOL I do hope next week goes better!
The weather here got fairly warm the last few days--all the way up to seventy yesterday with sun shining. Unfortunately, the wind was strong and made it difficult for Baby I to breathe whenever a gust blew into her face. She was bundled into her stroller and every time a gust of wind came along, I turned the stroller sideways so the wind didn't hit her. She looked surprised every time the wind came along LOL
The boys, however, were not bothered at all by the wind and happily ran around playing, happy to finally be able to be outside playing. Between cold and wind and snow and rain and soggy ground (it has been a weird winter), they have mostly been trapped inside. S had to run from place to place, trying out everything. B had to be the little brother and follow his big brother everywhere :)
And a bonus picture from the other day, just because :p
The weather here got fairly warm the last few days--all the way up to seventy yesterday with sun shining. Unfortunately, the wind was strong and made it difficult for Baby I to breathe whenever a gust blew into her face. She was bundled into her stroller and every time a gust of wind came along, I turned the stroller sideways so the wind didn't hit her. She looked surprised every time the wind came along LOL
The boys, however, were not bothered at all by the wind and happily ran around playing, happy to finally be able to be outside playing. Between cold and wind and snow and rain and soggy ground (it has been a weird winter), they have mostly been trapped inside. S had to run from place to place, trying out everything. B had to be the little brother and follow his big brother everywhere :)
And a bonus picture from the other day, just because :p
Tuesday, March 6, 2012
Synagis, the Last
Yesterday was Baby I's final Synagis shot--again, we nursed through the shot and she did very well :) She didn't even realize she was getting it until it was almost done and she cried for about thirty seconds this time before returning to nursing and settling back down (the nurse administering the shot was amazed at how little she cried since all the babies scream over that shot). Of course, shots of any type mean extra sleeping:
She was insistent that any sleeping HAD to be done right next to me so I spent a lot of time reading in bed while she napped :p No bassinet or bouncy chair for her!
The good news is that she managed to eke out just a little bit more weight and broke the thirteen pound mark :D Granted, she was 13 lb 0.6 ounces but it was still above thirteen ;)
I was feeling a little irritated today--I refilled Baby I's heart meds at the pharmacy because she is almost out. Being such a little thing, she is on very low doses of Lasix and Aldactone and not only does the literature for these drugs have warnings but the pharmacist and the cardiologist and the pediatrician have all mentioned how very important it is to give exact doses. Too little and it won't work and her heart and lungs will struggle too much. Too much and Very Bad Things can happen. So I need medicine droppers that can measure out very small amounts--you cannot buy ones over the counter that handle those amounts so precisely. I have to rely on the pharmacy to provide me with syringes with the needles removed to dispense the meds. They know I can't get them. They know I need them. They know I can't buy over the counter dispensers and "guesstimate" the dosages. And yet, every single time, I have to fight for these syringes. Every time. ARGH. And it isn't as though I am asking for a new syringe for every dose--I need new syringes about every two weeks because the numbers wear off and I can no longer see the lines to get correct dosages. I make them last as long as I can. And I only ask for three at the most (she is also and Zantac but I do not have to be as precise with that dosage so I can use over the counter droppers but prefer not to because they are too big for Baby I's mouth and she is a terror to give Zantac to :p Smaller droppers are easier to get down). So I am irritated once again that it was suggested I buy an over-the-counter dropper and that I once again had to point out that you cannot "guesstimate" with heart meds for a tiny baby. *sigh* Rant over. I think ;)
Tomorrow B has his first speech therapy playgroup--fingers crossed that he doesn't spend the entire time hiding behind my legs!
She was insistent that any sleeping HAD to be done right next to me so I spent a lot of time reading in bed while she napped :p No bassinet or bouncy chair for her!
The good news is that she managed to eke out just a little bit more weight and broke the thirteen pound mark :D Granted, she was 13 lb 0.6 ounces but it was still above thirteen ;)
I was feeling a little irritated today--I refilled Baby I's heart meds at the pharmacy because she is almost out. Being such a little thing, she is on very low doses of Lasix and Aldactone and not only does the literature for these drugs have warnings but the pharmacist and the cardiologist and the pediatrician have all mentioned how very important it is to give exact doses. Too little and it won't work and her heart and lungs will struggle too much. Too much and Very Bad Things can happen. So I need medicine droppers that can measure out very small amounts--you cannot buy ones over the counter that handle those amounts so precisely. I have to rely on the pharmacy to provide me with syringes with the needles removed to dispense the meds. They know I can't get them. They know I need them. They know I can't buy over the counter dispensers and "guesstimate" the dosages. And yet, every single time, I have to fight for these syringes. Every time. ARGH. And it isn't as though I am asking for a new syringe for every dose--I need new syringes about every two weeks because the numbers wear off and I can no longer see the lines to get correct dosages. I make them last as long as I can. And I only ask for three at the most (she is also and Zantac but I do not have to be as precise with that dosage so I can use over the counter droppers but prefer not to because they are too big for Baby I's mouth and she is a terror to give Zantac to :p Smaller droppers are easier to get down). So I am irritated once again that it was suggested I buy an over-the-counter dropper and that I once again had to point out that you cannot "guesstimate" with heart meds for a tiny baby. *sigh* Rant over. I think ;)
Tomorrow B has his first speech therapy playgroup--fingers crossed that he doesn't spend the entire time hiding behind my legs!
Sunday, March 4, 2012
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