Hi Family & Friends in the Chicagoland area that are interested in donating for the little Missy on her upcoming surgery. You need to do a few things to qualify and donate specifically for her, I'm sorry I didn't get the info out sooner, I only know this stuff now because Grandpa ran into some roadblocks and gave me a heads up.
You need to call ahead to schedule the donation that will specifically be set aside for Olivia. The blood has to be donated between Today and Monday due to Dr. Ilbawi's instructions. Please be aware that some Lifesources in Chicago will not facilitate these specific donations so you need to outright ask if they can or they will when you're calling to set up the appointment.
Also, you need to know her birthday - 3/27/10 as well as her full name, the date of surgery (8/5), that it's being performed at Christ Hospital in Oak Lawn and our home address. If you do not have our home address please text Brian or I to get it from us.
Olivia is A positive and can accept blood from either O or A (doesn't matter if you're positive or negative). If you need to know specifics about whether or not you qualify as a blood donor please refer to the Lifesource website http://www.lifesource.org/donatingQual.asp for donor eligibility information.
That should be it for the specifics as it pertains to the donations. Thank you all for the interest!
Cinder-Livvy
Friday, July 30, 2010
Tuesday, July 27, 2010
Happy 4 Months Olivia!
Olivia,
I cannot believe that you are four months old today. Everything about the day you were born seems so hazy to me, but I still remember you came out quacking like a little duck. I know we've only been home together as a family for three months, but you're the center of our universe. We are getting ready to take you back to Hope next week for your second surgery in such a short amount of time, but I promise Daddy and I will be with you every step of the way.
Both your Daddy and I think that watching you smile, grow and learn new things on a daily basis is just the most awesome experience of our lives. I know that you have had to go through more things in your four months than most people have to go through in their entire lives, but if I had it to do all over again, I wouldn't change a thing. Your special heart makes you the Olivia that we know and love. Of course there isn't a day that goes by where I wish to trade places with you to take on any pain and suffering that your special heart may cause you.
Sweet baby girl, we were meant to be a family and wherever the road may take us in the future, nothing will ever change that fact. Just remember when you're a teenager and hating on us because we're so unfair and don't understand what it's like to be young, how much we've loved you since even before you blessed us with your presence. Now make no mistake, all of our love for you does not give you carte blanche to do whatever you please. However, I'm sure that if you bat your eyes the right way at your Daddy that you'll be able to get that ice cream dessert, coveted doll or expensive gadget in the not so distant future.
Happy Four Month Birthday my Beautiful Little Lady! May each day be better than the next
Love Always,
Your Mommy
I cannot believe that you are four months old today. Everything about the day you were born seems so hazy to me, but I still remember you came out quacking like a little duck. I know we've only been home together as a family for three months, but you're the center of our universe. We are getting ready to take you back to Hope next week for your second surgery in such a short amount of time, but I promise Daddy and I will be with you every step of the way.
Both your Daddy and I think that watching you smile, grow and learn new things on a daily basis is just the most awesome experience of our lives. I know that you have had to go through more things in your four months than most people have to go through in their entire lives, but if I had it to do all over again, I wouldn't change a thing. Your special heart makes you the Olivia that we know and love. Of course there isn't a day that goes by where I wish to trade places with you to take on any pain and suffering that your special heart may cause you.
Sweet baby girl, we were meant to be a family and wherever the road may take us in the future, nothing will ever change that fact. Just remember when you're a teenager and hating on us because we're so unfair and don't understand what it's like to be young, how much we've loved you since even before you blessed us with your presence. Now make no mistake, all of our love for you does not give you carte blanche to do whatever you please. However, I'm sure that if you bat your eyes the right way at your Daddy that you'll be able to get that ice cream dessert, coveted doll or expensive gadget in the not so distant future.
Happy Four Month Birthday my Beautiful Little Lady! May each day be better than the next
Love Always,
Your Mommy
1st ER Visit
I think everyone realizes that once you become a parent that there will be some sort of trip to the ER during your child's lifetime. Hopefully it's something like a sprained ankle incurred at sports practice or as a toddler with the ever too familiar stiches on the split chin from a fall. As a heart parent, a trip to the ER take on a completely different perspective.
Last night Brian and I had to take Olivia in for her first trip to the ER and none of us were happy about making the trip down to Hope. It started after her 6PM bottle, she just cried and cried. No biggie, we tried Mylicon, walking around with her, the bouncer, finally some tylenol, found out she likes going up and down stairs, the bouncer some more and she passed out. The rest was only momentary because she woke up 30 minutes later screaming like a banshee. Again, more bouncing, walking, and it just continued and now she was arching and thrashing around so I knew it was stomach related for sure. She was inconsolable so I made the call to the PSHU to talk with the cardiac fellow on call. I ran through the list of meds, the changes from last week's clinic and what I was visibly observing. Olivia would have a crying fit for 10-15 minutes and then be calm for equally as long before the fit started up again.
"I'm concerned" said the cardiac fellow, "Please bring her in to be examined". Ugh...I dreaded it, his thought was maybe she had a bowel obstruction and that was the cause of her pain, but I know that if she had an obstruction her tummy would have looked red and it wasn't and we most likely would have been seeing vomiting and a fever which we didn't have either. So off we went at 9 to Hope just to be safe. I'll spare all the nitty gritty but bottom line is the tummy med that she's on again - Reglan- is working a little too well. It's designed to help these little ones digest their food faster by increasing stomach contractions. Well in Olivia's case it looks like it made her tummy over-contract to where she was cramping. While they do not want us to discontinue its use altogether, they did lower the dose and so far so good today.
We walked back in the house around 12:45 and everyone passed out from exhaustion. Last update I had from Nonna, my girl was all smiles and really enjoying her naps today. The little stinker!
Last night Brian and I had to take Olivia in for her first trip to the ER and none of us were happy about making the trip down to Hope. It started after her 6PM bottle, she just cried and cried. No biggie, we tried Mylicon, walking around with her, the bouncer, finally some tylenol, found out she likes going up and down stairs, the bouncer some more and she passed out. The rest was only momentary because she woke up 30 minutes later screaming like a banshee. Again, more bouncing, walking, and it just continued and now she was arching and thrashing around so I knew it was stomach related for sure. She was inconsolable so I made the call to the PSHU to talk with the cardiac fellow on call. I ran through the list of meds, the changes from last week's clinic and what I was visibly observing. Olivia would have a crying fit for 10-15 minutes and then be calm for equally as long before the fit started up again.
"I'm concerned" said the cardiac fellow, "Please bring her in to be examined". Ugh...I dreaded it, his thought was maybe she had a bowel obstruction and that was the cause of her pain, but I know that if she had an obstruction her tummy would have looked red and it wasn't and we most likely would have been seeing vomiting and a fever which we didn't have either. So off we went at 9 to Hope just to be safe. I'll spare all the nitty gritty but bottom line is the tummy med that she's on again - Reglan- is working a little too well. It's designed to help these little ones digest their food faster by increasing stomach contractions. Well in Olivia's case it looks like it made her tummy over-contract to where she was cramping. While they do not want us to discontinue its use altogether, they did lower the dose and so far so good today.
We walked back in the house around 12:45 and everyone passed out from exhaustion. Last update I had from Nonna, my girl was all smiles and really enjoying her naps today. The little stinker!
Saturday, July 24, 2010
No News is Good News
I met up with the Little Lady, Grandma & Grandpa at Hope yesterday for her appointment. The Grandparents have her on Fridays while Brian and I work, which I think they throughly enjoy. Anyway, I got there and we didn't wait too long before we were called back. Getting a BP was super dramatic as it was last week but this time Miss Michelle picked up Livvy and had a chat with her to let the little one know that she isn't out to hurt her, whatever it was it worked. Michelle ran the BP unit once more and got a great reading now that Liv was nice and calm. Thank God Michelle has the patience of a saint to sit there and make Olivia feel comfortable enough so we can get vitals taken. Sats were even better than last week, height is now 25 1/4" and weight is around 12lbs 1oz - which pleased Dr. VanBergen despite the fact that Brian and I revolted last week by only trying the formula fortifying a few times before we threw in the towel.
They are pleased with everything and say things look good for us to wait for the Glenn until 8/5 so that's the official date. All else aside, it was just a lot of waiting around so here's the best pic we have thus far of Olivia & I compliments of Grandma & Grandpa.
They are pleased with everything and say things look good for us to wait for the Glenn until 8/5 so that's the official date. All else aside, it was just a lot of waiting around so here's the best pic we have thus far of Olivia & I compliments of Grandma & Grandpa.
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| Pebbles and I hanging out in the waiting room |
Tuesday, July 20, 2010
Tough Choices
We are nearing the Glenn and with that or any other invasive procedure comes the mental preparation for all that Olivia, Brian and I will face with the surgery and Olivia's overall recovery. I had so much time before the Norwood, from week 20 of my pregnancy on to think and stew about it over and over how giving away our baby girl would be when the time came for her surgery. I think by the time the surgical day rolled around I was numb to the emotions because of pain, sleep deprivation and shock to the whole delivery that it just didn't seem to shake me the way I thought it should have or would have.
This time around, I haven't had as much time to think the whole process through. We've been too busy focusing on the wonderful ups and small downs with Olivia's day to day to look too far in the future. I do know that when we go in for the pre-op appointment I'll have to sign the consent forms that warn us against all the risks ranging from infections to strokes and/or death. It's the third time in Olivia's life that I'll be signing off on those terms but it's been very clear from the start of our journey with HLHS, either we go the surgical route or we bury our baby.
Based on all the heart families out there, July has been a hard month on our little ones. There have been some babies that are now angels watching over the rest of those that continue on, those that are fighting for their lives today and those parents that are having to contemplate signing off on DNR's or end of life care for their little ones. Knowing that's going on somewhere out there for another set of heart parents (or just parents in general) just makes it that much more rewarding when I end my workday to get home to Olivia. I never want to entertain the idea that one day she may not be here with us, but that is our reality so I try to cherish each day as it comes.
This time around, I haven't had as much time to think the whole process through. We've been too busy focusing on the wonderful ups and small downs with Olivia's day to day to look too far in the future. I do know that when we go in for the pre-op appointment I'll have to sign the consent forms that warn us against all the risks ranging from infections to strokes and/or death. It's the third time in Olivia's life that I'll be signing off on those terms but it's been very clear from the start of our journey with HLHS, either we go the surgical route or we bury our baby.
Based on all the heart families out there, July has been a hard month on our little ones. There have been some babies that are now angels watching over the rest of those that continue on, those that are fighting for their lives today and those parents that are having to contemplate signing off on DNR's or end of life care for their little ones. Knowing that's going on somewhere out there for another set of heart parents (or just parents in general) just makes it that much more rewarding when I end my workday to get home to Olivia. I never want to entertain the idea that one day she may not be here with us, but that is our reality so I try to cherish each day as it comes.
Monday, July 19, 2010
Isn't She Lovely?
Unfortunately this beautiful smile and great mood didn't last all day because we went back to trying the formula fortified breast milk. Bottle 1 went down all right, she only took 2 oz but I didn't really worry about it because I figured she needed to get used to the new taste. Bottle 2 while we were at dinner with Grandma & Grandpa went down even better, she took all 3.5 oz. However, once we were in Babies R Us getting a few things, the whole situation got a little interesting. First, she was fussing because she had a wet diaper, so I changed her, but as I was changing her, she started thrashing around which is never a good sign.
I picked her up only for her to really belt out some high pitched crying and I could feel her tummy fairly hard against me. I looked down at her and she was turning very Smurfy from forehead down to neck. I went over to Brian to get some Mylicon from the diaper bag, which of course he was in the midst of exchanging and we had to root through an entire shopping bag full of stuff before we found it. We dosed out the Mylicon, I gave it to her and put her pacifier in which lasted for about 30 seconds before I heard the trouble coming. Oh yes, projectile vomit in the middle of the Babies R Us. We had to improvise and strip the little lady down in the middle of the store and make sure that no one slipped in her puddle of formula (sorry for the image). We hightailed it to the car and Grandpa took over as wheelman so Brian and I could be in back with Olivia in case she had another episode. Thankfully she seemed much happier since her tummy was rid of that formula and she was smiling by the time we made it back home.
The fussiness wasn't quite gone though, even though we went back to regular milk again she had another melt down at 9 and again at 1 am. We had to give her Tylenol which I hate to do because I don't want it to become ineffective for her when we need it for pain management after the Glenn, but she was exerting more calories than she has been taking so we needed to quiet her down. This morning it seems that things are going well with her and Nonna and the doctors have already said that we should just leave things where we are right now and re-assess on Friday. If all goes well tonight we'll be able to take a nap together, which if I haven't mentioned before when Olivia falls asleep on me that moment becomes one of the best moments of my entire life each and every time. I love to feel her little heartbeat on me and take it all in.
Saturday, July 17, 2010
The Latest
So Liv and I went to the Norwood clinic at Hope yesterday like we have been doing every other Friday for quite some time now and the little girl is hip to what is going on. She was all smiles in the waiting room hanging out in her carrier and even back in the exam room. Her nurse thought it may not be a big deal to try the BP while she was still happy in her carrier but as soon as that cuff went on, Olivia completely lost her cool. It became a screamfest no matter if I was holding her or not, didn't matter that I was trying to give her a bottle, and pacifier was spit out more times than I could count. Even the stethoscope was an enemy yesterday which normally she just ignores.
After the assessment OT came in to see where she's at with motor skills. Suprisingly her fine motor skills like grabbing toys are better than her gross motor skills i.e. moving her head down to look at something on the floor - thus now creating some more homework for Brian and I. Liv tolerated being on the exam table so long as the OT didn't touch her but as soon as she made contact with her little leg the baby alarm sounded and that was the rest of the visit. She hung out with me and shot glaring looks at anyone who walked in after that. As for her saturations which have been something I've been concerned with since her heart cath? They were perfect - the little stinker was satting between 80-84, of course she does this while we'e at the hospital after I've said that they have been low at home for weeks now.
Overall I voiced all of my concerns and the staff took them seriously. Her weight gain has slowed down (frankly I'm shocked she gained any at all) - we are now at 11lb 14oz. Due to the slow down in weight gain they want me to start formula fortifying my milk again so she gets more calories per ounce. This may increase the blood in stool issue that we had before and we're going to play that one by ear. There is talk of moving the Glenn up at least a week or so from the 8/5 date, and to finalize that, we need to go back this Friday for another quick check up. At this point I'm just a puppet in the Olivia show, she's calling the shots regardless of the fact that she can't actually verbalize what's going on.
After the assessment OT came in to see where she's at with motor skills. Suprisingly her fine motor skills like grabbing toys are better than her gross motor skills i.e. moving her head down to look at something on the floor - thus now creating some more homework for Brian and I. Liv tolerated being on the exam table so long as the OT didn't touch her but as soon as she made contact with her little leg the baby alarm sounded and that was the rest of the visit. She hung out with me and shot glaring looks at anyone who walked in after that. As for her saturations which have been something I've been concerned with since her heart cath? They were perfect - the little stinker was satting between 80-84, of course she does this while we'e at the hospital after I've said that they have been low at home for weeks now.
Overall I voiced all of my concerns and the staff took them seriously. Her weight gain has slowed down (frankly I'm shocked she gained any at all) - we are now at 11lb 14oz. Due to the slow down in weight gain they want me to start formula fortifying my milk again so she gets more calories per ounce. This may increase the blood in stool issue that we had before and we're going to play that one by ear. There is talk of moving the Glenn up at least a week or so from the 8/5 date, and to finalize that, we need to go back this Friday for another quick check up. At this point I'm just a puppet in the Olivia show, she's calling the shots regardless of the fact that she can't actually verbalize what's going on.
Tuesday, July 13, 2010
Golden Girl
HRH aka Olivia is sitting golden napping in her bouncy seat right now. Today was a better day, she's eating more, fussing less and shhh there really hasn't been any blood to be seen. Knock on wood would you please?
Friday we have another appointment at Hope where I'm going to present my case in hopes of them moving up her Glenn date. I think it's highly unlikely that it will happen, but so long as the doctors give me enough reasons and data to show me why they're comfortable waiting until 8/5 then I'll be satisfied.
My fave little roll on Liv's thighs has a little tan line...it's adorable she's got this little streak of white on each leg where sun doesn't shine because of her mini amount of pudge. How stinkin cute! She looks so cozy sleeping that I may try to catch a catnap before Brian gets home from work.
Friday we have another appointment at Hope where I'm going to present my case in hopes of them moving up her Glenn date. I think it's highly unlikely that it will happen, but so long as the doctors give me enough reasons and data to show me why they're comfortable waiting until 8/5 then I'll be satisfied.
My fave little roll on Liv's thighs has a little tan line...it's adorable she's got this little streak of white on each leg where sun doesn't shine because of her mini amount of pudge. How stinkin cute! She looks so cozy sleeping that I may try to catch a catnap before Brian gets home from work.
Monday, July 12, 2010
Frustration
This weekend was not one of our better ones. I think it started early last week when the GI doctor suggested that Liv had a milk protein allergy. Instead of starting the Nutramigen, Brian and I decided that I would add some dairy back into my diet and see the results. I would say that Olivia started to become a little fussier throughout the weekend, we saw more blood than we had been seeing and now she's not eating the amount of ounces that she had been last week. Strangely enough, her sats are higher than they have been since her cath two weeks ago so go figure. We have her back on breast milk that we know is dairy free, but I think we're going to start the Nutramigen when I get home from work today.
I'm hoping that her disinterest in food for the last day or so is just because she was trying to work the dairy out of her system. On top of her fussiness she had an absolute meltdown yesterday morning when I was trying to dress her - like reaching an octave that she's never hit before. I can only guess that she didn't recognize me or my motherly smell because I put on a heavily fragranced lotion that I haven't used since she was born. I stopped dressing her, put her in her bouncer and tried to pacify her until Brian came down. She just glared at me like I was a complete stranger. I know that I didn't do anything differently when I was getting her dressed from any other day, but again it was so odd.
All in all I can just say that the weekend was frustrating for our little family. I'm sure Olivia has it worst because she can't tell us what's wrong so we can fix it, but it's terribly helpless for us to sit and watch her be miserable. I'm hoping that today is the start of a better week for all.
I'm hoping that her disinterest in food for the last day or so is just because she was trying to work the dairy out of her system. On top of her fussiness she had an absolute meltdown yesterday morning when I was trying to dress her - like reaching an octave that she's never hit before. I can only guess that she didn't recognize me or my motherly smell because I put on a heavily fragranced lotion that I haven't used since she was born. I stopped dressing her, put her in her bouncer and tried to pacify her until Brian came down. She just glared at me like I was a complete stranger. I know that I didn't do anything differently when I was getting her dressed from any other day, but again it was so odd.
All in all I can just say that the weekend was frustrating for our little family. I'm sure Olivia has it worst because she can't tell us what's wrong so we can fix it, but it's terribly helpless for us to sit and watch her be miserable. I'm hoping that today is the start of a better week for all.
Thursday, July 8, 2010
The Glenn
Game on. Please know I say this figuratively as I am not looking forward to the Glenn surgery but I am looking forward to Olivia being 2/3 of the way done with her surgeries by the end of the summer. We are set to go on August 5th. I am not nervous, at least not yet about the prospect of going through this all again. We were told to expect anywhere from around a 4-6 day stay in the hospital provided all goes well with the surgery. I already know from the Norwood recovery that Olivia has plans of her own and will do what she sees fit the duration of the stay.
Brian's last day in the office for the short future will be July 30th. After Olivia has the Glenn he will be staying home with her using FMLA during recovery while I'm back in the office. I have no worries, Daddy and daughter will have a ball together spoiling each other with all the individual attention to one another.
Our pre-surgical appointment is on the 2nd and hopefully it will be all green lights. We know that she needs this procedure to continue with her fight. Her color isn't as good as it once was and her sats are starting to creep down as she continues to outgrow her shunt. Last night I laid her on her Boppy and she lifted her little head all around to check out the world. It was one of the more pure moments of joy that I have ever experienced. I also know that without grief I would not have as much appreciation for that moment of joy. Currently one of the heart families that I know through the blogs is undertaking the fight of their life. Their little boy Luke has a particular difficult case of HLHS and the prognosis is grim right now unless "a miracle happens" according to the doctors. All of these heart babies are miracles and I can only hope that Luke's family gets one more miracle for their team.
In preparation for Olivia's surgery, we are going to donate blood for her and have it set aside. If you are local, please feel free to donate to her cause. Any Lifesource in the Chicagoland area is acceptable 3-6 days prior to her surgery date. She is A positive and can accept A blood (either positive or negative) and Type O as well. If you're not a match but still want to donate just as a gesture, that is soooo much appreciated as the blood banks always need donors. I for one have never donated before and am looking forward to making my first contribution. It's just another way that she has changed the way that I think, I don't even know if I'm a blood match and I don't care. If Olivia can't benefit from my blood, someone else in need will. She changes my life on a daily basis.
Brian's last day in the office for the short future will be July 30th. After Olivia has the Glenn he will be staying home with her using FMLA during recovery while I'm back in the office. I have no worries, Daddy and daughter will have a ball together spoiling each other with all the individual attention to one another.
Our pre-surgical appointment is on the 2nd and hopefully it will be all green lights. We know that she needs this procedure to continue with her fight. Her color isn't as good as it once was and her sats are starting to creep down as she continues to outgrow her shunt. Last night I laid her on her Boppy and she lifted her little head all around to check out the world. It was one of the more pure moments of joy that I have ever experienced. I also know that without grief I would not have as much appreciation for that moment of joy. Currently one of the heart families that I know through the blogs is undertaking the fight of their life. Their little boy Luke has a particular difficult case of HLHS and the prognosis is grim right now unless "a miracle happens" according to the doctors. All of these heart babies are miracles and I can only hope that Luke's family gets one more miracle for their team.
In preparation for Olivia's surgery, we are going to donate blood for her and have it set aside. If you are local, please feel free to donate to her cause. Any Lifesource in the Chicagoland area is acceptable 3-6 days prior to her surgery date. She is A positive and can accept A blood (either positive or negative) and Type O as well. If you're not a match but still want to donate just as a gesture, that is soooo much appreciated as the blood banks always need donors. I for one have never donated before and am looking forward to making my first contribution. It's just another way that she has changed the way that I think, I don't even know if I'm a blood match and I don't care. If Olivia can't benefit from my blood, someone else in need will. She changes my life on a daily basis.
Tuesday, July 6, 2010
Nutramigen
Hypoallergenic formula? That was the GI specialist's fix for blood that we're seeing Miss Olivia pass. He asked a few questions, didn't look over any of the medical history that I brought over from the Peds, and then felt her tummy for a minute before he told me about the Nutramigen. I am clearly so under impressed with the doctor that it ticks me off. He seemed nice enough and competant enough but I am just in utter disbelief that it's another change in Olivia's food that may potentially take weeks to produce any results. On a positive note the fact that there was no sense of alarm was really great, but really just switch her to formula?
I guess I was naive when I ventured into this whole world of babies that there could be the off chance that there would be a time when breast milk wouldn't be best. I will do whatever is best for Olivia, but I want to run this new scenario past her cardiology team. Right now, I'm off to enjoy my little family. Olivia definitely knows how to make her mommy laugh. She just burst into tears as Brian was singing his heart out. I LOVE HER!
I guess I was naive when I ventured into this whole world of babies that there could be the off chance that there would be a time when breast milk wouldn't be best. I will do whatever is best for Olivia, but I want to run this new scenario past her cardiology team. Right now, I'm off to enjoy my little family. Olivia definitely knows how to make her mommy laugh. She just burst into tears as Brian was singing his heart out. I LOVE HER!
Sunday, July 4, 2010
7/2 Doctor Update
Well Miss Olivia is weighing in at a whopping 11lbs 8oz (which is really only about 3oz more than our last weight check) but she is 25" long! The fact that she grew an entire inch from our last height check made me feel much better about everything that's been going on. Her pediatrician decided that we should try an antacid to see if that will stop the blood from making its appearance. So we're going to try that and then maybe on Tuesday the GI specialist will have a thought or two of his own that we'll need to try from that appointment.
Our visit to Hope was aggravating, I can honestly say it was probably the first time that I was annoyed with the staff. We got there early which was no big deal so we decided to go up and visit some of Liv's nurses from the PSHU. They were thrilled to see her and couldn't believe how big she has gotten in our couple of months at home. After some gabbing we needed to head down to clinic for our 10:30 appointment. We finally got called back around 11:45, did the whole vital check and waited. Then we waited some more and PT came in for an assessment. Liv is tracking and grabbing for things as they're held in front of her, but we really need to focus on her lifting and supporting her own head. Then the doctor came in for a few minutes to listen to her and tell us that she needed and echo & EKG. What!? She was just in for a cath last week, you mean to tell me they didn't do either of those test while she was under? Oh and then the doctor asks us what is the date for the Glenn. Again - wait, they told us last week at the cath that YOU would be giving us the date for surgery at this very visit!
Ugh...so doctor goes out to look over her records to see if the echo & EKG were done during the cath and they WEREN'T, so she now needs to go in and have that done. Then he went and called surgery to ask if we were on the schedule and we ARE NOT, so now they need to call me this week because they were too busy to talk with us while we were actually there. Finally we go in for the echo and the munchkin decides to have a meltdown. She's hungry, she's been undressed for too long in the freezing exam rooms and needless to say the tech can't do the echo while she's screaming her head off. So then the tech starts looking at Brian & I like we're idiot parents when Brian says he needs to run out to the car to grab another bottle from the cooler. We hadn't really expected that this appointment was going to go so long that we needed to have more than one bottle with us.
By the time Brian comes back with it and it's mildly warmed for Liv, it seemed like forever and a day. We gave her the bottle, echo started and by the end of the bottle, she was snoozing away. Both echo and EKG showed good results thank God, but I was still frustrated. Ultimately the problem with the visit overall was that it was a holiday weekend and the hospital was minimally staffed. Please please please, let us never have a medical emergency where we need to take her in like that on a holiday weekend, because I have to say they definitely shook my confidence a little bit.
Our visit to Hope was aggravating, I can honestly say it was probably the first time that I was annoyed with the staff. We got there early which was no big deal so we decided to go up and visit some of Liv's nurses from the PSHU. They were thrilled to see her and couldn't believe how big she has gotten in our couple of months at home. After some gabbing we needed to head down to clinic for our 10:30 appointment. We finally got called back around 11:45, did the whole vital check and waited. Then we waited some more and PT came in for an assessment. Liv is tracking and grabbing for things as they're held in front of her, but we really need to focus on her lifting and supporting her own head. Then the doctor came in for a few minutes to listen to her and tell us that she needed and echo & EKG. What!? She was just in for a cath last week, you mean to tell me they didn't do either of those test while she was under? Oh and then the doctor asks us what is the date for the Glenn. Again - wait, they told us last week at the cath that YOU would be giving us the date for surgery at this very visit!
Ugh...so doctor goes out to look over her records to see if the echo & EKG were done during the cath and they WEREN'T, so she now needs to go in and have that done. Then he went and called surgery to ask if we were on the schedule and we ARE NOT, so now they need to call me this week because they were too busy to talk with us while we were actually there. Finally we go in for the echo and the munchkin decides to have a meltdown. She's hungry, she's been undressed for too long in the freezing exam rooms and needless to say the tech can't do the echo while she's screaming her head off. So then the tech starts looking at Brian & I like we're idiot parents when Brian says he needs to run out to the car to grab another bottle from the cooler. We hadn't really expected that this appointment was going to go so long that we needed to have more than one bottle with us.
By the time Brian comes back with it and it's mildly warmed for Liv, it seemed like forever and a day. We gave her the bottle, echo started and by the end of the bottle, she was snoozing away. Both echo and EKG showed good results thank God, but I was still frustrated. Ultimately the problem with the visit overall was that it was a holiday weekend and the hospital was minimally staffed. Please please please, let us never have a medical emergency where we need to take her in like that on a holiday weekend, because I have to say they definitely shook my confidence a little bit.
Thursday, July 1, 2010
Big Day Tomorrow
We are starting off the day at the Ped's office for a normal weigh in check up. Since our last routine peds visit we have put Liv on breastmilk fortified with soy formula, taken her off of that because it upset her tummy all the way to me giving up all dairy products, and then dealt with her small appetite after the heart cath last Friday. Given all of the changes that I just mentioned, I fully expect to be told that her growth has slowed too much from our last visit and that we'll need to come up with a new game plan to ensure her calorie intake is high enough. While I welcome the suggestions some of it is easier said than done. We have been waking her up if she goes too long without a feeding, increasing the oz of a few bottles throughout the day and trying to increase the frequency as well.
After the peds appointment we're off to Hope to meet with Dr. Husayni and discuss the Glenn and set a date for the actual surgery. I think Brian and I are on the same page regarding the surgery, we're not looking forward to it, but the sooner we get it done the better so Olivia can have more than a year without another major procedure and she can get on with enjoying life. For now she's checking out her hands opening and closing them all day long and trying to put them both in her mouth at the same time.
Tonight I'm going to watch Boston Med on ABC at 9 CST because they're featuring a family with an HLHS baby. While I sort of think it's strange to sit down and watch another family living and dealing with a heart baby that has the same diagnosis as Olivia, we each have our own unique story.
Tomorrow will also mark the first angelversary of Kaia, the inspiration behind Little Lion Designs. Her mom, Stephanie, has taken the loss of her daughter and channeled it into a creative way that carries Kaia's memory. I know I've mentioned that we have a piece of fabric art that Stephanie made for Olivia so our two baby girls are forever bonded. Please keep Kaia and her family in your minds tomorrow.
After the peds appointment we're off to Hope to meet with Dr. Husayni and discuss the Glenn and set a date for the actual surgery. I think Brian and I are on the same page regarding the surgery, we're not looking forward to it, but the sooner we get it done the better so Olivia can have more than a year without another major procedure and she can get on with enjoying life. For now she's checking out her hands opening and closing them all day long and trying to put them both in her mouth at the same time.
Tonight I'm going to watch Boston Med on ABC at 9 CST because they're featuring a family with an HLHS baby. While I sort of think it's strange to sit down and watch another family living and dealing with a heart baby that has the same diagnosis as Olivia, we each have our own unique story.
Tomorrow will also mark the first angelversary of Kaia, the inspiration behind Little Lion Designs. Her mom, Stephanie, has taken the loss of her daughter and channeled it into a creative way that carries Kaia's memory. I know I've mentioned that we have a piece of fabric art that Stephanie made for Olivia so our two baby girls are forever bonded. Please keep Kaia and her family in your minds tomorrow.
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