I know they told me that this surgery would help but I wouldn't let myself really believe it. I think I am still in disbelief but she is soooooooooooooo much better!!! We came home yesterday and you would never know she just had heart surgery for goodness sake! She is a little ball of energy! The best part is her feedings. She is eating almost double what she was eating pre-surgery. I am so anxious to find out her weight. We go to the pediatrician for a weight check on wednesday.
Having her home again is so wonderful. Chris and I feel like we brought home a whole new baby in some regards. The feeding thing is a huge change but so are some of her other behaviors. Before surgery I would feed her and she went back to bed instantly and she didn't like to be held for very long. She rarely feel asleep while being held... she just wanted to be in her crib. For the first time EVER I had to rock her before she would fall asleep after her morning bottle. It was the best =) She is also a little nut! She is scooting herself all over her crib! It's so funny. Also I think she smiled for a full hour yesterday =) Best baby in the world!
This week we go to the surgeon on tuesday to have her sutures removed, pediatrician wednesday, and cardiologist on thursday. I will continue to post on monkey's progress. =)
Sunday, November 15, 2009
Friday, November 13, 2009
No more ICU!
Yesterday was a very good day for our little trooper =) She had her chest tube taken out and isn't on any IV fluids anymore. The biggest news of all is that she has been eating better than she ever has in her little life! I am so stunned I knew the surgery would help but I didn't think it would happen instantly =) She actually was crying last night and it took me a little while to figure out it was because she was hungry... hahaha. She has never cried to eat... ever!
She is now out of the ICU and on a step-down unit. They were hoping we could go home today but my little monkey can't quite get off that pesky oxygen quite yet. A story we are all too familiar with from NICU. They want her to be off it for a while before sending us home to be on the safe side so we are looking at tommorow for discharge hopefully =)
I might be getting myself overexcited but she looks fatter to me. She will get weighed next week so we will know for sure but she just looks like she has already gained weight! You knows. Right now she is sleeping in her crib with her little thumb in her mouth. Of course its the hand with the IV in it! She does what she wants!
Will continue to update =) Thank you so much to everyone for all the prayers sent our way!
She is now out of the ICU and on a step-down unit. They were hoping we could go home today but my little monkey can't quite get off that pesky oxygen quite yet. A story we are all too familiar with from NICU. They want her to be off it for a while before sending us home to be on the safe side so we are looking at tommorow for discharge hopefully =)
I might be getting myself overexcited but she looks fatter to me. She will get weighed next week so we will know for sure but she just looks like she has already gained weight! You knows. Right now she is sleeping in her crib with her little thumb in her mouth. Of course its the hand with the IV in it! She does what she wants!
Will continue to update =) Thank you so much to everyone for all the prayers sent our way!
Thursday, November 12, 2009
Surgery Update
Surgery went very well! And we got some very interesting news about lover's little voice. Since they were already going to be sedating her an ENT went in to check out her vocal cords to see why she has such a weak cry. Turns out she has left vocal cord paralysis. I have to look up more about this but the doctor said that she may grow out of it... but if it doesn't self-correct she may just have a softer voice. There is also therapy they can do I guess but not until she is older. The really crazy thing to me is that it looks to be congenital. Meaning she would have had it preemie for not. I do believe this is the first actual medical thing (other than a cold) that is not a direct relation to her early arrival. It's a bit of a reality check because I have built up in my mind that her troubles are over once she has her second surgery. I forget that she could have other things happen. Ah motherhood =) I can say that I officially not longer feel guilty for being grateful to have a baby with a little cry =) So she will have a softer voice... like she needed anything else to make her cuter!
As far as her heart surgery the surgeon is very pleased with how it went! Her blood pressure improved significantly immediately indicating better blood circulation (for my nurses... peripheral diastolic blood pressure from 17 to 44 instantly... now it's in the 60s) She has a little incision right under her left armpit and a little chest tube about halfway down her chest to drain any fluid. She will likely have her chest tube removed some time today... there was very minimal drainage yesterday. Once she got to the PICU after surgery she decided she had enough of her ventilator so she self-exbutated... HAHA little stinker. The nurse said to Chris and I that they typically like to leave the breathing tubes in longer but she had other plans for that stinking tube =) Thats my fiesty little peanut!
She has been sleeping most of the night. We are going to try to feed her today when she wakes up. They have been wonderful about making sure she is comfortable... apparently this surgery can be very painful. I imagine it would be considering they have to go between ribs. She is feeling very sore. I think that's all I have for now. Thank you to everyone for all the thoughts and prayers!
As far as her heart surgery the surgeon is very pleased with how it went! Her blood pressure improved significantly immediately indicating better blood circulation (for my nurses... peripheral diastolic blood pressure from 17 to 44 instantly... now it's in the 60s) She has a little incision right under her left armpit and a little chest tube about halfway down her chest to drain any fluid. She will likely have her chest tube removed some time today... there was very minimal drainage yesterday. Once she got to the PICU after surgery she decided she had enough of her ventilator so she self-exbutated... HAHA little stinker. The nurse said to Chris and I that they typically like to leave the breathing tubes in longer but she had other plans for that stinking tube =) Thats my fiesty little peanut!
She has been sleeping most of the night. We are going to try to feed her today when she wakes up. They have been wonderful about making sure she is comfortable... apparently this surgery can be very painful. I imagine it would be considering they have to go between ribs. She is feeling very sore. I think that's all I have for now. Thank you to everyone for all the thoughts and prayers!
Saturday, November 7, 2009
Surgery Date Set
We went to see the cardiac surgeon on wednesday and we are good to go for surgery next wednesday. He said as far as heart surgery goes its one of the simpler ones they do in terms of actual procedure and follow-up. Once it's fixed it's fixed. Almost no follow-up. That means one more specialist checked off the list! haha. He is very confident that repairing her PDA will significantly improve her eating and weight gain. He said she has to work so hard to eat and said that when she eats it's feels to her like she has to eat and run at the same time. That really put it in perspective for me. I would cry too if I had to eat a sandwich and run a marathon at the same time!
We go in for pre-surgical testing on tuesday... xrays, labs, all that stuff. We will get to be with little peanut right up until they take her to the OR and we will get to see her right after surgery before they take her to the PICU. She will likely be in the PICU for a couple days then to step-down for a couple days. After surgery she is going to have a chest tube to drain any fluid and she will probably be on a ventilator for about a day.
Mommy has a busy busy day getting ready for little lovers baptism tommorow!!! We are so excited! She will be wearing the same Christening gown as her daddy! (And now has gorgeous pictures in it thanks to Noel!) It will be nice for the family to see her because I put her on lockdown for the winter! haha. I am going be a little nuts about people not touching her. =p
Ok well I keep everyone posted on her surgery as much as I can. I will be living at the hospital so we will see how that works out. Thanks for all the prayers and support for our little trooper!
We go in for pre-surgical testing on tuesday... xrays, labs, all that stuff. We will get to be with little peanut right up until they take her to the OR and we will get to see her right after surgery before they take her to the PICU. She will likely be in the PICU for a couple days then to step-down for a couple days. After surgery she is going to have a chest tube to drain any fluid and she will probably be on a ventilator for about a day.
Mommy has a busy busy day getting ready for little lovers baptism tommorow!!! We are so excited! She will be wearing the same Christening gown as her daddy! (And now has gorgeous pictures in it thanks to Noel!) It will be nice for the family to see her because I put her on lockdown for the winter! haha. I am going be a little nuts about people not touching her. =p
Ok well I keep everyone posted on her surgery as much as I can. I will be living at the hospital so we will see how that works out. Thanks for all the prayers and support for our little trooper!
Tuesday, November 3, 2009
Little Heart
I spoke today with the cardiologist and after going over lover's test results with the cardiac surgeons they are all in agreement that she needs to have the surgery. My understanding so far is that they will make a small incision on her left side and access her little ticker by going through a couple ribs. She will be the hospital for a few days. We have an appointment to meet with the cardiac surgeons this thursday. They will go over everything with us and then a nurse will go over what to expect in terms of recovery. We will also schedule her surgery that day.
I have to say I am not surprised... this is exactly what I expected would happen. But I also have to say I am surprised by my reaction to it. I guess you can't prepare yourself for some things. The thought of giving her back to a hospital is almost unbearable. Not having her home the first time was so hard but at least I didn't know what I was missing. I don't want to wake up in our bed without her being in her crib. She gives up the biggest smiles in the morning. I think this time I will be able to stay with her so that will help.
I am glad that we are going to get this thing fixed, I know she will feel better. It is so important that we get her as strong as possible for her next surgery. I will post about our appointment afterwards.
I have to say I am not surprised... this is exactly what I expected would happen. But I also have to say I am surprised by my reaction to it. I guess you can't prepare yourself for some things. The thought of giving her back to a hospital is almost unbearable. Not having her home the first time was so hard but at least I didn't know what I was missing. I don't want to wake up in our bed without her being in her crib. She gives up the biggest smiles in the morning. I think this time I will be able to stay with her so that will help.
I am glad that we are going to get this thing fixed, I know she will feel better. It is so important that we get her as strong as possible for her next surgery. I will post about our appointment afterwards.
Friday, October 30, 2009
What a year
Babes and I just got back from the pediatrician... up to 9 lbs 5 ozs =) We also increased her dose of zantac because her reflux has been acting up... hopefully the insurance company won't go balistic again =p. The doctor also wants babes to see an ENT to check out her vocal cords and see why she has such a weak cry... something Chris and I do and don't want fixed for obvious reasons =p
We saw the helmet doctor yesterday and she said Cordelia has made very significant improvements so far! Its very obvious to us just by looking at her how much the helmet has helped, and now we have confirmation of this. The best part is that she doesn't need to be seen again for 2 months... yippee!
My mom reminded yesterday that it was the 1 year anniversary of the most terrifying events of my life up to that point... and to be honest even after everything that has happened I would still count it as number 1. I'm not sure that many people know about it... I didn't really post on facebook about it... I just couldn't. Not surprisingly it is about my little peanut baby! I will try to abridge the story as much as I can....
When I found out I was pregnant last year I found a new doctor closer to home based on glowing recommendations. At the first visit it was determined I was very very early on. I did not know how far I was because my cycle is extremely erratic... every 1, 2, 3, or 4 months or whatever. All over the place. I was actually told it would be extremely difficult to get pregnant... HA! how about not... pregnant after being married for 3 months =). Anyways they sent me for blood work and all that jazz. Nothing even showed up in the ultrasound yet...
About a week later they called me at my work to come in for another ultrasound. I thought this was pretty odd but thankfully I was able to leave work early and Chris met me at the office. In the ultrasound they saw a gestational sac. In early early pregnancy, the first thing to show up on ultrasound is the gestational sac, then the yolk sac, then eventually the little peanut baby. After the ultrasound we waited in the office for almost 2 hours to see the doctor. I had never met him before because my first visit was with the nurse practitioner. He walked in the room and said in the most manner-of-fact way... "Based on your bloodwork and what we think we should be seeing in your ultrasound your baby is ectopic and we cannot allow your pregnancy to continue. The pharmacy is closed now but we will get your height and weight today for dosing and you can come back tommorow and have an injection that will dissolve your pregnancy." Chris and I were absolutely stunned. It was the most painful thing I had ever heard in my life.
The only thing I could think to say was that I wanted another ultrasound. After hesitating he finally agreed and arranged for me to go the hospital and have one done there. The ultrasound tech at the hospital was wonderful and did a very long exam. It took almost an hour... but she saw the gestational sac AND the yolk sac... indicating that it couldn't possibly be ectopic. We went in for the appointment the next day and they said that it was better news but they were not convinced it was a healthy pregnancy. They told me what to expect when I miscarried and everything but I wasn't even listening really... I just knew she was in there!
Two weeks later we went in for another ultrasound and heard and saw her little heart beating! We then left that office for the last time and went out for a steak dinner =) The really pathetic part is that the office never called to see why I didn't schedule anymore appointments. Never followed up at all.
So thats that... my little daughter was perfectly fine hanging out, she was just so tiny still. The funny thing is I remember thinking to myself, "well we got the drama out of the way early with this baby, it'll be smooth sailing now" HAHAHA
We saw the helmet doctor yesterday and she said Cordelia has made very significant improvements so far! Its very obvious to us just by looking at her how much the helmet has helped, and now we have confirmation of this. The best part is that she doesn't need to be seen again for 2 months... yippee!
My mom reminded yesterday that it was the 1 year anniversary of the most terrifying events of my life up to that point... and to be honest even after everything that has happened I would still count it as number 1. I'm not sure that many people know about it... I didn't really post on facebook about it... I just couldn't. Not surprisingly it is about my little peanut baby! I will try to abridge the story as much as I can....
When I found out I was pregnant last year I found a new doctor closer to home based on glowing recommendations. At the first visit it was determined I was very very early on. I did not know how far I was because my cycle is extremely erratic... every 1, 2, 3, or 4 months or whatever. All over the place. I was actually told it would be extremely difficult to get pregnant... HA! how about not... pregnant after being married for 3 months =). Anyways they sent me for blood work and all that jazz. Nothing even showed up in the ultrasound yet...
About a week later they called me at my work to come in for another ultrasound. I thought this was pretty odd but thankfully I was able to leave work early and Chris met me at the office. In the ultrasound they saw a gestational sac. In early early pregnancy, the first thing to show up on ultrasound is the gestational sac, then the yolk sac, then eventually the little peanut baby. After the ultrasound we waited in the office for almost 2 hours to see the doctor. I had never met him before because my first visit was with the nurse practitioner. He walked in the room and said in the most manner-of-fact way... "Based on your bloodwork and what we think we should be seeing in your ultrasound your baby is ectopic and we cannot allow your pregnancy to continue. The pharmacy is closed now but we will get your height and weight today for dosing and you can come back tommorow and have an injection that will dissolve your pregnancy." Chris and I were absolutely stunned. It was the most painful thing I had ever heard in my life.
The only thing I could think to say was that I wanted another ultrasound. After hesitating he finally agreed and arranged for me to go the hospital and have one done there. The ultrasound tech at the hospital was wonderful and did a very long exam. It took almost an hour... but she saw the gestational sac AND the yolk sac... indicating that it couldn't possibly be ectopic. We went in for the appointment the next day and they said that it was better news but they were not convinced it was a healthy pregnancy. They told me what to expect when I miscarried and everything but I wasn't even listening really... I just knew she was in there!
Two weeks later we went in for another ultrasound and heard and saw her little heart beating! We then left that office for the last time and went out for a steak dinner =) The really pathetic part is that the office never called to see why I didn't schedule anymore appointments. Never followed up at all.
So thats that... my little daughter was perfectly fine hanging out, she was just so tiny still. The funny thing is I remember thinking to myself, "well we got the drama out of the way early with this baby, it'll be smooth sailing now" HAHAHA
Tuesday, October 27, 2009
Baby's little ticker
So we went to the cardiologist today... he did another echo to check the status of her PDA. It is still large and now is beginning to affect the blood pressures in her little lungs... SAD. The plan is that the doctor is going to show the results of the echo to the cardiac surgeons and then we will proceed based on their recommendations. It may not be until next week that we hear. But thats just fine. We will be ready for whatever they say =)
Funny thing happened while we were there. It was so ridiculous I just have to laugh about it. Most times we go to the cardiologist he increases the dosage of her diuretics because she is dosed based on weight. I had the hardest time getting her meds refilled last time but I figured it was just the insurance company being stingy because I usually call to get them refilled a couple days before I run out because they are so important I don't want her to miss a dose. Well come to find out there was this whole big mess the last time because for some reason the insurance company said I was requesting refills too often and thus they concluded that I was overdosing the baby! INSANE! I guess the doctor had to talk to the insurance rep personally to tell them the dates he changed the doses and had to convince them I wasn't overdosing her! The idea that I am overdosing her is so ridiculous I can't stop laughing about it. She has enough trouble gaining weight! "Here Cordelia take more meds so you don't gain weight and also I want you to get dehydrated." Geez man!
Of course while we were at the hospital we had to see the people mommy works with and little lover was totally putting on a show!!! Smiles all around for everyone. She looked the picture of Halloween in her orange hoodie! It was so cute! =)
We had our 6 month session with Noel and I absolutely cannot wait to see them all!!! I saw a few and they are so perfect. Of course little girl made sure we knew who was boss... fussing for most of the time but then allowed us the pleasure of getting some good Cordelia shots! I am reminded of one of my ultrasounds when she was curled up in a little ball in one spot and refused to move until the very end! "I will cooperate eventually but you all are gonna know that I didn't want to!" We are really in for it with this little girl!
Will continue to update =) Also Happy Birthday to my wonderful husband! You keep me grounded babe =)
Funny thing happened while we were there. It was so ridiculous I just have to laugh about it. Most times we go to the cardiologist he increases the dosage of her diuretics because she is dosed based on weight. I had the hardest time getting her meds refilled last time but I figured it was just the insurance company being stingy because I usually call to get them refilled a couple days before I run out because they are so important I don't want her to miss a dose. Well come to find out there was this whole big mess the last time because for some reason the insurance company said I was requesting refills too often and thus they concluded that I was overdosing the baby! INSANE! I guess the doctor had to talk to the insurance rep personally to tell them the dates he changed the doses and had to convince them I wasn't overdosing her! The idea that I am overdosing her is so ridiculous I can't stop laughing about it. She has enough trouble gaining weight! "Here Cordelia take more meds so you don't gain weight and also I want you to get dehydrated." Geez man!
Of course while we were at the hospital we had to see the people mommy works with and little lover was totally putting on a show!!! Smiles all around for everyone. She looked the picture of Halloween in her orange hoodie! It was so cute! =)
We had our 6 month session with Noel and I absolutely cannot wait to see them all!!! I saw a few and they are so perfect. Of course little girl made sure we knew who was boss... fussing for most of the time but then allowed us the pleasure of getting some good Cordelia shots! I am reminded of one of my ultrasounds when she was curled up in a little ball in one spot and refused to move until the very end! "I will cooperate eventually but you all are gonna know that I didn't want to!" We are really in for it with this little girl!
Will continue to update =) Also Happy Birthday to my wonderful husband! You keep me grounded babe =)
Tuesday, October 20, 2009
Fall Fun!
Babes and I went to the doctor today and our little chunker is 9 lbs 3 ozs! She gained an ounce a day for 5 days straight! Yay Miss Cordelia! She has really started to change in the last few days also. She is much more connected to everything and just seems older to me. I don't know how else to describe it! She is so sweet!
Mommy had a crazy idea to rake a giant pile of leaves in the front lawn and then put the baby in it for some pictures... took several rearrangements for it to work... first I put her just straight in the leaves but she kept sinking and it was unnerving... she didn't like it very much!
Hahahaha! Then I pulled out the boppy and it went much better! After a few positions I ended up with some adorable shots of her playing in the leaves! She loved it so much and was very mad when I took her out because she kept wanting to eat them! =) I didn't want to have to explain to her doctors that she got sick because I let her eat leaves!!!
It was a fun little day for mommy and baby =)
Sunday, October 18, 2009
Twilight Zone Week!
Oh my goodness gracious me! What a nutso week it has been!!! Where to begin where to begin....
Tuesday we saw the speech pathologist, of course lover was acting up during her feeding but I like it when she does that in front of the professionals... makes me not look like I'm making it up =p She is so funny. Her feedings are totally variable as always. Her consistency is her inconsistency... makes it so easy to do a calorie count! AAAHHH. Oh well she'll figure this eating thing out one day =)
Wednesday was a very ridiculous day. Started off going to see the orthotist to have a helmet (or as I like to call it her bubble) check. She made a few minor adjustments and babes seems to be completely unphased by the whole thing. I of course have it decorated with her name in pink glittery stickers and Halloween pumpkins... SO CUTE! After we drove all the way home from Madison Hgts from that I noticed there was a sharp edge that didn't get buffered down after she made adjustments so back in the car we went. And can I just say that #1 I hate construction and #2 what in the world is up with I-75?! What a nightmare! People drive like they are possessed. Babes was also having trouble keeping her feedings down but she is still getting over her cold. Just a crazy day that ended in a crazy shift at work!
Thursday we went to the pediatrician for a weight check... 8 lbs 14 ozs yay!!! Thats a 6 oz weight gain in 2 weeks... not quite where she needs to be but a definate improvement! We also went up on her zantac for her reflux. It already seems to be helping!
Friday we went to the dietician to try and figure all her calories out but again she is so varying in her feedings. She is a tricky one thats for sure. For now we are going to stay on the original formula supplement at the original ratio of neosure to breastmilk because that is all she continues to tolerate.
The cardiologist office called me and wanted to move up her next appt to next tuesday... not sure why but to be honest the sooner we fix her little ticker the better. I think she will feel much better when she doesn't have to work so hard to do things like breathe and eat. I will surely keep you all posted on that. I am fairly certain she will have to have it fixed with the surgery through her ribs... thats what I am preparing myself for anyways. She tends to take the longer road... the girl cannot be rushed!
The worlds biggest news ever is that she rolled over!!! Of course she did it in the dark of night... stinker face. I put her to bed on her back and when I woke up she was on her belly. She hasn't done it since of course and I keep trying to get her to and she just smiles a big smile at me. "No way mommy I don't to tricks on command" HAHA
So far next week we only have to go to the pediatrician to get her 6 months vaccines. Poor little booger =( I do think her shots have more affect on her than they do me =p haha
Tuesday we saw the speech pathologist, of course lover was acting up during her feeding but I like it when she does that in front of the professionals... makes me not look like I'm making it up =p She is so funny. Her feedings are totally variable as always. Her consistency is her inconsistency... makes it so easy to do a calorie count! AAAHHH. Oh well she'll figure this eating thing out one day =)
Wednesday was a very ridiculous day. Started off going to see the orthotist to have a helmet (or as I like to call it her bubble) check. She made a few minor adjustments and babes seems to be completely unphased by the whole thing. I of course have it decorated with her name in pink glittery stickers and Halloween pumpkins... SO CUTE! After we drove all the way home from Madison Hgts from that I noticed there was a sharp edge that didn't get buffered down after she made adjustments so back in the car we went. And can I just say that #1 I hate construction and #2 what in the world is up with I-75?! What a nightmare! People drive like they are possessed. Babes was also having trouble keeping her feedings down but she is still getting over her cold. Just a crazy day that ended in a crazy shift at work!
Thursday we went to the pediatrician for a weight check... 8 lbs 14 ozs yay!!! Thats a 6 oz weight gain in 2 weeks... not quite where she needs to be but a definate improvement! We also went up on her zantac for her reflux. It already seems to be helping!
Friday we went to the dietician to try and figure all her calories out but again she is so varying in her feedings. She is a tricky one thats for sure. For now we are going to stay on the original formula supplement at the original ratio of neosure to breastmilk because that is all she continues to tolerate.
The cardiologist office called me and wanted to move up her next appt to next tuesday... not sure why but to be honest the sooner we fix her little ticker the better. I think she will feel much better when she doesn't have to work so hard to do things like breathe and eat. I will surely keep you all posted on that. I am fairly certain she will have to have it fixed with the surgery through her ribs... thats what I am preparing myself for anyways. She tends to take the longer road... the girl cannot be rushed!
The worlds biggest news ever is that she rolled over!!! Of course she did it in the dark of night... stinker face. I put her to bed on her back and when I woke up she was on her belly. She hasn't done it since of course and I keep trying to get her to and she just smiles a big smile at me. "No way mommy I don't to tricks on command" HAHA
So far next week we only have to go to the pediatrician to get her 6 months vaccines. Poor little booger =( I do think her shots have more affect on her than they do me =p haha
Thursday, October 8, 2009
Stuffy nose helmet head =p
So we went to the surgeon on tuesday and everything from his end looks good! I figured as much. There was some concern that perhaps her difficulty gaining weight was related to her colostomy but I didn't think so. And neither did he. We are right on track for her colostomy reversal in January. It was so funny because he just kept telling her how cute she is and she LOVED it! She cried when he left the room. Haha =) As if she doesn't hear that enough from EVERYONE ELSE!
The helmet is going ok, it does not seem to bother her once its on. The only problem is getting her skin used to it. I liken it to breaking in new shoes. She gets these little red spots on her forehead, but we have this special cream so we'll see how it goes. I am fighting the urge to leave it off sometimes. Hasn't she had to put up with enough?! Sometimes I just have to remind myself that this is all temporary and she is tougher than I will ever know. So I just have to be tough too.
She and I have matching colds right now and I am convinced I have seen the saddest thing ever: cleaning out a stuffy nose on a baby. She was just looking at me so sad. "Mommy what are you doing to me?" So pitiful. Her whimper is so pitiful too. =( It's weird because this is first normal baby ailment we have had so far. It's refreshing to not have to take her to a specialist for this problem. haha
We are still touch and go on her feedings but thats nothing new. We are trying to find a happy medium between adding enough formula (the formula from the hospital, not the crazy new one) and not adding too much. We want to bulk up her calories as much as we can, but too much and it aggravates her acid reflux. It's a fun game we play! It will all get figured out eventually. She can't be tiny forever, although I do know that one day I will look back and wish she was little again.
I think that's it for now. We are going for a record 4 appointments next week so I am sure I will have loads to talk about. =)
The helmet is going ok, it does not seem to bother her once its on. The only problem is getting her skin used to it. I liken it to breaking in new shoes. She gets these little red spots on her forehead, but we have this special cream so we'll see how it goes. I am fighting the urge to leave it off sometimes. Hasn't she had to put up with enough?! Sometimes I just have to remind myself that this is all temporary and she is tougher than I will ever know. So I just have to be tough too.
She and I have matching colds right now and I am convinced I have seen the saddest thing ever: cleaning out a stuffy nose on a baby. She was just looking at me so sad. "Mommy what are you doing to me?" So pitiful. Her whimper is so pitiful too. =( It's weird because this is first normal baby ailment we have had so far. It's refreshing to not have to take her to a specialist for this problem. haha
We are still touch and go on her feedings but thats nothing new. We are trying to find a happy medium between adding enough formula (the formula from the hospital, not the crazy new one) and not adding too much. We want to bulk up her calories as much as we can, but too much and it aggravates her acid reflux. It's a fun game we play! It will all get figured out eventually. She can't be tiny forever, although I do know that one day I will look back and wish she was little again.
I think that's it for now. We are going for a record 4 appointments next week so I am sure I will have loads to talk about. =)
Monday, October 5, 2009
Tour de France
Big news today... we have our helmet. Its small and pink and she is ready to start training for the Tour de France. Or the roller derby we haven't decided yet! I still have to get some pictures of her in it... I'll post them when I do it's so funny =) It doesn't seem to be bothering her. Hopefully it will stay this way for the next few months!
We are still working on this feeding issue. Of course the day after the incident with that crazy formula I get a call from the supplier saying its 100% covered and they could drop it off to the house. Figures this would go right... geesh. I told them to hold off, we go to the speech therapist and dietician on friday to try and figure something out for this little peanut baby.
Her newest trick is she is all of a sudden the worlds most devoted thumb sucker! Morning, noon, and night and you can hear it from across the room its so hilarious! This is good because it means she is comfortable playing with her mouth which is new. She is learning that you don't always gag and have trouble with your tummy!
We go to the surgeon tommorow so he can check her colostomy and make sure we are on track for surgery in January. Shouldn't be a problem. That will make our second of 3 appts this week and we have 3 already for next week. Yay! So fun for mommy and baby =)
Our little trio has finally moved into the second floor of the house... only took me 2 years to finish it! Its wonderful! Babes has her own little nook and mommy and daddy have their big bed and big closet! So cozy and perfect =) Pictures to come!
Ok I think that about covers it for now. We'll see what the surgeon says tommorow.
We are still working on this feeding issue. Of course the day after the incident with that crazy formula I get a call from the supplier saying its 100% covered and they could drop it off to the house. Figures this would go right... geesh. I told them to hold off, we go to the speech therapist and dietician on friday to try and figure something out for this little peanut baby.
Her newest trick is she is all of a sudden the worlds most devoted thumb sucker! Morning, noon, and night and you can hear it from across the room its so hilarious! This is good because it means she is comfortable playing with her mouth which is new. She is learning that you don't always gag and have trouble with your tummy!
We go to the surgeon tommorow so he can check her colostomy and make sure we are on track for surgery in January. Shouldn't be a problem. That will make our second of 3 appts this week and we have 3 already for next week. Yay! So fun for mommy and baby =)
Our little trio has finally moved into the second floor of the house... only took me 2 years to finish it! Its wonderful! Babes has her own little nook and mommy and daddy have their big bed and big closet! So cozy and perfect =) Pictures to come!
Ok I think that about covers it for now. We'll see what the surgeon says tommorow.
Thursday, October 1, 2009
Chicken Little Victorious
But Elizabeth, if Chicken Little is victorious thats a bad thing right? I mean that would mean that the sky has fallen right? If so what has happened to make such a claim?!
Mommy and Cordelia went to the doctors today for a weight check. Imagine my joy and excitement to learn that our insurance did not renew our coverage! Hooray for having no insurance =) What a thrill. We already have 3 appts next week for various things and her helmet comes in on monday. Yippee!
I did call my HR department after getting home and they just "haven't filed the paperwork yet." Well perhaps you should do that shouldn't you. I explained to the woman that I have a preemie who is at the doctor constantly... I need it filed today. She said it would go through today... I'll be verifing that. Good grief and by the way could you retrieve my stomach from the floor too Christine? Since I'm presently off insurance can I get that retrocovered when you file my paperwork please? Thanks so much =p
When we left the office I half contemplated walking home... would this be a safer choice for an uninsured pair like little monkey and myself? I concluded that we would likely fall ill from the cold and driving was worth the risk. If only she were already in her helmet... maybe I should have stopped for bubble wrap on the way home....I have never driven so carefully in my life! haha
The good news is that crinkle pants gained 3 whole ozs! Much better than her previous weeks. We are now at 8 lbs 8 ozs and she is 22 1/2 inches long! So thats the most important part of all. Thank you for being such a good girl Miss Cordelia! =)
Hopefully that's all the excitement for today... if I don't post anything for a while check to see if there had been any random pianos falling on peoples heads because surely you would find me there =)
Mommy and Cordelia went to the doctors today for a weight check. Imagine my joy and excitement to learn that our insurance did not renew our coverage! Hooray for having no insurance =) What a thrill. We already have 3 appts next week for various things and her helmet comes in on monday. Yippee!
I did call my HR department after getting home and they just "haven't filed the paperwork yet." Well perhaps you should do that shouldn't you. I explained to the woman that I have a preemie who is at the doctor constantly... I need it filed today. She said it would go through today... I'll be verifing that. Good grief and by the way could you retrieve my stomach from the floor too Christine? Since I'm presently off insurance can I get that retrocovered when you file my paperwork please? Thanks so much =p
When we left the office I half contemplated walking home... would this be a safer choice for an uninsured pair like little monkey and myself? I concluded that we would likely fall ill from the cold and driving was worth the risk. If only she were already in her helmet... maybe I should have stopped for bubble wrap on the way home....I have never driven so carefully in my life! haha
The good news is that crinkle pants gained 3 whole ozs! Much better than her previous weeks. We are now at 8 lbs 8 ozs and she is 22 1/2 inches long! So thats the most important part of all. Thank you for being such a good girl Miss Cordelia! =)
Hopefully that's all the excitement for today... if I don't post anything for a while check to see if there had been any random pianos falling on peoples heads because surely you would find me there =)
Chicken Little
As I sit and wait for her bottle to be warmed up I thought I'd throw in a quick update. We saw the speech pathologist again on monday and she was showing improvement with her eating... yay! She also found some sample cans of the new formula which she gave me. This was much appreciated since all the insurance issues havn't been resolved yet and I want a fat baby now! =)
But, in true Cordelia style the new formula was a complete and total failure!!! She took 2 sips and I suspect that first of all she doesn't like the taste and second of all it has a funny consistency but she went absolutely balistic! She was so hysterical her face was completely red and instead of swallowing all these gooey globs were pouring out of her mouth. It was so traumatic!!! She was making noises I would never think a human being could possibly make. It was so wild. After I calmed her down I had to laugh because it was such a ridiculous spectacle. It took her a half hour to relax.
This may be a blessing in disguise though because if insurance didn't cover this stuff Chris and I would be shelling out about $600 a month to have her on this formula. So now the type of girl she is continues to be a mystery. Apparently not one that can be won with expensive things =)
The best part of the whole day was after I decided to put her in cloth diapers so save some money. (Just one of my many brilliant money saving ideas... haha) I went out and bought the old school plastic pants and pins, I already had diapers I had been using as burp cloths. Saved a ton the way I figured. Which is true but there is a wonderful biproduct of this new plan. These things are hilarious! First of all, she looks like she has the biggest butt in the world! Secondly, I'm not sure if the plastic pants need to be washed a few times but it sounds like someone dressed her in a grocery bag when she moves. I called her krinkle butt all day and I'm not sure she appreciated it. But the endless entertainment I will get from them will be worth it!
I also decided to cut back on groceries and that was somewhat of a failure- I bought cheese, milk, cereal, and some chicken. I'm not sure what this was supposed to accomplish but hey I had a traumatic day! Chris was cracking up! He dubbed me chicken little because we aren't in such a bad way that he and I have to starve. So I'm being overly cautious. =p And now I still have to actually go grocery shopping because that can't feed 2 adults for a week. Oh me and my crazy mom brain.
Ok, I need to feed this munchkin. Off to the pediatrician for a weight check today. Come on Cordelia fat baby fat baby!
But, in true Cordelia style the new formula was a complete and total failure!!! She took 2 sips and I suspect that first of all she doesn't like the taste and second of all it has a funny consistency but she went absolutely balistic! She was so hysterical her face was completely red and instead of swallowing all these gooey globs were pouring out of her mouth. It was so traumatic!!! She was making noises I would never think a human being could possibly make. It was so wild. After I calmed her down I had to laugh because it was such a ridiculous spectacle. It took her a half hour to relax.
This may be a blessing in disguise though because if insurance didn't cover this stuff Chris and I would be shelling out about $600 a month to have her on this formula. So now the type of girl she is continues to be a mystery. Apparently not one that can be won with expensive things =)
The best part of the whole day was after I decided to put her in cloth diapers so save some money. (Just one of my many brilliant money saving ideas... haha) I went out and bought the old school plastic pants and pins, I already had diapers I had been using as burp cloths. Saved a ton the way I figured. Which is true but there is a wonderful biproduct of this new plan. These things are hilarious! First of all, she looks like she has the biggest butt in the world! Secondly, I'm not sure if the plastic pants need to be washed a few times but it sounds like someone dressed her in a grocery bag when she moves. I called her krinkle butt all day and I'm not sure she appreciated it. But the endless entertainment I will get from them will be worth it!
I also decided to cut back on groceries and that was somewhat of a failure- I bought cheese, milk, cereal, and some chicken. I'm not sure what this was supposed to accomplish but hey I had a traumatic day! Chris was cracking up! He dubbed me chicken little because we aren't in such a bad way that he and I have to starve. So I'm being overly cautious. =p And now I still have to actually go grocery shopping because that can't feed 2 adults for a week. Oh me and my crazy mom brain.
Ok, I need to feed this munchkin. Off to the pediatrician for a weight check today. Come on Cordelia fat baby fat baby!
Friday, September 25, 2009
Baby steps
Our little monkey gained 2 ozs this week so is up to 8 lbs 5 ozs! Nowhere near what she should be gaining but she didn't lose anything so I will count it as a win. Her acid reflux is still an issue but the pediatrician is hesitant to go up on her dose of zantac because they do infant dosages based primarily on weight. The last thing she needs is to OD on zantac! I went today to get the new supplement she needs and it's only $60 per can! =( Man they make this stuff so expensive! It is going to take a week for it to come in and in the meantime they are going to work with our insurance to see if they will cover any of it. Here's hoping!
On a very fun note little miss is a total smile machine! It's sooo cute! She is such a sweet happy little baby. This weekend will mark the finale of our September Wedding Marathon. Jacqui's wedding last weekend was so lovely and my mom made lover a dress to match mine... =)
On a very fun note little miss is a total smile machine! It's sooo cute! She is such a sweet happy little baby. This weekend will mark the finale of our September Wedding Marathon. Jacqui's wedding last weekend was so lovely and my mom made lover a dress to match mine... =)
Thursday, September 24, 2009
First Post
Hello everyone!
I wanted to start a blog to chronicle my little daughters journey. (Thanks Noel for the idea!) Cordelia was born at 29 weeks gestation (almost 3 months early) on April 12, 2009. She weighed in at 2 lbs 14 ozs and was only 15 inches long! I suppose I can go into the whole story at some point but that would really jog my memory... To make a long story very brief she ended up with a 82 day stay in the NICU after multiple complications including necrotizing enterocolitis (NEC), developing an intestinal stricture requiring her to have 40% of her large intestive removed and a colostomy which she still has,and a heart murmur due to a patent ductus arteriosis (PDA). She was on a ventilator for about 2 1/2 weeks total.
All of this said you would never know she has any trouble looking at her. She is a very active 5 month old! The plan is to have her colostomy reversed in January. Since she has been home (July 3) she has had a grand total of 21 doctors appointments for various reasons. She is being followed by a cardiologist for her PDA. Last week the cardiologist said that will have to have her heart fixed. We are hoping she will be a candidate for repairing the PDA via a cardiac cath procedure in which they would access her heard through her femoral artery in her groin. The only way they could do it this way is if she gains enough weight. The less preferred way is to access her heart through a couple of ribs in her side. So we want to fatten her up!!!!
She is seeing a speech pathologist to work with her suck/swallow abilities which are poor and a dietician to follow her calories. She is also having trouble with acid reflux so they started her on Zantac which seems to be helping. Her eating has gone way downhill recently and the speech pathologist said it is because she learned that the more I eat, the more my tummy hurts from reflux... SAD! =( Little peanut has had no significant weight gain in about 3 weeks. She is 8 lbs 3 ozs as of last friday (a 1 oz loss from the week before). The dietician is recommending adding a formula only available by perscription and adding it to my milk. Here's hoping!
She developed flat spots on the sides of her head from being in the NICU for so long so she needs to wear a helmet to correct it. She has been fitted for it and any day now I expect a call to go get it. I will post pictures of her in it... I'm sure it will be so cute! I ordered it in pink of course!
She had been seeing an opthomologist every weeks since coming home because preemies are at high risk for developing retinopathy from the oxygen used in the hospital. She did develop some retinopathy in both eyes but as of this past monday she was given the all clear to followup in January! The best birthday present I've ever recieved! =)
I think that's pretty much it in a nutshell for now. We go to the pediatrician for a weight check tommorow so we are hoping for a good gain! We know you can do it Cordelia!!!
I wanted to start a blog to chronicle my little daughters journey. (Thanks Noel for the idea!) Cordelia was born at 29 weeks gestation (almost 3 months early) on April 12, 2009. She weighed in at 2 lbs 14 ozs and was only 15 inches long! I suppose I can go into the whole story at some point but that would really jog my memory... To make a long story very brief she ended up with a 82 day stay in the NICU after multiple complications including necrotizing enterocolitis (NEC), developing an intestinal stricture requiring her to have 40% of her large intestive removed and a colostomy which she still has,and a heart murmur due to a patent ductus arteriosis (PDA). She was on a ventilator for about 2 1/2 weeks total.
All of this said you would never know she has any trouble looking at her. She is a very active 5 month old! The plan is to have her colostomy reversed in January. Since she has been home (July 3) she has had a grand total of 21 doctors appointments for various reasons. She is being followed by a cardiologist for her PDA. Last week the cardiologist said that will have to have her heart fixed. We are hoping she will be a candidate for repairing the PDA via a cardiac cath procedure in which they would access her heard through her femoral artery in her groin. The only way they could do it this way is if she gains enough weight. The less preferred way is to access her heart through a couple of ribs in her side. So we want to fatten her up!!!!
She is seeing a speech pathologist to work with her suck/swallow abilities which are poor and a dietician to follow her calories. She is also having trouble with acid reflux so they started her on Zantac which seems to be helping. Her eating has gone way downhill recently and the speech pathologist said it is because she learned that the more I eat, the more my tummy hurts from reflux... SAD! =( Little peanut has had no significant weight gain in about 3 weeks. She is 8 lbs 3 ozs as of last friday (a 1 oz loss from the week before). The dietician is recommending adding a formula only available by perscription and adding it to my milk. Here's hoping!
She developed flat spots on the sides of her head from being in the NICU for so long so she needs to wear a helmet to correct it. She has been fitted for it and any day now I expect a call to go get it. I will post pictures of her in it... I'm sure it will be so cute! I ordered it in pink of course!
She had been seeing an opthomologist every weeks since coming home because preemies are at high risk for developing retinopathy from the oxygen used in the hospital. She did develop some retinopathy in both eyes but as of this past monday she was given the all clear to followup in January! The best birthday present I've ever recieved! =)
I think that's pretty much it in a nutshell for now. We go to the pediatrician for a weight check tommorow so we are hoping for a good gain! We know you can do it Cordelia!!!
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