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 =)
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