This week was great too, not sick at all!
Steve came to visit again which was a fun surprise! I caught him on my phone before he got there :) so I figured out he was coming to surprise me.
Not much to report from this week. The nurses all apologized a lot for not bumping up my dose last week. And, they brought me lots of chocolate and treats to try to make up for it!
Steve was able to pick up Abby a little earlier from Melissa's house and that always makes me feel a little better because it can give Melissa little break.
Other than that it was great. Not sick, not too tired, and overall feeling pretty good. Praise the Lord for two healthy weeks!
Sunday, February 24, 2013
IVIG 18
A little behind here....But that is OK. IVIG 18 was so eventful!
The day started off pretty normal. Abby and I went to Panera for breakfast so that I could be in a better mood when getting to IVIG. I was pretty nervous about getting sick again and was kind of a basket case on Friday morning.
Abby and I had a great breakfast at Panera and she hammed it up just like she always does. The people there loved her.
Then I was on my way to IVIG and just started crying...I called Steve and he was able to pray for me to be not be so anxious.
I got there, we started off, it was fine. THEN, I get a text that says, "Where exactly in the hospital are you?" I can't figure out Memorial so answering that question is really tough. About 30 minutes I hear a familiar voice and laugh, and KATIE showed up with flowers and chocolate!!! What an awesome surprise! She drove all the way up there on her lunch hour and totally cheered me up. She also prayed with me in the room which I know was why I didn't get sick last week.
AND THEN, it gets even better! STEVE showed up with flowers too! I knew he had an "off" day from teaching but didn't know he was coming to visit! It worked out great because Katie had to leave and then I got to have Steve stay with me for a little longer. And, he got to eat my lunch which I wasn't going to eat, so I got to feed him too.
AND THEN, CHRISTINE showed up with a smoothie! (Really, three visitors in one day?? All the nurses kept saying how popular I was!) The smoothie was just what I needed...I make smoothies at least 3x a week here because I can't get enough fruit and I can add some yogurt/spinach/protein stuff to it to make it a little healthier. Christine stayed for a long time. I remember my mom saying that my grandfather would go visit one of his friends who was really sick and he would sit with him in the hospital every week just to talk. My grandfather made a point to do that every week and would sit there for hours. I never knew how valuable that time was....It gets lonely sitting in a room all by yourself all day and I only have to be there once a week. I can't imagine what it would be like every single day.
And, in addition to that, there were some adventures during IVIG....A computer started smoking so we had to evacuate the infusion center...and there was a mouse in the infusion center! The computer was super dusty inside which is why it was smoking and the mouse is still there as far as I know. Also, with all the adventure going on, they forgot to keep on top of my infusion. Every 30 minutes for the first two hours they are able to speed up the infusion rate until we get to the max. So, when I sit there, it takes forever for the first bag to finish because the rate is so slow, but then, the second bag only takes about 2.5 hours. Well, we went for 2.5 hours at the low rate which made me have to stay at the infusion center an extra 90 minutes. Which, normally is a huge pain, but having so many visitors made the day go by fast!
I didn't get sick after IVIG this week either, so that was great!
The day started off pretty normal. Abby and I went to Panera for breakfast so that I could be in a better mood when getting to IVIG. I was pretty nervous about getting sick again and was kind of a basket case on Friday morning.
Abby and I had a great breakfast at Panera and she hammed it up just like she always does. The people there loved her.
Then I was on my way to IVIG and just started crying...I called Steve and he was able to pray for me to be not be so anxious.
I got there, we started off, it was fine. THEN, I get a text that says, "Where exactly in the hospital are you?" I can't figure out Memorial so answering that question is really tough. About 30 minutes I hear a familiar voice and laugh, and KATIE showed up with flowers and chocolate!!! What an awesome surprise! She drove all the way up there on her lunch hour and totally cheered me up. She also prayed with me in the room which I know was why I didn't get sick last week.
AND THEN, it gets even better! STEVE showed up with flowers too! I knew he had an "off" day from teaching but didn't know he was coming to visit! It worked out great because Katie had to leave and then I got to have Steve stay with me for a little longer. And, he got to eat my lunch which I wasn't going to eat, so I got to feed him too.
AND THEN, CHRISTINE showed up with a smoothie! (Really, three visitors in one day?? All the nurses kept saying how popular I was!) The smoothie was just what I needed...I make smoothies at least 3x a week here because I can't get enough fruit and I can add some yogurt/spinach/protein stuff to it to make it a little healthier. Christine stayed for a long time. I remember my mom saying that my grandfather would go visit one of his friends who was really sick and he would sit with him in the hospital every week just to talk. My grandfather made a point to do that every week and would sit there for hours. I never knew how valuable that time was....It gets lonely sitting in a room all by yourself all day and I only have to be there once a week. I can't imagine what it would be like every single day.
And, in addition to that, there were some adventures during IVIG....A computer started smoking so we had to evacuate the infusion center...and there was a mouse in the infusion center! The computer was super dusty inside which is why it was smoking and the mouse is still there as far as I know. Also, with all the adventure going on, they forgot to keep on top of my infusion. Every 30 minutes for the first two hours they are able to speed up the infusion rate until we get to the max. So, when I sit there, it takes forever for the first bag to finish because the rate is so slow, but then, the second bag only takes about 2.5 hours. Well, we went for 2.5 hours at the low rate which made me have to stay at the infusion center an extra 90 minutes. Which, normally is a huge pain, but having so many visitors made the day go by fast!
I didn't get sick after IVIG this week either, so that was great!
Tuesday, February 19, 2013
Abby asks for her...
Every single day...
Before bed we read the Alice book.
On the way to Villa she asks for Alice.
When we go to bed, "Alice, sleeping"
When we wake up, "Alice?"
When we are in the car, "Alice house?"
It's all day long....I love it.
Thursday, February 14, 2013
She is Two!
Oh Sweet Abby Girl. We love you so much. So much. You bring us so much joy.
Your personality is starting to shine. Some things I really love about you:
You say "Yes-ey" instead of "yes"
You say "Yes-ey" instead of "yes"
You still LOVE your pacifiers. When you need a break you will run into your room (i.e. the place where the crib is...BK2s room) reach for your pacifier, shut the door, and rest in the baby swing...That is until we find you and tell you pacifiers are for night time...
You ask for Alice almost every day.
You still cry a little when going into Villa, but you always come out happy
You are going through a "mommy" time right now..
You want "piggies" (pig tails) every morning and ask for them after nap too.
You are turning into a bit of a picky eater...You LOVE peanut butter, yogurt, cereal, and cucumbers. You aren't always crazy about what we are having for dinner.
You love to play with bubbles.
One of my favorite things is watching you run. You still run a bit on your toes (I am sure your PT would have something to say about that) but it is like you are skipping and it is so cute.
Your favorite toy is your American Girl Doll that mommy had when she was a kid
You like to "help" with everything.
You are starting to say "no" when you don't want to do what we ask.....
You like to choose what video you watch in the morning, we are rotating between Baby Einstein, Baby Signing Time and Barney.
There are dogs next door and every time you wake up you look out the window to see if you can find them.
You are getting close to being able to answer the question, "What is your name?" Instead of saying "I don't know." You are starting to say "Abby"
You can count to 10 (you miss 7 though)...You try to go up to 15!
You love to sing. Today I put you down for nap and you laid in your bed singing for about 15 minutes.
I think you are getting your 2 year molars in
You like getting in the "blue car" and you love it when you see "daddy's new car" pull in the garage
You started to do somersaults on our bed!
If we give you something and it is "new" it makes your day! Sometimes we give you "new" things that aren't really new.
You are at 85% for height and 75% for weight.
You love babies....Love them. I can't wait for you to meet BK2.
You talk in 2-3 word phrases. We are working on more complete sentences.
You pray at every meal and every night. It is so cute. Usually goes like this, "Jesus, I love you, Amen." Sometimes we get a "thank you" in there...and if Mommy/Daddy starts saying thank you for specific people, you fill it in with names. It is really cute. You usually remember who we saw or talked to that day and you thank Jesus for them.
Your favorite book right now is a picture book Alice gave you for your birthday.
Abby, I can't believe how much we love you.
(all the pictures are from Melissa. I still haven't figured out how to store/download pictures on my new computer and it is still being backed up from my old computer...I know, full of excuses I am.)
Questions Answered!
Thank you for those of you who read this and who take time to pray for us and our family. We appreciate all of you.
Figured I would post an update.
I met with the Midwife yesterday. She works on the team at MFM at Memorial with 4 doctors who decide and plan what to do with cases like ours. Meeting with her was awesome. She addressed our concerns, listened to what I had to say and was able to answer ALL of my questions. She even called me today with a few follow up items. I am SO THANKFUL for her.
Here are our tentative plans for BK2....Now, this is a baby, and babies do what they want. We can have a plan, but based on development this could all change in a matter of a few minutes. I am counting on this changing at least once...You can't plan for babies.
Right now the plan is:
March 5 and 6: Steroid treatment to develop BK2's lungs. This is an injection and must happen 24 hours apart.
March 13: 35 weeks, amnio done to determine if lungs are developed
March 15: if lungs are mature, c-section will be on this day (or the next, read below)
Now, come March 13, things could change based on the amnio. If the lungs are not developed, they will NOT do a csection on March 15. They will wait a week and then schedule it from there. We don't have a "date" set up for that option yet....It is kind of a "wait and see" type of deal. The other trick is I will need one more IVIG treatment before the delivery. March 15 is a Friday and that is when I typically do IVIG. Based on the amnio, they may take me overnight Thursday, March 14, do IVIG all night, and then a c-section in the morning. Or, they may do the regularly scheduled IVIG on Friday, March 15, c-section on Saturday, March 16.
So, it's still clear as mud, but getting a little less foggy. Right now we know that BK2 will be born mid March, probably on March 15 or 16. She will be born at 35 weeks and 2/3 days which is the safest time for her to be born based on the past and the stuff we dealt with before (They want NAIT pregnancies that have had a prior bleed to be born between 35 ad 36 weeks).
They are looking into changing my brand of IVIG based on the sickness I have had. However, we are all a little reluctant to do that because, really, I have been tolerating it well. I have felt good these last two days (Wednesday and Thursday are usually my best days of the week) and I am hoping that IVIG is just a routine thing tomorrow that doesn't make me sick.
Not that I am counting down, but I only have 5 more IVIG infusions to go (one might be an overnight, which would be GREAT, then I wouldn't have to waste an entire day at the hospital!)...That's only about 35 hours left and about 20 more lbs of liquid going into my body.....Can't wait for this to be done!
BK2 is on her way. She has put us through a lot this pregnancy, but is well worth it! She kicks me ALL THE TIME and let's me know she is still in there. Last night she woke me up at 11:30 thinking it was morning...The doctor said I am allowed to take some benadryl to help me sleep (restless sleep is a side effect of prednisone) and I quickly gobbled that up last night at 11:30 and slept till 6:00, it was grand.
Figured I would post an update.
I met with the Midwife yesterday. She works on the team at MFM at Memorial with 4 doctors who decide and plan what to do with cases like ours. Meeting with her was awesome. She addressed our concerns, listened to what I had to say and was able to answer ALL of my questions. She even called me today with a few follow up items. I am SO THANKFUL for her.
Here are our tentative plans for BK2....Now, this is a baby, and babies do what they want. We can have a plan, but based on development this could all change in a matter of a few minutes. I am counting on this changing at least once...You can't plan for babies.
Right now the plan is:
March 5 and 6: Steroid treatment to develop BK2's lungs. This is an injection and must happen 24 hours apart.
March 13: 35 weeks, amnio done to determine if lungs are developed
March 15: if lungs are mature, c-section will be on this day (or the next, read below)
Now, come March 13, things could change based on the amnio. If the lungs are not developed, they will NOT do a csection on March 15. They will wait a week and then schedule it from there. We don't have a "date" set up for that option yet....It is kind of a "wait and see" type of deal. The other trick is I will need one more IVIG treatment before the delivery. March 15 is a Friday and that is when I typically do IVIG. Based on the amnio, they may take me overnight Thursday, March 14, do IVIG all night, and then a c-section in the morning. Or, they may do the regularly scheduled IVIG on Friday, March 15, c-section on Saturday, March 16.
So, it's still clear as mud, but getting a little less foggy. Right now we know that BK2 will be born mid March, probably on March 15 or 16. She will be born at 35 weeks and 2/3 days which is the safest time for her to be born based on the past and the stuff we dealt with before (They want NAIT pregnancies that have had a prior bleed to be born between 35 ad 36 weeks).
They are looking into changing my brand of IVIG based on the sickness I have had. However, we are all a little reluctant to do that because, really, I have been tolerating it well. I have felt good these last two days (Wednesday and Thursday are usually my best days of the week) and I am hoping that IVIG is just a routine thing tomorrow that doesn't make me sick.
Not that I am counting down, but I only have 5 more IVIG infusions to go (one might be an overnight, which would be GREAT, then I wouldn't have to waste an entire day at the hospital!)...That's only about 35 hours left and about 20 more lbs of liquid going into my body.....Can't wait for this to be done!
BK2 is on her way. She has put us through a lot this pregnancy, but is well worth it! She kicks me ALL THE TIME and let's me know she is still in there. Last night she woke me up at 11:30 thinking it was morning...The doctor said I am allowed to take some benadryl to help me sleep (restless sleep is a side effect of prednisone) and I quickly gobbled that up last night at 11:30 and slept till 6:00, it was grand.
Monday, February 11, 2013
IVIG 17 - Where Carey Vents
I didn't want to post about last weeks IVIG. I am pretty sick of IVIG. There is no doubt about that. And, I don't want lots of sympathy or "Oh Carey, your life is so hard" comments (for all the three people who read this blog...) But, I do want there to be an accurate record of what happens every Friday so I remember it for next time :)
I am sick of it. I think anyone in my shoes would be. I try my hardest to make the best of going...Really, to be honest, being at the hospital not terrible. The nurses are wonderful, they share chocolate with me, they know I know the drill and try to make it as easy as possible for me. They don't bug me unless they have to do something with the IV and they are always making sure I am comfortable. I get a lunch even though it is not always great, it always has a good fruit cup and that I appreciate because I have been craving a lot of fruit recently. Last week I got no sandwich and two bowls of fruit....These are no joke bowls (not like fruit in a cup (ie. jello) it's raspberries, strawberries, melon, etc), and I ate it all. It was delicious.
Things I don't like about Friday's:
I guess this is all to say that I am a little down. I think mainly because I am frustrated that there is not an "end" in sight like there was before...I am hoping that Steve and I can get some clarification as to when the doctors feel this baby girl should make her grand entrance. Last time we went to the doctor the story changed and that was really frustrating to us. Based on the research I (and my MI doctor) have done, it looks like starting a lung developing steroid at 35 weeks is the way to go....Then we check to see if the lungs are developed, if they are, baby comes out! That seems to be the safest route. We will see.
I don't feel like I am some amazing mom for doing this....ANY mom would! And I don't like to complain about it because, really, I am floored at the fact that there is medicine that can prevent all the complications we had when Abby was born. I am so grateful for the doctors who have researched this to make BK2s first week/year of life/future easier than Abby's.
With all my complaining on the blog today, I am still going to IVIG, still taking prednisone, and still marching on with this process. It is a GOOD process. It is the Lord's way of saying I am taking care of YOU and THIS BABY GIRL. She is is in good hands, the best hands and for that I am very thankful.
Thanks for reading my "vents" today. It will get better and this baby girl will be here before we know it!
I am sick of it. I think anyone in my shoes would be. I try my hardest to make the best of going...Really, to be honest, being at the hospital not terrible. The nurses are wonderful, they share chocolate with me, they know I know the drill and try to make it as easy as possible for me. They don't bug me unless they have to do something with the IV and they are always making sure I am comfortable. I get a lunch even though it is not always great, it always has a good fruit cup and that I appreciate because I have been craving a lot of fruit recently. Last week I got no sandwich and two bowls of fruit....These are no joke bowls (not like fruit in a cup (ie. jello) it's raspberries, strawberries, melon, etc), and I ate it all. It was delicious.
Things I don't like about Friday's:
- I spend all day at an infusion center getting nothing done. (OK, re-reading this now, I spend a lot of time in prayer, doing devotions, reading, etc. I do get things done, just I would rather be home playing)
- I come home exhausted.
- I miss Abby and feel like I am taking advantage of a friend (even though I KNOW she doesn't see it that way - and she will be mad at me for writing this)
- I am exhausted all weekend when I want to spend time with Steve. This weekend I took two naps when Abby was sleeping and was in bed by 8:45 both Friday and Saturday night.
- I get headaches, not as bad as before and I haven't had to take a pill, but they are still there.
- Part of this is getting food poisioning/the flu (I'm not convinced as to what it was two weeks ago) but I have lost more weight than I would have like to have lost at 30.5 weeks pregnant (meeting with the doctor on Wednesday - hopefully). Loosing weight right now doesn't make sense, I get at least 4 lbs. of fluid pumped into me every Friday and am on a steroid that has side effects of "gaining weight" and "water retention" and I have lost more weight these last two weeks than I have EVER lost on any diet in my life. I should be happy about that right?
- I just feel pretty crummy most of the time. I think it could be the combination of the Prednisone/IVIG. Prednisone weakens my immune system completely and I don't know if I just can't fight stuff off like I used to or what (my body is kind of a work horse, I can pretty much eat whatever I want and I usually don't get sick - I was a teacher for goodness sake, my immune system is sharp). I wash my hands about 800 times a day and they are super dry because of it. That doesn't seem to help.
- There are so many things that I did when I was pregnant with Abby that I can't do now and I feel pretty helpless (while pregnant with Abby I ran a 5K at 30 weeks...This time I am lucky to walk for 20 minutes). I am so glad Steve is around to take care of things. He carries in all the groceries, takes out the trash, moves boxes, lifts things, hangs things, sets up things, carries the laundry upstairs, the list goes on and on. He has been incredible and doesn't give me one bit of grief for not doing the things I normally do.
- I feel "myself" about one day a week. That is usually Wednesday or Thursday. That is the day I get stuff done, can rest all night long, and feel like the "old Carey" is back.
I guess this is all to say that I am a little down. I think mainly because I am frustrated that there is not an "end" in sight like there was before...I am hoping that Steve and I can get some clarification as to when the doctors feel this baby girl should make her grand entrance. Last time we went to the doctor the story changed and that was really frustrating to us. Based on the research I (and my MI doctor) have done, it looks like starting a lung developing steroid at 35 weeks is the way to go....Then we check to see if the lungs are developed, if they are, baby comes out! That seems to be the safest route. We will see.
I don't feel like I am some amazing mom for doing this....ANY mom would! And I don't like to complain about it because, really, I am floored at the fact that there is medicine that can prevent all the complications we had when Abby was born. I am so grateful for the doctors who have researched this to make BK2s first week/year of life/future easier than Abby's.
With all my complaining on the blog today, I am still going to IVIG, still taking prednisone, and still marching on with this process. It is a GOOD process. It is the Lord's way of saying I am taking care of YOU and THIS BABY GIRL. She is is in good hands, the best hands and for that I am very thankful.
Thanks for reading my "vents" today. It will get better and this baby girl will be here before we know it!
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