Oh Billie...I am so sorry the girls are going through this. It has been several days that I have missed reading my blogs and I just was able to catch up.
I will be praying for both girls and thier 100% recovery and that your hospital stay is not to long.
Billie, I wonder if your comment about needing to be positive is a result of the horrible thread on my blog about my being negative.
You my dear can complain, bitch and moan all you want. This SUCKS. Other parents don't have any idea of how hard your life is.
Hang in the Holland, sweetie. Your sister misses you, your mommy and daddy love you and we are all routing for you to kick the RSV bugs butt.
www.MicroPreemies.com
LizM
Fri Feb 06, 03:31:00 PM EST
Anonymous said...
You're right about not justifying, Billie. I think sometimes here in this setting it might seem like we're pushing you to it because we're so taken with your gorgeous girls.
But honey, let it out. Because it SUCKS--- the coughing, the hospital, the cannula, the calculating times and days and money and insurance, the separation, lack of sleep, endless steroid treatments--- and most of all the worry and anxiety because you love them so damn much.
I am so sorry that you guys are going through this. We send all of our hopes and prayers for a speedy recovery for Holland and big hugs to the entire family.
Fri Feb 06, 04:40:00 PM EST
Anonymous said...
Hugs, Billie. :(
I'm sorry your beautiful girlies are sick and hope they feel better soon!
I agree that you have every right to complain on your blog!!
Fri Feb 06, 05:17:00 PM EST
Anonymous said...
Hang in there Billie. She's in good hands. It's ok to be negative about this. Can you work something out at work? I hope you have a winter break coming up. Claire
Billie, I wish I had it in me to be more honest w/a lot of my feelings about the past 2 1/2 years, I admire you for your honesty, I don't try and sugarcoat anything that Kellar has or is going through but there are days when I just want to sit in front of my computer, cry and blog away! I hope your girls get to feeling better soon. Give Holland hugs from Kellar!
Fri Feb 06, 06:42:00 PM EST
Anonymous said...
Everyone needs to complain sometimes! I hope they get better soon and I WISH they would set up oxygen in home for you guys.. it is so much easier sometimes!
Oh goodness !!!! I am so sorry that you just had to deal with both in the hospital with RSV!!! My son just got out of the hospital as well. Same story as you, although they said he had pneumonia. He was satting 91 awake, 86 asleep and STERIOID RAGE like I have never seen before!!!
i'll scream it at the top of my lungs too......PREMATURITY SUCKS!!!!
You are so right, Billie. Just tell it like it is, and know that you have prayers coming your way. You have no reason to explain yourself -- even on your worst day, you are one of the best moms ever.
You should never have to apologize for admitting that the bad bits are sucky. If you pretended it was all good all the time, you wouldn't be true to us or to yourself.
And admitting the bad bits are bad doesn't mean you don't love your girls, of course! They are two completely seperate issues.
Billie, I am so sorry! You know...people think that when you get home from the NICU, or even after that first year that our little micro preemies are fine...Not realizing that this is probably going to be a life time thing! IT does suck...big time! Know that I am thinking of you and the girls. Hang in there! (hugs)
Sat Feb 07, 06:57:00 AM EST
Anonymous said...
Billie, I am a long time reader of your blog and I had to comment this time.Micro-prematurity sucks big time!!!! Hope the girls are better soon and hope you can find rest. As the grandmother of a 23 weeker, I know that the proverbial tunnel seems to get longer and longer----where is the light? Your strength has given me courage often! Hang in there!!! Jenny
I will be thinking of yall. I know how bad the hospital sucks...not to mention what RSV has done to our family. I know not everyone would feel this way, but you should ask for a pulse ox at home, which much come with oxygen (atleast in texas)... but it would cut out some ER visits... We LOVE having one at our house...its an easy way to know how H and H are breathing... and then if they ar bad..then we take them in!! I wish you lots of luck on kicking this RSV!!
You are right, no need to justify negativity. Dealing with our children's special needs just plain sucks sometimes. I have to agree. Thankfully, like you, I'm mostly optimistic.
RSV sucks double. I hope the girls have a fast recovery.
Sat Feb 07, 11:47:00 PM EST
Anonymous said...
I hope no one is pressuring you to try to be positive about things that are, clearly, negative! I don't think that would help! It is totally okay to call things what they are. Sucky! This is a lot for anyone to take, even someone of your prodigious grace and strength. We'll be praying for you from NJ. --Kate
I'm so sorry you're going through this AGAIN. It is a reality check for me that it will be some time before S&E will be in the clear anytime soon when illness strikes.
As you read in my rant, micro-prematurity SUCKS. You do not have to worry about sounding negative to those of us who understand. You are an amazing mom, and you hate to see your children go through this...we all do, and we hope to see Holland healthy and home soon!
Welllll, I have a lot of health problems myself, sometimes you must throw yourself a pity party and then you kinda get rejuvinated and realize you still have to fight it just as hard, but, I've found over the years, sometimes it really is okay to feel sorry for yourself for a little while. Most people say the standard platitudes of "keep positive" well some days, your get up and go has done got up and went. Thinking of you and the gals. Praying Holland gets lots of relief
Sun Feb 08, 04:01:00 PM EST
[Image]So, here's the scoop on Holland. Coughing started on Sunday night, but for the most part she was still eating, still sleeping, and still smiling, so after the first few days we really thought we had it beat, especially following Eden's fairly quick recovery.
Well, I obviously spoke too soon, and RSV has decided to put up a fight.
Eden was discharged on Tuesday morning and we got home around 12:30. Needless to say, it was a joyful reunion. I am not sure who was happier to see Eden...Holland or Zippo (our Beagle). But we had a great afternoon and evening playing, talking, and hanging out together. Nana and Papa dropped by during dinner (to drop off a second nebulizer), and the girls were being silly hams, pretending to be doggies and "walking" each other around on a leash. Holl was definitely coughing at this point, but nothing too alarming.
We thought we were home free after the girls had their breathing treatments and were tucked in bed, and we settled on the couch with a movie and a bottle of wine. That's when the coughing started in earnest. We must have still been in denial at this point, since we stopped the movie several times to chat, polished off the bottle, and didn't head to bed until 1am. We didn't get any sleep that night. She coughed pretty much all night to the point that she couldn't sleep and kept getting up, coming in our room, and calling for us. Around 3:30am we were up and debating about whether she needed to go to the hospital. It was kind of comical because even though she should have been exhausted and miserable, Holland was pretty chipper, and was being really funny. At one point she was showing us her "moves." She certainly didn't appear to be low on oxygen.
Around 4:30, it became unbearable...that feeling of sitting on the fence, so I just decided to take her to the ER. Our hospital has a pediatric ER that opens at 9, and I generally try to avoid taking them to the adult ER at all costs, but this had been going on so long I didn't think I could wait. So we packed up our bags, planning for a stay, and Holland and I headed out at about 5am. We got to the ER, she was satting 100 for about an hour, and they sent us home.
We got home around 7:30am, I gave both girls a treatment, and crashed into bed in the spare bedroom. My lovely husband got up with the girls, and let me sleep until after 1pm. When he woke me up I was delirious and had no idea what time it was! We had a previously scheduled appt with the pediatrician for Eden's follow-up at 2:30. Holland was clearly not doing well at this point, and John and I both could tell that her oxygen was definitely NOT 100 any longer. I called ahead and let them know I would be bringing both girls in. When we got to the office Holland's sats were sitting at 88-92, and didn't budge with a treatment, so we were sent straight to the ER for the second time, where we were promptly admitted.
So, at this point we've been here two nights. Yesterday evening her oxygen needs were increasing, and they bumped her to 1.5 liters. She is satting around 90-94 with that, mostly on the lower end. Her nasal cannula came off twice in the night and she immediately drops to around 85-88. Every time they have to increase her oxygen, I mentally add two days to our stay. With a standard stay being 4 days, and her Os being increased last night, I'd say we'll be here at least 6 days...putting us at maybe Monday if all goes well.
I was working myself into a tizzy during the night, thinking about all of this...the horror stories that I have heard about RSV and what if she is here for weeks and has to come home on oxygen, and what about preschool, and what about my job, and what the hell?????????????
I'm trying to stay positive. Yes, I absolutely adore my beautiful daughters. They are amazing, and adorable, super cute and cool, and they light up my life. I wouldn't trade them for the world.
But I shouldn't always feel the need to justify a little bit of negativity sometimes. Micro-prematurity sucks. It really does. I'm trying to get over it, I really am, but it just won't let me.
"This Sucks"
24 Comments -
I second you!! (Loudly) Micro-Prematurity Sucks.
Hope Holly feels better soon.
Joey (Mom to a Former 23 weeker)
Fri Feb 06, 02:55:00 PM EST
Oh Billie...I am so sorry the girls are going through this. It has been several days that I have missed reading my blogs and I just was able to catch up.
I will be praying for both girls and thier 100% recovery and that your hospital stay is not to long.
Fri Feb 06, 03:23:00 PM EST
Billie, I wonder if your comment about needing to be positive is a result of the horrible thread on my blog about my being negative.
You my dear can complain, bitch and moan all you want. This SUCKS. Other parents don't have any idea of how hard your life is.
Hang in the Holland, sweetie. Your sister misses you, your mommy and daddy love you and we are all routing for you to kick the RSV bugs butt.
www.MicroPreemies.com
LizM
Fri Feb 06, 03:31:00 PM EST
You're right about not justifying, Billie. I think sometimes here in this setting it might seem like we're pushing you to it because we're so taken with your gorgeous girls.
But honey, let it out. Because it SUCKS--- the coughing, the hospital, the cannula, the calculating times and days and money and insurance, the separation, lack of sleep, endless steroid treatments--- and most of all the worry and anxiety because you love them so damn much.
Hang in there...
Sadie
Fri Feb 06, 04:20:00 PM EST
I am so sorry that you guys are going through this. We send all of our hopes and prayers for a speedy recovery for Holland and big hugs to the entire family.
Fri Feb 06, 04:40:00 PM EST
Hugs, Billie. :(
I'm sorry your beautiful girlies are sick and hope they feel better soon!
I agree that you have every right to complain on your blog!!
Fri Feb 06, 05:17:00 PM EST
Hang in there Billie. She's in good hands. It's ok to be negative about this. Can you work something out at work? I hope you have a winter break coming up.
Claire
Fri Feb 06, 05:26:00 PM EST
Billie,
I wish I had it in me to be more honest w/a lot of my feelings about the past 2 1/2 years, I admire you for your honesty, I don't try and sugarcoat anything that Kellar has or is going through but there are days when I just want to sit in front of my computer, cry and blog away! I hope your girls get to feeling better soon. Give Holland hugs from Kellar!
Fri Feb 06, 06:42:00 PM EST
Everyone needs to complain sometimes! I hope they get better soon and I WISH they would set up oxygen in home for you guys.. it is so much easier sometimes!
Fri Feb 06, 06:58:00 PM EST
Oh goodness !!!! I am so sorry that you just had to deal with both in the hospital with RSV!!! My son just got out of the hospital as well. Same story as you, although they said he had pneumonia. He was satting 91 awake, 86 asleep and STERIOID RAGE like I have never seen before!!!
i'll scream it at the top of my lungs too......PREMATURITY SUCKS!!!!
good luck! prayers coming your way,
lindsay
Fri Feb 06, 08:13:00 PM EST
Ugggh! You guys can't catch a break! I hope and pray that Holland kicks RSV a**!!!
Don't ever feel the need to justify, no one knows the walk you've walked. If they think they do, they have no clue.
Thinking of you all, hoping Holland is better very soon.
Fri Feb 06, 11:10:00 PM EST
The fact that you celebrate your daughters means that you're not negative, even when you post something negative (if that makes sense).
Hope they get well soon.
Fri Feb 06, 11:28:00 PM EST
You are so right, Billie. Just tell it like it is, and know that you have prayers coming your way. You have no reason to explain yourself -- even on your worst day, you are one of the best moms ever.
Sat Feb 07, 01:11:00 AM EST
You should never have to apologize for admitting that the bad bits are sucky. If you pretended it was all good all the time, you wouldn't be true to us or to yourself.
And admitting the bad bits are bad doesn't mean you don't love your girls, of course! They are two completely seperate issues.
xx
Sat Feb 07, 06:04:00 AM EST
Billie, I am so sorry! You know...people think that when you get home from the NICU, or even after that first year that our little micro preemies are fine...Not realizing that this is probably going to be a life time thing! IT does suck...big time! Know that I am thinking of you and the girls. Hang in there! (hugs)
Sat Feb 07, 06:57:00 AM EST
Billie, I am a long time reader of your blog and I had to comment this time.Micro-prematurity sucks big time!!!! Hope the girls are better soon and hope you can find rest. As the grandmother of a 23 weeker, I know that the proverbial tunnel seems to get longer and longer----where is the light?
Your strength has given me courage often! Hang in there!!! Jenny
Sat Feb 07, 12:26:00 PM EST
We are praying for a swift recovery and NO MORE RSV!
Sat Feb 07, 01:29:00 PM EST
I will be thinking of yall. I know how bad the hospital sucks...not to mention what RSV has done to our family. I know not everyone would feel this way, but you should ask for a pulse ox at home, which much come with oxygen (atleast in texas)... but it would cut out some ER visits... We LOVE having one at our house...its an easy way to know how H and H are breathing... and then if they ar bad..then we take them in!! I wish you lots of luck on kicking this RSV!!
Sat Feb 07, 01:36:00 PM EST
I am so sorry to be reading this, we hope this passes soon for all of you.
*HUGS*
Shannon
Sat Feb 07, 07:44:00 PM EST
Keeping you in our thoughts and prayers!
Sat Feb 07, 10:22:00 PM EST
You are right, no need to justify negativity. Dealing with our children's special needs just plain sucks sometimes. I have to agree. Thankfully, like you, I'm mostly optimistic.
RSV sucks double. I hope the girls have a fast recovery.
Sat Feb 07, 11:47:00 PM EST
I hope no one is pressuring you to try to be positive about things that are, clearly, negative! I don't think that would help! It is totally okay to call things what they are. Sucky! This is a lot for anyone to take, even someone of your prodigious grace and strength. We'll be praying for you from NJ. --Kate
Sun Feb 08, 07:58:00 AM EST
I'm so sorry you're going through this AGAIN. It is a reality check for me that it will be some time before S&E will be in the clear anytime soon when illness strikes.
As you read in my rant, micro-prematurity SUCKS. You do not have to worry about sounding negative to those of us who understand. You are an amazing mom, and you hate to see your children go through this...we all do, and we hope to see Holland healthy and home soon!
Sun Feb 08, 12:12:00 PM EST
Welllll, I have a lot of health problems myself, sometimes you must throw yourself a pity party and then you kinda get rejuvinated and realize you still have to fight it just as hard, but, I've found over the years, sometimes it really is okay to feel sorry for yourself for a little while. Most people say the standard platitudes of "keep positive" well some days, your get up and go has done got up and went. Thinking of you and the gals. Praying Holland gets lots of relief
Sun Feb 08, 04:01:00 PM EST