So, Holland had a great night. Her sats dipped into the high 80's a couple of times while she was sleeping, but she recovered quickly and spent most of the night between 90 and 92. During the day she is back up around 96 and was officially discharged this morning!
Poor Eden on the other hand, had a very rough night. I went home from the hospital last night to shower, leaving my mom and dad with Holland. When I got home, Eden was in a pretty rough state. She was moaning and whimpering, had a fever, and was doing a weird grunting thing when she was breathing. She hadn't eaten or drank anything since earlier that morning. I tried to give her Tylenol and she spit it all out, held her breath, and took several minutes to calm back down. She was coughing continuously, with a cough that sounded like she was dying. Seriously.
So, we finally broke down and decided to take Eden to the ER. Upon arrival, she was satting 95, but as soon as she got the least bit upset or aggravated she began coughing and her sats dropped into the low 80s. She also showed moderate ketones in her urine, suggesting that she was dehydrated. With MUCH drama, they did a chest xray, and started an IV. The xray showed "extensive infiltration" on both sides, in other words, pneumonia. She was admitted, and we finally made it to her room, across the hall from Holland, at around 2am. John and I finally made it to bed sometime after 4.
Today we put Eden on a nasal cannula for oxygen. She screamed and fought and tried repeatedly to pull it out. I had to hold her down. I am SO TIRED of holding my kids down so people can hurt them. I know it's necessary, but I still hate it. It goes against every fiber of my being. I want to cuddle them and comfort them and make them laugh. I don't want to hold them down so they can be hurt. I hate that part of being a mom.
Even so, through it all, the WORST possible was the news we got when Eden was weighed yesterday. It brings me to tears to talk about it, and even just writing this I want to bawl. 17 pounds 11 ounces. That's at least two pounds lost. I can't believe it. I feel so defeated. It took us almost a year to gain those pounds.
26 comments:
Dear, Dear John, Billie, Holland and Eden,
Our hearts go out to you as you go through this present ordeal. At least now you can all be together in one place. Our prayers are for God to give you all strength, patience and, most of all, health. Billie, believe it or not, sometimes I miss those children's videos of Sesame Street and Little Bear (like when my kids are blasting Lincoln Park). You will not be stuck watching Blues Clues forever. Love to you all, Jill & Mark
I've been lurking on your site for a while, loving the photos and stories of your beautiful girls. I'm so so sorry to hear they are so sick, and my heart goes out to all of you -- my best wishes for their quick and full recovery.
Blessings.
Billie,
I have been checking to see how the girls are each day and was so saddened to hear that now Eden is so sick. I can't even begin to imagine how exhausted you must be. After my daughters RSV/pneumonia and gastro illness (all in 2 weeks) she had lost 3lbs, I thought she would never get it back as she had all her feeding problems and was difficult to get to eat. When she came home and began to feel better she ate non-stop she would cry to get in her highchair to eat (she normally cried when we put her in it) and lived in my food pantry eating anything she could get her hands on (she ate broccoli!!). Hopefully as the girls begin to feel better their appitites will improve and they will find enjoyment in food. Even with them being ill they continue to be beautiful girls and always in their trendy wardrobe. Soon enough this will be looked back as a horrible dream and you can have both the girls back at home.
Angi
(mom to Elizabeth,aka busy-lizzy)
Oh Billie, I am sending you strength here. You somehow find the courage to get through every situation and you will this one too! You just have to remember that this is a minor set back and that they will be okay, you will and they will be okay. Thinking of you daily...Allison
Dear Billie,
I am also so sorry to hear you all have had such a difficult time the last few weeks! You and John are wonderful parents and, though I know these times are so hard, you will all get through this. Holland, Eden, John and You are in my prayers. Wish I could do something. Appreciate your updates.
Love to you all,
Brenda V.
Billie,
I am so sad to hear you are in the hospital with Eden now. I really, really feel for you all. I have been thinking about you everyday and praying that things turn around. The girls are still soooooo
beautiful even when they are so sick. I know how frustrated you are with the feeding and when they get sick it just sets everything back. That is the life with our children. They take a step forward and then they take two steps back. They know what they need to do though, they put all of their energy into healing. When they are better they will get it back and then some. Stay positive and keep your head up! We love and we will keep all of you in our prayers.
Hi Holland and Eden,
Get better soon so I can come over and play. It is getting nice out and we will be on summer vacation soon!
Love Miss Marley
Dear John, Billie, Eden and Holland:
My name is Rachel, and I am a nursing student in Boston, MA. I have been following your site for a couple of months now, and I truly look forward to the updates almost every day.
I volunteer in a level III NICU in Boston, and I hope to become a NICU nurse sometime in the near future.
While I do not have my own children and cannot imagine the undying love you feel for Eden and Holland, I do know the feeling of looking into a baby's eyes and falling in love. Words cannot describe how sad it is for me to hold a sick child in my arms. So, I cannot imagine how you and John must feel about Eden and Holland. I am so sorry that they are sick right now, but from what I've read on your blog they seem very strong and resilient. I can only imagine that they get those admirable qualities from their mom and dad. Like many others on the blog have said, I have faith that things will get better even though it's hard to see the "light at the end of the tunnel" right now. However, it's okay to be sad and let your feelings out too. It more than stinks that this is going on, and you're more than justified in being a little extra cranky. Maybe treat yourself to something you love, even if it's a quick coffee or manicure. You'll only be able to give the best to your girls if you take care of yourself, but I know you know that. Give the girls big hugs and kisses for me (even though I don't them). Sometimes I swear I make the baby's in the NICU have an A&B attack because I kiss them so much :) Thinking of you always and praying that the girl's SATs stay up and that Eden regains her weight ASAP!
I'm doing Walk America for the March of Dimes in Boston at the end of the month for all of the babies that have come into my life. Holland and Eden will be at the top of my prayer list...
Love and hugs (and sorry for the long post),
Rachel
I'm so sorry that you're going through all of this. Right now it probably feels unbearable just like it did years ago when you were in the NICU...but you got through that and you will get through this too. The weight that Eden lost will come back on once she's feeling better and eating and drinking again. Some of those two pounds are most certainly from being dehydrated. Think about how we are when we're feeling sick, we lose weight too but it comes back on pretty quickly once we're feeling better.
I'm the mom of a preemie too and I know about that drive we have to get our babies to grow and gain weight. Everytime my little guy goes for his RSV shot and I put him on that scale I hold my breath because I take his growth (or lack thereof) to heart. I want him to be big and strong like his peers. I want him to catch up and be as close to 'normal' as possible. I want him to eat and sometimes I catch myself obsessing about it. I don't have a solution for this problem ;)...I just know where you're coming from so don't feel that you're alone.
Sarah in Canada
Billie,
My heart literally breaks for you. I cannot imagine how exhausted and defeated you feel. I wish I could help in some way, I hope you know that there are so many of us who are keeping your entire family in our thoughts and prayers.
I was sad to hear about Eden's weight loss, I know that it was heartbreaking for you. I am so sorry that your beautiful girls have been through so much, it seems entirely unfair!
Sending lots of hugs your way.
Billie,
Hon, I am so very, very sorry. I am WITH you on holding babies down for procedures. My friends with healthy kiddos are traumatized by standard immunizations. While of course part of me is sympathetic when they talk about this, part of me wants to kick something--- clearly they never witnessed a pediatric ROP opthamology exam!-- and that's just the beginning of all the things we've had to assist in with Elise.
Please remember: you are seriously exhausted right now--- physically and emotionally. Try not to look in to the future too much--- everything looks awful because things are very challenging right now and you feel like hell, as I would imagine does John.
You are a WONDERFUL mom. Your girls are BEYOND blessed to have you and John for their parents. Hang in there.
Thinking of you...
We Luv U Guys. Send Zippo our way. Liz
You guys are an amazing family! I know how difficult it is to have one twin at home and the other in the hospital, but I can only imagine how devasting it would be to have them both admitted. Your blog has helped so many families with preemies, and hopefully our prayers and thoughts will help you.
Stay Strong,
Vickie
Hope you get both girls home soon. It must be tough having Eden sick right after Holland. Good luck with Team Holland and Eden. My Dad, my cousin, and one of my friends were preemies. My friend still has effects from her prematurity (She has CP and is in a wheelchair) and she is working extra hard to finish her degree in education. It will take her longer than most as she can only take a few courses a term but she will get there. I wonder what Holland and Eden will be doing some 20 years from now. Whatever they choose to do, they will make a positive difference in their little piece of the world. It would be a good thing if research could protect babies from developing these complications.
Well, getting Holland home is certainly the answer to a lot of prayers. Well done Holly! I am so very sorry that Eden is now so sick, and I can imagine how exhausted and discouraged you and John must be too. Hang in there! I'm praying hard for Holland to continue a good recovery, and for Eden to respond well to treatment, to go home soon, and regain some weight fast!
May God give you all a peaceful night and a better day tomorrow,
tripleblessings
Billie/John - we never meant for Ben to get home before your kids! We are thinking about you guys and hope that Eden makes it out soon. Glad to here Holland go "released"! Hang in there. We've been thru pneumonia like 7 times with Ben and hate to think of somoene else having to deal with it. All we can do is hope you get home soon. We're sorry and have you first in our prayers.
Hang in there!
Dave and Shannon & Ben & Kiera
Dear Billie (and John),
I am so sorry you are going through all of this. There is nothing I can think to say that would remotely make you feel better. I just wanted to let you know you are in my thoughts, and I pray you are home and the girls are well soon.
You have done a great job with Holland and Eden and have served as such an inspiration and a place for information and support for me and so many other micropreemie moms. Your story helped enable me to survive the NICU days and gave me a first hand glimpse of "the good, the bad, and the ugly" I will face with micropreemie twins. I know things are hard now, but never forget what a great mother you are and what a great virtual friend. Thank you.
Billie and John,
My heart was breaking for you as I read your post this morning. I was so hoping that Holland was halfway out the hospital door and that Eden had weathered things just fine.... We've got all of our fingers crossed (and toes, and legs, and arms and anything else I can imagine crossing) that the girls get better really soon and that, once they are home, they realize how much better a home-cooked meal is (relative to yucky hospital food). Meanwhile, you have our thoughts, and prayers, and everything for a full and quick recovery.
Dearest Billie and John,
Again, I am lost for words. I was crying at the fact that poor Eden is now in hospital (let alone all your other dramas with tiredness and weight...). My thoughts, like so many others, are with you. I read your blog almost daily as I thoroughly enjoy your writing for its rawness and honesty..... here's hoping you will soon be looking back on it and thinking it was so long ago. Someone up there must think you and your husband are strong (like we know you are down here).
Love Jodi
xxxx
Hey Billie,
Thinking of you! Things gotta get better soon, right?!?! Can I bring you anything? Lunch? Coffee? Ice cream?
Amy
Billie and John---I think of you and the girls everyday. I am SOOOO sorry that you all are going through this right now. My heart, thoughts and prayers are with you.
Love you!
Sara S-M
just sending you a little love and sunshine from cali.
lisa
Try not to get too upset about the weight. My son had a stomach virus at the beginning of March, and lost 2 pounds, he is almost 2 and weighs 19 lbs, he got under 17 with that. He gained it right back, as soon as he was better, he ate like a pig, which is very unsual for him.
Last week, he spent 6 days in the hospital, and lost weight, but it has come back again within the week because his appetite (which is very small also) returned.
And I understand about the taking of blood and stuff. My son had a spinal tap AND a catheter in the ER last week, and it was awful. I left the room. And all the switching of IV's and blood taking all week in the hospital, it is hideous to watch.
Good luck! And I hope both girls will be home with you soon.
It is not easy being in the hospital. Poor girls, poor you.
Hey B, I just wanted you to know I collected $106 at bowling tonight for March of Dimes!
Oh Billie, I am so sorry. How disheartening for you. That little lady better eat like a horse once she is better! She has a lot of making up to do.
Sending you lots of love. And a glass of wine
xx
The picture of the girls napping together is BEYOND adorable! I thought I was lucky just getting pics of my daughter (2.5 yrs) holding my son (5 mo.)...but you...you are SO lucky to get them napping together. SO cute!
Kathy
SLC
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