My sweet baby's blue fingersI finally have some good pictures of Gracie's new teeth (thanks to my mom). She has 3 front teeth, 3 bottom teeth and two molars on the bottom!! 8 teeth in all and I'm sure she is working on 4 more since all my babies have 12 teeth by the age of one. She has been non-stop teething. Every doctor that we see comments on her teeth. It probably doesn't seem like a baby that small should have that many teeth!
Well, we are now just over a week from going in to the hospital and I am starting to feel the anxiety and sadness. I have high hopes for this second surgery. I hope it makes her feel better, however, it is heartbreaking to think your baby is going to be cut open AGAIN. But I just have to remind myself that this is what is keeping her ALIVE. How grateful I am for modern medicine that has given me 10 1/2 months with my sweet Gracie.
Gracie has seen better days. Since our 'eventful' night at Primary Children's, she has still been struggling with a cough, has been throwing up A LOT and has a HORRIBLE, HORRIBLE, HORRIBLE diaper rash. She starts to cry the minute I put her on the changing table. In the middle of the night last night, she had FIVE messy diapers. I have tried everything I can think of and it is just not getting better. (prescription butt paste, Calmoseptine cream, Polysporin, A&D ointment and Culterelle capsules that I empty into a syringe and give through her tube) The paperwork that was sent to me about her heart cath says that she cannot have a cough or diaper rash for the procedure. I have left a message for my cardiologist to see what he thinks of this situation. I don't know if they will postpone surgery for this or not.
Gracie has only been so-so with her bottle drinking lately. She still LOVES water and can tell when we have milk in the bottle and she bats it away. She drinks at least a little something by mouth everyday but we are a long way off of her taking in all of her calories without her tube.
Gracie had another Synagis shot this week for RSV prevention and it looks like she has not gained any weight. She is still 14 pounds. Since it is the beginning of the year and out out of pocket maximums start again, I got a call from my insurance company wanting payment for the Synagis shot before they sent it out. My portion was $250 which is 10%. One shot costs $2500!!!! Is that just insane?
I along with my son Max, have been suffering from a bad case of strep throat! I hope it clears up in time for me to get some things done in preparation for our hospital stay.
21 comments:
oh goodness! Her little fingers! I remember Mia's fingers looking like that- it so sad!
The Synagis shots are crazy expensive... we should have invented synagis i guess. I am so sorry about the anxiety of your next couple weeks- sending them into the OR is as difficult the second, third, forth,fifth time as it is the first. We will be praying that her procedure goes beautifully!!
As for the diaper rash- Mia had crazy diaper rash right after we came home from the hosptial. I got a few suggestions on my blog about it: http://mcdonaldfam.blogspot.com/2008/12/steroid-baby.html
I think what finally did it for us- was I never used one single wipe. I washed her off with warm water and then used the blow dryer on a warm setting. I was also the poop police- I changed her right after. I did use a prescription ointment that one of my cardiologist invented called, "happy heiny" I can email you he recipe.
She is so stinkin cute with her little teeth!
Okay 1st of all her sweet little fingers look perfect to me. Just like any other heart baby. Next Wahoo on the teeth, they are so CUTE! I love it. Then the diaper rash Kylie had one in the hospital after her norwood, they used a paste stuff, But I have miracle stuff. It is by Coloplast called "Thick Moisture Barrier Paste" Works miracles put it on Kylie and the next diaper change she was better. So worth the $16 a bottle price I found it at the RX in McKay Dee hospital. You should try it. It comes in a big tube so it should last forever. Sorry about the strept throat, That is my sickness that I do not like to deal with. I had a miserable case last year and couldn't even move. YUCK! Oh and the RSV shots. CRAZY they better work for that price. I know the bigger they get the more expensive they get.
Sorry about the insurance thing. We got so lucky Kylie was born in September had her norwood in Sep, Then her glenn on the 13th of Jan, but our insurance year goes July-July I am so glad it seems somthing worked out for the best.
About being stressed and anxiety. I was really bad before Kylie's Glenn. Honesly it seems like a bad dream now and we are only 3 weeks post op. I had to talk to the doctor and get on "Happy" pills to help I asked everyone if I was "normal" feeling this way. I was. So just so you know we all have felt this was. Just know we are praying for you, and they get better so FAST after the Glenn, Kylie was extubated the next day and only in the PICU for 2days. Oh little Gracie is going to do great.
Kylie also started throwing up 2 weeks before her Glenn, the ped put her on zofram and she got better so fast. Don't know if any of this helps, but I am thinking about you guys.
Lots of Prayers your way.
Chrissie
LOVE THOSE CHOMPERS!!! What a little doll. We're thinking of you this week as you get ready for the Glenn. Seriously stinks and is NOT fun but we're hoping for a quick recovery. I'm still so thrilled that Gracie is drinking (even if it's not enough).. look how amazing from just a few months ago!! ;)
I love the baby blue fingers.. Owen has them still. I don't think it ever really goes away.
Andrea
Michele,
So much going on! I pray for your sake that they do not postpone. I think the waiting is far worse than the healing.
On the sore bum--McKay had 3-4 messy diapers an hour FOR A MONTH after his Glenn. His ped finally put him on a probiotic--acidophilis (you can get this over the counter.I just broke one capsule, three times a day into McKay's milk) and an antibiotic--Flagyl. You have to give them at least two to three hours apart so they don't kill each other off, but it seemed to do the trick. If he ever goes that route again I think I'll try the acidophilis first, on my own, before I even try to get an antibiotic prescription. It seemed to work so welll. In a week he was a new man. Of course after so many diapers, his poor bum was absolutely raw, like Gracie's, until we used "Mr. Smith's" diaper rash ointment. (You can get it at the hospital pharmacy--we originally got samples from his ped) I think you just have to find the paste with the right chemistry for their skin.
My husband still comments that the rash seemed far more painful for him than his surgery--these poor kids!!
The Glenn recovery is fast --we were in on Tuesday and home on Saturday with only 2 days in ICU. The nurses told me aside from the headaches, it's the easiest and least scary of the three surgeries. I know that doesn't help much when it's your baby, but I just kept telling myself "He needs this." Of course their little blue lips, fingers and toes all point to that as well.
We feel such love for you. I'm looking forward to finally giving you a huge hug next week.
xoxo,
Mindi and McKay
You poor girl having strep throat. I hate strep! I can't imagine getting up 5 times in the night to change diapers when I have strep. You need a break! Gracie looks so grown up with all those teeth! We'll keep you in our prayers!
How cute is she with all of those teeth! I can't believe you're struggling with all this WHILE you are sick. I hope you start feeling better soon!!! The surgery is getting so close - I hope her cough and diaper rash will heal quickly. You are such an inspiration to me Michele!!! Good luck with this next week.
Nat
I am so sorry that you have been sick - that has to be hard to deal with! And poor little Gracie having a cough too. We are praying for her to get better so everything can go as planned. She is such a little cutie!!
For the diaper rash: "homemade butt paste".. Equal parts cornstarch, liquid maalox (yes, i'm serious) and desitin. The ONLY time it did not make a difference after the first application (and i"ve had 4 kids) I called the pediatrician! Mix it up in a ziploc bag, it's a big goopy mess but it'll help!
Precious photos...blue fingers and all. I love that little sweety so much. She goes through so much everyday and this last time I was with her I got a sense of the HUGE spirit that she has and how courageously she is fighting this battle. I can only imagine your anxiety as you face this next surgery, but look at all the people who love you guys and are sincerely praying and fasting for you. Angels will surround her and comfort her and help heal her quickly. Just you watch! Hang in there.
Love ya
Leslie
Hello again,
I read all of your posts about Gracie even though I usually don't comment anymore. However, I want you to know that she is always in my prayers and I continue to put her name in the temple each week when I go to work there. I will add your name to the list this week and pray that you will get over the strep quickly.
May God bless you both.
Love, Grammy
I'm a friend of Sydney's. She is on one of your links. If you cook flour on broil, and stir it once or twice. Then let cool. Put it on her bum really good all day when you change her and it will go away in about a day. It really works but the flour cooking makes your house stink a little. Good luck with everything. Amie
Miss Gracie has grown up so much (maybe not in weight) but she is looking more and more beautiful every single day! Michele, you truly do have gorgeous children!!!
I will be praying for you as this next week and huge next step approaches...for peace and comfort for your heart and further healing and hope for Gracie's future!
I love y'all & think of you so often, friend.
Love to you~ Rebecca
Hey Guys, I haven't commented in forever.... But I check up often. You know gator is king of c-diff- well that nasty stuff also eats the skin off his booty. I wish it where okay to take pictures to show you because it is sooooooo sore right now. But I have tried it all... The home aid stuff, spent 80.oo in store bought stuff and tried the hospital care from wound control. Yeah.. we have bleeding booty issues... Anyway after very exclusive testing I found what works for me doesn't always work for the next baby...
What we do is put cavalon on all of the open wounds. they say it doesn't sting but does... then we put on the colostomy powder and then the thickest hospital grade Baza you can get your little hands on.. I think it is in a purple tube. We use water wipes and you don't wipe the stuff off. You just scrape off the poopies.. I don't want to make you crazy, but I would take a stool sample into your ped if you can. Gator's C-diff symptoms include projectile vomiting, blow out after blow out and a low grade to a fever... You could always call and check it... My thoughts are with you. If she does have the stuff. it is really contageous. so i can offer some tips if you like... This is what we almost lost Gator to when he went into shock from dehydration so I might be freakin out for no reason.... From my heart.
Her teeth are so cute. Do you use whitening toothpaste, or white strips on them? ;)
She is one special girl who seems to be on this earth to teach all us "less special" people something. We pray for our little Gracie everyday. We will start praying 3x a day during this next week! Here we go again :( Hang on tight, we are in for another ride.
I hope you're feeling better and able to get some things ready! Your little Gracie is beautiful. I've been following your blog since day 1 and from what I can tell, Gracie resembles Max. What a cute little family you have!
This is McKenzie. My son used to get really bad diaper rashes and I his doctor told me to try Lotrimin for athletes food. You put a small amount on the rash and then cover it with vaseline to keep out moisture. His rashes would be to the point they would bleed. This would clear them up in about 1-2 days. We tried everything perscriptions, over the counter, so this might work for you.
I'm just another mom who thinks she might have some answers...even though you have many good suggestions. I was told to alternate diapers from creams & ointments to powders-preferably corn starch. Sometimes all the creams and ointments don't let the skin have a chance to breath. So, at one diaper change do a cream that seems to help, but the next diaper change use powder only! Just maybe this can help!
Howz the rash now? Is it c-diff? We pray she will get well for surgery! Poor baby, I am soo sorry she has been so miserable.
Just to make you feel better about the synagis our portion for the first was $1000! Very Insane.
xoxoxox for Gracie.
I was thinking about Gracie today. Is the surgery still set for Tuesday? We will be praying for her as always!!!!
Just thinking of your family and Gracie with her surgery coming up...praying for her!!! Hugs to you!
Love,
Katie & Maddie
We will keep her in our prayers. I hope they do not delay her surgery. It seems like she is ready for it.
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