Tuesday, July 21, 2009

Dr. Appointment Tomorrow and Straight Up Cuteness

It's a rough life!


Not the camera again!
aWe LOVE this outfit! Thanks Alyssa!


A noteworthy moment, Hope in carseat, not screaming her face off!

I could seriously gaze at this adorable face all day long...oh wait I do! Your turn! :-)

Hope is SEVEN weeks old and is still doing great. She is doing well with the Prevacid and the reflux is minimal these days though getting her to take the medication is pure torture. She is on the solutab because the liquid is so expensive and it is tough to dissolve it and make sure she gets the whole dose, not to mention she hates it. (advice welcome)

Her skin is still doing great. She has a few marks on her thighs from her diaper rubbing, from what I am seeing, when she does experience some repeated friction or skin trauma she just gets tiny little sores, I never actually see them "blister" just little sores like the size of this "o" or smaller. I had tried using a different brand diaper that we were given, but it seems we need to stick with the Pampers Sensitive or Swaddler and cloth diapers.

The biggest source of stress for me this week is her well baby visit tomorrow. She will be getting her first set of immunizations (please no bashing here, I am doing what is best for her. Children with EB are more susceptible to infection because they always have open wounds somewhere. After consulting all the experts I could find on the issue, this is the decision we made for Hope. So no vaccine debate needed or allowed) Anyway, I am nervous for her. I am typically a big baby about this stuff but with her I am finding myself way more protective. I am praying that the trauma from holding her leg and administering the injection does not cause any blistering to her little legs and that she bounces back quickly after the shots.

I cannot tell you all enough how much your prayers and encouraging messages mean to me. I have a tendency to get a little frustrated and overcome by worry. You all have been great at helping me keep it all in perspective. Thank you for walking this journey with us! Please keep up the prayers!

33 comments:

shan said...

So cute! About the Prevacid, when Marie was on the solutabs we got a pill crusher from the pharmacy and then were able to suspend it in a syringe with water (somehow that helped). Because Hope is so little could you crush it and then mix it with 4oz of formula or something to disguise what Mommy is up to?

Praying she continues to do well!

Holly said...

She is adorable!!! I love her outfits!!! Cadence is on a 1/4 tab of Prevacid twice a day. What our GI doctor told us to do is break the tab in 4 pieces, use about 1 ml of cold water, hold your finger over the hole in syringe, add the water, then drop the tablet in, place the plunger in, then turn right side up and push all the air out of the syringe, then turn it downward again, and gently tap the contents into the tip of the syringe and give it that way in the way back of the mouth. That is what seemed to work for us when she was little. Now that she is almost 8 months old we are just giving her the tablet to dissolve in her mouth. Please feel free to contact me if you have any questions. My email is TheMovielady@aol.com or you can leave a comment on my blog!! I hope that Hope's visit goes well tomorrow!

Ronda said...

Follow your instincts, and get those immunizations! You are the best advocate for your baby! I hope the appointment goes well and I'm praying for little to no sores from the shots.

kim_brough said...

I'm a nurse and we use the solutabs a lot (to put down feeding tubes, etc) and I HATE IT!! Like you said, it never dissolves the entire way and we end up clogging the tubes with it. Ugh! What I have found works for me is to mix it up well the hottest water I can find and make sure it dissolves all the way. I then finish my assessment or talk to the pt(I work w/ adults) until it cools enough to where I can give it to them.

Hope it helps!

Sheryl said...

thanks for sharing the pictures. she is adorable - just in case you didn't know.

can't imagine anyone would have the audacity to bash your choices for your children!! you do what is right for hope and don't think twice.

asking God right now to administer those shots Himself with care that only He can give. asking that He gives you that true peace!!

love you.

Angela said...

I've been lurking on your blog for quite sometime and of course praying for your family, but I've never left a comment. But since you asked for suggestions...here you go.

Not sure how you're administering the Prevacid, but I wouldn't recommend crushing the solutab since you might crush the enteric-coated granules. They have a special coating that allows them to survive the acidic environment of the stomach and make it into the small intestine where the medication is then absorbed into the bloodstream. Crushing the solutab can make the medication less effective, and also makes it taste bitter.

We used the Prevacid syringe for awhile placing the tablet into syringe and then drawing up 3-4mL of water, allowing the tablet to dissolve and letting the bulk of the granules settle into the tip of the syringe before squirting it slowly into his mouth. Once our son took all of that we drew up another 2-3mL of water to rinse the syringe and get as much of the granules as possible into him.

Other things I have tried is holding the tablet (or half a tablet...not sure what Hope's dosage is) in his cheek with my finger until it dissolved and then allowing him to drink a little water from a bottle to wash it down. We've also dissolved it on a spoon with water when he was able to be spoon fed. Now that he is 10mos we just pop the tablet into his mouth and let it dissolve on it's own.

Hope that helps. Prevacid has worked wonders at controlling our son's silent reflux. So much better than the Zantac we originally started with.

Sara said...

My daughter did fine with her immunizations. Though her's were spread out because of the risk of infection from the injection. She had well visits monthly and they figured out a shot schedule that way. She was much more severe than Hope is at this age, so I don't think its done that way in all EB babies. I am sure the nurse will INSIST on putting on a band aid. So I'd bring what ever it is you use for her blisters/wounds when you need to wrap them and use that in place of the band aid. Also no vigorous rubbing of the skin before the injection. Just a gentle rubbing of the alcohol pad will be fine. If they rub too hard it could break the skin and cause more of a chance for infection. If the nurse gives you a hard time about it demand that the doctor administer the shots or at least have him/her explain to the nurse WHY it needs to be done this way for Hope. I have found that some nurses say they understand about EB, but when it comes to things like this, they "forget" and insist it has to be done a certain way. (no offense to any nurses reading this- I just have had bad luck when it come to nurses and modifying things for my daughter w/ EB)

bri said...

she is PRECIOUS!

I have that sweet outfit for our baby bird also. I love it but she has now grown out of the NB one we have! *sigh*

asplashofsunshine said...

Phew, I can sleep better tonight now that i have seen Hope's pictures. Haaaaa! She is soooo adorable! It is wonderful to hear how well she is doing too. Thanks for my Hope fix tonight. :)

Mom to 2 boys +? said...

When my baby took to solutabs, I just broke them up into little pieces and stuck them down in his cheek. I never could get the syringe thing to work. He was only 5 or 6 weeks old at the time and didn't have any problems with it. By the way, thanks for the term "heaven day" - for the last 18 mos I've been trying to think of a good name for that day and heaven day is perfect!
Kara

Michelle said...

Kristy, my heart goes out to you! It is already stressful to get our babies shots without the added stresses you are feeling and dealing with. You WILL be in my prayers tomorrow and I just pray the Lord gives you His peace and lines out every detail for your visit. Much love, Michelle

Mary Ellen said...

Prayers are on your way for tomorrow!

Inkling said...

Ah, I know how hard it is to get little ones to take their meds for reflux. Our little guy has GERD, and would spit up his med (generic for Prevacid) that cost us a fortune. So now he's on a lesser one that doesnt' do as great of a job, but it's cheaper and he doesn't spit it out.

And for vaccines, I just had to go through that myself with our little guy (we delayed for six months for health reasons), and even though he doesn't have EB, I know how my heart just hurt and struggled with fear and worry over that. We deliberated too, and made a decision that so many people around us thought we were crazy to make. But then again, they think we're crazy that our baby still sleeps in his cradle in our room after six months. Whenever I get flack from others about decisions I have to make as a mommy, I just remember what one lady told me. She said that nobody would love this baby outside of God like I do, and that my mommy heart would always do its best to be wise and make good choices. So instead of letting all the flack get me down, I remember that and feel so much better.

Anyway, I hope that encourages you even a tiny bit. It sounds like you got some good advice from experienced folks about how to deal with the tablets. I will pray that it works for Hope.

Merrilee said...

Sorry about the diaper issues! I cloth diaper, and if she's having sensitive spots on her thighs if you decide to cloth diaper get turned and topstiched ones, not ones with serged edges. The serged edging can cause the same irritation as disposables. Feel free to email me if you have any questions about cloth diapers! merrilee @ dilleydally.com (no spaces)

our family said...

Beautiful pictures. I would be jealous that you get to stare at that sweet face all day long, except I have my own little cutie to stare at all day and (sometimes) all night. She has me up checking blogs at 4:30 am! Anyway T will be praying for peace for you as Hope gets her shopts tomorrow (uh, today). She is such a miracle so glad to hear that she is healthy and strong in spite of her diagnosis. You (and God) must be taking great care of her.
Hug and Prayers
Tachel in PA

Lexie said...

hi---I follow your blog from time to time and you and your family are on my daily prayer list, even though you don't know me. But, I do have a suggestion for the medicine...something we learned from the children's hospital when we were there last.

Get the hottest water you can to dissolve the tab, then get a bottle nipple. Get Hope to start sucking on the nipple, then syringe in the medicine into the nipple. Most of the time, babies will take it like that and you won't have to worry about squirting it into their cheeks. Works for me....and mine is a breastfeed baby but he still takes the nipple for the meds.

Good luck with the appt.

Heather said...

My son has severe reflux, and my friend taught me an awesome trick. Get a baby spoon and put about two drops of water on it. Put the pill on it and let it dissolve for a couple of minutes. Then just slide it right into her mouth. Works like a charm and they get all the medicine!
She is adorable!

Jessica mommy to Alex/ RTS said...

Alex is also on the prevacid tab. The difference....He has a feeding tube, all his meds go in there and he doesnt know it. Maybe dissolve it in 1 oz of juice, and she could drink it?
Our GI doctor says he trusts the tab more than the liquid. Sometimes the liquid isnt as strong as it says it is, sepending on who mixed it at the pharmacy, in case that makes you feel a little better about the tab.

Rebecca said...

Still the little beauty! I love that outfit too.

Big praises for no car-seat screaming. I think we've all white-knuckled it a time or two with a screaming baby in the car! I am glad you're going with your mommy instincts when it comes to the shots & doing what is best for Hope. You shouldn't even need to explain yourself. Praying that things go well at the Doctor's visit.

Language Arts Lady said...

I have been a lurking reader for awhile... Not sure if I have ever commented or not, but I have been praying for Hope and for your entire family...

I just wanted to say "Thank you" for getting your daughter immunized. I am a teacher, and I had all my immunizations, but I am immuniocompromised/immuniosupressed. Since the immunizations don't last forever (and aren't meant to), I am protected only while my students are... and since more and more parents are opting out, this is a scary thing for kids and adults who *can't* get them.

As a teacher, I understand that each parent wants to do what's best for their child, and I support it. I think it's a great idea to do a modified schedule of vaccinations, but to not get them entirely? That's not fair to anyone. Yes, I understand that many parents fear autism... but it doesn't mean your child won't get it! The studies show NO LINK at all, just a terrible coicindence in timing. No, I don't think that vaccinations are the best thing ever, but they're important.

So, I say, GREAT JOB with Hope! If anyone says anything about your choice, say, "Thank you for your opinion, but I choose to PREVENT my daughter's death from an easily prevented disease."

Coach's Wife said...

Love Love Love the pictures of Hope! Well and the boys when you show them too. (Dont want to leave them out! :)) I agree with the other people who say that you are Hope's biggest advocate. Do Not let them do anything you don't feel is best for Hope, or make you feel like you don't know what you are talking about. Because only a mother knows her children best! It looks like you and your husband are doing an amazing job though, you dont need me telling you that. I'm still praying for peace for your family so you can enjoy everything going on. By the way, Isaac birthday celebration was beautiful. So glad Hope got to be there this year!

ATALW said...

I could just eat her up!! [Not literally though!!!]

Dana said...

I work for an inpatient hospital pharmacy and we compound a Prevacid liquid by dissolving the contents of the capsules. You might ask your doctor if this is an option or if it might be less expensive for you.

I am praying for you today!
Dana

Devin said...

First things first: Oh my goodness is she the cutest thing ever!

Ok, since that is out of the way: I love the new blog header! It looks great!

I will be praying for you all today. Shots traumatize me as well, but it is necessary....blech....I will pray that everything goes very smoothly and recovery is quick and painless (for you too! I always cry harder than my kids at shots!)

Shelley said...

She is so cute! Both of my sons had acid reflux and neither of them could or would hold down Prevacid or Zantac. So my doctor gave me a med called AXID. It has a great bubble gum favor and both of my kids took it really well. They took it once a day and it really helped the reflux unlike the others meds. At a year old they both were able to come off the med. Just thought this might help.

Emily said...

Thank you so much for posting your question about the Prevacid Solutabs!! My little Elise just started them yesterday (after Axid stopped helping). Our pediatrician said to dissolve the whole 15mg tablet in 2-3ml of water in a spoon and then draw it up in a syringe, making sure to get all of the little granules.

Well, I tried that last night. It worked all except for the giving her half part. It's impossible to know if I've given her half of the granules since they don't come out consistently. Per what some other folks have said here, I'm going to call and ask the pediatrician if I can split the tablet in half before dissolving to give her a more consistent dose.

And I'm going to have the follow-up comments emailed to me so I can see any other good advice!

Christa @ Quintooples said...

HOT HOT HOT water. That's the only thing that will dissolve them all the way. Of course, then you have to WAIT for it too cool.

They are a PAIN! But, if they are helping Hope....YEAY!!! Prevacid was a gift from Heaven for Delaney. :)

Shannon said...

We had solutabs too, and didnt have the Prevacid syringe. What I found worked bvest was cutting the end off one of those syringes that come in the Motrin or Advil boxes, so the opening was bigger and didnt clog. Then I would puch the pill in the syringe, kinda crushing it a bit with the plunger, I would use hot water, adn only use about a ML or so (We found the less we had to get in the better) Then put it right in the back of her cheek and squirt. Once you have got it in quickly blow in her face...it causes a natural swallow reflex. Finally put a tiny bit more water in and swish out the extra beads, and give her that.

It does get better. By about 3 months my son was taking it like a champ.

Also, the "beads" of medicine never fully dissolve, and you dont want them to. They are time release, and so dissolve slowly.

Hope this helps!

Kristi in Colorado said...

Hi there! You don't know me, but I have been reading your blog for a couple of months now. I am a Mom to two girls, 2 and 9, in Colorado. Both of my kiddos had reflux. My second, Izabella's, was really bad. We tried Zantac with no luck and then switched to Axid and it worked WONDERS. She took it willingly (it was a mint flavored syrup), it was reasonably priced and was her miracle drug. Have you asked your pediatrician if you can switch and try something else? Anyway, I think your family is precious and I am praying for you all everyday. =) Thanks for sharing your life with all of us!

Kristi

jayfersgirl said...

I've been lurking for a while but had to comment...
You do what you know is best for your daughter! We personally have chosen to be very selective with vaccines and delayed the ones we've gotten...but we are not dealing with the issues you are. Every parent is doing their research and doing what they honestly believe is best for their child...and no one can or should criticize that, even if they completely disagree with the decision. It is for each of us to decide what to do for our own children.
You are doing an amazing job, and I'm certainly glad Hope has you as parents:)

Shelby said...

I LOVE the polka dot outfit! She is just precious!

Anonymous said...

I always dissolved the solutab and then put it in with 1 ounce of milk, right before feeding another bottle of the "rest" of that feeding.
I knew if my girl was hungry, she would eat the 1 ounce completely and then I wouldn't have to worry that she didn't get the whole thing.
Just a suggestion!

Dianna in Louisiana said...

Your daughter is beautiful........

My now six-year old girl had TERRIBLE reflux. Using the Prevacid capsules was MUCH easier than the solutabs. The beads of the capsule are the same as the beads in the solutabs. (FYI my daugter may have been a bit older and was always pretty high for weight) The only way we could get her to take it was to mix it with a tiny bit of apple sauce and feed it to her using the nipple part of a bottle while she was sleeping (AKA "dream feeding). You'll have to open the nipple so the apple sauce and medicine will get through.

I'm convinced that it worked much better if we gave it to her at least an hour before and an hour after nursing.

FYI--- Parent-2-Parent.org is an AWESOME resource for parents of babies/kids who have reflux.

Good Luck!