(Updated 9/29/2013)
This post (and the ones that will follow) are long overdue. Almost a year over due in fact. But first lets back up and recap a little first in case you are just finding this blog and you are looking for guidance (or support).
Most importantly - we did this under the blessing of our Ped (who slightly disagreed with our GI, whom we too did not agree with), and Addison was monitored every few weeks for weight gain. (Plus I may or may not have weighed her every few days at home.)
For our first time readers - Addison is a twin, born at 26 weeks weighing 1lb 10ozs. She spent 153 days in the NICU before coming home to us with a G-tube (and Nissin Fundo). With the exception of only TWO horrifically failed attempts in the NICU, Addison had only ever been fed by a feeding tube. In the NICU it was decided that due to terrible reflux, a Cleft Palate and a very uncoordinated suck/swallow reflex she was unsafe to feed orally. From the day we brought her home we spent countless days in therapy and working on oral stimulation and slowly working towards oral feedings.
She came home from the NICU being fed overnight as well as every few hours during the day. After a lot of research and consulting with our Ped, we made the very conscious choice to begin decreasing her overnight feeds by adding 5mls to each of her day time feeds and decreasing her overnight feed by 20mls a night. We increased those day time feeds by 5mls every 3 days as she tolerated it. If she retched a lot or seemed uncomfortable we'd hold steady and try again a few days later.
After her first birthday and her Cleft Palate repair, we condensed her feeds again, down to 3 a day at 8 ounces each. It was at this same time that her GI decided we should change her to Pediasure to one with a higher calorie content per ounce, and began working even more aggressively towards eating orally. Once she was able to take more then one bite at a any given time she had another MBS (Modified Barium Swallow) to make sure she was safe to feed and not aspirating, that came back all clear and it seemed the only thing standing in our way was the fact that Addison was just simply not hungry.
On Oct 25 2012, we had an appointment with our Ped to address Addison's sudden and dramatic weight gain since changing her formula. We talked in depth about Addison's progress, she was now eating up to an ounce of purees - twice a day if I was lucky, and how she always did best in the morning after not eating all night. It was then that our Ped said, based on all the information I was giving him that we needed to consider that developmentally we were slowly closing in on the window of opportunity where Addison would learn to eat. It was time to push her hard.
Mind you we had moved to a new state just a few weeks before this and had no OT to work with us on this initially. (We were still commuting to see our old Ped though.) Our OT from our old home was great, and helped us so much. It's with her help that we made it that far.. but what now? I was flying solo. Thankfully I had a lot of resources from our first OT that would get me started and I was still researching more. One blog that I found incredibly helpful was The Crunchy and the Smooth. I must have read her blog a million times over, pulling ideas and insight and taking notes.
I came home from the Ped that first day, had a pep talk with Addison and vowed we weren't going back. I tube fed her before bed, just like always, but the next morning - I offered her a breakfast puree and Pediasure in a cup this time. She ate a little... like just a few bites and drank enough just to wet her mouth. I tried to feed her every hour on the hour, even if it was just a few bites. I counted every ounce and every calorie.
One IVF, Two Embryos, Two Heartbeats, Two Micro Preemies turned Toddlers...Faith, Courage and everything in between.
Showing posts with label Tube Weening. Show all posts
Showing posts with label Tube Weening. Show all posts
Thursday, May 9, 2013
Saturday, February 2, 2013
Unsung Heroes
I cannot take all the credit for Addison's accomplishments. The fact is, there was an entire village of people who helped us achieve this. Those people are the unsung heroes.
Her OT (and PT) who worked with her very diligently for a year and a half, who taught me the skills and tricks I needed to help her eat (walk, talk, etc). What to watch for and how to calm her when she was unsure and would panic. They were the team that I pinged ideas off of and took the most suggestions from. It literally broke my heart in two when we decided to move, knowing I'd leave behind two people who played a major role in Addison's success. I still email both her OT & PT from our old "home" often and update them on Addison's progress. Her new OT here is pretty awesome too!
Our Ped, who lets face it, can be blunt and focused. He is the one who gave me my back bone when we brought Blake home from the NICU and faced challenged with Addison's NICU care. He is also the one who finally said "Enough is enough, she can eat, she needs to eat," and got us to take that leap of faith back in October. If not for him, we might not be where we are now. Jake and I both value our Ped so much that we are willing to make the drive back to MD just to remain in his care. It's not always convenient and I miss being 5 minutes from his office, but it's worth it.
Last but certainly not least, our family and friends who prayed for us, cheered for us and picked me up when I felt like I hit rock bottom. Always pushing us forward and giving me the faith to press on. One of my dearest friends has probably learned more about G-Tubes then she ever needed to know, was one of my biggest supporters throughout this process and probably one of the very few - who understood even though she wasn't expeirencing these situations first hand. I called her when I was breaking down, and thought we were making the wrong call, shouldn't I just go back to tube feeding her, all of that crazy stuff that you think of in the thick of things.
In fact I remember calling her one day when Addison was being particularly trying with me and admitting (shamefully) my frustrations and how I just in that moment wished I wasn't the only one who "could" feed her. (Bare in mind at the time OT had suggested against letting anyone else feed her until Addison was more confident or the person had time to observe and learn her behavior. Plus with Jake's busy schedule I usually am the only one around when it's meal time.) I just needed a break and was at my wits end, but giving up would = failure for Addison. "S" an EBFer (exclusive breastfeeder) said to me then "Think of it this way, it's sort of like BFing. You are the only one who can do it. You spend hours everyday nurturing and providing nutrition. There are times when it is so frustrating (she was speaking from her own experience here with trying to correct confusion in her son and transition him to EBFing) but you just keep going. In the end its a bond that only the two of you will share, something you will look back on and realize how far you have come. Something no one else will have with her."
This hit home for me on many levels... One because "S" was right. This was a journey that Addison and I would share together and accomplish so many things. A bond that only her and I had formed, and would look back on together. And the other, because I longed to BF - planned on it - and then it didn't work out. I mourned that missed opportunity. Until that moment. This was so similar in so many ways. Not the same, but similar. I cannot tell you how many times I played that conversation in my head, over and over. To remind myself that that I was committed. I wanted this for her, for us. It helped to surround myself with people who believed in all of it. Believed in us. And people who respected the transition we were making and how diligent and careful we had to proceed.
The grandparents and friends who cried tears of joy when I sent pictures of our "first" Thanksgiving where Addison chewed on a turkey leg and ate sweet potatoes and pumpkin pie. The great friends who offered suggestions on what food contained high calories or how to increase calories. Or just listened to me whine when things were tough. And cheered when things were going great. Those who know what a miracle this all is.
It's because of each and every one of you reading this right now. I hope that you all will share our joy and recognize the role you each played in our success. Thank you from the bottom of our hearts.
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Her OT (and PT) who worked with her very diligently for a year and a half, who taught me the skills and tricks I needed to help her eat (walk, talk, etc). What to watch for and how to calm her when she was unsure and would panic. They were the team that I pinged ideas off of and took the most suggestions from. It literally broke my heart in two when we decided to move, knowing I'd leave behind two people who played a major role in Addison's success. I still email both her OT & PT from our old "home" often and update them on Addison's progress. Her new OT here is pretty awesome too!
Our Ped, who lets face it, can be blunt and focused. He is the one who gave me my back bone when we brought Blake home from the NICU and faced challenged with Addison's NICU care. He is also the one who finally said "Enough is enough, she can eat, she needs to eat," and got us to take that leap of faith back in October. If not for him, we might not be where we are now. Jake and I both value our Ped so much that we are willing to make the drive back to MD just to remain in his care. It's not always convenient and I miss being 5 minutes from his office, but it's worth it.
Last but certainly not least, our family and friends who prayed for us, cheered for us and picked me up when I felt like I hit rock bottom. Always pushing us forward and giving me the faith to press on. One of my dearest friends has probably learned more about G-Tubes then she ever needed to know, was one of my biggest supporters throughout this process and probably one of the very few - who understood even though she wasn't expeirencing these situations first hand. I called her when I was breaking down, and thought we were making the wrong call, shouldn't I just go back to tube feeding her, all of that crazy stuff that you think of in the thick of things.
In fact I remember calling her one day when Addison was being particularly trying with me and admitting (shamefully) my frustrations and how I just in that moment wished I wasn't the only one who "could" feed her. (Bare in mind at the time OT had suggested against letting anyone else feed her until Addison was more confident or the person had time to observe and learn her behavior. Plus with Jake's busy schedule I usually am the only one around when it's meal time.) I just needed a break and was at my wits end, but giving up would = failure for Addison. "S" an EBFer (exclusive breastfeeder) said to me then "Think of it this way, it's sort of like BFing. You are the only one who can do it. You spend hours everyday nurturing and providing nutrition. There are times when it is so frustrating (she was speaking from her own experience here with trying to correct confusion in her son and transition him to EBFing) but you just keep going. In the end its a bond that only the two of you will share, something you will look back on and realize how far you have come. Something no one else will have with her."
This hit home for me on many levels... One because "S" was right. This was a journey that Addison and I would share together and accomplish so many things. A bond that only her and I had formed, and would look back on together. And the other, because I longed to BF - planned on it - and then it didn't work out. I mourned that missed opportunity. Until that moment. This was so similar in so many ways. Not the same, but similar. I cannot tell you how many times I played that conversation in my head, over and over. To remind myself that that I was committed. I wanted this for her, for us. It helped to surround myself with people who believed in all of it. Believed in us. And people who respected the transition we were making and how diligent and careful we had to proceed.
The grandparents and friends who cried tears of joy when I sent pictures of our "first" Thanksgiving where Addison chewed on a turkey leg and ate sweet potatoes and pumpkin pie. The great friends who offered suggestions on what food contained high calories or how to increase calories. Or just listened to me whine when things were tough. And cheered when things were going great. Those who know what a miracle this all is.
It's because of each and every one of you reading this right now. I hope that you all will share our joy and recognize the role you each played in our success. Thank you from the bottom of our hearts.
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Thursday, January 31, 2013
No More Feeding Tube
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| Addison thinks it's no big deal that her tube is finally gone! |
That's it. It's so final. And was so "brief". I don't know what I expected to happen when GI decided it was time. It just...happened.
On Day 95 of tube weaning and 75 days after her last tube feeding, Jan. 30 2013 she is officially without a feeding tube.
We had her regularly scheduled weight check/follow up regarding out tube weaning. Our regular GI was out so we saw her colleague she reviewed everything with me. Once. Twice. And then I heard those words that I longed to hear "I think we've reached the point where we can safely remove it." She asked if I wanted to do the honor, or allow her to. I've changed it a million times, but today I couldn't bring myself to take it out. Instead I let the doc do it. I held Addison's hand, explained how proud we were of her and what this all meant. And then in an instant her lifeline, the safety net, that one thing that kept her alive and well for so long...was gone. In it's place a tiny whole (smaller then the diameter of a pencil) with a band-aid covering it-remained.
We did it. SHE did it. All that hard work. The months of stress, crying over thrown food and wishing she would just take ONE bite, suddenly was done. A chapter closed. My little itty bitty once 1lb 12oz baby girl who has had a feeding tube her entire life, is no longer feeding tube dependent and she is THRIVING. She weighed in today at 22lbs 12ozs (naked baby weight) and 32 1/2 inches tall. (25th percentile).
I've stared at her belly a million times. Admiring that flat surface when her Mini-One button once stuck out. And I had to laugh just thinking, exactly how long would it be until I go to change her clothes or a diaper and "forget" that it's supposed to be gone and panic that her button is no longer there... ya know, for just that split second. I am still trying to wrap my head around all of this. Proud doesn't even begin to describe how I feel about this accomplishment.
I totally wasn't expecting to walk in to this appointment and have her tube removed. I thought they would be hesitant and resistant, but the doctor was anything BUT that. After reviewing everything with me, she too felt confident that we could easily do this with no issues. As she pointed out, I still have several more options and resources to get added calories into her diet should the need arise.
I think sometimes it becomes hard for a doctor to look past what's on paper or in a textbook and actually consider the whole situation. That's what happened today. The GI doctor looked at Addison as a whole, and I was once again reminded just how lucky we are that she doesn't have many of the issues that other tube fed kids are faced with. That's another huge factor in why things have likely gone so well. Addison doesn't aspirate, her reflux has been well managed since her Nissin surgery, she doesn't gag or choke on her food, and most importantly both developmentally and psychically there is NO reason why she can't eat. A blessing for sure.
Time will tell if the site closes on its own. We are hoping to avoid having it surgically closed, but it could require that. Today so far I've seen minimal draining even when she eats or drinks, so I am hopeful that we might just dodge that bullet.
Another preemie/feeding tube momma asked me "If I thought six months ago that she would be tube free by her 2nd birthday." My short answer - No. I long ago accepted the fact that "one day" we might be able to remove it, made peace that she might need her feeding tube for the rest of her life (even if it was just for small supplements to her oral intake), not because I doubted her, but because it was my defense is many ways. Six months ago she was not ready, six months ago we were lucky if she ate more then 4 ounces in one day and took more then one sip of milk. Six months ago she hated food, she hated me when I tried to make her eat.
What changed? I don't know. Time-perhaps. Her OT always told me one day it would just click. And I prayed, we all did. And then it just happened. It took some nudging and a few leaps of faith but it happened. And we have not looked back.
Just because her feeding tube is gone, does not mean her struggles with eating are over. The hard part is though. I assure you we still have days where she doesn't want to eat this or that, and would rather graze all day. Or days where she really tests my patience when it comes to peaking her interest to eat.Which really truly could also just simply be a toddler thing, honestly. But even with all of that, she still gets enough nutrition and maintains/gains weight. The next thing we'll have to begin working on now that we've crossed the first bridge, is letting other people feed her (or just watch her eat, if she is self feeding)...getting past some of the behaviors and teaching others how to respond to those behaviors. And getting her to eat BETTER in public places or crowds. (This is yet another thing that she does well sometimes and then other times gets overwhelmed and distracted.)
I do believe it will all come in due time. For now I am taking a moment to step back, thank God for this amazing blessing and rejoicing.
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| After her appt, we enjoyed a celebratory breakfast before heading home. Here she is enjoying a sausage link, after already inhaling half a pancake and downing milk. |
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| And here she is with the evidence of a celebratory lunch - Frosty, Fries and Nuggets. |
Tonight we took her to one of our favorite places, Red Lobster, for dinner. (Thanks to our last gift card from Christmas, from Jake's cousin!) She enjoyed half a cheddar biscit, some fries and believe it or not she ate a whole filet of broiled fish! I was shocked. But she just kept going to town. She amazes my every.single.day. For desert I bought her (and Blake) a heart shaped cookie that says "You Rock" on it, but they were both too sleepy to even enjoy it. That's ok, I saved them for tomorrow and we will just keep right on celebrating this HUGE accomplishment.
Also its been just 24 short hours and her stoma looks as if it has closed up! (HOW AWESOME IS THIS? Yet another of God's many miracles.) She had relativity no drainage from the site since it was removed, with the exception of once today when I changed her diaper and noticed her onesie was a little damp (like not even enough that her shirt on top of the onesie was wet!) We'll see how this continues to progress, but it's looking promising!
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Also its been just 24 short hours and her stoma looks as if it has closed up! (HOW AWESOME IS THIS? Yet another of God's many miracles.) She had relativity no drainage from the site since it was removed, with the exception of once today when I changed her diaper and noticed her onesie was a little damp (like not even enough that her shirt on top of the onesie was wet!) We'll see how this continues to progress, but it's looking promising!
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Tuesday, January 15, 2013
60 Days - 2 whole months
Without a single tube feeding! (And she is gaining weight! 23.1 lbs is the official weight.) And this last week she has suddenly started eating one waffle AND... AND an entire Greek yogurt for breakfast (it used to be one or the other.) Her appetite is growing for sure, and I am seeing her eating a lot more.
We couldn't be more proud. And to celebrate I made her a double layer chocolate cake! And I am also excited because for the first time ::knocks on wood:: neither kiddo had a reaction to the icing. The plain.white.vanilla.icing. Lol.
Today ( 1/15/13) is the official date for this "versary" but we celebrated on Sunday while Daddy was home for work, so he wouldn't miss out on the celebration.
We couldn't be more proud. And to celebrate I made her a double layer chocolate cake! And I am also excited because for the first time ::knocks on wood:: neither kiddo had a reaction to the icing. The plain.white.vanilla.icing. Lol.
Today ( 1/15/13) is the official date for this "versary" but we celebrated on Sunday while Daddy was home for work, so he wouldn't miss out on the celebration.
Wednesday, January 2, 2013
Weight Check...
Day 48 without a tube feeding...36 days since her last Ped visit/weight check and.............drumroll................
SHE WEIGHS 23.1 LBS!!!!!!! SHE HAS GAINED A HALF A POUND SINCE 11/27!!!!!!!!
The Ped was beaming from ear to ear and told her "Sweet girl you are simply doing amazing, and I am so proud of how far you have come. You are really doing great!"
This is huge... HUGE. Our 1 lb 10oz baby girl who has been tube fed most of her life, hasn't had a tube feeding in 48 days and has gained a half a pound. Amazing miracle I tell ya!
I have been so stressed and so worried about it, and once again Addison has proven that she is defying the odds. I am simply amazed. Hard to believe that in exactly 42 days (not that I am counting) these amazing twins will be 2!!!!!!!!
And now for your viewing pleasure I leave you with a picture of the princess herself, driving in her Cozy Coupe this morning... Which by the way, she now informs me "Things do, back later" and drives off across the living room.
SHE WEIGHS 23.1 LBS!!!!!!! SHE HAS GAINED A HALF A POUND SINCE 11/27!!!!!!!!
The Ped was beaming from ear to ear and told her "Sweet girl you are simply doing amazing, and I am so proud of how far you have come. You are really doing great!"
This is huge... HUGE. Our 1 lb 10oz baby girl who has been tube fed most of her life, hasn't had a tube feeding in 48 days and has gained a half a pound. Amazing miracle I tell ya!
I have been so stressed and so worried about it, and once again Addison has proven that she is defying the odds. I am simply amazed. Hard to believe that in exactly 42 days (not that I am counting) these amazing twins will be 2!!!!!!!!
And now for your viewing pleasure I leave you with a picture of the princess herself, driving in her Cozy Coupe this morning... Which by the way, she now informs me "Things do, back later" and drives off across the living room.
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| My Cozy Princess. Can you stand the cuteness? |
Thursday, December 27, 2012
The truth about healthcare...
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| My rockstar tubie! |
Nope this is not a political debate, this is simply the cold hard truth about "our" (aka this family of four's) healthcare.
When Addison and Blake were born, it did not take long for the healthcare bills to pile up. I am positive that by their 3rd week of life I got a EOB from the insurance company showing me what it cost for their first two weeks of life and what we would owe. I felt sick. For the doctors ALONE it was a few hundred THOUSAND, and then we'd have to pay a HUGE chunk of that. Would it be worth every single red penny they could drain from us... absolutely. But could we afford it? Absolutely not. We did not get pregnant thinking we'd have two preemies and large medical bills. There was no way to prepare for this. In total we spent 105 days in the NICU x 2 ... PLUS another 48 days for Addison (in which she underwent surgery). Can you imagine what that would cost?
I don't know how it came up in conversation with the hospital social worker but she referred me to the billing office who was able to help me with paper work for Medical Assistance. I didn't think we would qualify and I was ashamed. Ashamed that I was taking something from people who really needed it. I was in denial that we were one of those families who DID need it. I was mad that it even came to this. PISSED. And shocked when I got a call that we had been approved and they would be covering EVERYTHING that our primary insurance did not cover from the time they were born forward. Relieved because there was help. We weren't going to drown in medical expenses.
Because Addison and Blake were born below a certain birth weight, they automatically qualified for benefits. It had nothing to do with anything else. Simply a weight. We also later learned that in the State of Maryland, Addison would be qualified automatically until age 21 under "Rare Expensive Medical" because of her Cleft Palate. It would cover every surgery she may need for her Cleft Palate, and all of her feeding tube needs, etc... as long as we lived in Maryland. There are not many ( if any) other states that carry that specific program, so she no longer has that coverage.
Now, keep in mind the hubs works FULL TIME... a lot of time 80+ hours a week. He pays over $500 a month for medical benefits for his family, through his employer. Yes, I am grateful for that we have insurance. BUT... and this is a big one. We found out when we moved that.............HIS POLICY DOES NOT COVER ADDISON'S PEDIASURE, AND THAT THE AMOUNT WE'D PAY OOP after they pay for HER FEEDING TUBE SUPPLIES, is in short astronomical.
The representative at the insurance company informed me that according to his policy guidelines set forth by his employer, they do not deem it medically necessary. So the fact that up until we started tube weaning, her team of doctors deemed it medically necessary and made it very clear that there was only one thing that I could put through her feeding tube that would provide her with LIFE SUSTAINING NUTRITION, a certain formula, did not make a darn bit of difference. And it wasn't a matter of "we don't cover this, but we do cover this" it was plain and simple "WE DO NOT COVER ANY NUTRITIONAL FORMULA WHAT SO EVER, in accordance with the employer's provisions." And when I asked about an appeal, said that it was pretty straight forward and highly unlikely that it would be overturned.
So basically my husband busts his behind for this company day in and day out, pays a high premium for insurance and they won't cover "basic medical needs" for his daughter. But if Addison were back on Medical Assistance it would be covered in full. Something seem wrong with this picture? And let me tell you at $9.00 for a six pack of Pediasure (generic brand) that would only last 2 days... it adds up quickly. THIS IS THE SAME INSURANCE COMPANY THAT WILL NOT COVER BLOOD WORK FOR A RARE GENETIC DISORDER THAT THEY ARE TRYING TO RULE OUT FOR ADDISON BECAUSE THERE IS ONLY ONE LAB THAT CURRENTLY PERFORMS THE TEST.
Did you know that we are not alone? There are hundreds, thousands, of other families out there who are in this same situation. Someone in their family has a feeding tube and their private insurance will not cover the associated expenses. News flash the pump, the bags, syringes, replacement buttons...none of them benefit anyone if there is no "safe food" (aka formula or Pediasure) to put through them. And this isn't just an issue for feeding tube kids either. Kids with medically diagnosed weight gain issues (from prematurity, or other GI issues) need high calorie and pricey meal replacements daily to survive. Private insurance doesn't cover it for them either.
The silver lining in this is that we are moving away from tube feeding, but there are many families who cannot. We are hopeful that in the coming days/weeks/months we will be transitioning to WCM (whole cows milk) and cutting out Pediasure all together, but reality is that we might have to keep one serving of Pediasure a day on board for awhile. One is better then three, and we'll do what we have to do. But I cannot bear to imagine the financial impact this would have had on our family if Addison were feeding tube dependent for a much longer period of time.
Why am I sharing this?
Because I think it's worth talking about and something that needs to be brought to the for front. It's the dirty little secret so to speak. This isn't the only flaw with our medical system either, but its one that hits home for us. And I am not pointing fingers either. I also do not claim to know the perfect solution. But I wanted my voice...Addison's voice, to be heard.
Wednesday, December 26, 2012
Product Rave & Feeding Update
Disclaimer: I have in no way been paid or compensated by the following companies for my views on their products. This is simply a non-paid review on items I have bought, used and love.
I think everyone has that "one" thing they cannot live without, that serves many purposes and can be used for a long period of time. I am am sure I have several... But tonight as I was feeding Addison her snack, I realized I one that is officially a "must have" for us.
This :
When she told me that I admit I felt bad that I hadn't considered it before that, but I vowed that I'd try her booster chair instead and see if that worked and have now made it "our" goal that we will have one meal at the dinning room table every day and the rest I will allow her and Blake to eat at the picnic table. Once we have this eating thing really under control and we aren't so focused on weight, I'll worry about moving them back into the kitchen. I will say that I am very grateful that Blake is so adaptable with this whole thing and doesn't seem phased by relocation of meals, I cannot imagine battling two of them every day (but at this point most days I don't even feel like I am battling one anymore GASP).
I think everyone has that "one" thing they cannot live without, that serves many purposes and can be used for a long period of time. I am am sure I have several... But tonight as I was feeding Addison her snack, I realized I one that is officially a "must have" for us.
This :
I got mine at Target when they were less then 6 months old. At the time we used it for tummy time, to give them a visual to distract them. We used it for tracking by moving it from side to side and letting them follow it with there eyes and head movement. Then for reaching and swatting at the lady bug and bee. They enjoyed it for many months as they learned to make facial expressions and entertaining themselves. And the most recent HUGE thing we've used it for... a feeding tool. You read that right. I use it with Addison to help her focus and distract her all at the same time. She is engaged with the baby in the mirror and I can encourage her "Show the Addison how you chew", "Show Addison how you drink". And she is proud to watch herself. If she refuses bites, I use it as a reward. "Tell Addison bye bye", "Take a bite and we'll see Addison".
And now here is your long awaited update. We are almost 2 months into this journey and a month and a week of that is tube feeding free. Knock on wood, for the most part, I have not seen any major regression which can be common. I do notice she has a day here or there were she isn't as interested in eating, but I can usually find a way to encourage her and have still get her to eat. On those days it also seems like she drinks a lot more which is ok, especially because on those days I give her more Pediasure to help compensate for those calories that she isn't eating. Overall her liquid intake is sky rocketing, we celebrated this by buying her big girl cups and firmly committing to straws. She now has cups just like Blake, except in pink and purple and butterflies. Yes I am excited about frilly cups, do not judge me lol, I've waited a long time for a really "sippy" cup for this kid.
We started with a "Honey Bear" training cup...
(and then tried every other one imaginable), settled on a water bottle (open mouth top) and then I noticed that she was getting good lip closer and making sucking noises so we tried the Playtex Straw Trainer Cup
which we happened to have left over from Blake (and I may or may not have bought a pink and purple in those too). And are now settled on the Playtex Insulated Straw Cups
These ones I like them for at home and/or on days when I feel like I've got to really watch how much she is taking in. The insulated ones are great for on the go because it keeps things cold longer, which is a must for Addison.
I have also been encouraging both Addison and Blake to fill their cups with water (from the fridge door dispenser), I've found that it makes them feel "grown up" and also makes them want to drink more water because they think they are getting away with something.
My biggest struggle with Addison right now, is the fact that a lot of her meals are not at the dinning room table. I had set out to be a strict enforcer of all meals at the table, and we did great right up until we started really hardcore weaning her. Then it became a battle. I got better results if she were curled up with me on the couch watching cartoons, or if I was doing some crazy stunt like singing or playing with said mirror, and now even if she is sitting at their new picnic table they got for Christmas. I hadn't given it much thought to "why" this was a problem until I mentioned it to her OT. Then it clicked. She could be associating her high chair with a negative experience (that experience being the grueling feeding sessions that yielded little results while her feeding pump ran, and may have felt like we were trying to force feed or over feed her, or just the fact that that is where ALL her tube feedings happened). For some kids it's no big deal but for a "feeding issue" kid every.little.thing. makes a difference.
When she told me that I admit I felt bad that I hadn't considered it before that, but I vowed that I'd try her booster chair instead and see if that worked and have now made it "our" goal that we will have one meal at the dinning room table every day and the rest I will allow her and Blake to eat at the picnic table. Once we have this eating thing really under control and we aren't so focused on weight, I'll worry about moving them back into the kitchen. I will say that I am very grateful that Blake is so adaptable with this whole thing and doesn't seem phased by relocation of meals, I cannot imagine battling two of them every day (but at this point most days I don't even feel like I am battling one anymore GASP).
So for now our main goals for Addison are: 1.) Gain weight and have G-tube removed. 2.) Eat one meal a day in her big girl booster at the dinning room table.
Saturday, December 15, 2012
Santa Comes to Town...
First and most important.......
ADDISON HAS BEEN TUBE FEEDING FREE FOR 30 DAYS!
30 days ago I tube fed my budding toddler through her feeding tube for the very last time. Today I did a weight check and she is weighing 22.2 lbs, which is steady from a week ago. Which is also a huge accomplishment because as I mentioned, weight loss is typical with tube weaning and they won't take her tube out until she gains weight for 3 months in a row. So holding steady is actually on the right track. I am hoping that this means the weight loss is over and that we will be in the gain column soon.
To celebrateI thought "We should have cake, minus the icing because apparently my kids are allergic to cake icing." (Poor kids.) One of my preemie mom buddies suggested I let Addison and Blake help me bake a cake. And I really am thankful she suggested it because I would have thought about it later and wished that I had. But at any rate. Let me preface this with, I don't bake often, aka I do not have much on hand to bake from scratch or at a moments notice. That's ok with me though, because I am sure a box cake would be better then anything I could make, I tried that once so believe me...box cake is better. This meant a trip to the store. No biggie. I figured I could go after their nap, pick up the mix and such, come home and let them help me bake and hoped that by the time I was done Jake would be home from work to join in on the celebration.
I had talked with Jake during nap time and he indicated that he thought he wouldn't be to late, so I thought I'd check in after nap time and decide either to wait for him to get home and then run out to the store or just go before he got home and get started. After nap time he said he wouldn't be much longer, that he had just gotten to his last job. So I waited. And waited. TWO HOURS LATER, he tells me it's gonna be a while longer. (Plus an hour (+) commute home).
At this point I had found a recipe for some "butter cookies" and had everything it needed (butter, flour, baking powder, eggs, honey) so I had started that BUT the dough had to sit for a few hours in the fridge. I figured, we'll have cookies instead and play it by ear, if he gets home "soon" I'll run out. Otherwise it was time to start dinner and well...yeah. No going out at this point.
Jake finally got home. He wanted to take the dogs out for a walk first, and change his clothes and blah blah, normal "just got home from work" stuff. FINE.. I'll keep waiting. He finally comes back inside, and I head out. I am not gone TEN MINUTES... DO YOU HEAR ME TEN STINKING MINUTES... I have been home ALL DAY LONG with the kiddos... ALL.DAY.LONG. And Jake calls. What could he possibly want? I bet we are out of milk or something. Ohhhhhh no. He is excited. "What Jake, what?" I ask.
I am standing in the store, deciding on cake mix... WHAT DOES HE WANT.
Jake: "OMG... SANTA JUST CAME TO THE HOUSE."
Me: "What?"
Jake: "Santa. He just came through with a parade of fire trucks and brought goody bags to the door for the babies. I heard him outside, they were beeping the horns and stuff. SANTA WAS HERE."
And it's official. I hate Jake. I leave for TEN MINUTES. And Santa comes. Jake didn't get a single picture (he claims he didn't have a chance to lol). Santa drives through in this big ol' parade of fire trucks and gives my kids candy...WITHOUT SENDING ME A MEMO FIRST and I miss the whole thing.
Did I mention I was home ALL.FREAKING.DAY????????
So what did I do when I got home?
1.) I told Jake he could not discuss it. Instead I listened to Blake "Momma, SANTA.... truuuuuuuckkkkkk"
2.) I made a HUGE deal with Addison about it and told Addison, that because I am in fact the worlds best Mommy EVER, made a call to Santa to remind him (because we all know he sees you when you are sleeping and knows when you are wake, all that stuff, but is super busy) and told him I needed a visit to my house with a special treat for Addison because it as a big day for her and she was 30 days feeding tube free.
(I imagine in her head she is visioning me whispering on the phone late at night while she is asleep... "Santa, yes this is Addison's mom. Yes the one that you brought a Barbie Corvette for when she was five. Uh-huh, I am still mad about that because I wanted a Mustang NOT a Corvette. Yes Santa you can make it right. How you ask? Well as you've seen Addison has been a really good girl, and Blake has done a good job being a good boy, and well today Addison was went 30 days without a tube feeding, and I think you need to come and visit before Christmas so she knows that you KNOW. I don't care if you are busy. I expect you to arrive before bedtime." And I further imagine that she thinks, "Mommy really is boss. She even went and personally gave Santa directions to my house, and that's why she wasn't here when he got here. She must have got stuck in traffic! My mommy rocks!".... Yes I do sweet Addison. Yes I do.)
ADDISON HAS BEEN TUBE FEEDING FREE FOR 30 DAYS!
30 days ago I tube fed my budding toddler through her feeding tube for the very last time. Today I did a weight check and she is weighing 22.2 lbs, which is steady from a week ago. Which is also a huge accomplishment because as I mentioned, weight loss is typical with tube weaning and they won't take her tube out until she gains weight for 3 months in a row. So holding steady is actually on the right track. I am hoping that this means the weight loss is over and that we will be in the gain column soon.
To celebrate
I had talked with Jake during nap time and he indicated that he thought he wouldn't be to late, so I thought I'd check in after nap time and decide either to wait for him to get home and then run out to the store or just go before he got home and get started. After nap time he said he wouldn't be much longer, that he had just gotten to his last job. So I waited. And waited. TWO HOURS LATER, he tells me it's gonna be a while longer. (Plus an hour (+) commute home).
At this point I had found a recipe for some "butter cookies" and had everything it needed (butter, flour, baking powder, eggs, honey) so I had started that BUT the dough had to sit for a few hours in the fridge. I figured, we'll have cookies instead and play it by ear, if he gets home "soon" I'll run out. Otherwise it was time to start dinner and well...yeah. No going out at this point.
Jake finally got home. He wanted to take the dogs out for a walk first, and change his clothes and blah blah, normal "just got home from work" stuff. FINE.. I'll keep waiting. He finally comes back inside, and I head out. I am not gone TEN MINUTES... DO YOU HEAR ME TEN STINKING MINUTES... I have been home ALL DAY LONG with the kiddos... ALL.DAY.LONG. And Jake calls. What could he possibly want? I bet we are out of milk or something. Ohhhhhh no. He is excited. "What Jake, what?" I ask.
I am standing in the store, deciding on cake mix... WHAT DOES HE WANT.
Jake: "OMG... SANTA JUST CAME TO THE HOUSE."
Me: "What?"
Jake: "Santa. He just came through with a parade of fire trucks and brought goody bags to the door for the babies. I heard him outside, they were beeping the horns and stuff. SANTA WAS HERE."
And it's official. I hate Jake. I leave for TEN MINUTES. And Santa comes. Jake didn't get a single picture (he claims he didn't have a chance to lol). Santa drives through in this big ol' parade of fire trucks and gives my kids candy...WITHOUT SENDING ME A MEMO FIRST and I miss the whole thing.
Did I mention I was home ALL.FREAKING.DAY????????
So what did I do when I got home?
1.) I told Jake he could not discuss it. Instead I listened to Blake "Momma, SANTA.... truuuuuuuckkkkkk"
2.) I made a HUGE deal with Addison about it and told Addison, that because I am in fact the worlds best Mommy EVER, made a call to Santa to remind him (because we all know he sees you when you are sleeping and knows when you are wake, all that stuff, but is super busy) and told him I needed a visit to my house with a special treat for Addison because it as a big day for her and she was 30 days feeding tube free.
(I imagine in her head she is visioning me whispering on the phone late at night while she is asleep... "Santa, yes this is Addison's mom. Yes the one that you brought a Barbie Corvette for when she was five. Uh-huh, I am still mad about that because I wanted a Mustang NOT a Corvette. Yes Santa you can make it right. How you ask? Well as you've seen Addison has been a really good girl, and Blake has done a good job being a good boy, and well today Addison was went 30 days without a tube feeding, and I think you need to come and visit before Christmas so she knows that you KNOW. I don't care if you are busy. I expect you to arrive before bedtime." And I further imagine that she thinks, "Mommy really is boss. She even went and personally gave Santa directions to my house, and that's why she wasn't here when he got here. She must have got stuck in traffic! My mommy rocks!".... Yes I do sweet Addison. Yes I do.)
Sunday, December 9, 2012
Tube Weaning Update....
We had our appt with GI. According to their scale she lost 2 pounds (1. this is not uncommon when weaning from a feeding tube, but 2.) I am positive that GI's scale is so wrong. She was weighed the week before at the Ped office, and I weighed her on our home scale that same day for comparison. I also weighed her on our home scale the day of her GI appt too. She def didn't loose 2 pounds.), either way... GI's response to this was "What would you like us to do about her weight loss?" My response was, "Nothing. I won't go back to tube feeding her at this point."
I was SHOCKED when GI was "ok" with that. I really thought she would fight me on it a lot more. Instead we talked about Addison's daily diet and she offered me some other options as far as liquids that might be appealing to Addison, and things I could add to her foods to boost categories. She wanted to be sure that I understood that she needed to see Addison gain weight for three consecutive months without any intake via her G-tube, in order to give consent for it to be removed. I get that, and we are in no rush to actually (pardon the pun) pull the plug. I'd like to see Addison get through this winter/cold and flu season without a tube feeding first. (It's highly common for G-tube babies to stop eating or drinking when they get a cold etc, especially at first.) If she can make it through this without needing additional support then yes I am absolutely all for getting rid of it 100%, after all that is what we have been working so very hard towards, I am just not in a hurry. I'd hate to take it out and then see her need to have it put back in later. In other words, we just aren't there yet, but we are close.
One of the toughest things about this process has been calorie tracking and watching her liquid intake vs. wet diapers. For starters, she certainly isn't taking in the volume of liquid she was through her G-tube (again this is normal) so I am not used to the difference in her output. She still has wet diapers within what is considered normal (every 6 hours or less), but certainly not as wet or as frequent as they once were. And to be honest, it makes me crazy and wonder if she is getting "enough" (she is, I've asked). She "drinks" less then what is "ideal" so to compensate we are offering her purees... (Did you know?...purees/yogurt/other "wet" food count as liquid intake (ounce for ounce) and help prevent dehydration.) I worried myself sick until GI and the Ped both reassured me on this. This also means that we are going to have to work extra hard at increasing what she drinks as she moves away from puree food.
I've noticed that we are falling into a pattern where she eats REALLY REALLY REALLY well for a day or two and then just sort of picks a little for a day or so. Also, normal toddler behavior, but golly doesn't she understand and know that it's important that she packs on the pounds right now? The truth...she doesn't understand. In fact, she is just beginning to understand and learn what hunger feels like and how to satisfy her hunger. I can say this though... she is beginning to behave more like what I'd expect a toddler to behave like as far as food goes, or should I say, she behaves more like Blake. (Ya know my kid who eats anything and everything...Yeah now he is becoming picky, which seems to be age appropriate.)
She and I are learning together. It's our new adventure. Moving away from one (the tube) into another (the world of "real" food and "real" meals.) Not going to lie. Some of these days can be frustrating, but the reward that comes with it is incredible. She is learning to communicate her needs with me, she's gained three important new words "Milk", "Affle" (waffle) and "O-grrr" (yogurt). Which in turn means she can request what she'd like to eat, and therefor she is more willing to eat what she is given, a win for both of us.
But this has been no cake walk that is for sure. I cannot tell you the lengths I go through to get her to eat sometimes. Or how many times I have had to distract her with my cell phone and then thought "Just how much food is on my phone? Should I weight it?" <--- Not kidding. I really have thought about it. For some time, I was the only one who could feed her orally. Why you ask?Because I am a control freak. Because, there is a method to our madness here. Because I am her primary caregiver, I know the tricks of the trade to make things happen. It's a comfort thing between her and I and it's about trust. I know how much is too much on the spoon and when to take her cup away. Yes I could teach someone else I suppose, but it's hard to cram all that into one session and expect a person to remember when they aren't doing it on a daily basis. And we were actually discouraged from doing that by her OT, initially. Until she really became comfortable with eating and could manage things on her own a little bit better, and because what worked today wouldn't necessarily work tomorrow.
That part is getting better, to the point where I can give Jake a chance to feed her and allow myself a small break. And it's actually becoming beneficial to both Addison and Jake. They have now built that trust. (For the record, he has always been able to/and would tube feed her.) He has done an amazing job learning "how to feed Addison". I am very proud of him for that. Now I can go out to the store and leave them home with Jake and know that he can safely feed her.
We are still struggling with somethings, like her eating in a public place or with a large crowd (too many distractions). But our families are also learning, when we gather around the table for dinner, how to react and to keep things as calm as can be. Eventually we'll get to a point where she'll be able to manage her distractions, for now we just limit them. No this doesn't mean we don't ever go out eat. It just means we only do it on occasion and choose places that aren't as crowded, etc. and work up to it.
I am still struggling with giving her some space to have the control she needs while meeting her calorie needs. Our goal is to keep feeding as pleasant as possible for her and let her guide us, while still thriving. It's tough, but we are doing it. I haven't yet found the "perfect" solution. She eats a lot of meals in front of the tv, and sips on her cup throughout the day vs. drinking a full cup at once. Her Nissin Fundo impacts her volume and what she can tolerate which makes it tougher too. It's for certain a work in progress, but for today... My child is eating and thriving. I am choosing to focus on that while we move forward.
Everyday that she doesn't have a tube feeding is one step closer to our goal. I look forward to not having to try and count each calorie she takes in (and try and figure out just how many calories are in each meal I cook, or having to buy prepackaged meals so I know exactly what she is getting).
Please continue to pray for our sanity, and growth at this time. And if you notice that I myself have gained weight, blame Addison. It is for her benefit that I now have to cook fattier foodsand I am way to lazy to make low calorie versions for Jake and myself nor do I have the patience.
I was SHOCKED when GI was "ok" with that. I really thought she would fight me on it a lot more. Instead we talked about Addison's daily diet and she offered me some other options as far as liquids that might be appealing to Addison, and things I could add to her foods to boost categories. She wanted to be sure that I understood that she needed to see Addison gain weight for three consecutive months without any intake via her G-tube, in order to give consent for it to be removed. I get that, and we are in no rush to actually (pardon the pun) pull the plug. I'd like to see Addison get through this winter/cold and flu season without a tube feeding first. (It's highly common for G-tube babies to stop eating or drinking when they get a cold etc, especially at first.) If she can make it through this without needing additional support then yes I am absolutely all for getting rid of it 100%, after all that is what we have been working so very hard towards, I am just not in a hurry. I'd hate to take it out and then see her need to have it put back in later. In other words, we just aren't there yet, but we are close.
One of the toughest things about this process has been calorie tracking and watching her liquid intake vs. wet diapers. For starters, she certainly isn't taking in the volume of liquid she was through her G-tube (again this is normal) so I am not used to the difference in her output. She still has wet diapers within what is considered normal (every 6 hours or less), but certainly not as wet or as frequent as they once were. And to be honest, it makes me crazy and wonder if she is getting "enough" (she is, I've asked). She "drinks" less then what is "ideal" so to compensate we are offering her purees... (Did you know?...purees/yogurt/other "wet" food count as liquid intake (ounce for ounce) and help prevent dehydration.) I worried myself sick until GI and the Ped both reassured me on this. This also means that we are going to have to work extra hard at increasing what she drinks as she moves away from puree food.
I've noticed that we are falling into a pattern where she eats REALLY REALLY REALLY well for a day or two and then just sort of picks a little for a day or so. Also, normal toddler behavior, but golly doesn't she understand and know that it's important that she packs on the pounds right now? The truth...she doesn't understand. In fact, she is just beginning to understand and learn what hunger feels like and how to satisfy her hunger. I can say this though... she is beginning to behave more like what I'd expect a toddler to behave like as far as food goes, or should I say, she behaves more like Blake. (Ya know my kid who eats anything and everything...Yeah now he is becoming picky, which seems to be age appropriate.)
She and I are learning together. It's our new adventure. Moving away from one (the tube) into another (the world of "real" food and "real" meals.) Not going to lie. Some of these days can be frustrating, but the reward that comes with it is incredible. She is learning to communicate her needs with me, she's gained three important new words "Milk", "Affle" (waffle) and "O-grrr" (yogurt). Which in turn means she can request what she'd like to eat, and therefor she is more willing to eat what she is given, a win for both of us.
But this has been no cake walk that is for sure. I cannot tell you the lengths I go through to get her to eat sometimes. Or how many times I have had to distract her with my cell phone and then thought "Just how much food is on my phone? Should I weight it?" <--- Not kidding. I really have thought about it. For some time, I was the only one who could feed her orally. Why you ask?
That part is getting better, to the point where I can give Jake a chance to feed her and allow myself a small break. And it's actually becoming beneficial to both Addison and Jake. They have now built that trust. (For the record, he has always been able to/and would tube feed her.) He has done an amazing job learning "how to feed Addison". I am very proud of him for that. Now I can go out to the store and leave them home with Jake and know that he can safely feed her.
We are still struggling with somethings, like her eating in a public place or with a large crowd (too many distractions). But our families are also learning, when we gather around the table for dinner, how to react and to keep things as calm as can be. Eventually we'll get to a point where she'll be able to manage her distractions, for now we just limit them. No this doesn't mean we don't ever go out eat. It just means we only do it on occasion and choose places that aren't as crowded, etc. and work up to it.
I am still struggling with giving her some space to have the control she needs while meeting her calorie needs. Our goal is to keep feeding as pleasant as possible for her and let her guide us, while still thriving. It's tough, but we are doing it. I haven't yet found the "perfect" solution. She eats a lot of meals in front of the tv, and sips on her cup throughout the day vs. drinking a full cup at once. Her Nissin Fundo impacts her volume and what she can tolerate which makes it tougher too. It's for certain a work in progress, but for today... My child is eating and thriving. I am choosing to focus on that while we move forward.
Everyday that she doesn't have a tube feeding is one step closer to our goal. I look forward to not having to try and count each calorie she takes in (and try and figure out just how many calories are in each meal I cook, or having to buy prepackaged meals so I know exactly what she is getting).
Please continue to pray for our sanity, and growth at this time. And if you notice that I myself have gained weight, blame Addison. It is for her benefit that I now have to cook fattier foods
Tuesday, November 27, 2012
A Special Note from Addison...
Hello to all our blog followers!
This is Addison and I wanted to share an extra special message with you all. See Mommy and I have been working extra hard on my eating. Mommy says we are doing something called "Tube Weening" where I learn to eat and not rely on my "tubie" anymore. I admit I am just a little sad about this because Tubie is my best friend and really means a lot to me. But I really wanted to be a big girl. My Pediatrician said that he really felt like it was a good time to let me try and give me a little room to grow, so Mommy promised we'd work really hard at it and told me that it was my choice. She would let me decide if I was ready to be a big girl and become an oral eater. Mommy said I shouldn't be scared and she would help me along, we would get through this together.
So we came home and she talked with Daddy and told him the news. And Daddy said he'd even help too. (I also think I remember something about a pony too). A month ago my journey to saying good-bye to Tubie began. I can best describe it as a marathon and sometimes a battle of wills. (I let Mommy think she wins them all.) But my Mommy and Daddy didn't give up. They kept trying with me. I am so excited to say as of today I have been eating and drinking enough food that I haven't needed Tubie..... FOR THE LAST 14 DAYS!!!! Yup I have went TWO WHOLE WEEKS without a tube feeding!
I saw my Pediatrician again today and he was so excited to hear the news. He checked my weight and said that I gained appropriately and was still following my curve. He gave me some new goals for me and Mommy to work on and said that as long as I stay on my growth curve and do not fall below the 10th percentile, I don't have to use Tubie. Mommy will take me back to visit again right before Christmas so I can tell him all about the progress we are making and let him know that I have achieved the goals he set forth for me. Mommy says we are officially on the path to saying "Bye Bye Tubie", just 165 days to go (maybe a little more, or less). That's right if I keep being a good girl and eat and drink by mouth (even when I am sick, which also means taking medicine by mouth) that in a little less then 6 months time Mommy and Daddy will likely get permission from my doctors to let me take Tubie out FOR GOOD!
He even told Mommy that she can call and cancel my appointment that she's been waiting a year for at the feeding clinic! The best part was Daddy got to be there today to hear the good news too. He was so proud of me that he took me out to dinner to celebrate! We meet with my GI doctor again next week for a follow up and I really hope she will be excited and proud of me too...
Can you believe it? First I got to share all the turkey and fixings on Thanksgiving with Mommy, Daddy and Blake and now I am on my way to big big things! Before you know it I'll be graduating college, walking down the aisle and starting a family of my own. Ok so Mommy says she just can't think about that part right now because she's not ready for me to be THAT grown up yet, and Daddy says no boy talk so shhh...
So long for now, I look forward to updating my loyal fans again later.
Love,
Princess Addison
This is Addison and I wanted to share an extra special message with you all. See Mommy and I have been working extra hard on my eating. Mommy says we are doing something called "Tube Weening" where I learn to eat and not rely on my "tubie" anymore. I admit I am just a little sad about this because Tubie is my best friend and really means a lot to me. But I really wanted to be a big girl. My Pediatrician said that he really felt like it was a good time to let me try and give me a little room to grow, so Mommy promised we'd work really hard at it and told me that it was my choice. She would let me decide if I was ready to be a big girl and become an oral eater. Mommy said I shouldn't be scared and she would help me along, we would get through this together.
So we came home and she talked with Daddy and told him the news. And Daddy said he'd even help too. (I also think I remember something about a pony too). A month ago my journey to saying good-bye to Tubie began. I can best describe it as a marathon and sometimes a battle of wills. (I let Mommy think she wins them all.) But my Mommy and Daddy didn't give up. They kept trying with me. I am so excited to say as of today I have been eating and drinking enough food that I haven't needed Tubie..... FOR THE LAST 14 DAYS!!!! Yup I have went TWO WHOLE WEEKS without a tube feeding!
I saw my Pediatrician again today and he was so excited to hear the news. He checked my weight and said that I gained appropriately and was still following my curve. He gave me some new goals for me and Mommy to work on and said that as long as I stay on my growth curve and do not fall below the 10th percentile, I don't have to use Tubie. Mommy will take me back to visit again right before Christmas so I can tell him all about the progress we are making and let him know that I have achieved the goals he set forth for me. Mommy says we are officially on the path to saying "Bye Bye Tubie", just 165 days to go (maybe a little more, or less). That's right if I keep being a good girl and eat and drink by mouth (even when I am sick, which also means taking medicine by mouth) that in a little less then 6 months time Mommy and Daddy will likely get permission from my doctors to let me take Tubie out FOR GOOD!
He even told Mommy that she can call and cancel my appointment that she's been waiting a year for at the feeding clinic! The best part was Daddy got to be there today to hear the good news too. He was so proud of me that he took me out to dinner to celebrate! We meet with my GI doctor again next week for a follow up and I really hope she will be excited and proud of me too...
Can you believe it? First I got to share all the turkey and fixings on Thanksgiving with Mommy, Daddy and Blake and now I am on my way to big big things! Before you know it I'll be graduating college, walking down the aisle and starting a family of my own. Ok so Mommy says she just can't think about that part right now because she's not ready for me to be THAT grown up yet, and Daddy says no boy talk so shhh...
So long for now, I look forward to updating my loyal fans again later.
Love,
Princess Addison
Thursday, November 15, 2012
On This Day...
ADDISON DRANK 10 OUNCES OF LIQUID BY MOUTH!!!!!!!
8 ounces of Pedisure, 2 ounces of water!!!
We have bought her every cup you can imagine but the end result was nothing more then a few sips totaling an ounce or less if we were lucky. So this is amazingly huge for her. Wanna know what the trick was? Letting her drink from a water bottle. So silly and simple. I would say I should have thought of this sooner but we did let her drink from them before but she just wasn't interested. I can truly say that I feel like she is finally ready to talk on this challenge. I couldn't be more proud.
Her menu today looked like this:
5.3 ounces of Peach Greek Yogurt
Snacked on Cheerios
One slice of deli turkey and a half slice of Swiss Cheese
About 5 Veggie Straws
One container of purees (Sweet Potato and Corn) thickened with Mixed Grain Cereal
3 more Veggie Straws
8 ounces of Pedisure
2 ounces of water
Keep in mind that in addition to hydration 8 ounces of Pedisure is equal to one whole meal. We've been giving her an 8 ounce bolus of Pedisure each night before bed via G-tube, but since she had already drank half of her Pedisure just before dinner and then ate fairly well, I didn't want to over feed her. We'll see how she does overnight and play it by ear from here.
This is so so very huge because all of this is forward progress towards removing her G-tube. We have a follow up with her Pedi on 11/27 and GI on Dec 7 (I think, I'll have to double check that date lol). We'll see what the Pedi says and how here weight is on the 27th and hopefully he can give us some tips on what we need to address with GI (if anything at all).
It has by far been the most challenging part of this journey so far and so many things I never thought I'd do as a parent has changed in the process. It quickly became the theory of "Whatever Works and Gets Addison Eating". We've had meals in front of the tv, because it helped her to zone out and distracted her so that she wasn't focusing on and becoming overwhelmed by eating. I've given up more control then I ever thought, because it works for her. I always thought there would have to be this progression from spoon feeding to self feeding but it quickly went from "Mommy do it" to "Addison do it". I thought she would eat this instead of that. When I say I have tried it all with her, I am not kidding. We have. Anything and everything. Hot foods, cold foods, spicy foods, salty foods, sweet foods. Ice tea, Milk, water, juice. Been there, done that, tried it all. Still a work in progess, but progress is measured in leaps and bounds around here now.
And that ladies and gentleman is what's been going on with Addison.
8 ounces of Pedisure, 2 ounces of water!!!
We have bought her every cup you can imagine but the end result was nothing more then a few sips totaling an ounce or less if we were lucky. So this is amazingly huge for her. Wanna know what the trick was? Letting her drink from a water bottle. So silly and simple. I would say I should have thought of this sooner but we did let her drink from them before but she just wasn't interested. I can truly say that I feel like she is finally ready to talk on this challenge. I couldn't be more proud.
Her menu today looked like this:
5.3 ounces of Peach Greek Yogurt
Snacked on Cheerios
One slice of deli turkey and a half slice of Swiss Cheese
About 5 Veggie Straws
One container of purees (Sweet Potato and Corn) thickened with Mixed Grain Cereal
3 more Veggie Straws
8 ounces of Pedisure
2 ounces of water
Keep in mind that in addition to hydration 8 ounces of Pedisure is equal to one whole meal. We've been giving her an 8 ounce bolus of Pedisure each night before bed via G-tube, but since she had already drank half of her Pedisure just before dinner and then ate fairly well, I didn't want to over feed her. We'll see how she does overnight and play it by ear from here.
This is so so very huge because all of this is forward progress towards removing her G-tube. We have a follow up with her Pedi on 11/27 and GI on Dec 7 (I think, I'll have to double check that date lol). We'll see what the Pedi says and how here weight is on the 27th and hopefully he can give us some tips on what we need to address with GI (if anything at all).
It has by far been the most challenging part of this journey so far and so many things I never thought I'd do as a parent has changed in the process. It quickly became the theory of "Whatever Works and Gets Addison Eating". We've had meals in front of the tv, because it helped her to zone out and distracted her so that she wasn't focusing on and becoming overwhelmed by eating. I've given up more control then I ever thought, because it works for her. I always thought there would have to be this progression from spoon feeding to self feeding but it quickly went from "Mommy do it" to "Addison do it". I thought she would eat this instead of that. When I say I have tried it all with her, I am not kidding. We have. Anything and everything. Hot foods, cold foods, spicy foods, salty foods, sweet foods. Ice tea, Milk, water, juice. Been there, done that, tried it all. Still a work in progess, but progress is measured in leaps and bounds around here now.
And that ladies and gentleman is what's been going on with Addison.
Saturday, October 27, 2012
Moving On Up....
(North that is).... That's right. We relocated, AGAIN. But this time hopefully for awhile longer. We found a cute house that has room for us to grow (and accommodate all those wonderful TODDLER must haves) just between Gettysburg and Lancaster, its absolutely perfect. We can spend our mornings eating breakfast while watching deer frolic just past our back yard and come night a calm passes over the town. Country living at its finest.
With this move has come a cost though... currently we have very limited internet access, hence the lack of blog posts. Promise you wont forget about us. Just as soon as we can find a good solution I promise we'll be back to the regular posting.
So since my last post Addison is officially off and walking aka running and she has finally started to stand up and walk from the middle of the floor. Blake is learning all sorts of new words and recently told me "Not the boss." Yes my almost two year old (HOLY COW) told me I am not the boss. I am going to have my hands full. He is also learning lots of animal sounds and can "read" picture books to me by naming animals and things. Addison is taking cues from him and using words and signs to communicate with us more and more. She recently has learned "drink" and will use it when we are working on eating and she needs a drink to help clear her mouth.
As far as eating goes...I don't want to spoil things or jinx them so lets just say we are off and running again and making some HUGE progress. We'll leave it at that for now. But after a very in depth conversation with her Ped we made some decisions and changed the game plan. We'll see how it goes and see what GI has to say in December.
At her last Ped appt he also mentioned concern about Addison's left eye drifting inward. I called her eye doctor and was told she couldn't be seen until Feb so I made a few more calls and found another doctor here in near our new place who can see her next week. Ironically enough the "new" eye doctor did her residency etc at both Mercy and UMMC where we are allllllll too familiar. It's like it was meant to be. Her office staff was amazing on the phone so we'll see how our first visit goes. Hopefully it won't be anything too serious and we can just keep an eye on it for now.
I think that's all I've got for now. Looking forward to getting some pictures uploaded at some point so you can all see those adorable faces again.
With this move has come a cost though... currently we have very limited internet access, hence the lack of blog posts. Promise you wont forget about us. Just as soon as we can find a good solution I promise we'll be back to the regular posting.
So since my last post Addison is officially off and walking aka running and she has finally started to stand up and walk from the middle of the floor. Blake is learning all sorts of new words and recently told me "Not the boss." Yes my almost two year old (HOLY COW) told me I am not the boss. I am going to have my hands full. He is also learning lots of animal sounds and can "read" picture books to me by naming animals and things. Addison is taking cues from him and using words and signs to communicate with us more and more. She recently has learned "drink" and will use it when we are working on eating and she needs a drink to help clear her mouth.
As far as eating goes...I don't want to spoil things or jinx them so lets just say we are off and running again and making some HUGE progress. We'll leave it at that for now. But after a very in depth conversation with her Ped we made some decisions and changed the game plan. We'll see how it goes and see what GI has to say in December.
At her last Ped appt he also mentioned concern about Addison's left eye drifting inward. I called her eye doctor and was told she couldn't be seen until Feb so I made a few more calls and found another doctor here in near our new place who can see her next week. Ironically enough the "new" eye doctor did her residency etc at both Mercy and UMMC where we are allllllll too familiar. It's like it was meant to be. Her office staff was amazing on the phone so we'll see how our first visit goes. Hopefully it won't be anything too serious and we can just keep an eye on it for now.
I think that's all I've got for now. Looking forward to getting some pictures uploaded at some point so you can all see those adorable faces again.
Tuesday, September 4, 2012
Good News Tuesday!
Today was Addison's routine GI check up. First of all who in their right mind schedules and appointment for a 8am? Like seriously WHAT MOM OF TWINS would do this to herself? Keep in mind I am not a morning person... AT ALL! But, I'll stop whinning be honest and say that 1) I was very lucky because Jake was off work today which meant he was able to get Addison ready, while I got myself ready, hence giving me some extra time to sleep. (Whooo!) And we decided that it would just be easier if I flew solo with Addison while he got some man time with Blake.
It was all worth it in the end because this was by far the best appointment in a long time. Her GI Doc just got herself a nice new office in a nice location (right across from the mall! But no we didn't get to shopping after the appt, but it's ok really). Anyway, the new office was very nice. Much more kid friendly and because we were the first appointment of the day, rather then waiting HOURS (yes not kidding), we were seen within the hour. And out the door long before we would have been previously.
So while we were there I had a long list of things to talk about and progress to discuss. I found out that her Upper GI Study and MBS (Modified Barium Swallow) were both NORMAL (Thank the good LORD!) We talked about volumes and calories and what Addison was "safe" to eat/drink. GI changed her Pedisure to a higher calorie count so that we can go from 4 to 3 feedings a day and still get her all the calories she needs. And we talked about what our game plan would be for her actually eating by mouth and how we would balance that to make sure she is still gaining weight and getting all her nutrients. She offered us a appetite stimulant to hopefully encourage her hungry cues and therefor make her want to eat more, more often. We'll also be talking with the Nutritionist to work on some high calorie foods to compensate for her small appetite right now. (Also keep in mind, she can only handle a certain volume because of her Nissin, so we have to be careful with that. Otherwise poor girl feels bloated and may start coughing and feeling some pressure.)
GI was so happy with all the progress she has been making and she actually said some words thatscare me we have been waiting to hear for a long time. We know we are getting close to our goal. And of course with all good news we celebrate. Addison decided she would celebrate by refusing to eat much of anything for lunch. STINKER! She was in rare form today, silly girl.
Here's a pic of her being silly at the doctor's office...
It was all worth it in the end because this was by far the best appointment in a long time. Her GI Doc just got herself a nice new office in a nice location (right across from the mall! But no we didn't get to shopping after the appt, but it's ok really). Anyway, the new office was very nice. Much more kid friendly and because we were the first appointment of the day, rather then waiting HOURS (yes not kidding), we were seen within the hour. And out the door long before we would have been previously.
So while we were there I had a long list of things to talk about and progress to discuss. I found out that her Upper GI Study and MBS (Modified Barium Swallow) were both NORMAL (Thank the good LORD!) We talked about volumes and calories and what Addison was "safe" to eat/drink. GI changed her Pedisure to a higher calorie count so that we can go from 4 to 3 feedings a day and still get her all the calories she needs. And we talked about what our game plan would be for her actually eating by mouth and how we would balance that to make sure she is still gaining weight and getting all her nutrients. She offered us a appetite stimulant to hopefully encourage her hungry cues and therefor make her want to eat more, more often. We'll also be talking with the Nutritionist to work on some high calorie foods to compensate for her small appetite right now. (Also keep in mind, she can only handle a certain volume because of her Nissin, so we have to be careful with that. Otherwise poor girl feels bloated and may start coughing and feeling some pressure.)
GI was so happy with all the progress she has been making and she actually said some words that
Here's a pic of her being silly at the doctor's office...
Tuesday, August 14, 2012
Happy 18 Months Our Precious Little Ones...
Where has the time gone? Seems like yesterday I was looking on from outside your incubators, like yesterday that we got to carry your carseats out and drive you home. Like yesterday that we were up every three hours for months on end, from doctor's appointments to therapy and everything in between.
But ya know what I wouldn't change a thing.
How amazing you both are and how you both amaze me. They have their 18 month appointments tomorrow so I will be sure to update with offical stats later but I can tell you they have grown.
I know longer see tiny babies. I see toddlers, big smiles, giggles, tears (when they don't get their way) and milestone after milestone.
Where are they now?
Blake: Eats anything and everything. Favorites include yogurt and waffles.Runs Walks everywhere, mostly. Has lots of words and phrases including "Wat Dat" or "Who Dat". Drinks from a straw cup (or any cup). Understands "Come to Mommy/Daddy" and loves to tell you "No, no, no" finger pointing included. Says and signs "all done" & "more" recent words spoken include "Cup" or "Puc" and "Milk". He has started "giving kisses" which consist of open mouth full slobber kisses OR turning his cheek for me to kiss lol. Master stair climber, loves bath time as long as the water isnt running, and will quickly try to jump back in when bath time is over. He also likes to tell me "I poop" and has been known to bring me a clean diaper.
Addison: Still mostly feeding tube fed but making great strides. HAS FIGURED OUT HOW TO DRINK FROM A STRAW (our baby who never knew how to suck.... SHE SUCKED MILK FROM A STRAW). Is eating an ounce to two ounces of food depending on the day. Crusing and finger walking. Has 9 words/phrases..."Up" "Ball" "Baby" "Mama" "Dada" "All done" "Good girl" "Hey" "Hi", all of which have been within the last month. She was evaluated by Speech today through Infants & Toddlers and the request of the Cleft Palate Team, becase during their appt two months ago, she didn't really have words and was doing minimal imitating. Do you want to know what the Speech Therapist told me today? "I am amazed at her beautiful language skills, just three months post Cleft Repair. She has adequet words for her age, and immitates well. I am beyond please and think she is well within NORMAL range for her age of 18 months." Get out of here! Talk about a heart swelling with pride. I was also told once again that had it not been for the medical documentation it would be hard to believe she had a bilateral 3/4 brain bleed. She climbs stairs well but does better when little brother isn't racing her to the top.
Dear Babies,
May you always know the joy you have brought to us and continue to give us. I love watching the world through your eyes. The discovery as you learn something new. The pride you show when you master a new task. The imagination when you play a game a peek-a-boo together or turn toys upside down in attempt of finding new ways to play. The love that you give unconditionally. I am forever amazed by your strengths and how you both over come any obstacle placed in your way. My heart swells with pride every time I lay eyes on you both. Daddy and I are very blessed to have you both. I cannot imagine things any other way.
With all my heart and love,
Mommy
But ya know what I wouldn't change a thing.
How amazing you both are and how you both amaze me. They have their 18 month appointments tomorrow so I will be sure to update with offical stats later but I can tell you they have grown.
I know longer see tiny babies. I see toddlers, big smiles, giggles, tears (when they don't get their way) and milestone after milestone.
Where are they now?
Blake: Eats anything and everything. Favorites include yogurt and waffles.
Addison: Still mostly feeding tube fed but making great strides. HAS FIGURED OUT HOW TO DRINK FROM A STRAW (our baby who never knew how to suck.... SHE SUCKED MILK FROM A STRAW). Is eating an ounce to two ounces of food depending on the day. Crusing and finger walking. Has 9 words/phrases..."Up" "Ball" "Baby" "Mama" "Dada" "All done" "Good girl" "Hey" "Hi", all of which have been within the last month. She was evaluated by Speech today through Infants & Toddlers and the request of the Cleft Palate Team, becase during their appt two months ago, she didn't really have words and was doing minimal imitating. Do you want to know what the Speech Therapist told me today? "I am amazed at her beautiful language skills, just three months post Cleft Repair. She has adequet words for her age, and immitates well. I am beyond please and think she is well within NORMAL range for her age of 18 months." Get out of here! Talk about a heart swelling with pride. I was also told once again that had it not been for the medical documentation it would be hard to believe she had a bilateral 3/4 brain bleed. She climbs stairs well but does better when little brother isn't racing her to the top.
Dear Babies,
May you always know the joy you have brought to us and continue to give us. I love watching the world through your eyes. The discovery as you learn something new. The pride you show when you master a new task. The imagination when you play a game a peek-a-boo together or turn toys upside down in attempt of finding new ways to play. The love that you give unconditionally. I am forever amazed by your strengths and how you both over come any obstacle placed in your way. My heart swells with pride every time I lay eyes on you both. Daddy and I are very blessed to have you both. I cannot imagine things any other way.
With all my heart and love,
Mommy
Tuesday, August 7, 2012
Feeding Addison...
Not all that long ago I posted this to my personal FB and wanted to share it here as well.
"Let's talk about Addison for a second... Many people have asked about her feeding tube and wondered why they haven't taken it out yet. Her Cleft Palate surgery was not a cure all, we knew that going into it. That was just a small piece of the puzzle. She is still 100% tube fed, I don't know how long she will be that way. It could be forever, and thats ok. A lot of you know her and know that her feeding tube does not limit her in anyway. She just eats differently, plain and simple.
She has come a very very long way since we started therapy and hopefully with continue to progress. You see her pictures, eating cookies or other things because it's a huge deal for us. As her parents all we ask her to do is try. And that she does. That Oreo? Yeah that maybe the only thing she has put in her mouth all say. The puffs she stole from her brother, yup that's all she wants to eat today. There are only 25 calories in 45 puffs, and other then that they aren't very nutritionally fulfilling.
We can't just give her whatever, because she may or may not be able to manage it. We let her try a lot but only when we can be sure she is ok with it. Many days she fights us and now she is in the phase of wanting to do it herself. We try to respect that as much as we can too. It's all a balancing act. We work at it every single day. Some days I feel like we get nowhere and it's frustrating, other days she does great and it gives me hope.
I don't doubt her ability, but I am realistic. I don't know what her future may hold but I do know that no matter what she will be loved."
We can't just give her whatever, because she may or may not be able to manage it. We let her try a lot but only when we can be sure she is ok with it. Many days she fights us and now she is in the phase of wanting to do it herself. We try to respect that as much as we can too. It's all a balancing act. We work at it every single day. Some days I feel like we get nowhere and it's frustrating, other days she does great and it gives me hope.
I don't doubt her ability, but I am realistic. I don't know what her future may hold but I do know that no matter what she will be loved."
Since I posted that we did make some HUGE progress. Addison actually "consitantly" ate whole containers of baby purees for a few DAYS. Enough that I was even able to cut an ounce out of her tube feedings. And then her molars started coming in. AND.... the volume by mouth decreased.
BUT THE KEY IS THAT SHE HASN'T GIVEN UP. Yes somedays are still a fight, ok really right now most days are. But I am starting to see her progress a little more again. As of right now today, she is eating an ounce of food atleast once a day (we are do attempt to feed her 3 times a day, but she won't always eat). She will drink about an ounce of Pedisure 3 times a day, and will take sips throughout the day...
So what's our current "protocol"...OT and I were discussing this in depth yesterday. We are still pushing puree food and have recently started added some dissolvable solids to the purees, by crushing them up and making it more "chewy" for her. (We have noticed lately that she wants to chew alot, thanks to those teeth.) So adding things like graham cracker crumbs or what tried today crumbled Cherrios. And offering her things that are crunchy and can be placed on her molar area and she can chew.
We are still using a vibrating brush for oral stim, but seeing that we need to use it less and less, and her chew tube. Her oral motor is increasing beautifully which is promising. We are also going to try to alternate flavors with her and see if that helps. Our OT comments all the time that Addison is one in a million and what works today isn't always what works tomorrow. So it's trial and error, but we are progressing.
I think I have mentioned before that Addison likes very bold flavors so we are trying to play on that too. Plus she is becoming more and more interesting in feeding herself. She loves to take bites of chocolate chip waffles, but has yet to eat even a fourth of one. And recently she has been sucking on things like carrots and blueberries which is huge because prior to this she has not been able to suck at all because of her Cleft Palate. So we are working with that too and trying to get her to drink from a straw cup.
It is becoming increasingly difficult to keep her sitting still and entertained while connected to her feeding tube/pump, so we are working on some new games and skills. I bought both babies a Magna Doodle to draw with and we've been playing with crayons. Plus working on how to put things in and out of containers. We are reading books now too. Her (well Blake's too) favorite book is "Have A Ball" and she loves pointing at the ball and "reading" it to me... Her version goes something like this "Ball, ball, ball" ... turn page... "Ball, ball, ball, ball"...the end.
Her verbal skills are really picking up, which is exciting for us all. And I am a little nervous because she is getting closer and closer to WALKING....which means I will have TWO WALKERS!!!
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