Wednesday, December 16, 2009

Graduation Day!!!

Tomorrow, Noah will receive his diploma for completion of the 8 week intensive feeding program! They had a graduation party for him today, complete with cap and gown! Pictures soon! What a bittersweet time it is to be packing for home! We are so unbelievably ready to get home and back to our "normal" lives, but we are going to miss everyone here to much! The therapists and Dr Clawson have given so much of their time, dedication and love to Noah. What a truly gifted group of people and we so grateful for the work they have done with him! They have made this time go by so fast and they feel like family to us now.
Noah will be leaving the clinic eating over 25% of his daily caloric needs, as well as major improvement in his oral strength and muscle tone. We have pretty well confirmed an allergy to milk casein (after a reaction to straight cow's milk last weekend), so we will continue to avoid milk and follow up with allergy testing at home. I think we have been able to manage his high stomach acidity and still look forward to seeing a GI specialist in the near future. His retching continues to be a major issue, but we have been able to slowly move forward with volume in the last week. We are transitioning to pureed table foods of different varieties and he is still accepting over 2oz of formula from a squeeze bottle. His speech and language continues to improve each day. I can't tell you how happy I am to be writing all of the above, when I think where he was just 8 weeks ago, eating virtually nothing by mouth, 100% tube dependant, underweight, chronic diaper issues, skin issues, ranking a 0 in almost every area of muscle tone and strength in his face and mouth, and a vocabulary of only 25 words. I know a lot of work remains, but we have a huge start in the right direction!
There have been so many people "behind the scenes" that have done so much for us to make these two months a possibility. It has been a huge family commitment for us to be here. Our parents have been amazing and have never left us in need of anything. Brian and I are so very blessed to have their unconditional support. Even when things didn't work out for Elliot to stay here, they never hesitated to step up and agree to keep him. Elliot and Zane have hardly even noticed that I was gone! From the weekly care packages to phone calls and emails, we have once again been showered with love! And, as if I didn't already know this, I have once again been reminded of what an amazing husband I have. Brian has been relentless in his ability to keep things going at home, take care of the boys, and keep me emotionally buoyed this whole time, and still work full time and make weekend trips to Evansville. He never faulted and kept a great attitude 100% of the time. I don't know how I got so lucky, I have the best husband in the world. I never even got one call that the house was on fire or that the cops had to break up a wild party...:) Which is more than I can say for here, when it comes to fire at least!
We are officially "outta here" tomorrow afternoon! We hope to be home late tomorrow night!!
Thank you for faithfully checking in on us and as always for your continued prayers!

Thursday, December 10, 2009

Wrapping up week 7!

I can't believe it's almost over! One more week left to go! Looking back at our first week here, it is overwhelming to think how far he has come. We have learned so much and even though we still leave with lots of questions, he has made incredible progress. I can truly appreciate how difficult and involved feeding issues really are. I can't stress enough how blessed we are to have found the team at St Mary's. What we've learned here, coupled with the partnership of our therapists back home gives me so much hope that we are moving in the right direction, even if the steps are small.
Noah has been taking slightly bigger volumes of food this week, and they have introduced a few table foods in their whole form for his crunching and chewing exercises. Much like I would not throw a hunk of steak on Elliot's tray and expect him to know what to do with it, Noah has to learn the same. His food will be pureed for quite some time until he fully develops the skills needed for proper chewing, tongue movement, and swallowing. The only way to learn that though, is to practice. We are actually holding the food in his teeth and cuing him to crunch and chew. It's not always pretty, trust me, he does not like it, but he's getting better. We will slowly advance to gritty purees and thicker textures, but it will be awhile. I am excited that my "baby food making" obsession will be put to good use again! I love making Elliot's food! We have been encouraged to make Noah's meal times separate from our own so that he is able to concentrate without the chaos of typical meal times. We will continue to put him in his chair with a timer and he can not get up while we eat and if he expresses interest in our food, that's fine, but it will not be required of him just yet. I know Zane will be frustrated that a different set of rules applies to Noah for right now. Eventually, Noah's eating will be integrated into our mealtimes, just not right away.
I was questioning a lot of behavioral issues today regarding anxiety vs. 2 year old fits and how to handle certain situations. (seriously, when will I have a behaviour psychologist at my disposal again?) There are many times that you can tell Noah is terrified and other times that he's just being a toddler. Noah loves the therapists at the clinic as well as the other staff at the hospital, but many of them, it has taken the better part of 8 weeks for him to warm up to. Dr Clawson said that Noah kind of missed out on that part of his infancy where he learned to self soothe and with all the Dr's, test, surgeries, procedures, etc, he is so highly sensitive to people and his environment. We were having this discussion as we were leaving the clinic, and as if on command, Noah launched into a fit because he wanted me to carry him out and I told him "no". It was awesome, he threw himself down on the floor, kicking and screaming at the top of his lungs. What a perfect time for a teaching moment...I waited at the front doors while he pitched himself around on the floor in the hall. Dr Clawson just sat down next to him and waited it. Man o' man did we get some looks from people passing by. It was a beautifully orchestrated meltdown. In the end, after 20min, we won, and he walked to the car. Obviously, this was not one of those anxiety occasions we have been talking about, this was sheer 2-year-old will, that is freakishly strong!

Saturday, December 5, 2009

More questions than answers...

We've had such a busy week! Laura, Noah's OT from home, as well as other friend Laura (also and OT), came down last Wed night and observed a session on Thursday. Miss Laura did one of the feeding sessions so that Noah would be used to that routine when she saw him at home and he did great with it! Thanks again for coming guys!
Brian and Elliot came down Thursday evening and hung out at the clinic with us on Friday morning. We scheduled Noah's upper GI, swallow study, and small bowel follow through for Friday afternoon. I was so nervous, yet hopeful, that we would finally discover the reason for some of his issues. I was so proud of him, he did AWESOME for the test! Both the good and bad news of the situation, was that the tests were "normal". "Normal" meaning that his anatomy is different due to his CDH, but nothing pointed to why he is only able to tolerate such a small volume in his tummy. While I was so relieved to not see something wrong with him, it was very depressing to walk away with no answers. I seem to deal so much better with problem/solution, than "this is just the way he is". We have always been told that the anatomy of his stomach is different due to developing upside down in his chest, but I guess we always wanted to presume that, other than reflux, it would function properly. We have been trying to stretch his stomach for weeks now and keep running into the same issue. Dr Clawson said that if we continue to push the volume past his limits, he will eventually begin to associate meal times with retching and pain. For now we will continue to feed him up to his limit while we work on "plan B". "Plan B" is getting to work on finding a good pediatric GI doc that specializes in motility issues as well as chronic abdominal pain and retching issues. Dr Clawson highly recommends a Dr in New Orleans. Trust me, traveling to New Orleans isn't high on my list of ease and convenience, but we are soooo tired of trial and error at this point, I am just ready to have him comfortable and feeling well. He is doing so well with his eating at this point and everyone agrees that the sky will be the limit, if only we can find a solution to his GI issues. Dr Clawson is going to try and contact this Dr directly for his advice and opinion. As far as his metabolic workup, we still don't know 100%. We did get the blood work back and there was nothing that jumped off the page at us as far as his swelling and maple syrup smell. The inital urine came back with some protein and high PH, but we have yet to hear results on the amino acids. I really don't expect any surprises and feel strongly that this will all come back normal.
Noah is still eating 1oz of baby food and drinking 2oz of formula per session. This is still right around 25% of his total daily caloric needs. We are working on introducing a variety of foods and hope to move away from the baby food and over to thin puree of table food in the near future.
I am so so ready to be home! Overall, these past 7 weeks have gone by so fast, but as we are nearing the end I am really starting to feel the strain of being away. I am so ready to have all of my family under one roof again! I know that his schedule of eating and therapy will be crazy, but I am ready to get started!

Tuesday, December 1, 2009

Bad bad blogger...

Whoops, didn't realize it had been a week since my last post!
We had a great weekend home and a very blessed Thanksgiving! Another year of so many things to be thankful for! It was great to be with my boys for 4 days! It is so hard to be away from them!
We still have not received any answers as to Noah's strange maple syrup odor from last week. We haven't noticed it in the past few days. Hopefully we can get some results this week sometime.
As far as feeding progress, he is not really progressing, not regressing, but just sort of maintaining at this point. We are working on staying as consistent as possible with the 3oz of combined food and formula per session and he continues to have episodes of retching during most of them. The upper GI has been ordered and we are waiting to be scheduled. Off the top of my head, I think he is taking just under 25% of his daily needs by mouth, leaving him 75% tube dependant. A far cry from where we were when we started. They were hoping to have us leave with 50%, but it's obvious, with whatever stomach issues he has going on, we aren't going to get there quite yet.
Noah's therapists from Ft Wayne are driving all the way to Evansville tomorrow for a visit! Isn't that amazing! He is one lucky little boy to have therapists that are so committed to his success! This will be great for them to see and participate in his therapy sessions first hand so we can start building our plan for home.
Thanks for checking in on us!

Tuesday, November 24, 2009

Testing

Sooo.....just when I think I've seen it all....
Noah woke up this morning with a very strong maple syrup smell coming from his diaper, skin, and hair. So much so that I thought I would question the therapists about it thinking that maybe there was something in his food yesterday that would have caused it. I really didn't think too much else about it, but when we got to the hospital, everyone within a 5 foot radius commented on how he smelled like pancakes. In fact, the entire ROOM would smell of maple syrup after he was in it. I called Jeannie at U of M and, like always, she went right to work on what could be going on. The immediate thought was Maple Syrup Urine Disease, something with the bodies inability to break down protein.., but his newborn screening was negative for this. She said he would need to be seen by a pediatric geneticist and soon! Luckily there was one on staff at St Mary's and he was immediately sent for blood and urine tests to look for metabolic disorders. He did so well with the blood test and as far as the urine, they had me put a u-bag on him and I am still waiting for a specimen! He would have done okay with that if I hadn't accidentally stuck things together that shouldn't have been and had to adjust it a few times (some things should be left to professionals!). It will be 5-7 days before we really know anything and at this point, all I can do is speculate, which gets me no where. I contemplated even writing about it all until we know more and then decided against it...a few extra prayers sure couldn't hurt! I am wondering if maybe this is in someway related to his edema issues as well. He gained a pound this week and I am sure that some of that is fluid related.
Before all of this syrup smelling business, we had been talking about scheduling an upper GI and swallow study to be completed before we leave the feeding clinic so we can get a better idea of what is going on with his stomach. He is doing better with the retching, but we have been keeping him at right around 3oz total for both food and formula. No sense in pushing him over the edge. He is doing so well with the food! We have had a few major meltdowns during sessions the past few days, but seriously, with everything else going on, I can't say I blame him. Plus, they are phasing me into the session and having me do 2 a day, so he seems to try and test me as much as possible. Typical 2-year-old!
We are heading home for the Thanksgiving holiday tomorrow after therapy, but I will update if I hear anything about his test results!

Friday, November 20, 2009

Schedule

A few people have asked what our daily schedule here looks like, so since I have free time (lots of it!) I thought I would put it on the blog! This is what our schedule will be when we get home as well..
7:00am - Continuous night feeds shut off and Noah gets up
8:00am - Prevacid
8:30-9:15 - Morning session (breakfast) 15min of oral motor and chewing exercises, 30min of eating. (Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
9:15 - 10:15 - Playtime!
10:00 - Zantac
10:15-11:00 - 2nd morning session - 15 min of oral motor and chewing exercises, 30 min of eating.(Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
11ish - 12:45 - Breathing tx and nap time (or lack there of!) and lunch for me!
1:15 - 2:00 - 1st afternoon session (lunch) - 15 min of oral motor and chewing exercises, 30 min of eating.(Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
2:00 - 3:15 - playtime!
3:15 - 4:00 - Last afternoon session (snack) - 15 min of oral motor and chewing exercises, 30 min of eating
4:00 - 5ish - Free time
5ish - 6:00 - Dinner session w/me at hotel - 15 min oral motor and chewing, 30 min of eating.(Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
6:00 - 7:15 - Play, bath, breathing tx, Prevacid
7:15 - Bedtime and start continuous feeds
10:30 - Zantac

I know it seems like ALOT of time in the chair eating, but really this time is so laid back for him and he gets to play and watch movies for part of the time. He is constantly engaged and for the most part, happy during his sessions. The food and formula is offered about every minute, sometimes more frequent, depending on his tolerance. It is offered in rotation, bite, then drink, etc. They are encouraging us to keep our routine as consistant as possible when we get home. It takes him 30min to take 2oz of formula, so if we miss a session, he has to be bolused. The meds are strategically given throughout the day to try and keep his stomach as neutral as possible and the Prevacid especially, has to be given on an empty stomach. I have to check the residual in his stomach between each feed to determine the amount he can handle for the next one. 3oz total seems to be his limit at this time.
Hope this didn't bore you to tears! Have a great weekend!

PS. Sue, mom to Emily LCDH 1-22-08, feel free to email me so we can chat!
carrielynn999@hotmail.com

Thursday, November 19, 2009

It's not easy being 2...

If only I would have had my camera....Noah threw the most impressive temper tantrum I have ever seen from him today. Why? Who knows! The after nap slump escalated to a "throw myself on the floor and kick and thrash all of my appendages". It was quite amusing. We let him lay there and talked amongst ourselves for awhile. Finally he contained himself enough that I could put him into his chair for the session. He proceeded his tyrant and refused to swallow his food. After working himself into a frenzy again and a huge retching episode, it was as if someone flipped a switch and was sweet as sugar once again. They didn't try and force feed him, they just stopped the timer and waited for him to stop his crying and then began feeding him again. Ahh the joys of a two year old. Every now and then, it's great to see him do something "typical", even if it is a temper tantrum.
They introduced bananas yesterday, and peas today, still stage 2, but fortified with olive oil and Polycose (a simple carb that adds extra calories). Tomorrow is another weight check so I am hoping to see an increase! Yesterday he started his "weird random swelling" that he has had in the past. It starts in his fingers, then his hands and face. We thought that it was his formula before, hence the switch to the protein free specialized formula, now we don't know what is causing it. Last time the swelling escalated to the point where he stopped having wet diapers, so I am glad that if it had to happen again, it is happening now, so they can try to figure out what is causing it.
I have noticed that he is starting to put things in his mouth again, such as toys, fabric, etc. They said that this usually happens with kids once they start eating and decreasing the oral aversion. They said for us not to discourage it and eventually he will stop. Much like an infant that is exploring with their mouth, Noah is doing the same thing, only a little later.
Rumor has it, they will try to feed him pumpkin next week in honor of Thanksgiving!

Tuesday, November 17, 2009

Week 4!

Noah's goals remain close to the same as last week and they hope to continue to increase in volume and work on chewing and strength exercises. He has been introduced to a variety of different foods, all Stage 2 baby food, to include: squash, apricots, apples, pears, sweet potatoes, and rice cereal. Each food is boosted with powdered formula for extra calories. He is currently averaging 1/2 oz of food per session for a total of 2oz a day. His formula is still being offered via squeeze bottle and he is averaging just over 2oz per session for a total of 8-9oz per day. Volume is a huge issue and it seems that the closer they get to 3oz of total food and formula, the more retching and gagging he has during or after the session. They have increased the dose of both his meds and we are giving them at 4 seperate times throughout the day to try and spread it out as much as possible. His weight is still the same, and we may have to add a simple carbohydrate to fortify his formula ever further. Today they tried offering the squeeze bottle for him to hold and facilitate his own drinks. He did so well with it and was able to get about 2grams per sip, by himself! I am so proud of him!
Noah and I went home this past weekend and it was great to see the boys and spend time together! Of course there was the usual fighting and protest over this, that, and the other, but that's all a part of being home! Elliot seems to be feeling a ton better and has adjusted to his rather abrupt wean and switch to formula quite well. Zane is doing great and kept me entertained the whole weekend as usual. I just love his imagination and energy!

Thursday, November 12, 2009

Wrapping up week 3!

It's hard for me to imagine that 3 weeks into this program Noah would be sitting in his chair, drinking an average of 2oz and eating up to 1/2 of baby food per 45 min feeding session. Looking back to week 1 when they were simply working on opening his mouth for an open spoon and getting him used to their touch, he truly has made so much progress in 3 weeks time. Seeing that his weight gain is still an issue, they have now been mixing some powdered formula into this food for an extra boost as well as the introduction to rice cereal mixed with applesauce. He has a hard time with the cereal and tends to gag with each bite. We think that it is just thicker and tends to coat his tongue giving him an uncomfortable sensation. Even though he gags, he is still not refusing the bites. He is still getting his nightly 10hour continuous feeds, but I have only been averaging 1 bolus a day this week because he is eating and drinking the rest! An average of about 360 calories a day by mouth!Amazing! We will just continue to work on strengthening exercises and chewing and keep trying to increase his volume that he is taking. Once he picks up the volume, we can start chipping away at the continuous feeds. He is still having episodes of pretty bad retching after some, but not all, of his sessions. Dr Clawson strongly feels that his stomach is unusually acidic and could be the cause of his tubes going bad so quickly. She thinks the stomach acid is simply eating away at the balloons. We may be increasing the Prevacid again.
He has made major improvements with his speech. Since we have been here and they began the stretches and facial exercises, his vocabulary has easily doubled from around 25 words to 50! Today, he actually called me "Mom", not the usual "Maaaaaaa" I would get from him, but very clearly, "Mom". Music to my ears!
We enjoyed a great visit from Granny Ogle yesterday! She was kind enough to drive here from Ohio and spend some time with us as well as observe Noah's therapy sessions for the day. We also had a great dinner with friends Dave and Earline that live just outside of Evansville. Thank you so much for your kindness, we had a great time! Noah actually drank almost 2oz of water from a cup and straw and repeatedly asked me for bites of soup and bread. He sat in his chair for the entire meal without protest and had no episodes of anxiety when anyone talked to him. He has come such a long way in such a short time!
We are so lucky to have such an awesome support system of friends and family. I just can't say it enough! We have many, many blessings to be thankful for!

Tuesday, November 10, 2009

Sweet potatoes with a side of drama...

Last night was a very long night. Elliot woke up around 10pm and was up crying the rest of the night. I couldn't console him for anything! (they love us here at the StudioPlus). He didn't have a fever, so I chalked it up to teething and shipped him off to daycare this morning. Lo and behold, a few hours later, I received a call saying he had a fever of 102. The great thing about being in the hospital all day long, you know people that can pull strings! The feeding staff told me to bring him back after I picked him up and when we got back, they had Elliot an appt with a pediatrician! Poor Elliot has a pretty bad double ear infection and a sinus infection. Since he's been harboring this goodness since last week, they brought out the big dog antibiotics. Hopefully he will be better in a few days. Sadly though, this has bought him a one way ticket back to Ft Wayne. We had been contemplating this after seeing how well he did at home last week and the fact that he is so miserable here. Plus, being sick again, he would have to go back home for the week anyway, just to start a whole new adjustment next week if he came back. I hate being away from Zane and now Elliot, but I do feel better that he will be home - happy, healthy, and being loved by Daddy, Grandma Ogle and Grandma Baker. Who needs Mom when you have that army? Brian hit the road shortly after the call from the daycare and I met him in Vincennes for the trade off. Noah and I are back in Evansville...Elliotless :(
As far as Noah's day, they started him on Stage 2 sweet potatoes. He did okay with it, granted the day was cut short. The first session was the best, but the second he was trying to wipe it off his tongue with a towel. Sneaky, sneaky. Although short, the day was a little better for him than yesterday...oh, until he came home and his g-tube came out again. Thankfully we had a spare on hand. I don't know why they keep going bad on him. He has been through more tubes than I can count in the past few months! They are still working on lots of chewing exercises to strengthen his jaw when we start texture grading. They suggested lacing the puree with powdered Elecare for a few extra calories. They don't want to start adding butter, oil, or supplements until his stomach and digestive system can start to handle a little more. We will continue to increase volume of formula and food per session and keep trying to stretch his stomach little by little.
Back to a full day tomorrow, barring anymore unforseen catastrophies! We are looking forward to a visit from Granny Ogle!
Keep the prayers coming for little CDH'er Jamie, he is doing so much better every day! Also, please add Gabe and family to your prayers tonight. He and his family are going through an unimaginable hard time right now. They need prayers for healing and justice!

Monday, November 9, 2009

Good day, Bad day, depends on your perspective

Noah DID start stage 2 baby food today! They didn't tell him any different and started the first session as usual. He has been opening his mouth for a spoon with formula on it in rotation with the squeeze bottle, but this time, the spoon was dipped in Stage 2 applesauce. The first bite he shivered and gagged, but didn't rake it out of his mouth like I had anticipated! In fact, over the course of 4 sessions his total applesauce intake was 4oz for the day! Awesome, awesome, awesome! Every bite was beautiful to me!
The downside...his formula intake was not the greatest. His volume was down a bit and he was protesting every drink. He cried, begged, spit out, gagged, bit the straw, and blocked with his teeth, you name it, you tried everything he could to avoid his drinks. He cried for every session and for kept pleading to be done. His formula actually tastes very good, almost like vanilla cake batter. We aren't sure why the sudden change, and they are chalking it up to transition. It's Monday, and those can be difficult for all of us!
His weight was down again today, so I am not sure what that will mean in terms of changes or volume increase. Dr Clawson is going to give him another few days to adjust to the formula change as we are on 100% specialized for bolus and continuous feeds and have phased out the Nutren Jr completely.
Elliot was back to daycare this morning, and he voiced his displeasure numerous times. He must get his stubbornness from his brother. Notice I didn't specify which brother!
Hoping for less tears tomorrow!

Sunday, November 8, 2009

Family Weekend






Brian, Zane and Elliot came to Evansville this weekend, and I don't think we could have packed anymore in if we tried! The best part about them coming down for a weekend is that we aren't in a hurry for anything, other than when the kids need something or Noah's feeding schedule, we can take our time with everything. They got here late Friday night and we just hung out till bedtime. Saturday morning we got up, went for a walk, had breakfast, and then set out to explore downtown Evansville. We parked along the Ohio River and walked for awhile just enjoying the scenery. Not to mention that it was 74 here this weekend!! We stopped at a huge playground and the boys had a great time there. Zane and I toured the LST 325, a huge WWII Navel ship. Our tour guide was a seasoned WWII Veteran and had some great stories. Zane's eyes were as big as saucers the whole time. (Zane said the guy spit on him 3 times while he was talking, but Zane just wiped if off casually. Zane said "he has the nicest teeth I've ever seen, I just wished he realized he spits when he talks") We had a great dinner and then popcorn and movies after the little boys were in bed. Zane and Brian had to head back to Ft Wayne this morning. Elliot is feeling better so he was able to stay this week. I hate seeing Brian and Zane leave, I know I will see them again next weekend, but I hate being away from them!
We are hoping to introduce Noah to stage II baby food the first of this week. His formula intake was down quite a bit on Friday and he is still retching and gagging during the sessions, so I am not sure what they are going to want to do. His total caloric intake will include both food and formula, but the formula ultimately has the most calories per oz, so I assume that is of the most importance right now. I would assume the first introduction to food will mostly be for the taste and texture rather than volume anyway, so we will just have to wait and see!
Hope you all had a great weekend, thanks for checking in on us!

Thursday, November 5, 2009

Feeding updates...

They had the parent meeting with me yesterday to review Noah's current goals and progress as well as the results of his initial assessments. Here are some of the results (the very abbreviated version):
1. Poor strength and muscle tone in his cheeks, lips, and jaw.
2. Severe anxiety
3. Colitis and digestive issues
Current goals
1. Sit in chair for entire duration of feeding session (30min 5x a day)
2. Open his mouth for a spoon with water to formula on it.
3. Accept and swallow formula from a squeeze bottle
Long term goals
1. All of the above, but work up to 25% of his daily caloric intake by mouth to include both formula and pureed foods.

So far, Noah is sitting in his chair for 30min per session. He is accepting full strength formula from a spoon and swallowing formula that is squeezed into his mouth from a squeeze bottle. As of today, he swallowed an average of 2oz per session. Usually we bolus him 6 times a day at the rate of 60ml (2oz) per bolus for a daily total of 12oz. (He is still on continuous for 10 hours at night as well) Today he drank a total of 10oz for the entire day! He only needed the additional 2oz by bolus!!!! The only downfall that they are concerned about it that he is retching quite heavily during his sessions. We are sure that his tummy is empty between sessions and is used to having the same amount by tube at a faster rate than he is drinking it, so we aren't sure why. They are discouraged by this because soon they will introduce food, and he will need to be able to accept even more during his 30min session.
They were quick to point out that we do have a long road ahead of us. It will take time and continued therapy to get strength in his face and mouth as well as working up to varied textures of food and eventually drinking from a cup and eating table food. Not to mention the obvious intestinal issues that he has. The whole process is going to take much longer than our 8 weeks here in Evansville. BUT, the fact that he is drinking 10oz of full strength formula after just 2 weeks, makes me want to do back flips!! There is a light at the end of this very long tunnel! I was discouraged by yesterday's meeting, but I do understand that there is hope for these feeding issues, we will get there, and finally he is getting the help that he needs. We are actually seeing progress and that is something we haven't seen until now! He is sitting in his chair and letting people touch and hold him, and that is HUGE for Noah! We are exactly where we need to be and each day is an improvement, no matter how small or large it is!

Not your typical morning...

So, this morning, I am in the bathroom getting ready for the day. I hear Noah in the kitchen and yell at him to get out. I walk in to find him shutting the oven door. Naturally, he bolts out of the kitchen, knowing he was just busted being naughty. We both continue to go about our ways, when I began to see and smell smoke. I run back to the kitchen to see flames leaping from the top of the stove and in the oven. Apparently, seconds before I busted him, he managed to put a rather large plastic object (still unidentified) into the oven and turn it on. It wasn't long before the fire and smoke alarms were going off. We ran down to the front desk (They really love us here at the Studio Plus) and began to explain what happened. Luckily, the fire was extinguished, no one was hurt, and more importantly, they aren't going to kick us out. They have brought in some equipment to get the smoke smell out, otherwise we will be moving rooms again. So far, in our two week stay, I have manged to lock Elliot in the room, survive an ant infestation and now...fire. I do believe someone needs to come pick us up before one of us gets hurt! Please, please tell me that there is someone else out there that has had things like this happen to them too? Seriously, it would make me feel so much better!
Lots to report later on feeding news!

Tuesday, November 3, 2009

Not the best day, but it was bound to happen...

So no parent meeting today, not sure why, but maybe tomorrow..
Noah started the morning with the same routine as yesterday but moved up to 30min intervals in the chair. He did fine with this. He took another oz of very diluted formula in the first session over the course of the 30min. The next session they put a little bit more formula into the mix and he noticed it right away. He was wiping his mouth, making faces, and trying to spit some back out, but still managed to get almost an oz into him again. By the 3rd session, there was a slight mix up and he ended up with full strength formula in his squeeze bottle. This sent him into an all out retching and gagging fit and he cried for every drink the entire 30 min. They had to stop the clock a few times for him to compose himself and we weren't sure why the huge meltdown until they discovered the formula mistake. Dr Clawson said this is even more proof that we can't move to fast on him. Slow is better. So, we were back to the diluted mix the next time around. They have said that he has very poor muscle tone and strength in his mouth and jaw. This means he will have to work up to chewing and it may be a very long time before he is ready. We will be starting with pureed foods and work on texture grading for months afterwards. This explains the sudden refusal of food after a bite or two when he used to take some by mouth, he was simply mashing once or twice and swallowing whole. This is why the Beckman oral excercises are so important and we are doing these as often as possible. He has lost quite a bit of weight since the transition to the specialized formula. It is not as high in calories as the other so I predict we will be trying to move up in volume somewhere. I have already noticed a big improvement in his "bathroom" issues as well as changes in his skin since the beginning of the transition.
We are loving our new ant-free room! It has been a quiet, uneventful evening! From what I here, all is well at home with the boys. Elliot is still congested and snotty, but behaving himself for Daddy and Grandma. Zane had to have a cavity filled this morning but seems to have recovered nicely! Thanks to Pappy for escorting him! I am looking forward to all the boys coming down this weekend!

Monday, November 2, 2009

Ants in our pants.....

We had a great weekend at home, however, Elliot came down with quite a cold, so unfortunately that meant he had to stay home this week. My mom is keeping him while Brian is at work this week. We love you Mom!!! I can't thank you enough! It was heart wrenching to get in the car to drive back with Brian, Zane, and Elliot waving goodbye from the porch but then I try and remind myself why we are here and that it is going to be over with before we know it!
I can't believe we are starting week 2 already! Noah had another great day in therapy. He is up to 4 long sessions throughout the course of the day now. Today they introduced diluted formula in a squeeze bottle. I think there was about 2ml of formula to 5oz of water, but it still had some taste to it. Throughout the entire day, Noah drank a total of 4oz!!!! This is huge! Now, granted, it wasn't like he sat and chugged it down, it was small sips being introduced over and over again, but I honestly don't think he has ever drank that much!! They are hoping to start introducing yogurt the next few days. Tomorrow is the big weekly parent meeting where they will discuss his progress and goals. I am anticipating this one!

Tonight while I was getting Noah ready for bed, I noticed a few ants on the wall. I began to investigate further and discovered a thick trail of ants coming from the window, across the wall, over the desk and in my bed!!! I called the front desk and they so graciously offered to bring me a can of Raid. Um...I don't think that was going to cut it. Needless to say, Noah and I left our new friends behind and moved to a new room. This one is actually bigger so that was a bonus for us!
I will update with the results of tomorrow's meeting!

Friday, October 30, 2009

Wrapping up week 1!!

While outsiders might think that we aren't doing much, I think Noah has made amazing progress. We are now up to 20 minute sessions in the chair in the therapy room, with only a few requests to get down. He has a very hard time with transition and they have found that he does better with longer breaks in between and longer session times. Right now they are working on putting a spoon, cup, and bottle with a straw to his mouth. A typical session goes like this: Set the timer, start a movie, play with toys. Every minute, the movie goes off, toys are pushed away and one of the three things is put to his lips for a count of three. Then the movie goes back on and the toys come back. All the while they are introducing touch and physical interaction with him. He is very slowly getting to the point where he is allowing the water and spoon into his mouth. They have decided not to transition me out of the room just yet due to his high anxiety issues. He is getting very comfortable with the team and will even let them hold him and get him up and down from the chair. This is HUGE for Noah! They are still working on feeding tube changes and we are moving up on the formula transition. It might take another week to where he is 100% on the specialized formula. I know that these therapy sessions sound so simple and generic, but each move they make has a purpose. I can totally see how the key to the success of this program is repetition, reward, and reintroduction. They have noticed that he has a need for things to be the same and change and transition is very difficult for him. They said is very hypersensitive and that this is probably mainly due to his long medical history and all that he has had to endure. There is still the big issue of his internal gut issues. The GI dr that was formally involved in the program has relocated to New Orleans. He has a reputation of being one of the best pediatric GI dr's around. We may, in the future, need to consult with him, although the director of the program is also very fond of the team in Cincinnati, so that might be a closer option for us.
We are just so very blessed to be here. I love the team of therapists and I strongly believe in this program. Their beliefs and philosophies on feeding issues are truly fascinating!
We are heading home tonight after the afternoon sessions! Yay! It will be a quick weekend, but I am so ready! I can't wait to see Zane and Brian and go Trick-Or-Treating with the boys. Not to mention, sleep in my own bed!
Hope you all have a safe and Happy Halloween!
P.S. If you could, please keep little Jamie in your prayers. He is having a rough time after a very difficult CDH reherniation repair. It's so difficult to have your baby back in the hospital and on the vent after being home and thriving. Not to mention being seperated from your other child again as well. His mom is Amazing with a capital "A"!

Thursday, October 29, 2009

Tuesday, October 27, 2009

Intensive Feeding Program - week 1

Another day down! Today was very interesting and quite different from yesterday. I love that the team is so vested in Noah and his individual needs. They made sure to have toys, puzzles, and videos that he especially likes and in between sessions they all come into the playroom and play with him. Today's sessions did not involve any food, but instead focused on transitioning me out of the room. Again, he would sit in his feeding chair for 10 minute intervals but I would sit across from him and the therapist that was working with him at the time, would sit next to him. The first couple of intervals he screamed and cried the entire 10 minutes, but after the 3rd one, he did so much better. I would think by the end of the week, I will be out of the room completely. We also began introducing oral motor excersises. Every few minutes they would stop, push the toy away that he was playing with and tell him it was time for his exercises, have me do them, and when I was done, he would get to play again. Each time we are in a treatment session, the other members of the team are watching him on camera. They literally watch his every move and have picked up so much from their observations.
1. They feel that Noah's anxiety issues and irritability is due to something internal. They have noticed these issues at an all time high just after a bolus feeding. They said his behavior is that of a child that chronically just doesn't feel good.
2. They are highly suspicious of a milk protein allergy and have decided to switch his formula to a highly specialized casein free formula. The downside is that it can only be made to a 30cal concentrate, so we are going to lose some calories in doing so. They are hoping we can get him eating the difference soon!
3. They are adding another antacid for a total of 2, 4x a day.
4. They truly feel he has issues in his gut and hope that the formula change and addition of another med will help alleviate some discomfort. They are worried that he can only handle 60mls at a time without retching. They feel at his age and size he should be able to tolerate far more in his stomach that this.
Overall, I think he had a great day. I am so excited to see the progress continue and finally get him going in the right direction.
Elliot is still going to need some time to adjust, he didn't eat much or nap at daycare again today. Needless to say, I had no complaints from him at dinner and he went right to sleep at bedtime!

Monday, October 26, 2009

Intensive Feeding Program - Week #1

So, we managed to get settled in to a routine with bedtime and naps in the hotel over the weekend and the weather was gorgeous here, so we were able to get outside quite a bit. There is a huge pond behind the hotel with a sidewalk around it and about a million ducks. We spent alot of time going for walks and feeding the ducks and the fish. This morning was Noah's first day of therapy as well as Elliot's first day at daycare. The staff at the clinic is fantastic! They are so knowledgeable and friendly. We spent much of today doing introductions and touring the clinic. During the first three therapy sessions, Noah was presented with a variety of foods and a drink. For today only, I sat in the room with him, just he and I. Surprisingly we found a great feeding chair that he loved and he was quite willing to sit in it each time. Of course, not one morsel of the food made it to his lips, but they were really just trying to get a feel for what they were working with. The last half of the day he would go into the treatment room with myself and one member of the team and would simply sit in his chair and play with the therapist for 10 minutes. When the timer went off, he was aloud to get down. He really had a great time and did great from the anxiety standpoint. In fact, he only had about 2 or 3 tiny meltdowns that were quickly alleviated with a distraction. They went easy on him today, but tomorrow the work will begin!
Elliot, on the other hand, didn't have as much fun. As soon as he saw me when I came to pick him up, he belted out in a cry that was enough to drive me to tears right then. He was soooo mad at me! The teacher at the daycare said she had to hold him the whole day and he only ate about 4oz of his bottle all day. By the time we got "home", he was back to his happy, lovable self. I am praying that he gets used to it and has better days to come!
Brian headed back to Ft Wayne this morning, but we will get to see him and Zane this weekend for Halloween!

Friday, October 23, 2009

We're here...well at least half of us.

So Elliot and I packed up the car and headed out to Evansville yesterday. We wanted to arrive early to tour the daycare that Elliot will be at and get checked into the hotel. Brian is working today, but due to arrive tonight with Noah.
Our drive was actually pretty good, just over 6 hours, including 1 stop along the way. Elliot did awesome in the car! When we arrived, I discovered the first of my dilemmas. How to unload an entire van full of junk with a baby in tow...Hmmmm. With the risk of looking like a complete freak show, I strapped Elliot into his booster chair and tied it onto a luggage cart and away we went. Of course I am on the 2nd floor, but thankfully there is an elevator in the hotel. So 5 carloads later, I decided to throw in the towel and leave the rest for when Brian got here. So, after unloading the last of the stuff off the cart (including Elliot), I opened the room door to push it into the hallway. As I was doing so, I heard a "thud" behind me and a sickening "click" sound. The sound of my hotel door closing with my 8 month old inside. Needless to say, I made my presence known when I arrived at the front desk at 80mph bawling that I had locked my son in the room and needed a new key. Rest assured, Elliot came out unscathed and didn't even notice I was gone. I doubt I will receive "mother-of-the-year" for that one. Okay, so recovering from that one took a little awhile, but we made it through the night in one piece. This morning we headed off to the daycare for a tour and to complete all the paperwork. Elliot will be attending the Ark Crisis Daycare. This is a wonderful state licensed daycare that services families in need of temporary childcare due to emergencies, illness, etc. They have graciously agreed to take Elliot for the entire time that Noah is in the program...and get this..it's free. They rely on donations and funding from local businesses to keep their doors open. What an amazing organization. I am hoping that Brian and I can give back to them as much as possible.
We want to give thanks again to our amazing, wonderful, supportive, loyal, generous, loving group of family and friends back home. We are never alone! I remind myself daily that there are many families going through these types of situations that have no support and we are forever grateful of our blessings!

Wednesday, October 7, 2009

Fuzzi Bunz, a haircut, and a check up from Dr Noah?

I am so happy to announce we have switched to cloth diapers for Elliot! I love them! Elliot is Mr Sensitive when it comes to diapers and he breaks out everywhere when he wears disposable. Just recently we have made the switch. Not only is it super comfortable, it's fashionable too, not to mention the benefits it has for the enviornment and our wallet! We have gone with Fuzzi Bunz One Size so they are adjustable all the way to fit the toddler years. No more diaper rash, no more waste, and best of all, no more money spent on disposable diapers! I can't say enough about the great benefits! Mason's mom, Rosie, has started her own cloth diaper business. Check out their site! http://www.greatlakesdiapercompany.com/

Now that's a pretty cute bum!


Elliot had his second haircut this week!


I promise the following images were not staged in any way. Noah did this all by himself! Sad or cute?

Thursday, October 1, 2009

More b-day pics....



Zane turns 10!




Zane had a great time turning double digits! His actual birthday was Monday, but we celebrated it last Saturday. He started the day off with a football game. He kept asking his coach how much longer they had left in the game..hmmm...I think he may have been a bit anxious to get to the rest of the festivities. After his game we opened presents and watched some old home video of him in the hospital and during the first year. Wow - is all I have to say about that...the ole cliche, "where does the time go" is an understatement. After presents he wanted to have lunch at Texas Roadhouse. We left Noah and Elliot behind since Noah is under "lock down". Plus, I will not lie and say it wasn't very peaceful to have lunch without them. (does that make me terrible?) Anyway, later that night we set up the backyard to look like and army battlefield and Zane invited his cousins over for an Air soft battle. For those of you that may not be familiar, Air soft guns are BB guns that shoot plastic bullets. They say being hit with one feels similar to a snap with a rubber band. Air soft brings out the kid in everyone, as you may notice Brian and Uncle Jeremy in the middle of the action...They ended the night with by camping out in the backyard and roasting Twizzlers over the fire..(when one finds themselves w/o marshmallows, get creative).
Sometimes I wonder what it would be like to have a princess party or the living room littered with Barbie dolls, but I never get tired of watching the rough and tumble of my boys together. My mom told me I was meant to be the mother of boys, and she couldn't be more right. Even though I am sure to have many hair splitting days, I wouldn't change it for the world!

Thursday, September 10, 2009

Post # 3 - Elliot

Elliot will be 7 months old in just a week! He is now sitting up on his own and just days away from full crawling. He amazes me with his strength! He is going to be a monkey, I can feel it coming. He will be the mover and shaker of the three. He finally had a shiny white tooth pop through this week! He is eating like a champ!There isn't much that he will turn his nose up at. Make fun of me if you will, but I have really gotten into making his baby food myself. I love that it's fresh and organic, not to mention super cheap and easy. Noah just doesn't know what he is missing out on! The whole sleeping through the night skill has yet to be mastered. He is currently still waking up twice a night to eat. The pediatrician says to keep feeding him when he wakes up for at least another month or so. I keep hoping he will turn that corner and start sleeping straight through soon!
We have found a wonderful daycare in Evansville for Elliot to stay while I am with Noah during the day at the feeding program. The search was not easy, especially not knowing the area, but we are so fortunate that it worked out this way. It's going to be so hard to leave him!! I am sure he will enjoy having friends to play with and with his dashing good looks, I am sure he will need to fight off the girls with a stick!
Thanks for checking in on us!

Sunday, September 6, 2009

Post # 2 - Zane

Double digits!! Zane is going to be 10 on Sept 28th! 10! Man do I feel old!
Fourth grade is treating him well so far. He has always done very well in school, excpect for the occasional problem with talking. I am not sure where this comes from ;)...If you remember,4th grade is the year they play the recorder in music. Can't wait for that...I am hoping by the time Noah and Elliot reach 4th grade they will be banned due to too many parent complaints. There is nothing like a symphony of 25 4th graders playing Mary Had A Little Lamb on the recorder. I'll be sure to post the video!
He has started his first year of tackle football and loves every minute of it. His first game was this past Saturday. He will be starting cub scouts up again in the next few weeks and then basketball will pick up where football leaves off. He is our social butterfly!
I am dreading the thought of leaving him behind when I head off to Evansville, but fortunatly now that our start date was pushed back, he will be done with weekend football games and will be able to travel with Brian on the weekends that I am not able to come back. It's really hard to imagine going two weeks between visits, so now I should be able to see him more often. He still doesn't seem too phased about us leaving other than making sure I would be home for Christmas. I certainly don't know that I could be as patient and understanding at his age as he has been since Noah was born. His love for his little brothers is more than obvious and I am so proud of what a great influence he is on them...

Post # 1 - Noah

Since my last posting a few weeks ago, we have been to St Mary's center for Children in Evansville for the evaluation with their feeding team. We met with the physcologist, OT, speech, and dietician. They did a complete history and then left us in the room alone with Noah to see if he would eat anything while they watched on camera. Suprisingly we were able to get him to nibble at a few things allowing them to get a good idea of his typical meal time (if that's what you can call it). A few observations they made, the first being that he is not actually chewing. He is mashing once or twice and then swallowing or spitting his food back out. He has very low muscle tone in his face and his jaw line is weak. They also noted his extreme anxiety issues and feel this could be a major issue with his progress in the program, but hope to be able to work on it. The Dr explained that children that have been as sick as Noah have no internal drive to eat. They lack the feeling of hunger. We can recognize that familiar feeling when our blood sugar begins to drop and we need food. Noah on the other hand, does not. His "bites and sips" diet as we call it, is only because it seems interesting or because everyone else is doing it. They said that after he is completely weaned of his tube feeds, it could take up to an entire year for the hunger mechanism to kick in. When I inquired as to his goals for the program at the end of 8 weeks they said that first off we have to work on getting him to a healthy weight. Aggreed. Second, they would consider the program a success if he was only needing tube feeds for 25% of his diet. They said he would need strict follow up therapy back at home and a supplemental 2 week program a year from now. This was a hard pill to swallow. My expectations were a bit higher than this, but sitting back looking at it now, 25% is leaps and bounds above 100%. Our official start date for the program as of right now is October 26th. It will be here before we know it!
For now, he is still tolerating the g-feeds with only and occasional episode of wretching. We have slowly been switching him over to a 45 cal formula and even the little bit of weight he has put on has made a huge difference. He looks so much better than he did a few weeks ago.
We met with his pulmonologist this week and he also got a flu shot. The pulmonologist was not pleased with how sick he has been this summer and advised that we put Noah back into our usual winter quarentine. Basically we will be avoiding any public places, any gatherings with lots of people, and other children. The Dr wasn't actually too worried about the feeding program as it is almost 6 hours south of here and the climate will be milder. He asked that we use precautionary measures down there as well. Since his lungs have not been in the best shape, he has asked that we increase the inhaled steroids to twice a day for the next three months. Obviously when H1N1 comes to our area, Noah will be a prime canidate for the vaccine, and we will be looking into that when the time comes. We are unsure as to whether or not to vaccinate and will discuss with his pediatrian and pulmonologist again at that time.
Aside from the feeding issues, Noah is growing up right before my eyes. His personality shines and he makes us laugh everyday. He is currently full of mosquito bites and has two skinned knees - what a blessing. This to me just shows that he is strong enough to be running around outside like any other two year old!

Thursday, August 20, 2009

Holding....

So far so good.....the g-tube is holding over for now. Noah is tolerating it far better than we could have expected. We have even gone up on calories and volume and he is tolerating the formula in his stomach like a champ. We met with the pediatric surgeon in Ft Wayne Wayne the other day to follow up and get some ideas. They agreed that his site still looks pretty bad and the Dr did a quick silver nitrate treatment and was able to remove alot of the goo that was down in the site. We have scheduled a g-j tube replacement for Sept 2nd. This will allow him time to heal from last weeks trauma. We have learned that Kimberly Clark, the manufacturer of the mic-key g-j button is having recalls due to faulty baloons, which explains why this one broke. God willing, if he continues to tolerate the formula into his stomach from now until then, we will cancel the procedure all together. I am trying to be optimistic and realistic at the same time. I don't want to put to much on him especially with the feeding clinic just around the corner. We want everything to be working smoothly and have him comfortable so the focus is on eating, and not tube issues. We are headed to Evansville on Sunday and will stay through Monday. We are so excited to see how things work at the clinic and meet the Dr's for his evaluation. I will post all the info when we return!
Zane started 4Th grade last week, it's still hard for me to believe. He is into his second week of practice for tackle football and really seems to love it. His first game isn't until the middle of September. Right now he is still trying to decide which position he wants to play. It was hard to see him in his uniform with pads and helmet on for the first time...I am not sure when it happened, but he grew up when I wasn't looking!! He will be 10 in just over a month!
Elliot is doing fab! Sometimes I think I could just sit and watch him grow, it seems to be happening so fast! He is starting to sit up unassisted and getting up on his hands and knees in the crawling position. I would think in the next few weeks, he will be fully mobile! He is such a happy, smiley baby!

Monday, August 17, 2009

Bad week....

On our last night of vacation at the lake, we heard Noah's feeding pump beeping and went in to find that the g-j had come out. Luckily the site was still open so we were able to put in the foley cath and resume his feeds at a reduced rate. We attempted to get the tube replaced here in town, but the hospital doesn't carry the type of tube he needs and it was going to take too long to get one ordered. We were able to get OR time at U of M just two days later so we headed up on Wed morning. Due to some complications, Noah had to go back in to the OR twice to have the procedure done. Needless to say, two procedures in one day under general anesthesia took quite a toll on him. He had some pretty bad tissue trauma to the site and a lot of pain. By Friday I called the surgeon here in town because he still was in so much pain and the site looked awful. They started him on an antibiotic and we started giving him Motrin for pain. This has seemed to help somewhat. By the rest of the weekend he was playing again, but still not 100%. Last night he woke up crying in the middle of the night and I went in to find that the g-j was out again....Brian and I were just heart broken. There is no way he is in any shape whatsoever to tolerate another procedure and I am not putting him through it again. On the other hand, he looks terrible. He is just so skinny. Giving him a bath last night I just couldn't help but think that he is so skinny he looks sick. His upper body is just skin and bones. There is no way he can afford to lose any calories. In fact, we are going to switch to a 45cal formula. In past, he has never been able to tolerate large volumes of formula in his stomach, hence the need for the g-j. Last night when the tube came out, we put in a spare g-button that we had. We are at a loss of what to do now. If he doesn't tolerate the g-feeds, he will be forced to have another g-j placed, but we are going to try everything in our power to avoid it. The feeding clinic is just around the corner, but we have to have the tube situation under control so they have something to work with. This whole situation is just breaking my heart and I feel like there is nothing I can do for him to fix it....
Noah spirits were brightned by a wonderful visit with the Ellingers. Even though he was not at his best, I think Noah still had a great time with Mason. What an absolute joy it is to see the two of them together!
I have some great pictures of the boys I hope to get up in a day or two. Zane started tackle football and I have some good ones of him in his "gear" (is that what you call it?).

Saturday, August 1, 2009

WARNING - RIDICULOUSLY LONG POST!!

We have been discussing, praying, and researching a very big decision the past few months. After much consideration, we have elected to pursue an intensive feeding clinic for Noah. We have reached a point that we never thought we would in terms of his feeding issues. We have attempted, on many occasions, to aggressively wean his tube feeds in hopes to stimulate appetite, with each effort ending the same. He will not sustain himself. He does not drink but at best 2oz on any given day and will go, sometimes days without putting any food to his mouth at all. There have been many occasions while bathing him or changing his diaper that I am in tears to see how skinny he is. Although I understand that some kids are just small, or skinny by nature as children, this is different. It truly breaks my heart. We have maxed out on the amount of calories that he will tolerate by tube. We have found the two best therapists in Ft Wayne, that both seem 100% devoted to him. We have all concluded that their time with him, while positive, just isn't enough for him to make the progress he so desperately needs. I can't tell you how many conversations with people and medical professionals I have had about his feeding issues. It is the most misunderstood and frustrating topic that usually ends in the same place every time. The truth of the matter is that Noah has never really eaten enough to sustain himself, but we do know that he wants to eat, he can chew and swallow to a certain extent, but he has always had trouble taking any volume, especially liquid into his stomach, hence the need for the g-j tube. Plus, each time the g-j needs replaced, it requires putting Noah through yet another procedure. I am sure that being two, there is a huge behavioral block, as well as associating food with pain, as well as the anatomical structure of his stomach and digestive system. 44-69% of CDH kiddos will end up with supplemental tube feedings an up to 50% are still tube fed by age 1. Taking a long hard look into the next two years, we feel like we are swimming up stream. He is still requiring 12 hours of continuous j feeds at night, squashing any hope of the natural fasting time during sleep not to mention keeping him away from the prospect of a big boy bed anytime in the near future. Watching a typical two year old and their love of food just makes me so sad of what Noah is missing out on. The bottom line is that his quality of life will improve by leaps and bounds if we can get him to nourish himself.
Okay, so what does this mean...
Noah, myself, and Elliot will be packing our bags and heading to Evansville, Indiana to an intensive day feeding program for 8 weeks. Wow, this has been a huge decision, as it means once again, our family is divided. Evansville is 5.5 hours away from our home, making the commute a difficult one. We have spoke with many different clinics in Ohio and Michigan, and Evansville kept coming out on top for us. We must be covered under insurance and heading out of state would make it less likely to be covered. The biggest blessing is that we have little to no wait time to get in, other than the insurance red tape, housing, and setting up childcare for Elliot. All this being said, we could leave as early as a few weeks from now. I am feeling major guilt knowing that so many families are still waiting for availability or insurance issues. The program consists of five days a week, all day. He will eat all of his meals and snacks in the clinic setting, but be able to come "home" every night with me to sleep and nap. The multidisiplary team consists of a pediatric gastroenterologist, nurses, phsycologist, OT, speech pathologist, feeding technicians, and dieticians....it takes a village, right? There is no force feeding involved. They will use a combination of oral motor exercises, chewing exercises, texture grading, intervention strategies and other feeding techniques. I have been reading different case studies and the results are amazing...most of the studies I read of kids that were 100% tube fed for most of their life, had their tubes discarded after 10 weeks of treatment. Wow!! Now obviously there is no guarantee that this will work, but we have to try it. It would be better to try and fail, than to never try at all and continue with conventional methods that we know are not working.
So I am am working out details now and trying to figure out how everything is going to work. It will not be easy, but I keep reminding myself, it's only 8 weeks, compared to the possible years we are looking at now. It is going to be hard on everyone, especially Noah. I am sure he is going to hate it. Zane is getting used to the idea and he will have lots to keep him busy. School, football, friends and family will consume most of his days and I will do my very best to come home as often as possible to see him. Elliot is coming along and I will be putting him in daycare during the days while I am with Noah. I have left him at the church daycare for an hour or so, but other than Grandma's, he's never been away. I am sure he will be fine, it's Mom that always suffers, right? :) He is still nursing and just now starting to take solid food, so I am hoping I can get the whole pumping thing worked out. Although he is on a schedule at home, I am not sure it will be followed the same in daycare. Brian will be staying back to work obviously, and keeping things going here at home.
I am going to start putting updates on Noah's carepage as well. Many people have expressed to me that they are not able to get updates through the blog, plus I really want to keep a journal of his daily progress.
So, we are excited, scared, nervous, skeptical, all the emotions I thought we would be. I do know that in my conversations with people at the clinic, I have been so encouraged. Talking with them is like a breath of fresh air. They are devoted to feeding issues and have pretty much seen it all. I don't feel like I am defending or explaining his feeding issues, they just "get it" and are ready and willing to help him.
We hope to have many more details pulled together in the upcoming weeks!

Wednesday, July 22, 2009

HOME!!

Just a quick update to say that Noah is home! The surgery went very well. The whole procedure took just about 45 minutes, but he was in recovery for about 3 hours. He never does very well coming out of anesthesia. After a few hours he started to come around and was crying and pointing at his IV wanting it out. That's always a sign that he's ready to go home! We are so relieved to have this done and out of the way. After all the procedures and surgeries he has had, it never gets easier to see him go through it. The older he is, the more he understands what is going on. He is going to be in pain for a few days and already has some bruising, but we are hoping he is back to terrorizing his brothers by the weekend. We will meet with the surgeon next Friday to have the stitches removed.
I will most an update and new pictures soon! Thank you for all the love and prayers!

Monday, July 13, 2009

Update

Life has been pretty quiet other than a few minor issues. We discovered that Noah has a left inguinal hernia and another small issue in the same area that needs repaired. He doesn't seem to bothered by it, but it still has to be fixed. We talked to his surgeon in Ann Arbor and he gave his blessing that Noah would be just fine having the surgery done here in town. We met with the pediatric surgeon here and he assured us that it is quite common and should be a routine procedure. They will repair the left hernia and explore the right side as well. Surgery is schedule for Wed, July 22nd around 3pm. We aren't sure if he will have to stay until Thursday or not, it will depend on how well he does with the anesthesia. I will update when he is home!

Friday, June 26, 2009

Back to normal...



Finally, life seems to be settling down and everyone is healing up. The boys have all recovered and are back to terrorizing the house and everyone in it! Zane, so far seems to be having a great summer vacation. He and I have been spending lots of time together which is wonderful. It's nice to have that Mommy and Zane time where I can just focus on him. I am continually amazed and so proud of what a big influence he is in his brothers lives. Today I asked him in the car, "Zane could you please put Noah's shoes on?" His reply.."No, my feet are much to big for Noah's shoes". His quick wit is hysterical, as long as it's not at my expense of course!
Elliot is expanding more and more every day! Zane says his cheeks are sure to take over his body soon! He is much happier on the reflux meds and we started him on baby cereal this past week as well. We love seeing his personality grow and change.
Noah is doing great! He is becoming much more adventurous and active. We put up our little swimming pool and he went from standing at the side, chucking random objects in, to actually getting in and swimming, in just a few days. His is living up to the terrible two's and has been in "time out" more times than I can count usually for things like, throwing things, hitting one of his brothers, dumping things on the floor, all with an evil cackle that shows no remorse. Should I be worried? Speech and OT are going well, aside from a very upsetting session last week. We had a different therapist who thought that force feeding was the way to go. I will spare you the details, but it was an awful experience for all and I stopped her and the session ended. While this may work for some children, it will not work for Noah. We have worked long and hard to have food and meal times be a pleasant experience, sessions like that will only fuel his anxiety further. Today we met with his usual therapist and things went much better. Although he didn't eat for her, he got off my lap and played with toys and even gave her a hug when it was time to go. There isn't a day that goes by that we aren't proud and thankful for what he has overcome and accomplished. I couldn't help but smile to myself as I was chasing him through Walmart today. What a normal, typical, 2-year old thing to do....I love it!

Sunday, June 14, 2009

What a week.....

So with Noah's birthday behind us, I was ready to move on and focus on feeding issues and tube feeds full force. I should have known Noah would have other plans! We had his two year check up in Ann Arbor on Tuesday. We met with the surgeon, dietitian, and OT. All went well and his surgeon was happy with his tube site and recent chest x-ray. We discussed current feeding strategy and some ideas to chew on for a few weeks and changes to make. I noticed that Noah was strangely docile while we were there, which is quite unlike him. When we got home I could tell he wasn't feeling well. Sure enough we were into the Dr Wed morning with a high fever. The pedi checked him out as well as Elliot (who is still coughing from two weeks ago). She said again that it was just viral and would have to run its course. She told me to expect fevers for a day or so and just to give Motrin. Elliot was diagnosed with reflux that was causing his chronic congestion. I have seen this coming for weeks so I was quite happy to get him some reflux medication started. Noah's fever spiked the next day as high as 104! They said as long as Motrin would keep it down not to panic. Motrin was bringing it down but only to about 101-102. He wasn't tolerating tube feeds and by Sat he was seemingly worse and his cough (from weeks ago) came back with a vengeance. Then he broke out in a rash that seemed to spread quickly. I called the pedi on call and we were told to take him to the emergency room. By the time I got there, he was coughing nonstop and his rash seemed to be everywhere. He was satting in the mid 80's so he was immediately given a breathing tx which quickly brought him back up into the 90's. They did a chest x-ray which showed no sign of pneumonia, thankfully. They did discover a pretty nasty ear infection and deemed the rash to be possible Scarlet Fever. There was a small moment of panic on my end when I heard that, but the Dr told me it is basically a side affect of strep and isn't as bad as it used to be many years ago before antibiotics. He was given an antibiotic for the ear infection as well as the scarlet fever. Thankfully they released him home. He still isn't tolerating tube feeds. Even 30cc made him wretch like crazy last night. I started him on a very low rate of pedialyte last night and he did better with it. This is the sickest I have seen him that's for sure. He is lethargic and miserable and the cough is just wearing him out. Right now he is laying on the couch with a pillow and blanket watching the Food Network. (Ironic viewing choice, I know). I am hoping that magical 24 hour mark of antibiotics will make him a new man.
Luckily Zane seems to have bypassed this all. He has been so great this week, being hauled around to Dr appts and a long road trip to Ann Arbor. Not a great start to his summer vacation, but what a trooper he has been. Now he is relaxing at his Mimi and Pappy's house for a much deserved break from his little brothers!

Monday, June 8, 2009

Look Who's Two!



Yesterday Noah celebrated his 2nd birthday! Each day seems to bring something new. His personality is shining through more and more. When I think back to where he was two years ago, it just doesn't seem possible that he was ever that sick. Although he still struggles with feeding issues and other typical CDH stuff, it doesn't keep him down. He is happy, playful, and full of energy, everything typical of a two year old! Overall he has had a great year! He took his first steps, is learning more and more words and became a big brother. He has only had one hospitalization and few minor procedures, all involving his feeding tube. His social skills and anxiety have improved by leaps and bounds. He is finally trusting enough to enjoy being around other people and kids. We are continually amazed at his progress and are so very thankful to be where we are today. We want to thank everyone for being such a great support system and encouraging us along the way. I don't know how many times we have said that we couldn't have done it without our family and friends. It's crazy to think that two years ago we were just starting out and to look now at how far he has come. He may never know just how special his birthdays will be for us! Here's to next year and I hope by his 3rd birthday, he will actually want to EAT his cake!

Tuesday, June 2, 2009

A Sticky Situation....

So, the other day, I heard a loud crash, immediately followed by Noah screaming as if someone was shooting guns at him. He came roaring out of the kitchen and literally almost jumped in my arms. When I walked in the kitchen to see what had happened, I could see a light mist throughout the entire room. It took me a minute to figure out what had happened and that what I was seeing was a fine mist of soda covering every single square inch of the kitchen. Somehow, Noah had smuggled in a can of soda from the garage and dropped it on the tile floor and it of course, exploded. Meanwhile, as I was scrubbing down the walls and floor, I glanced into the living room at Elliot, who had quietly been laying on his blanket under the toy bar. I noticed that he was on his belly....and I had laid him down on his back! So here poor Elliot rolls from his back to his belly for the first time and we all missed it! Never a dull moment...Zane thought the whole situation was hysterical and was happy not to be the one in trouble!

Friday, May 29, 2009

Sick Babies!

Elliot and Noah are STILL battling this respiratory virus going on 17 days now! It began with a very simple runny nose, which then led to a cough. Noah would struggle with the cough alot at night, in the morning and after naps. I made several calls to the pediatrician explaining that I thought they should be getting better and describing their symptoms. I kept getting the same thing, "it's just a virus", "it will run its course", "most viruses last up to two weeks", "no fever means no infection", "try a nasal mist" etc, etc. I was doubling up on Noah's breathing tx and that was about all I could do. It really isn't keeping Noah down at all, he is still running around, getting into everything, despite the cough and congestion. Finally on Tuesday I called the Pedi again letting her know they STILL aren't improving and need to be seen. The best they could do was give me an appt for Wed afternoon. During this time I even tried calling another pediatrician to switch practices and was told I would need to submit a letter for review of why I wanted my children to be seen there. Good grief! I just wanted someone to look at them! By the time we got to the pedi on Wed Noah was wheezing so badly that she said she hardly heard any air moving through. She still didn't suspect infection but started him on oral steroids immediately and increased his dosage of Xopenex and told me to give him tx every 4 hours. Elliot was in far better shape, but he too was wheezing. No steroids for him, but he is sharing Noah's breathing tx's. We took Noah in for a chest x-ray that came back negative for pneumonia.
I don't think I can stress enough the value of a good pediatrician, of which I have learned a great deal about it the past two years. Especially with a kid that has chronic lung problems, but in general, just one that will truly listen to your concerns. So, here I have been second guessing myself each time I get off the phone with her, and finally when she does see them, I feel terrible for not pressing the issue much harder in the first place. This is not the first time this has happened, so once again, I think we are making the switch to a different doctor. I feel that we are going a thousand different directions trying to manage his care and we really need someone to be following all of it! Someone committed to following him regularly and not just when he is sick. We have explained this to both of the pedi's was have had, and even have a great letter from the U of M outlining what they need to be followed for in the years to come. The biggest thing is that they need to be proactive, not reactive!
Anyway, this was not intended to be a vent session for me! I have a million pictures of the kids from the last month that I promise to put together and post, soon. Can you believe that our Noah is about to celebrate his 2nd birthday? That's right! 2 years old! I get a lump in my throat just thinking about it! The Happy Birthday song has a whole new meaning for me now! Brian and I were just saying last night how two years ago at this time we were sitting at the RMD house waiting for the big day, meeting our dear CDH friends for the first time, and being terrified of what was coming. What an amazing support system we had, and still have today.
I promise to put up pictures soon!

Sunday, May 17, 2009

Zane the Athlete and some changes for Noah




Zane competed in a Triathlon for NWAS this Saturday. Despite the weather, he finished each event, which included a 1/4 mile swim, 2 mile bike ride, and 1/2 mile run. He is so proud of himself as were all of us! We assembled the "Zane fan club" to cheer him on in the pouring rain! I think he really enjoyed himself and is already looking forward to next year! He is on the countdown to summer, only 11 days left to go! The fact that he will be a 4th grader is still sinking in with me. It really does go by too fast...
Noah had a pretty big week. We finally talked the pediatrician into running lab work and thankfully it all came back okay. We have been working very closely with Jeannie and Emily, the dietitian from U of M to get some of these issues figured out. We are so thankful to have them to work with. Some of the main concerns right now are:
*He is still not eating or drinking...anything
*He is still having occasional swelling of the hands, feet and face
*Digestive issues
*Sunken eyes and poor coloring
*No weight gain despite the calories we are giving him and no room to add volume.
After the results of the labs and conversations with the dietitian we have made some changes:
*We have increased his water bolus to 75ml 4x daily along with the 2 formula boluses and continue with the 12 hours of continuous J feeds at night until his weight improves.
*Added a daily pro biotic
*Added a daily vitamin
*We will start giving him Duocal 4x daily. This is a powder supplement that dissolves in water that will add calories without volume to help with weight gain
*He will be starting an aggressive outpatient feeding therapy twice a week with both an OT and speech therapist. Obviously we are giving him everything he needs by tube right now until we get him up in weight. I imagine it will be awhile before we can cut back on volume in an effort to stimulate appetite again. We need to build a buffer so he has some room to lose a little.
Right now both he and Elliot have pretty nasty colds and coughs. It's not been to fun for either of them but they seem to be improving. Noah is up alot through the night coughing but it hasn't slowed him down during the day. He loves playing outside with Zane and the two of them would stay out all night if I would let them. He is getting more and more comfortable with people, it is such a welcome change to see him interacting and playing when people are over or we are out.
In just a few weeks we will be celebrating his 2nd birthday...what a blessing!

Sunday, May 10, 2009

Mother's Day

I have learned so much from not only my own mother, but all the mothers I have met these past few years. One thing I have learned is that being a mom is not defined by how many diapers we change,(there are moms who haven't changed any), it is not defined by how easy or difficult our labor was,(there are moms that have never been pregnant), it is not defined by the number of hours we have spent with our children, or by the daily runnings, shoe tying, nose wiping, ect, ect, ect....To me, being a mom is simply defined by the love we have for our children. It is that love that moves us to do anything and everything we can for them. From the mom that puts thousands of miles on her car running kids to this or that, to the mom who sits by her child's bedside in the hospital, from the mom who devotes her life to raising awareness in memory of a child lost, to the mom that runs the PTA. The love for a child is the most amazing, beautiful, unmeasurable love there is. Loving our kids is a full time job, 24/7, no matter where they are, what they are doing, or how old they are.
I am so blessed to have been given three beautiful boys to love, each one of them so different, but loved just the same....
I hope you are all having a Happy Mother's Day!

Monday, May 4, 2009

Update # 2

Now for Mr Noah! He went to the pediatrician last week as well for a check up and shots. I tried to express to the Dr a few concerns and ended up leaving frustrated and second guessing myself. We know that Noah hit some sort of wall about 6-7 weeks ago with eating. He was doing so well and out of nowhere, stopped eating and drinking. In the last week he has picked up a little, but nothing like he was. We are now back to feeding him through the J all night and giving 2 boluses of formula and 5 boluses of water during the day through the G-tube. I have noticed that as the day wears on, his eyes appear sunken in and dark underneath and his color is sort of pale and grey. The past few days I have noticed slight swelling in his hands and feet. He has always had a few "potty" issues, but I have noticed these now more than ever as well. I voiced all this to his Dr and inquired about anemia or vitamin definciancies and she said that he should be getting all the vitamins he needs as well as iron through his formula. She suggested that his coloring and sunken eyes could just be that he is tired. Of course I don't want to put Noah through anymore than he has been through, but I really think he needs some labs drawn and a deeper look into what may be going on with him. The pedi wrote a script for outpatient OT with a feeding specialist and speech therapy as well. I spoke with Jeannie at U of M and she suggested that they draw a CBC and check vitamin D. The pedi said it was unnecessary and to just wait it out. I know in my gut that something is going on, I just don't know what, but I will bet it's not just that he is tired... We are going to try adding in an extra vitamin, daily probiotics and good old fashion Mylicon drops for gas.
We had our first evaluation with the OT feeding specialist today and it could not have gone better! I was terrified that Noah would not tolerate it and his anxiety would be at its prime, but he warmed right up to her and played with toys. By the end of the evaluation he was walking the halls as if he owned the place, waving, blowing kisses and yelling, "luh loo, luh loo!!" (love you) The OT was FABULOUS and I instantly felt that she totally understood. She agreed that it sounded as if something else was going on and lab work would be very helpful. Feeding issues are so frustrating and there are so many opinions and schools of thought when it comes to tube fed kids and oral aversions. It was so nice to have someone that looks at the whole picture and has so much experience with these issues. He will have his speech eval next week and the two therapists will get together and come up with a plan. I am really looking forward to making some headway!
So, I am going to call the pediatrician back this week and make another request for some lab work. I know there are some nurses out there in blog world, I would love to hear any suggestions!

Monday, April 27, 2009

Update # 1

I figured that I would break this update into two different posts so there wasn't a novel to read all at once!
Things are going pretty well with the boys. Elliot had his check up and shots last week and did very well. He is up to 12lbs 6oz already! He can wear Noah's diapers now! He is doing great at night and will go for a 7 hour stretch before he wants to eat again. It feels great to be getting more sleep and I surely didn't anticipate it happening so soon! He is super smiley and making all sorts of happy baby sounds.
Zane is good as usual and keeping very busy. He only has a month left of school, which does not seem possible. He will have the next two months free to enjoy his summer before football starts. Right now he is getting ready for the school triathlon in two weeks. He has to ride his bike for 2miles, run for 1/4 of a mile and swim for 1/4 of a mile. He is really excited about it! He is still active in cub scouts and lots of activities for school. There is always someone at the door after school and on weekends wanting him to come out and play and the phone is always ringing! There are no boys in the neighborhood so its just girls to play with. Zane doesn't seem to mind at all...:)
We are loving the weather!! We are outside as much as we can be. Noah loves being out in the dirt playing in his water table. He and Zane found a bag of water balloons left over from last summer that have kept them both very entertained!

Friday, April 10, 2009

Feeding Frustrations




So our big plan to start weaning Noah from his tube feeds has backfired...
For the last three weeks or so, Noah's oral intake was starting to suffer and is now back down to almost nothing. It has diminished into only taking a bite or two at a meal and often refusing anything. We have no idea what is causing this and can't understand why backing down on tube feeds has not stimulated any sort of increase in appetite. He had a check-up with his pulmonologist this week along with a chest x-ray. I was terrified that the x-ray was going to show reherniation or something that would account for the change in appetite, but thankfully the x-ray actually looked pretty good! The Dr was not happy about his weight and I tried to explain that we were trying to wean the feeds because he was eating so well just a few weeks ago. We have found that every Dr, according to their specialty, has a different opinion when it comes to feeding. His pulmonologist was not in agreement with the wean and actually wanted us to increase his calorie intake by about 400cal per day. We talked to the dietitian up in Ann Arbor that we have been working with and told her of the Dr's concerns, Noah's current weight and length as well as his aversion to food these past few weeks. Needless to say, we are back at square one. Not only are we increasing his nightly feeds, but we are back to trying to bolus him through the G portion 3 times a day along with the water bolus as well. We are going to do this for a few more weeks and try and get some more weight on him, and go from there. I know that this increase in calories is not going to do anything for his appetite, but I also know that it is important for him to have the proper nutrition and fluids. I just wish I could figure out what causes the inconsistency with his appetite. Despite his feeding issues, he is doing great. He is walking everywhere and launching into the terrible two's. His speech and communication skills seem to improve everyday. I am in awe of this little person he is becoming with his own personality and character.
Zane is doing great and had an AWESOME time in Seattle! He really wants to move there now! Thanks to Kelly and Jeff and the boys for showing him the sights in their new home and giving him such a memorable Spring Break! He hasn't stopped talking about it since he got home! I am so glad he got to have that experience. He is now more traveled than I am!
Elliot is doing well and thriving! He is getting to be such a roly poly! He will have his two month check-up and shots this week:( Poor guy! He has developed a dashing smile that melts the heart and will push up on his arms and roll from his tummy to his back. Noah is sure to shower him with kisses and hugs all day long!
A quick "proud Momma" moment...the other day I took all three of them to the post office. I was happy that no one was there when we first walked in, fearing that the boys would be unruly. (I swear they can smell my fear!) Within minutes there were like 15 people in line. I was trying to juggle my items to ship and Elliot's car seat, all the while praying that Noah would behave. I glanced back at Zane and he had Noah sitting quietly by the counter, his arm around Noah to keep him from bolting and each with a sucker in their mouth. Zane said, "I got it Mom, don't worry". I don't think my heart could have gotten any bigger at that moment!
Have a happy and blessed Easter!