The Baker Family

Happy New Year!

2012-02-01T09:23:00.000-08:00

What a bizarre winter...as I right this it is 50some degrees at the end of January! No complaints here!
Not a whole lot new to update about..thankfully! No news is usually good news when it comes to Noah! Overall he has been doing great and been pretty healthy since Christmas. **knocking on wood**
In terms of eating/feeding...He is eating great! Small, but frequent meals as usual. He still struggles with weight gain. Despite the 1800-1900 calories he gets between oral meals and tube feeds, we just can't seem to get any muscle or fat to stick. Since his last hospitalization when he was so sick and he was working so hard from a pulmonary aspect that he couldn't metabolize his breathing treatments, the Dr's have been again saying that his metabolic needs due to his lungs are tremendously high. I spoke with the dietitian yesterday and we are once again looking for ways to add more calories to his day. We will be adding another meal for a total of 6 oral meals a day, two compressed tube feeds through the pump in his backpack during the day, and his usual continuous feeds through the pump at bedtime. He is sensitive to protein and milk casein so there we are somewhat limited to what boosters we can use. We will be trialing some MCT oil this week. We are doing blenderized formula during the day and Compleat at night.
In terms of school and development.....He is currently into his 2nd year of the special needs preschool through the school system. This will be the last year before Kindergarten. After some lengthy talks with his teacher and reviewing his testing it is obvious that he is not ready academically for kindergarten. He is making progress, and the teacher says she is not nearly as concerned with the amount of information he knows, but more importantly, the length of time it takes him to learn. For example, we have been working on counting for the past two years and he can not count past 5. This being said, we thought that we would hold him back and put him into a community pre-k program for next year, but due to his anxiety issues, the teacher and I both agreed it may be in his best interest to continue on to kindergarten at his present school. He is familiar with all the staff, many of the older kids, the teachers, the environment, etc. Putting him into a new environment next year would be like throwing him to the wolves. We assume that by doing this, he will most likely repeat, but at least he will be able to thrive in familiar surroundings. The goal is half day kindergarten and half day home program.
Neurological.....we have been seeing a child psychologist with Noah for his anxiety issues as well as potty training. He has strongly recommended a neuro consult with a possible MRI of his brain. He says there are some clear issues, but whether they all stem from his medical background or a possible issue from being on EMCO, they aren't quite clear. That's not a quick process. We have been on the waiting list for a neuro consult for months. I am hoping by spring, he will be able to be seen.
Transfer of specialty care....we have slowly been putting together a good team of Docs here in Ft Wayne. While we love, love, love U of M. It's soooo very nice to have a go-to person that is local. We will be transferring his GI care over to a great new GI specialist here in Ft Wayne. We will see him the end of Feb and I am looking forward to a new perspective.
Pulmonary.....Since his last hospitalization they have changed some of his medications around and we will be following up with his pulmonologist in a few weeks to get his thoughts thus far. He has also talked about doing some lung function testing and an ECHO. Not sure if this is still in the plans or not.
Sorry that turned into a novel!
Elliot and Zane are doing great! Zane is just getting into the wrestling season and loves it. I, however, am not enjoying being his guinea pig for new moves. They boys have taken over with that and obviously love the attention! Elliot is about to celebrate his 3rd birthday!!! I wanted him to have all the say in the party planning but the only thing he will commit to is that he wants "cheesy goldfish" to eat, and "the piggy from the zipline commercial" to be in attendance. I may have to intervene slightly...:)
Thank you so much for checking in on us and I hope this finds everyone doing well!!

Tis the Season....

2011-12-06T04:55:00.000-08:00

Cold and flu season is officially in full swing and it's only the beginning! Zane kicked things off with a really nasty respiratory bug that went into his lungs and stuck around for a few weeks. He missed a few days of school and felt pretty rotten, but managed to handle it pretty well. Not sure if Noah picked that up or something new altogether, but it hit him really hard and week or so afterward. We started off with steroids and lots of breathing treatments, but after a week of no progress, he was admitted to the hospital. He was in bad shape and was requiring lots of oxygen, rescue treatments of IV steroids and lots of breathing treatments. He tested negative for flu and RSV so we assumed it was just something viral that got him down. All the boys have had their flu shots, but it has never really kept them from getting it in the past, just reducing the symptoms I presume. He was in the hospital about 5 days and missed a total of 3 weeks of school. His doctors gave him the blessing to return with the understanding that if he got sick again requiring O2 and steroids, they would recommend he be homebound the rest of the winter. We did pull him from gymnastics, but are really hoping he can stay in school.
In terms of feeding and tube issues, we are making some changes. We seems to be forever stuck at the volume issues. He is eating great! He is now self-feeding age appropriate foods but we just can't seem to get anywhere near what his caloric needs are into him orally. We always get more bang for our buck calorie-wise with the purees, but he has come so far! He still can only handle very small, frequent meals and the majority of his nutrition comes from the feeding tube. We have been introducing blenderized tube feeds along with his Compleat formula. As he gets older, I really think it is so important to be giving him real food and get away from all the formula. The feeding clinic in Evansville gave us some great literature about how kids with volume sensitivity have been so much more successful with blender diets. We recently spoke with a great therapist in town that graciously gave me some of her time to offer some great suggestions that I can't wait to get started on. More on that later!
We will be taking Noah to a child psychologist for some of his anxiety issues and potty training. I am soooo looking forward to this appointment. Anxiety has always been a huge issue for Noah. It is the front runner to his potty training issues as well. I could go on for hours about this topic that we have been working on for a year and half now. I won't get too much into it, but there are some serious roadblocks that have nothing to do with his medical issues, and everything to do with his psychological issues. With the the help of his amazing teachers at school, we have tried everything in the book and determined that it's time to get some professional help! On the bright side of this, with all the potty training action going on, Elliot is now officially potty-trained, with the exception of an occasional accident. Noah is his biggest cheer leader and always tell him how he is so "powd of him" Ha! When Elliot starts to to the dance, Noah will say, "Elliot, you have to go potty? Don't wait too long!" Sigh....
Aside from all this, we are all doing great, getting into the holidays and anticipating snow. Santa is the hottest topic in the house after a recent visit over the weekend. I got a picture (promise to post) with all the boys and Santa. You can imagine Zane's enthusiasm there:) I was pleasantly shocked that Noah sat, for the first time ever, on Santa's lap. I think it was a big help that his chatty little brother was on the other knee asking, "Where's your reindeer, where's your elves, why are you wearing gloves, why are you big," and a barrage of other questions at a rate of speed that made it physically impossible for Santa to get a word in edgewise.
One last thing! Leslie (baby Aiden's mommy) and I are collecting new books to be given out at Mott Children's Hospital in Ann Arbor in honor of our CDH boys. If you would be interested in donating a book, please message me for details. These books are so very appreciated by kids in the hospital, and especially so when they are there over the holidays! It truly brightens their entire day!
Thank you for checking in on us!

It's been awhile...

2011-10-05T19:13:00.000-07:00

I know that it's been forever (once again) since my last post... In my last update I told you about our friends Greg and Leslie whose unborn son had been diagnosed with CDH. Baby Aiden graced this Earth for 25 days before he was called home to Heaven. He fought so very hard to stay and his incredible family was with him every step of the way. I was truly honored to have met him and can say without hesitation that he was one of the most beautiful and precious little angels I have ever seen. Perfect in every way. I am so thankful to Aiden for bringing our families closer.
I had also mentioned another CDH warrior, Grace, who had been fighting so hard at U of M as well, since March of this year. Sadly, she was also called home to Heaven just a short time before Aiden. I am heartbroken for these families, that they have to cope with the unimaginable loss of their beautiful babies. There isn't a day that goes by that I don't think of Aiden and Grace. I know that their time here was short, but their purpose will spread far and wide. Their message and blessings will continue on forever and be able to touch those whom they have never even met. What powerful, amazing souls.....

Prayers for a friend

2011-05-17T05:15:00.000-07:00

They say that CDH occurs in 1 in about 2500 babies...with a statistic like this you would never think that someone you know would also be affected. A few weeks ago, our friends Greg and Leslie were told that their unborn baby boy had a diaphragmatic hernia. Leslie is due the middle of August and they also have a three year old little boy, Cole. The couple has been through their CDH workup (ultrasound, ECHO, and MRI) at both Riley and U of M and have chosen U of M to deliver. Their initial prenatal testing is coming back with very encouraging numbers so far, but as we all know CDH is not always predictable. They have an amazing family and a great circle of support. Would you please keep them in your prayers during this long journey, that they will continue to get good prenatal results and peace throughout the planning and waiting for Baby Reed's arrival this summer? I have added a link to their blog as well...
A benefit is in the works for Greg and Leslie and will take place on Friday, July 8th from 6-10pm at the Shiloh in Huntertown. I will post more as it gets closer but we are anticipating a silent auction, kids games and activities, Texas Hold-em, giveaways, and dinner, for the evening. Currently we are still looking for donations for the silent auction. If you are interested in donating or helping out the evening of the benefit, please contact me! (carrielynn999@hotmail.com) Thank you!!!

Also, Baby Grace is in need of some prayers right now. She is also battling CDH in the NICU at U of M. She was on a great upward trend and is now hitting many bumps in the "CDH" road. The devestation of this diagnosis prenataly is hard enough, and to go undiagnosed until birth would be unimaginable. Please keep Grace and her family in your prayers....

Random updates....

2011-05-15T18:28:00.000-07:00

All is quiet and well, which is always a good thing! Despite a small respiratory illness, Noah has been pretty healthy over the last month! We are cautiously optimistic that the c-diff and colitis issues are a thing of the past. He continues to do well in school and we had his annual IEP meeting a few weeks ago. He has displayed good growth over the school year despite his hospitalizations. We are continually amazed at the changes in him since he's been in this preschool program! His teacher still has some concerns in a few areas, one being his gross motor skills. He has very little core strength and very low muscle tone. They are recommending he start PT again and will he will most likely receive PT weekly during the next school year. They have also been observing that learning is very difficult for him. He has a very hard time with memorization, colors, number, letters, etc. Learning in general is a struggle. Based on these and other issues, he will continue on in the special needs program next school year and not mainstream into a community preschool. We love the program and strongly feel that the one-on-one learning environment is good for him. Although we would have loved to hear that he was ready to be mainstreamed, we are confidant this is the best decision for him.
In terms of feeding, he is actually doing awesome. The Neurontin continues to manage his visceral pain and as a result, his oral intake stays pretty steady (minus times of illness). Despite his efforts, he still isn't gaining any weight. Over the past year, he has slowly been backing down the growth chart. We've manged to get back what he lost with the past hospitalizations, but he is still on a truckload of calories (from the g-tube and food boosting), yet gaining nothing. His surgeon isn't sure if it's an absorption issue or metabolism issue. We will be heading up to U of M for a little CDH "maintenance" in the next few weeks and hope to meet with the dietitians to discuss some any ideas they might have. He is still on 10 hours of night time feeds and small tube feeds during the day and averages about 200 cal orally per meal.
Zane and Elliot are doing great! Zane's baseball team is unstoppable this year and he is playing great! He is still doing awesome in school and already anxious for middle school next year (gulp). He asked me tonight if he could start wearing cologne?? This from the boy who battles over taking a shower? I am wondering why the change, but something tells me it isn't for Mom...I am so not ready for this. Elliot doesn't stop from the second he wakes up till the second he goes to bed. He is always moving, talking (yelling), eating, and mostly getting into trouble. He has mastered the art of getting himself out of trouble with spontaneous displays of affection and dropping a few "I luff you's" when he knows he's done something wrong. They learn so early don't they?
That's about it from us! I never mind it boring!! Thanks for checking in on us!

CDH Awareness Day - March 31st

2011-03-26T17:13:00.000-07:00

Each year we have tried to plan some event or collect donations for RMD in honor of CDH Awareness Day, but this year with Noah being sick these last few months, and time simply getting away from me, we haven't planned anything. Many families are sharing their child's personal journey during this time and I couldn't think of a better way to get the word out then this. It was, after all, someone else's story that helped us so very much at the beginning of ours...
After having a miscarriage 4 months before becoming pregnant again, we found out very early into this pregnancy that we were once again expecting. There was an extreme level of fear and anxiety as the weeks passed, praying to make it to the second trimester. On Dec 15th, 2006, at 15 weeks pregnant, we had an ultrasound that would forever change our lives. We were told that our baby had a possible diaphragmatic hernia and that it appeared that his stomach was in his chest cavity and his heart was pushed to the right. As many that are first diagnosed, we had never heard of CDH. We were referred to a specialist two hours away, but it was Friday and we would not be seen until Monday. Immediately, I went to the Internet and spent the first of many, many days, waiting for more answers as to what was wrong with our baby, whom we named that very weekend, Noah. We traveled to the specialist on Monday who confirmed our biggest fear with a level III ultrasound that our baby did indeed have a congenital diaphragmatic hernia. At this time, because it was so early, it was difficult to tell the severity of the defect and there were still more questions than answers. We learned that this defect affects 1 in 2500 babies, that the cause is unknown, and the most sobering fact that currently the survival rate was only 50%. CDH occurs when there is a defect or hole in the diaphragm allowing abdominal organs to float into the chest and severely restrict the growth and proper development of the lungs. We were told by this same Dr that CDH is sometimes part of a syndrome and that an amnio should be done immediately to rule this out and get a better feel for any other issues he might have. We were told that more follow up and testing would need to be done closer to 25 weeks and were sent on our way to wait for the results of the amnio. Another grueling 3 days and countless tearful prayers, we were told that Noah had no chromosome abnormalities. Our first victory. I will never forget that phone call...from that point on, we talked to who ever would listen, we sent hundreds of emails to surgeons all over the country, and began talking with other families affected by CDH. We did the only thing that we could at that point for our baby, arming ourselves with knowledge. We set up appts with three different hospitals in consideration of finding the best place for Noah's delivery. By this point we knew that babies born with CDH were incredibly sick at birth, many of which needed ECMO, a heart-lung bypass machine and could possibly endure a hospitalization of up two 3 months or more. The Dr's from the first hospital we went to told us that based on the test results Noah had a less than 2% chance of survival and he may possibly not even be offered treatment at all. Broken hearted, we spoke with another hospital that told us about the same news. Our third and final trip was to Ann Arbor Michigan at Mott Children's hospital. We were told at that time they see up to 25 babies each year with this diagnosis and have around a 65-80% survival rate. Based on testing here, they thought Noah had an excellent chance. This was it, this was were Noah would be born. Aside from close monitoring, I had a very uneventful and easy pregnancy. Finally a month before my due date, we moved into the Ronald Mcdonald House to wait for his arrival. It was crucial that I not go into labor at home, as it would be difficult if not impossible to transfer him to U of M in time. On June 7th, 2007, Noah was born, full term via c-secion at 8lbs 10oz. We heard him cry almost right away, which was music to our ears,because we were told he would not be able to cry due to his small lungs. This was our first sign of hope. He was immediately placed on a ventilator and after 24 hours in the NICU we were told that due to severe pulmonary hypertension (high blood pressure in the lungs) he was in very bad shape and would need ECMO immediately. Soon after, he was cannualated and put on bypass to let his heart and lungs rest. He remained on ECMO for 7 days. On his 14th day of life he had his diaphragm repair surgery in which they removed his stomach, spleen, intestines, and part of his liver from his chest cavity and put back into his abdominal cavity. They repaired his diaphragm and we were told that due to the amount of organs developing in his chest, it left very little room for his lungs to grow and develop. Not only were his lungs small, but they did not develop properly. The air sacs and blood vessels were not what they should be. The repair surgery itself, was probably the smallest part of his actual recovery. We were finally able to hold him for the very first time when he was three weeks old. He remained on a ventilator for 27 days until he was able to breathe on his own. After 6 weeks, he came home for the very first time...The day we thought may never come. Words can't even begin to describe this day.
So many CDH kiddos have feeding problems for a combination of reasons. Due to Noah's prolonged intubation, improper development of digestive organs and various other reasons, he still has issues with eating and remains about 75% tube fed. Since his initial discharge from birth he has been back in the hospital for several other surgeries and numerous illnesses both CDH and non-cdh related. He is delayed developmentally due his many hospitalization and surgeries, but is catching up each day. He has overcome so many obstacles and is growing, thriving, and bursting with personality as a happy, almost, 4-year-old.
The experience has forever changed our lives and there are hardly words for the emotions that have come along with this journey. The families that have come into our lives as a result are some of the greatest people we have ever met. I think there comes a point, maybe somewhere in a hospital waiting room, when you are sitting next to others sharing the same nightmare, that words are no longer necessary, and bonds that last a lifetime are formed. We have been abundantly blessed with a steady stream of support from our family and friends. I mean this wholeheartedly when I say, we couldn't have gotten through this without you. We hope that through Noah's story, we can reach other families affected or newly diagnosed with CDH. We hope to be a sounding board and support system along the way. As I said before, it was the stories and support of others that led us along the way and forever grateful. We are so very thankful that God chose us to be Noah's parents and that He has carried him through, hopefully, the most difficult years of his life. There are so many people behind his care over the years, his amazing surgeon, and his surgeons nurse, our OB and his staff, the countless therapists both here at home and at the feeding clinic, as well as his dr's and specialists. Along with all the other families fighting to spread awareness about this defect, we hope that some day there will be more funds for research that will ultimately lead to a cure. We hope that until then that families diagnosed will not feel alone, but will know of others out there, and be strengthened by their stories and be aware of all their options, including second (third, fourth, etc) opinions.
In honor of all the CDH kids both here and in heaven, please help to show your support on Congenital Diaphragmatic Hernia Awareness Day by wearing turquoise on March 31st and tell just one person why. Thank you again for all of your love, prayers, and support!!

Blog slackin' again!

2011-03-13T20:35:00.000-07:00

Noah did make it home after his 10-day hospital admission. I didn't even realize that I hadn't updated the blog! He has been improving greatly since then. Upon his return home, he was getting 14 doses of medication daily but he has now been switched over to a pulsing dose of Vancomyacin that he gets only every other day. The colitis/c-diff symptoms are well controlled and I hope to get a negative culture back from him in the next week. We followed up with Pulmonary and due to the damage to his lungs from the RSV, they recommended we increase the amount of inhaled steroids and keep him out of school for at least the next month to avoid another illness. We understand illness in inevitable, but the longer we can keep it at bay, the better! This will just give him a good chance to recover and get his strength back. We haven't seen any respiratory issues since he came home and hopefully we can keep it that way for awhile. It's hard to tell if the c-diff will rear it's ugly head again. We have been told that multiple recurrences of it may indicate future problems, but it's really hard to say. He will continue the antibiotics for several more weeks so hopefully it will be eradicated. Time will tell. There is something to be said for a healthy colon!
Zane and Elliot are doing great. Zane had baseball tryouts this weekend and I will be attending his middle school orientation this week. That's a little hard for me to stomach at this point, but I suppose I should get used to the idea sooner or later!
More later and pictures too!

Elliot's 2nd Birthday

2011-02-16T19:33:00.000-08:00

Today is Elliot's 2nd birthday!! My little man is two! It hardly seems possible. I have been reflecting on our posts from the week he was born and in the NICU and it blows my mind that it was two years ago!! He has grown into a rough and tumble, short and stocky, brilliantly mischievous, playful and happy little boy (and incredibly handsome I might add!).
This is the 2nd year that Elliot's birthday party was planned and had to be rescheduled because of illness. I am sure he will remember this in years to come and I am going to owe him big time! I think Grandma just might be spoiling him a little today, and Brian will make sure there is some birthday fun even though we will be celebrating again when Noah and I get home.
I also wanted to say how grateful I am for our family and all that they have done for us through all of the illnesses, feeding clinics, and hospitalizations over the past 4 years. I am so very, very grateful for all they have done for us!! We never could have done any of this without you!!
The doctors are saying that even if everything goes perfectly the soonest we will get to come home is early next week. They are putting plans in place for going home, but have said "he still has quite a bit of work to do here first". Given that, Brian is coming up tomorrow and we will be switching out for a few days so I can go home and see Zane and Elliot. It's going to be hard to leave Noah, but now that he is feeling better, I need to go see the boys. I am missing them like crazy!!!

Trial off oxygen

2011-02-16T08:43:00.001-08:00

They have been trialing Noah off oxygen since yesterday and he mseems to be doing pretty well. He is working really hard in terms of breathing but keeping his saturations up. His lungs still sound bad, but are showing improvement daily.
In terms of the c-diff/colitis, they attempted to start him on some slow feeds last night and it wasn't long before he was retching and very uncomfortable. They stopped the feeds and put his tube to drain and let him sleep through the night comfortably. They are going to attempt to restart feeds today at a much slower rate to see how he does. They c-diff symptoms are still there, and if they don't improve in a day or so, they may have to come up with an alternative plan. This seems to be a particularly resistant strain of c-diff so we know it's not going to be easy to get rid of. He is has had it since before Christmas. There has only been about a week during this time that he went withought symptoms.
Although we still have a ways to go, I am thrilled at the improvement and it's so great to see him smile again!!!

RSV is slowly improving

2011-02-15T06:02:00.000-08:00

Finally, a much needed restful night for Noah. His cough is subsiding and giving him some peace and quiet. He still has a ways to go in terms of breathing but it is definatly improving. It is so nice to see him restful!!!
Will update more later!

Bad night...

2011-02-14T06:59:00.000-08:00

Noah certainly gave the docs a run for their money last night...He continues to have respiratory issues due to the RSV. Last evening he kepts having what we think were major bronchospasms and kept dropping is saturations. They were going to move him over to ICU but the pulmonary team came to look at him and increased his oxygen and switched him over to longer acting bronchodialator as well as gave him a narcotic to help him calm down and rest. He was able to recover from the incident and was not moved to ICU. They are not especially wanting to supress the cough for fear it will turn into a pneumonia, but the nonstop coughing is just too much for him. His respirations are still in the 60's at rest. The dr's keep telling me that the RSV will peak and then slowly improve, so we are all hoping that last night was the peak.
As for the c-diff, he is still being treated with the same regimen of IV Flagyl and oral Vancomyacin. He will come home with a picc line so that we can finish the IV Flagyl. When that course is complete they will continue a pulsing course of Vanc, where he is given a dose every 3 days for up to 6 weeks. His belly x-rays look better but he is still having diarrhea and lots of belly pain. For now he is still on the TPN, but the docs are hoping to start feeds sometime soon. It's hard to tell exactly where we are with eradicating the c-diff until the RSV improves.
Brian is at home with Elliot and Zane. Elliot came down with RSV as well (or we presume since they started symptoms on the same day). He is doing okay, but will see the Dr this morning to be checked over. He is also doing breathing treatments and struggling with high fevers. Zane (knocking on wood..) is healthy for now and should probably soak up the quiet time before his brothers are terrorizing him again! Which I hope is soon!!

C-diff and RSV

2011-02-13T06:30:00.000-08:00

So in my last blog post I explained that Noah had been quite ill with c-diff and was in the hospital. He stayed 7 days from that admission and we were home about 3 weeks when he got sick again. The c-diff came back very aggressively again along with a viral lung infection that turned out to be RSV. Due to his chronic lung conditions he is having a very hard time with the RSV. He has been treated with Flagyl and Vancomyacin for the entire duration of the illness but it still does not seem to be effective enough to put the colitis in check. He was readmitted to the hospital 3 days ago. When he was admitted this time, his abdominal x-ray looked very bad, much worse than his previous bout. For the RSV he is now being treated with steroids, oxygen, and breathing treatments. For the c-diff he is being treated with IV Flagyl, Vancomyacin, and probiotics for now. We had a consult today with the infections disease team to come up with a new regimen to get this under control. They did also place a picc line in order to give him TPN and lipids and let his gut rest from tube feeds.
Overall, he is just miserable between the relentless coughing and abdominal pain. I am certainly looking forward to healthier days....

C-diff/Colitis

2011-01-14T13:53:00.000-08:00

Noah has been sick off and on for the last several weeks and tested positive for c-diff last week. He started oral Flagyl right away and after 8 days, there was still no improvement. On Wed, he got quite a bit worse and his pediatrician wanted him admitted. They didn't feel comfortable having him admitted at home, so they sent us up to U of M Wed night. Since then they have started Vanco and IV flagyl and IV fluids. He has had fevers off and on, belly pain and the ever-present diarrhea. The decision was made this morning to take him off tube feeds altogether and start TPN to let his colon and stomach rest. I am not sure how long he will be here. C-diff is so rough on anyone and Noah is having an especially hard time with it. Hopefully the weekend will bring some improvement!

Where did the time go?

2010-11-13T20:27:00.000-08:00

Holy smokes have I let the blog go by the wayside! I promise that I always have the best of intentions, however, thinking and doing are apparently two different things..
ANYWAY...
All is well with the Bakers, the boys had a spooktacular (bad joke) Halloween and I am sure there is enough candy around here to fuel a small army at least. Noah came up with his costume idea all on his own and Elliot wore an old hand-me-down Elmo costume of Zane's, the original owner. Zane went back and forth and finally settled on Davy Crockett.
We've had LOTS of illnesses, too many to count and both Noah and Elliot have had tubes in their ears over the course of the last few weeks. Both recovered beautifully and neither have been ill since **knocking on wood**. Elliot will actually be making another trip to the OR this coming week for an inguinal hernia repair. Poor guy is following in his brother footsteps. Noah had the same procedure done last year. I am hoping **again with the wood knocking** that this is it for awhile at least and we can get through the rest of the winter without any major illness and surgery.
Both Zane and Noah are having a great school year. Noah continues to thrive and we are seeing big changes in him! I love it!
We have made some changes in Noah's tube feeding and for the first week we saw huge advances in his oral intake. We didn't change his calories at all, just the time in which he was getting it. He's not doing quite as well as he was in the beginning, but it's still better than before we made the switch. All in due time I suppose!
I will try to get some Halloween pics up this weekend!!

Sick of being sick!

2010-09-27T20:04:00.000-07:00

We have been battling illness around here for months! Noah has been on 6 different antibiotics since the end of July! This is crazy! He has had back to back ear infections and respiratory issues off and on. Of course our last visit to the pedi led us to an ENT consult, which you may have guessed, is leading us to tubes. As of now, Noah is schedule for tubes and another ABR on Oct 22nd. This should be a very simple, easy, outpatient procedure for him and we will know once and for all, the extent of his hearing loss with the results of the ABR. In the middle of all this, Noah's g-j tube came out and we replaced it with a g-tube and he has been doing so well with it that we are not going to schedule for a g-j replacement. He is tolerating his overnight feeds and small boluses during the day. He is still eating great, of course, it's just not enough to sustain him. Weight is a constant issue, even with the feeding tube. BUT the important thing is that he is mastering the skills of chewing, eating, swallowing, texture, etc, etc, it's still volume and pain that holds him back.
Following in his brother's footsteps, Elliot has also been sick. He had a bad case of bronchiolitis that landed him with breathing tx and meds along with several ear infections, which is also leading him to tubes...blech. I am just hoping they will both be healthier when these are done. We are still waiting for a consult with ENT for Elliot before anything is scheduled.
We will be celebrating Zane's 11th birthday tomorrow!! He is so excited! The ole cliche, "Where does the time go?"....I can't believe it! I am so proud of him! He is growing up to be a ~~young man~~ still my baby boy!

Preschool

2010-09-01T05:32:00.000-07:00

All summer we have been pumping Noah for school. We have read books, visited the school, shopped for supplies, and talked about it every night before bed, in preparation for the big day. In his IEP, they really wanted him to work up to riding the bus to and from school every day and work up to going 4 days a week from 8-11. We live walking distance from the school, and the ride there and home is less than 2 min, but they felt that it was going to be such an integral part of this whole experience for him to have the separation at home and the independence of doing this on his own. Anxiety is HUGE for Noah, especially with separation in situation that he does not feel 100% safe and in control. Even after weeks and weeks of feeding therapy, he still would never go to the treatment rooms w/o me even though he was totally confidant of what would happen in there. So, I spent weeks agonizing over this, thinking sure I would be taking him and dropping him off for weeks, if not months, until he worked his way up to wanting to ride the bus. My stomach was in knots thinking about how scared he would be and second guessing if it was right to put him through this. I was sure that I would be called daily because he needed to come home because he couldn't be consoled....
Then the big day was upon us...

The actual putting him on the bus part was quite ugly. Brian and I were an absolute wreck after doing it. I felt HORRIBLE...until about 5 min later when we got a call from his teacher saying he was at school safe and sound and was smiling? What?? Noah? Not only did he stay the entire day, but he has stayed every day since then(minus some sick days). I have never had to take him or come pick him up early. He LOVES the bus and school! We can't believe how well the transition has gone! We are so so proud of him!!

5th Grade!!!!

2010-08-13T05:34:00.001-07:00

Seriously??

5th grade already? Last year of elementary school?

Don't you love the evil glare he's giving me because I told him I wanted a picture of him getting on the bus??

Don't worry, I promise I didn't follow him out...I took this picture from inside. I was also informed that I was not aloud to scan his baby pictures to be included into the post......sigh...fine.
Seriously though, I remember his first day of preschool and now he's in 5th grade...I remember the days he used to watch Woody Backpacker (Woody woodpecker) and when he would ask me to play in the Uncle Peter room (the computer room, ironically enough he does not have an Uncle Peter)....his favorite Sesame Street video (that happened to be in Spanish, I can still remember some of the songs!)....his blankie...his 3'tall Spiderman doll that he used to hide in the shower to scare me....his fist Halloween costume..(tigger, then Elmo, but my all-time favorite, the MiMi-made Buzz Lightyear..)...the first time I held him after 24 hours of labor and a c-section...(my babies like to be difficult)
OKAY I NEED TO STOP!!! sniffle, sniffle....it just happens so fast, right before your eyes! I'm so darn proud of him!

Home!

2010-08-13T05:10:00.000-07:00

We've actually been home since last week, but I haven't really had much time to update the blog. We decided to pack it up and come home a little early because Noah wasn't feeling any better. He was having major pain in his groin area that we thought may have been a UTI since is was most concentrated in the morning and throughout the night (when he's hooked up to tube feeds). We did an urinalysis and culture in Evansville, but everything came back negative for infection. He has been on an antibiotic for weeks, so I am sure if there was infection it was masked by that. We got him into the pediatrician when we got home and his ear infections were raging once again and they found a swollen lymph node in his groin on the side where his g-j tube goes. His tube is going bad anyway, so it was on the list of things to be scheduled. The Dr is wondering if there is irritation from the g-j causing him this pain. We are scheduled to go to U of M for a consult next week. They will look at the tube and decide how to address the chronic tube infections (he has had several over the past year) and swollen lymph node and schedule a new tube placement. He seems to be feeling better, but the pain still comes and goes. In Evansville he wouldn't even walk or stand on his own due to pain, but he's definatly no where near that now. The ear infection is puzzling as well, he never complains that they bother him, and the Dr is wondering how many he has actually had, but we just didn't know it. We will follow up with him in a week and if it's still not clear, he will send us to the ENT.
As far as eating, he's really done pretty good since we got back. He still won't willingly eat if you set a plate down in front of him, but in the theraputic style mealtime, he is still getting in his 2oz of food and 2oz of liquid. He starts preschool on Monday so we are trying to push mealtimes around so we can still get in 4 a day and try to avoid any tube feedings while he is at school. I am just hoping we can get these ear and tube infections under control with minimal trips to the Dr as possible so he can just focus on school and being 3! This is going to be a great year for him!!

Week 2...

2010-07-29T19:58:00.000-07:00

Hard to believe that we are at the end of week 2! This has been a frustrating week...Noah got sick on Sunday and it almost immediately went to his lungs. Poor guy has been coughing and wheezing non-stop. Round the clock breathing treatments and steroids for him! After still not getting any relief, they got us into the after hours clinic to discover that he has two pretty significant ear infections. They went ahead and started him on another antibiotic. The next day he was back into the Dr for a possible UTI. He is having lots of abdominal pain and what appears to be painful urination. They did a quick xray to check his bowel and all looked well. He is already on the antibiotic, so we are waiting for him to improve!
As for feeding changes...now that we know that 4 oz per meal is Noah's limit, they have really been trying to boost his food as much as possible to get as many calories into each meal. This backfired and he started to retain a lot of fluid and all but stopped peeing. At home, we boosted with things like tahini, oils, peanut butter, cream cheese, etc, so they have stopped boosting with formula and gone back to the those for now. He has lost quite a bit of weight and they have suggested we go back to bolus feeding along with his meals during the day. I am hoping that over the weekend he will start to feel alot better and hopefully start to pee off some of this extra fluid. When we go home after next week, we will still attempt to give him both spoonable and chewable foods with each meal, it's just going to be a wicked circle of weight gain and calorie balance. The chewable foods are really just for practice and most of his calories will come still come from the spoonable foods, but not necessariy the texture of a puree.
Since Noah loves to share, he was happy to share his germs with his little brother, sending him to the Dr this week as well. Same respiratory stuff along with allergies. Thank you Grandma B for taking him to the Dr! Since Noah and I are coming home next week, I think we are just going to stay down here for the weekend. It's such a long drive and with both kids not feeling well, I don't think either one would do well in the car! Zane seems to be healthy and is having a great time with MiMi and Pappy right now! I am so extremely ready for us all to be under the same roof again! I don't know why, but this trip seems to be longer than the 8week clinic we did last year!
Despite all the sickness and germs, we were able to get out and have some fun this week. The Vanderburgh county 4-h fair was going on so we went out to see the tractor pull with some of the therapists from clinic and their familes. Noah LOVES tractors, so was in hog heaven (no pun intented, there were actual hogs there too:). After so many days of tears, it was great to see a smile on his face again!
Not sure what next week will bring, I would imagine if he doesn't feel any better, we will pack up and come home early. Time will tell!

Feeding clinic update...

2010-07-24T07:55:00.000-07:00

We had a great weekend with all of the boys. Brian and Elliot came down on Friday and left, along with Zane, this afternoon....:( We were able to get out and about alot this weekend I think the boys all had a great time. I just hate it when they go!
I met with Dr Clawson on Friday and we talked alot about what they have been seeing and thinking since he has been there. She noticed a big difference in the fact that he does actually WANT to eat. He no longer needs the positive reinforcement between bites and never refuses. His main issues are endurance, volume, and his ever-present gut pain. He can only comfortably eat 4 oz before the pain starts, but again, this is a small improvement from last year. He gets soooo tired while chewing that he will actually fall asleep. They also think his small lung reserve has a lot to do with this. I have never actually thought about how much this would affect him from a feeding aspect. She said many CDH'ers struggle with this. Noah is just going to need lots of time and practice. She agreed that it was very unfortunate that Dr Hyman's approach in New Orleans didn't have more of a positive outcome, but she does agree that the g-j tube is best for him, for now. It will be a long time off before he is ready for a tube feed wean. There are only so many calories that you can fit into a 4oz meal. He still has the edema issues when he consumes the higher calorie formulas or juices, but they are experimenting with some different things for supplementation. We are going through his pallet of foods to find the ones that he does the best with as far as chewing and eliminating those that he just isn't ready for. We are hoping to go home on meals that consist of 2 soft chewable foods and one puree along with a drink. The more he works, the more weight he is losing, so we are trying to consider that as well and keep an eye on the weight gain. We will continue to do his chewing and facial exercises before each meal.
We have met some fantastic people both here at the RMD house as well as the feeding clinic. I was talking with a woman that was serving breakfast here this morning at the house, only to discover she also had a little boy born with a CDH and he and Noah are only a week apart in age! We are going to try to get our boys together one day this week.
Thanks for checking in on Noah and I hope you had a great weekend!!

Evansville feeding clinic take 2!

2010-07-20T19:43:00.000-07:00

We are so very blessed and lucky to be back at feeding clinic for another 3 weeks! This was always kind of in the plans when we left last year, but we just weren't sure when it would happen. We are only a few days into it right now, but so far he has fallen right back into the routine. He remembered all the therapists and we've only had a few meltdowns heading to the treatments rooms. He is still retching at small volumes, even with the medications, and 4oz seems to be his comfort zone. I remember when it was only 2oz though, so there is some improvement from last year. He is still about 85% dependant on tube feeds. I think this go round we are really hoping to work on texture grading and endurance with chewing skills. Since volume is such and issue and we have learned the hard way that pushing him to fast too soon is not the way to go. It would just be great to see him eating some more age appropriate foods without tiring so quickly. Today he ate part of a waffle during one of his meals that was cut up very fine and his OT made sure every bite was properly chewed. In between bites of waffle he was fed yogurt for a break from chewing. He retched just over the 4oz mark and was so fatigued from chewing he actually fell asleep afterwards - at 9am! It just takes so much out of him! It is going to be a slow, slow process, but when we look at where he was last year, it really is amazing! They have said it is still clearly obvious that he has pain when he eats, but I do think the Neurontin has helped some with that. It was a little discouraging to see that he has only gained 1 lb from last year, but we did find out that he is now in the 50th percentile for height!
Since we are here in the summer, Zane was able to come with us this time and I have loved having him here. Elliot is home with Daddy and getting lots of love from his Grandma's during the day. We are, once again, so very thankful for their help!! The RMD house opened in January, so we are so blessed to be able to stay here this time. It is BEAUTIFUL!!! It's pretty small, only 10 rooms, but everything is brand new and it's within walking distance from the hospital! Oh and of course we don't do anything without drama, Noah was able to make his presence known the first day when he got his hand stuck in the elevator door as it was opening. Right as the words, "please don't do that" were coming out of my mouth, the door opened and his hand slid right in. The door wouldn't open or shut because his fingers slid right in. It took a few people to "unstick" him, but other than a little emotional trauma, he was not hurt.
Thanks for checking in on us and I hope you are all having a great summer! We will update again soon!

I blame it on the kids...

2010-07-10T10:41:00.000-07:00

for my blog slacking!! Sorry that we have been so out of touch! We are still here, doing great, just soakin' up the summer. We've been busy with vacations, the lake, and all the other great stuff that comes along with decent weather!!
Noah and I are actually getting ready to head to Evansville for 3 weeks of intensive feeding therapy. I PROMISE to put up a decent update when we get there next week!! Pictures too!!!

2010-05-11T19:46:00.000-07:00

Let's say that things haven't exactly gone according to plan, the New Orleans plan that is. As I mentioned in my previous post, about a week into the trial, Noah started having major retching and this continued for over 3 weeks. He lost a lot of weight and wasn't tolerating any of his tube feeds. I was communicating with Dr. Hyman throughout this ordeal and he became very skeptical that this was NOT from a virus and was more inclined to think that Noah is not a candidate for his trial after all. He stated to me that Noah was the first in 50 trials to have a poor reaction. He was insistant upon the fact that Noah should no longer be retching and should be able to tolerate much higher rates of feedings now that he was desensitized and on the medications. His last correspondence with me was to say that he thinks there might be something else wrong with Noah that he is not seeing, and it is too difficult to diagnose via email. His only suggestion was to add more pain meds to the ones he is currently on, one being lydicane, that would have to be administered in the hospital for safety. This is NOT something we were willing to do. He stated since we are not in the New Orleans area (or remotely close for that matter) that he wants to call off the trial and put the ball back into our local medical teams court. We were heartbroken, that he put an end to things so quickly and strongly felt that he simply gave up on him too soon. Brian and I spent the last weekend doing alot of talking and reviewing all of the things Noah has been through and tried in terms of feeding. The first thing we both agreed on, is that Noah's behavior has been out of control since we started this. His anxiety and meltdowns have been at an all time high. I think not feeling well, having significantly less nutrition, no structured mealtimes, and adjusting to new medications have all played a role in this change. The feeding team in Evansville and his OT here in town have been AMAZING at helping us troubleshoot. Dr Clawson wants to stick as closely to the Dr Hyman's protocol as we can, but within limits that Noah can handle. We have been able to work him up to his regular (pre-New Orleans) feeding rate at night (still through the J) and we have brought back 2 structured meal times during the day. He is currently getting about 75% of his nutrition through the tube and 25% orally. He is still retching with larger volume meals, usually anything over 4oz. We have discontinued the Amitryptaline but are going to continue on the Neurontin for the time being. He has had some very good days and some very bad days. He still tires very easily when eating or chewing anything more than smooth purees and tends to swallow things whole. We are still working on strengthening his jaw and facial muscles. I think we have just accepted the fact that this is going to take a long time, and that there is no easy button or magic pill that is going to take this all away. I am so very blessed to have some amazing CDH support families to share ideas, suggestions, and advice with. We are all going, or have gone, down the long and winding feeding road. As one mom recently pointed out to me, CDH kids have such complex issues, it's almost impossible to pin it down to just one thing. For now, we are sticking with what we know works for Noah and are accepting of the fact that it's going to take lots of time as well as practice, to overcome these feeding complications. I remind myself that not quite a year ago, he was almost 100% tube fed. We've learned to celebrate all the victories, not matter how big or small!

Rough Week

2010-04-13T09:53:00.000-07:00

So, our first official day of the protocol was last Saturday. We were able to successfully feed Noah through the J-tube at a rate of 85 for the first several days and he was tolerating the meds great. We also started the Miralax for the stool impaction as well. After a few days we had to stop the Miralax as things began moving a little too quickly! Come Thursday, he began retching during the day for unknown reasons but was happy and playful. Thursday night things got worse, he began retching so severely, I wasn't able to run any feeds whatsoever. Friday things continued downward and we took him in for an x-ray to check the placement of the g-j and the location/size of the stool impaction. The x-ray confirmed the correct placement of the tube AND that stool impaction was gone! Good news! However, doesn't really explain the intolerance of his feeds. Despite the protocol instructions of nothing in the stomach, we began to run very low rates of pedialyte and calories through the g-tube and small boluses during the day as well. He still continued retching with everything that went in. We have been communicating with the Dr from New Orleans as well as his pedi and feeding team of what exactly was going on. We are just hoping this is a virus of some sort that needs to run its course and we are trying to keep him hydrated anyway we can in effort to keep him out of the hospital. Last night we were able to run a very low rate (25) through the j-tube and for the first night since Thursday, he slept peacefully. This morning, by huge surprise, he sat and ate a handful of grapes willingly on his own and then proceeded to ask for salad and chicken nuggets at lunch time! Granted, he didn't really actually eat that, but he actually ASKED me for it! We are still keeping our fingers crossed that he just has an intestinal virus and that it will pass that it's not something else brewing, or a reaction to his new meds. I am hoping he is feeling better in the next few days!
I will post more of an update on the rest of boys and pictures soon!

Back from New Orleans!

2010-04-03T17:38:00.000-07:00

Whew...what a week! Glad to be home!! I can't tell you how excited we are about the news that we received this week.
Tuesday - Noah LOVED the airplane! He did better than we could have ever expected on the flights. Especially when our first flight was late resulting in us missing our connection in Detroit. Thankfully, they were able to get us on another flight the same day, but we didn't end up getting to New Orleans until almost 10:30pm! The people at the Ronald McDonald house were absolutely incredible. Some of the most kind, caring, hospitable people we have ever met! Not only did they wait for us and held our room, but greeted us at the door with a new toy and Hot Wheels slippers for Noah.
Wednesday - We arrived at Children's Hospital at 7am to begin the esophageal manomatry. They put Noah under general anesthesia and removed his g-tube and inserted the manometry catheter in it's place. It went as far as the beginning of the small intestine. They also placed a tube into his nose that went down through the esophagus. While he was still sedated, they completed the motility study. The results - normal esophageal motility! They removed the tube from his nose and left the other cath in place in his gastronomy site. This caused him no pain or discomfort. After this, he was admitted into the hospital and we just went back to his room for the rest of the night. Dr Hyman let us in the room during the study and explained everything to us. Later he spent over an hour in his room with us just letting me pick his brain and ask a million questions. He is a wonderfully brilliant and kind man! One of the most interesting things we learned is that he was currently treating 2 CDH babies in the NICU with the medications we would be putting Noah on in effort to avoid the fundo/g-tube surgeries....oh how I wish we could have found this man sooner!!
Thursday - They brought us to the treatment room for the antroduodenal manometry testing first thing in the morning. Noah was awake for all of this and felt nothing. They simply hooked the end of the cath that was in place to the machine and began monitoring him while he played and watched tv. At one point we did a therapeutic meal session with him as we do at home and they continued to monitor the motility through the small intestine...results - normal motility!!! Basically this means all of his muscles used in digestion are working properly. With motility questions out of the equation, we are now able to put the plan of action into motion! Now, here is where it gets super exciting! Dr Hyman was able to determine that Noah has pain from the point the food goes into his mouth and reaches his stomach until it passes through the intestine because of nerve damage due to multiple procedures, learned pain responses from reflux, intubation, altered anatomy due to the CDH, etc, etc...He diagnosed him with a sensory disorder but believes that it is 100% fixable and he feels that using his protocol, he can have Noah completely off of tube feeds in 13 weeks!!!!!
The Plan:
1. Completely bypass the stomach for a full 8 weeks and feed 100% of his daily caloric needs by g-j tube into the jejunum while his is sleeping.
2. Start a combination of Neurontin and amitriptyline for 6 months. These drugs were originally used for pain, seizures, and depression, however, used in smaller doses, they are very effective for pain and will basically change the way pain is transmitted by the nerves.
3. At the end of the 8th week, we will start him on Megase (an appetite stimulant) for 5 days. With every day he is taking the Megase, we will decrease the tube feeds by one hour. By this point, the pain is taken away and hunger is now introduced. The Megase is only for a week and the other meds will be discontinued after 6 months.

This protocol has a 90% success rate when followed exactly according to his direction! If this is true, Noah's life is about to change dramatically!!! We are extremely apprehensive about stopping Noah's therapeutic daily meals, but Dr Hyman stressed over and over the importance of stopping all painful experiences to the stomach until the medicine has time to do its job. If Noah WANTS to eat something, we don't have to discourage him, we just aren't to push him like what we have been doing. Naturally on his own, as the pain dissipates, he will eat willingly w/o the fear of pain. We will restart his theraputic meals in conjunction with feeding therapy when the Megase is started, but between now and then we will just continue to work on his chewing and oral motor excersises to keep up on the progress he has made there. We still need to consult with the feeding team in Evansville for their thoughts on this as well, but I am sure they will be on board.

We eagerly agreed to try this approach and scheduled Noah for a g-j tube placement Thursday afternoon. During the placement, Dr Hyman discovered an area of impacted stool the size of a grapefruit in his colon. (yep, that's a whole lotta poop!) Dr Hyman believes that this is also related to his sensory disorder and that he might be holding it for fear of a painful bowel movement (sorry if this is too much info!) He felt comfortable enough to release him to go home and directed us to use Miralax daily and follow up with an abdominal x-ray in two weeks. He wanted to make sure this is the issue and there is not some sort of other obstruction or underlying issue. They finally discharged him about 8pm that evening. We flew home Friday morning at 7am, so we never even actually saw the light of day in New Orleans (except through the window in his room!) It was a very busy few days to say the least!

Since we have been home, he is doing great, happy and cheerful, and thrilled to be back home! I know that I am missing a ton of info, we just learned so much, it's impossible to put it all down. Dr Hyman just has a totally different perspective on feeding and GI isues, different from everything we have ever been told or taught. We are so very blessed to have been able to go and, if this works, I can't even begin to explain how incredible that would be for Noah!! We wanted to thank eveyone who helped us keep things going at home so that we could go! Elliot and Zane had a great time with Grandma! I don't actually even know that Elliot wanted to come back home with us! Zane is now in Seattle for his spring break with Aunt Kelly and Uncle Jeff! I can't wait to hear all his stories when he gets home!