Wednesday, February 1, 2012

Happy New Year!

What a bizarre 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!!

Tuesday, December 6, 2011

Tis the Season....

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!

Wednesday, October 5, 2011

It's been awhile...

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.....

Tuesday, May 17, 2011

Prayers for a friend

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! ( 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....

Sunday, May 15, 2011

Random updates....

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!

Saturday, March 26, 2011

CDH Awareness Day - March 31st

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!!

Sunday, March 13, 2011

Blog slackin' again!

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!