Potty Training

Well...we've entered into the dangerous world of potty training.  We actually attempted several months ago, but Bubs just wasn't ready.  I decided not to push him...and Kc assured me that he wouldn't be a 17 year-old boy still wearing diapers.  

So...here we are again, and I must admit that Noah is doing quite well.  The Big Boy Underwear Fairy came one night and took all of Bubs' diapers and replaced them with fun underwear.  When Noah woke-up, he was super excited to put them on.

Noah understood what to do quickly, but occasionally had problems stopping what he was doing and running to the potty.  I must admit that there were some days that both Noah and I were quite frustrated but luckily they were sprinkled between fantastic potty days and Kc kept reminding me that Potty Training is a process.

Bubs has had several days in a row without any accidents and while I know this process is not over, I am excited at how well he is doing.

Medical Updates

The past two weeks have been VERY busy for the Jacksons. Noah has had five doctor's appointments {two of them out of town}, we have gone on two mini weekend vacations, and have had countless play dates and BBQs with family and friends. Here are some updates on what we learned at the doctors appointments.

Plastic Surgery:

Noah's hands continue to heal quite nicely. They were wrapped continuously for two weeks post surgery. After those initial two weeks, we unwrapped his hands nightly, gave him a bath, let the hands dry out, and then wrapped them back up. As of his appointment last week, Noah's right hand is doing excellent and doesn't have to be wrapped any more. His left hand has a bit more healing to do and needs to continue to be wrapped. Although, as you can see from pictures in previous posts, we've taken liberties in how long we let his hand "dry out".

Ophthalmology:

Last week, we headed down to Children's Hospital Los Angeles to see Noah's eye doctor. It was a LONG trip but Noah did well in the car. The Dr said Noah's left eye continues to look good and so we're going to continue his current eye drops. He also decided that Noah needs glasses. While Noah is a bit near sighted, the primary reason for the glasses is to protect his eye from possible injury. Because he's only got one, we need to do everything we can to keep it safe. We have ordered the glasses {very cute plastic children's ones} and they should be here in the next week or so.

Otolaryngology:

After Noah's last scope of his trachea, our ENT Dr referred us to a specialist at Children's Hospital Stanford. We drove up to Stanford yesterday, and once again, Noah did quite well in the car. We met our AMAZING Dr and were quite impressed with the clinic. The first thing they did was stick a long camera down Noah's nose straight into his trachea so they could get a good look around {while he was awake}. Needless to say, Noah DID NOT like this. The first thing the Dr saw was how large Noah tonsils were. "Those have got to go," he exclaimed. He was also able to see that Noah's vocal chords were "trying" to move while he was screaming and crying. "Very encouraging," he said. We discussed the MAJOR surgery to re-build Noah's trachea and possibly take out his trach. There is about a 70% success rate with severe cases like Noah. We head back up to Stanford on September 8 so the Dr can do his own scope and take out Noah's tonsils and adenoids. At that point, he will be able to make a plan whether or not to proceed with Noah's laryngotracheoplasty.

I am so blessed to be on summer vacation and not have to take days off work for all of these appointments. While I would much rather be a SAHM {stay at home mother}, I have to give thanks for the job I have, the flexibility it allows us, and the health benefits it gives Noah. We've got some major surgeries ahead of us, so I'm hoping to make the most of this summer and have as much fun as possible!

Mr. Poop

Yesterday morning, Kc and I both left the hospital and headed off to work. Lindsay came to watch Noah, like she does every Friday. Noah loves to spend time with Lindsay and decided to save his first poop for her. Right around lunch time, Lindsay noticed a very familiar smell that was completely new to Mr. Man. She checked his daiper, and sure enough...his first poops. Noah was a bit puzzled as to why Lindsay was jumping up and down, clapping, and taking picutures. "It's just poop", he thought.
Noah was kind enough to save another poopy diaper for his Mama later that night. Because he's had two poopy diapers, Dr. Hodge agreed that he can slowly start back on formula. We are working our way from two ounces per feed back up to his normal six ounces. Hopefully we'll be there tomorrow morning and then we'll be able to go home.
Noah Man has lost almost two pounds over the last week. He was put on a Pedialyte only diet three full days before his colostomy closure surgery and was NPO (nothing to eat or drink) five hours before the procedure. Since the surgery has been complete, Noah has only had IV fluids and a few ounces of Pedialyte. That's seven full days without any formula. It's amazing what two pounds looks like on a little baby. Noah's rolls and dimples are almost nonexistant. His fat little feet are not so fat. We've got a lot of work to do to pack the pounds back on. Here's to the future of feeding and pooping! Away we go!

Praying for Poop

Thank you all so much for your prayers. Noah's colostomy closure was a success yesterday. He did very well during the procedure and slept most of the rest of the day. Dr. Hodge said that Noah needs to poop before we can begin to feed him...we need to know that all his pipes are in working order. So, while Nana is with Noah at Children's Hospital today, we're praying for poop. We'll post some pictures soon.

Hooked on Pedialyte

Noah's colostomy closure surgery is today...finally. After having to postpone the surgery for seven weeks because of pneumonia, I thought this day would never come, but here it is. In order for Noah's insides to be clean, he has been on a Pedialyte only diet since Sunday. It's been a bit rough for Mr. Man, but he is taking it like a champ. We have been feeding him every two to three hours and boy does he let us know when he's hungry. The surgery is scheduled for 11:00. Please pray for the doctors and nurses as well as for Noah. Wish us luck with our hospital stay (hopefully not more than five days) as well as our first poopy diapers.

Success

Thank you for all of your thoughts and prayers. Noah's surgery went well today. He now has a Mic-Key G-tube in his little belly and the fundoplication procedure was a success. Dr. Hodge was encouraged by how "low" the colon was and said it was easy to attach to his anus. It was a glorious moment when I finally got to hold him after he came out of recovery. He is sleeping away right now...with the help of some pain medication. Hopefully tonight all three of us will sleep like babies.

Big Surgery Day

This Friday, the 29th, Noah will be heading back to Children's Hospital once again to go under the knife. First, his ENT doctor, Dr. Dunham, will perform a trachioscopy, which will allow him to look down Noah's trachea and "see what's going on". Next, Dr. Hodge, will perform the Nissen Fundoplication and insert a G-Tube. If time permits, he will also do the first part of Noah's colostomy reversal – connecting the bottom of the colon to his anus. Once that has healed, in about six weeks, Noah will go back for the final part of his colostomy reversal – putting the colon back together. We'd love prayers on Friday for the doctors and nurses, for Noah, and for Daddy and I who will once again be spending several days and nights in the hospital.

No More Casts

Today Noah got his casts removed!!! We went to Dr. Gerardi's office early this morning and he removed Noah's casts and we got to see his legs for the first time in seven weeks. Noah did not like the sensation of people touching his feet and was not happy when I tried to wash the four weeks of grime off his legs in the doctor's office. Dr. Gerardi said that his feet look great and now we just have to keep them that way. We left the doctor's office and headed straight to Valley Orthopedic for a brace fitting. Noah will wear his "snow boarding" boots that are attached to a bar until he begins to walk. Because the braces are custom made, we will have to wait a week to get them. Until then, Noah will be cast and brace free!

A Beautiful Day

Today was a great day in the NICU! Noah did not have ANY tests done and although we did not receive any results from previous tests (we kept missing the doctors) we had several visitors and got to hold Noah most of the day. He currently weighs 8 pounds 14 ounces which is 10 ounces more than when he was born. He graduated from his warming bed into a big boy crib and is now able to wear clothes. We put Noah in a cute gown that his Auntie Nessa and Uncle Drew gave him for Christmas. Our little man is growing up!
Soon after Kc and I got in this morning, our Case Manager came in to talk to us about what life will be like with Noah at home. We will have suction equipment for his trach that must be with him at all times as well as a monitor that keeps track of his heart rate and breathing rate. I will have a large duffel bag to store his "travel" equiptment along with a diaper bag to take with me whenever we leave the house. Short trips to the market will be a thing of the past.
Noah's colostomy doctor, Dr. Hodge, came by early in the morning and told the nurses that "Noah needs to eat". Once they got approval from his primary care physicain, we were able to feed Noah 15 ml of milk through his NG tube every three hours. If he can get his breathing rate under control, Noah will be able to feed from a bottle. We're hopeful that will happen in the next few days.
After lunch, Noah had his first visitor. Joanie, a very close family friend, came to say "Hi". She brought in some books to read, but unfortunately Noah slept through her whole visit (I think it was his first food coma) and didn't get to hear any stories. After Kc and I had lunch in the hospital cafeteria (thanks to a generous gift card from our Church Staff), we returned to the NICU and Kc read a few books to Noah. That put him right back to sleep. Nana and Papa came to visit in the early afternoon. We took turns cuddling and rocking Noah, something he LOVES!!!!
Kc and I changed several diapers, emptied out the ostomy bag a few times, suctioned twice and watched the nurses replace his "split 2 x 2" (the gauze that is between his trach and neck). All in all, it was the best day we have had in the past week.

It's Becoming Routine

It is truly amazing how quickly new things can become routine. Kc and I woke up this morning and headed into the NICU to visit our precious son. When we got there, the day nurse Liz gave us the update on how his night went. Noah had a good night but this morning, once again, wrapped his little fingers around his ET tube and pulled as hard as he could. Because he has to keep the tube in until his trach surgery on Monday, and has apparently not learned anything from the fiasco yesterday, the doctor decided to give him a mild sedative. That seemed to do the trick. He was quiet and happy most of the day. Kc and I met with Noah's uriologist soon after we got to the NICU. She told us that for the most part, Noah's bladder and kidneys look good. She will be performing a few more tests over the next several days but is not that worried about him.

Kc had the priviledge of being the first to clean out Noah's colostomy bag (notice the bag of greenish brown goop). Most new parents "enjoy" the first poopie diaper change but Kc got to suction out a bag. He had so much fun that he asked Nurse Liz if he could do it again right before we left for the night. What a great Dad!
We were fortunate enough to visit with a mother of a little girl who has had a trach for the past 10 weeks. Mia's mom showed us what the trach looks like and walked us through the surgical procedure and the routine of daily maintinance. It was so reassuring to meet someone who has gone through this process with their child. Monday's surgery is now less intimidating.

I made a HUGE mistake...

I woke up bright and early this morning, eager to start my day. I suddenly noticed there was this thing in my mouth. I tried to spit it out, but it went way down my throat. I thought, WTF! Why is that here? What are these doctors trying to do to me? I decided I would help the nurses out and remove it myself. I grabbed ahold and yanked as hard as I could. I immediately regretted that decision. All of a sudden I was surrounded by nurses with scrunched up faces. They were running around and making a big fuss. I don't remember much, Mom said I was crashing but I didn't even get out of my bed, but I do remember the doctor putting the tube back in. Gosh darnit! It was back.Later that day, in the NICU, I got ready for my second surgical procedure. I took another ride in a bus to the OR and gave a thumbs up to all my grandparents as I drove by. The doctor told me he was going to take pictures of my throat and so I started to smile real pretty. Once again, the anesthesiologist came in and I don't remember anything else. What does that guy do to me???

When I woke up, I got to meet my Uncle Adam and Aunt Melissa. They drove all the way from San Francisco to meet me. My cousin, Hunter, was in the waiting room with Nana and Papa. Mom says it will be a while before I can play with him.

Just before leaving for the night, Mom and Dad got really excited. I was starting to poop out the hole in my side and the nurse was going to get a bag. I never knew poop was so exciting. Oh, just wait. I have plenty more where that came from.

My first surgery...

Okay... So the doctor told me this afternoon that I would have to have surgery. What??? I was protesting as loudly as I possibly could (which isn't all that loud) when the anesthesiologist came into the room. I don't remember anything after that. Mom and Dad came by after the surgery was finished and told me that everything went well. I now have a hole in my side where a bag will be attached. Pretty cool, huh?
I have a very uncomfortable tube going into my lungs right now to help me breathe. The nurses promise that it will be removed some time tomorrow, if I promise to breathe properly. I have been pretty good about following their orders...we'll see how I feel about that tomorrow.

P.S. Mom and Dad told me that I came to Children's Hospital in a transport called a bus that was loaded onto an ambulance. Go figure?