Shoes

This is what a little boy's shoes should look like...wet, muddy, and covered in grass.

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!

New Kicks...again

Once again, Noah has outgrown his old boots. Kc took him in to be fitted last week, but was unfortunately unable to pick out the new straps. I think Daddy-O is a bit disappointed because we're back to "babyish" straps. The cars and trucks are OK, but flames or camouflage are so much cooler!Noah seems to love his new boots regardless of the strap pattern. They fit his feet so much better and with a little bit of effort, he can wiggle his feet out of the boots in the middle of the night {something he was never able to do in the old boots}. It's awesome to wake the Little Guy up in the morning and see his boots at one side of the crib while he's curled up at the opposite side. I'm not sure Noah's orthopaedic surgeon would condone this behavior.
On a different note, Noah had his final dose of antibiotics last night. Since birth, Mr. Man has been on one antibiotic or another due to infections, surgeries, and to prevent bladder infections {remember those strictures in his urethra}. Today was Noah's very first antibiotic-free day! Ever! How awesome is that?!? I'm sure he'll have an excuse to get his "antibiotic fix" in the future - bronchial infection here we come - but for the time being, we can cross that medication off the list and focus on eliminating one or two more.

New, Flaming Kicks

Back in April, when Noah got his first set of boots, Mama and Nana went into Valley Orthopedic and picked out the cute royal blue and green dinosaur straps.
When Daddy took Noah in to get fitted for his second (much larger) pair of boots last week, he picked out straps that were much different. Daddy decided that Noah Man needed flames. Black straps with red, orange, and yellow flames, to be precise.Noah loves his new flaming kicks, especially because they aren't too small and don't pinch his feet.

Noah's New Kicks

On Thursday, Noah finally got his new braces. They are super cool with dinosaurs on the middle strap. He needs to wear them 23 hours a day (we can take them off for bath time) until he starts to cruise around. He doesn't mind them too much. The first night he was a bit fussy, but he is now quite used to them. It is funny to watch him kick his legs around while lying down...when he kicks one, the other leg follows.You can see Noah's black and white leads between his legs. Whenever he is asleep or in the car we plug him into an apnea monitor that records his heart rate and breathing rate. Because he cannot cry or tell us if there is a problem with his trach (plugged or fell out) the monitor makes sure he is always breathing. I love asking Kc, "Did you plug Noah in?", whenever we get in the car.

Achilles Surgery

After a very relaxing day yesterday that included an in-home manicure and pedicure for me (thanks Cindy and Joanie) we headed back to Children's Hospital for Noah's achilles tenotomy (the clipping of his achelles tendon). The brief procedure was a success and Dr. Gerardi was pleased with how Noah was responding. The casts he put on Noah's legs will remain for one month and then Noah will graduate to braces. The braces will look like large shoes attached to a snowboard. Noah will wear the braces all day and night until he starts to walk. Kc thinks Noah should be a snowboarder for Halloween. All he needs is a big, puffy jacket, zinc on his nose, beanie on his head, and goggles over his eyes. Too cute!

Unfortunately, Noah has inherited his mother's poor blood veins. The nurse tried several times to put the IV in Noah's hands or arms to no avail. So...to the head she went. Noah is quite happy with his morphine right now and does not mind. Hopefully the IV will come out late tonight after Noah eats (and keeps it all down). Kc and I are settling into our room here at Children's Hospital and are looking forward to a night filled with beeps, lights, interruptions and nurses.

Fourteen Hours

Yep...that's right. From start to finish, we were gone fourteen hours yesterday. It was a whirlwind of a trip and even though Kc had his camera with him the entire time, we have NO pictures. Sorry.

We got to LA about an hour before our appointment. We only had to make one stop along the way for a diaper change and feeding. Noah did very well and slept most of the way down. The news from Dr. Song is very encouraging. He told us that it was a good thing we didn't have an appointment until this week. The experimental drug that had been suggested for Noah had some very poor results and is now suspended from use. Dr. Song explained that there are many things he can do to preserve Noah's left eye starting with some VERY SAFE eye drops. We'll be heading back to LA in a few weeks to see if they are working.

As far as Noah's right eye, the Doctor has scheduled a VEP-ERG (Visual Evoked Potential - Electroretinogram) in a few weeks as well. It will determine if there is any potential in that eye and whether or not he will have surgery to "uncover" it. If there isn't any potential, it will be left alone and Noah will receive a prosthetic eye that will cover the empty spot when he gets to be five years old. Either way, we have a definite plan of action and that makes all of us very happy.

Before leaving LA, and in order to miss the rush hour traffic, we stopped in Burbank and had dinner with our "transplanted" friends Jenn and Stacey (as well as Stacey's boyfriend Jared). It was so nice to see them again and Noah, while he was a bit cranky and hungry, truly enjoyed meeting everyone.

The drive home was pretty rough. Noah was sick and tired of sitting in his car seat, which was truly understandable, and just wanted to be home. By the time we got home at 11:00, Noah was so happy and awake, that we stayed up until his midnight feeding and did some tummy time. All in all, it was a great road trip.

To make this week a bit more hectic, Noah's achilles surgery that was scheduled for Friday, has been moved up to tomorrow afternoon. I am happy to get it over with although we are not looking forward to spending the night at Children's Hospital again. Thanks for all your prayers. We'll keep you posted.

We moved again, again, again

Last night, after Phil and Katy Mc came by for a visit and brought us dinner, Noah was moved out of the NICU. We are now "on the floor" which means we are in a normal hospital room. The nurse who moved us said, "we are one step closer to the front door". There are kids from age two through sixteen surrounding Noah. Kc and I will now be "rooming in" with Noah starting tonight. Please pray that we are able to sleep with all the beeps, interruptions from nurses and "cries" from Noah. Let the joy begin!!!

We have a busy day planned. Noah will have his casts replaced today after lunch and then I will give him a bath (something he LOVES). Nana is planning a visit in the afternoon as well as his eye doctor, Dr. Kelly. Add to that, several diaper changes, feedings every three hours, trach suctioning every few hours, nurses assessing Noah, as well as the mandatory cuddle time, we have a typical day at Children's Hospital.

I'll post some pictures as soon as Kc comes "home" after work. I thought our condo was small, but spending the next several days and nights in the hospital room will make home seem like a mansion. It's just like being at a noisy hotel without the room service.

I have casts

The past two days have been good in the NICU. Having a private room is quite nice, there aren't as many beeps from other baby's monitors, we have our own private bathroom as well as a TV, and Kc can bring his computer and we can update the blog from the hospital.
Yesterday morning, Dr. Gerardi came in and put Noah's casts on. He used a special dressing that was developed by NFL trainers. They look like fiberglass casts, but they hardened in less than two minutes and are fairly flexible. Noah doesn't seem to mind the casts which is a good thing. He will have his casts changed weekly for aproxiamately a month before he has a minor surgery on his achilles tendon. He will then be casted for about two months before he graduates to braces.
Kc, Nana, Papa and I all took an Infant CPR class that focused on trach babies. We practiced placing a "bag" on a trach and giving two breaths before giving 30 chest compressions. We also learned the four symptoms of a choking child — crying without any noise, excessive coughing or coughing without any sound, high pitched voice or gurgling sounds, and a bluish tint in the face. Because of Noah's trach he shows three out of four symptoms at all times, so I suppose, if he is choking we will just be looking for a blue baby. I guess dressing up as a Smurf for Halloween will not be an option!

Grandma Jackson and Uncle Scott came by for another visit before heading back up to Rocklin. Noah truly loves being held and rocked!
His feedings are going well. He is now bottle fed every other feeding and has increased his milk intake to 45 ml. He will continue to increase 1 ml every feeding until 50 ml. When Noah is able to drink 70 ml the doctors will decrease the fluids given to him through his PICC line (a deep IV line that goes through a vein in his arm towards his heart). Eventually the PICC line will be taken out and he can go home. Noah is still spitting up during every feeding, but I am confident that he is just a "typical boy" who loves to spit.