Tuesday, March 31, 2009

Crying

Many people have asked what Noah "sounds like". How do you know when he's crying if he can't make any noise? We recorded him right before a diaper change – remember he HATES to be wet.

I suppose like all mothers, I don't like to see my little guy crying. Fortunately, he doesn't do it very often.

Dr. Fields, our pediatrician, gave us the results of Noah's lung culture. Fortunately, he has a bacterial infection that can easily be treated with oral antibiotics as opposed to antibiotics through his IV. We will be able to go home as soon as Noah is off oxygen. He has been put on oxygen because his lungs are still recovering from the RSV. We hope to be home some time this weekend.

Monday, March 30, 2009

Breathing Better

Today has overall been a good day for Noah. Unfortunately, around 1:00 a.m. this morning the nurse discovered a blood clot in the IV in his arm. This is a fairly common occurrence but it meant that a new IV had to be started. Noah does not have "good veins" and after several attempts in his hand and arm, the nurse went for his scalp.
Daddy headed off to work, after only a few interrupted hours of sleep, while the little man and I entertained a string of visitors – Lindsay, Megan and Nana. They brought with them food and encouragement as well as helped me pass the time.

The nebulizer treatments in addition to the antibiotics have helped to clear Noah's lungs. The nurse commented that "he doesn't sound like he has rocks in his lungs anymore". Noah's pediatrician will be by later tonight to give us the results of his lung culture. Once we have the results, we will have a better idea how much longer we will be here. Hopefully tonight will be less eventful and Kc and I will get a bit more sleep. That might just be wishful thinking.

Sunday, March 29, 2009

Caught Smoking

Things are quite normal here on "the floor" at Children's Hospital. Noah is feeling much better and the doctor has allowed him to feed a small bit (2 ounces every three hours). Here's a small snippet of what last night was like...

9:30 Mommy and Daddy "tried" to go to bed
9:35 Oxygen Saturation (SAT) monitor beeps because his saturation level is below the recommended limit (it beeps several times and then Noah's level returns to normal)
9:42 Nurse comes in the room to give antibiotics through IV on a pump machine
9:49 SAT monitor beeps several times
9:57 IV pump machine beeps to tell us it's almost finished
10:02 IV pump machine is finished and beeps repeatedly
10:06 Finally the nurse comes in the room to turn IV pump machine off
10:12 Respiration Therapist (RT) comes in to give Noah medication through a nebulizer (happens every four hours)
10:25 Noah is agitated after the nebulizer treatment and begins to cry
10:29 The nurse comes in and gives Noah a diuretic to help his lungs drain
10:37 Noah is coughing and needs to be suctioned
10:49 Noah cries because he has a wet diaper

This is just one hour. Add to that feedings every three hours, pumping every three hours, random Wubba Nub escapes (we had to put his pacifier back in his mouth), the cleaning crew coming to empty the trash and soiled linen receptacle, and temperature and blood pressure taken twice during the night. Needless to say, Kc and I are quite tired. It did help to have our own pillows and down comforter, though. We're becoming accustomed to the routine interruptions and take comfort in the knowledge that it won't last forever – home is just a few days away!

Kc got up around 2:00 am, and in his sleep deprived state, thought he caught Noah and the RT smoking a hookah. He was preparing to have "the talk" with his son about the dangers of controlled substances. Just because an RT said it was cool to smoke, doesn't mean you should give in to peer pressure. Kc soon realized, however, it was Noah's nebulizer treatment.The Jackson family will be spending the day relaxing and getting better. We will be gradually increasing the amount Noah is fed, hopefully getting back up to 4 ounces. Thank you for all of your thoughts and prayers. We are truly in good hands here.

Saturday, March 28, 2009

Two Months Old

Noah is two months old today. Kc and I had planned on taking Noah and Sierra to Woodward Park for a picnic. We would sit in the sun (it was supposed to be 79 degrees today), watch Sierra play with other dogs in the dog park, and enjoy a meal together. Instead, Noah woke up at 1:00 a.m. last night with severe vomiting. Because there was a bit of blood in the vomit, we headed straight to the Emergency Room at Children's Hospital.

Noah has been a bit under the weather the past three days. At first, I thought it was because of the vaccinations he received on Wednesday. By Friday, after a few cranky and cough filled days, I thought he had just caught a cold. After several tests in the ER, we found out he has RSV and pneumonia. Our little guy is quite tough – I had no idea he was so sick. He is currently on two separate antibiotics and will be monitored over the next few days. Because of the blood in his vomit, he is currently NPO (cannot eat anything) and will have further tests done. We'll keep you posted.

Kc went home briefly today to pack our suitcase – we'll be at Children's Hospital for at least three days – and brought Ryan bear for Noah's monthly picture. It's a bit challenging to take a picture of the two of them while they are lying in the bed, but here it is.Notice all the tubes and wires that Noah has again. It brings back many memories of our time in the NICU. We have been in great hands so far and hope that bringing our own pillows and down comforter will make the nights more comfortable. Wish us luck!!!

Friday, March 27, 2009

Questions and Answers

Over the past several weeks, many people have asked questions about how Noah is doing. I though I'd address some of the most asked questions.

1. How well is Noah eating?
Currently, Noah is taking about 4 ounces of expressed breast milk through his NG tube every three hours. We met with a lactation consultant and tried breast feeding last week. Noah would have none of it! We have an appointment with an occupational therapist in April to help him with bottle feeding. When he feeds from a bottle, it takes about thirty minutes to drink 1 ounce and he swallows quite a bit of air. I don't know if his difficulty feeding is a result of Fraser Syndrome or just his own uniqueness. The burps that follow a bottle feeding put his Daddy to shame. Because Noah is a little slow in his weight gain, we have suspended the bottle feeding until he sees the OT. We're hoping to pack on a few pounds in the meantime.

2. How is Noah sleeping?
Very well!!! He is currently sleeping about six hours at night. He wakes up only if he needs his diaper changed (Noah HATES to be wet).

3. How is Sierra reacting around Noah?
Sierra LOVES Noah, especially after a bath when he's clean and slathered in lotion.

4. Are those curls?
Yes!!!! Noah's hair is definitely curly.

5. When are you going back to Children's Hospital Los Angeles?
We're heading down south on April 15th. They will study his right eye to see if it is functioning as well as check the progress made by the eye drops in his left eye.

Thursday, March 26, 2009

Visit to the Pediatrician

Noah had his two month check-up yesterday. Things are going well. He is gaining weight, although slowly. He has several vaccines and only cried a bit. His current stats:

Weight: 10 pounds 2 ounces
Length: 22.5 inches

We've had a relaxing couple of days at home this week. Noah loves just hanging out at home, going on walks and playing with Sierra.
Notice Sierra licking Noah. Too cute!

Saturday, March 21, 2009

We went to Mommy's work

Yesterday was a very exciting day for Noah and I. It started out with a lunch date with my fellow first grade teachers. It is tradition that we go out to lunch every Friday. It is a chance for all of us to talk about our weekend plans, tell stories about the funny things that happened in our classrooms, and most of all, have conversations with people over the age of seven. We had a wonderful lunch and Noah got to be held by Andrea, Shana and Natalie. Following lunch, we headed over to my classroom and I introduced Noah to my kiddos. Unfortunately, there is a "bug" going around, so five students (Isabella, Eric, Bella, Jack and Madi) were not able to meet Noah. He did, however, get to meet Emily, Jaden, Aubrie, Ali, Meg, Davis, Jane, Trinity, Sam, Luke, Freddy, Natlaie, Tess, Lily and Max. It was so nice to see their smiling faces and spend some time with all of them. I cannot believe how much they have grown since January. Their teacher, Miss Catey, is doing a GREAT job in Room 9. I promised them that Noah and I would see them at Open House in April and that I was looking forward to returning to the classroom in May. Before we left, they all got to sign Noah's casts. How very cute!

Friday, March 20, 2009

Happily Ever After

Here are the amazing birth announcements that Kc designed. Noah truly is our Happily Ever After.

Thursday, March 19, 2009

Family Weekend

This past weekend was filled with loads of family and fun events. Noah's Auntie Nessa and Uncle Drew flew out from Iowa and got to meet him for the first time. They had some quality bonding time with the little man and got to practice mopping up spit-up before Jonah Elijah is born in June (don't you just LOVE that name?!?).Noah also got to meet his great Aunt Louise and great Uncle David from Arizona.
They have three grandchildren of their own and Noah definitely recognized the "experienced" arms of Aunt Louise. He spent loads of time asleep in her arms.Noah also got to spend some boy time with Uncle Adam and cousin Hunter while all the ladies were at Auntie Nessa's baby shower. I cannot believe it, but we don't have ANY pictures of the two cousins together. We are all getting together in August, after Jonah Elijah is born, and will take LOADS of pictures of the three boys. I'm looking forward to it.

Wednesday, March 18, 2009

Noah's first smile

Noah gave us his first non-gas related smile on March 8th. We have been trying to capture it on film since then. Today, after running several errands, Noah was so happy to be out of his car seat, that he smiled long enough for me to grab my camera and snap a few shots.

Tuesday, March 17, 2009

We went to Daddy's work

Happy St. Patrick's Day! Noah and I decided to head over to JP Marketing, Daddy's work, to visit all the wonderful people there. Noah truly loved being held by everyone. He especially loved sitting in Daddy's chair.

Monday, March 16, 2009

Noah's Dedication

This past Sunday, Kc and I dedicated Noah at our church.
A baby dedication is not salvific in nature but rather a public commitment to raise Noah to be a man of God. We were blessed to be surrounded by so many friends and family members. Our pastor, Brad, spoke about our history and our struggles after Ryan's death. He then charged Kc and I to teach Noah about God's love through the love we show for each other. Noah wore my grandfather's, his great-grandfather's, baptismal gown. It has been worn by so many members of my family and there are spit-up stains on the gown to prove it.After the dedication, we all headed over to my parent's house for dinner. We cannot thank them enough for opening up their home to over fifty friends who got to meet and hold Noah. Kc and I were truly overwhelmed by all the love and support we experienced. We thank you all for your amazing generosity and encouragement.

Wednesday, March 11, 2009

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.

Tuesday, March 10, 2009

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.

Monday, March 9, 2009

Road Trip

We're off to Children's Hospital Los Angeles. It's amazing how much "stuff" a little guy needs. The TEAM NOAH bag that holds all of his trach supplies as well as his suction machine was a gift from several of my first grade students and their families. Thank You!

Sunday, March 8, 2009

Welcome To Holland

An amazing family gave us this essay and it truly sums up how we feel.

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Friday, March 6, 2009

Daddy comes home for lunch

We are so lucky that Kc works very close to home. He is able to come home for lunch and get a little "Noah fix".
Sierra also misses her Daddy during the day - apparently I am not as exciting to play with.

Thursday, March 5, 2009

One Month Old

Here are some pictures of Noah at one month old - I'm a little late posting them.
It was quite challenging to get my little man to "sit up" for the picture, especially because it was right before lunch time. Noah kept leaning over and trying to suck on Ryan's bear.
We received this bear right after Ryan was born from an amazing organization in Fresno called Angel Babies. They do not want mothers who have lost their babies to leave the hospital with empty arms. As I left the hospital, I cradled Ryan's bear in my arms. Now I have my little man who LOVES to snuggle in my arms.

Wednesday, March 4, 2009

Noah's first trip

We found out that we will be heading down to Children's Hospital Los Angeles on Monday to see the cornea surgeon. It will be our first "family trip". While some families go visit relatives or travel to the coast or mountains, the Jacksons go visit doctors. What a life we lead!

Doctors Appointments

These past several days have been filled with doctors appointments, visits from friends, eating, sleeping and pooping.

On Monday, we went to see Dr. Gerardi, the orthopedic surgeon. Noah had new casts put on and screamed (without any sound) the whole time. The doctor was so kind, gentle, and patient. We have scheduled his next minor surgery for the 13th of March. Dr. Gerardi will clip Noah's achilles tendons which will allow him to flex and point his feet. Following that surgery, he will have casts for one more month before he moves into braces. The braces will be worn until Noah starts to walk.

After the doctors appointment, we had our first shopping excursion to Target (one of my most favorite places). We ran into many familiar faces there and picked up a gift for Noah's cousin who is due in June.

Tuesday started out with a visit to Dr. Hodge, the colostomy doctor. Everything is looking good and the doctor thinks he will be able to reverse the colostomy early in the summer. Noah will have a few studies done to determine "what his insides look like" (my wording, not the doctors) before the surgery is done. Later that day, we had our second shopping excursion to Gottschalks followed by a visit from a group of Nana's friends who laughed, cuddled and brought loads of desserts.

Noah definitely has a routine established. He is a good sleeper at night and we frequently have to wake him up to change and feed him. During the day, he spends his time sleeping, eating and pooping. He had an extended period of time in the early evening, right after Daddy gets home, where he is awake and playful. He loves to lounge in his Boppy, watch the ceiling fan and suck on his Wubba - it is a pacifier that is attached to a small stuffed animal (thanks to Fletcher, Baily and Parker Kapic for telling us about the Wubba Nub). Before we left the hospital, Noah had a hearing test. Our friends Mary and Dave were there to witness the awesome technology. Many different sounds are transmitted into the "headphones" that Noah is wearing and then sensors detect any minor muscle movements he makes. We are pleased to announce that Noah passed the hearing test with flying colors.
We continue to work on feedings and are hoping to slowly increase the amount he eats to 90 ml (which is 3 ounces). He does not like his NG tube and is getting good at grabbing a hold of it and pulling it out. Unfortunately, Noah is not able to take all of his milk from the bottle and therefor needs the NG. Thus, Daddy is getting very good at putting it back in.
We are still waiting to hear from Dr. Song's office about an appointment for Noah at Children's Hospital Los Angeles. We should know later on this afternoon.

It's just about time for Noah's 12:00 feeding and he is letting me know. Thank you for your encouragement and concern. I will keep you all posted.

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Our Family

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Daddy & Noah

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