11 Days Old (And Still Amazingly Precious)

I just realized today that it is a holiday weekend. Jeff and I have been so busy running back and forth between home and the hospital that we didn't even realize that under normal circumstances we might have orchestrated a BBQ at our house. Hot dogs, Hamburgers, kegs of beer and root beer. Swimming. Good times with Good Friends.

We haven't talked to many of our friends and family about their weekend plans- but we hope that most of you are enjoying the long weekend and celebrating the last holiday of the summer! (I can't believe how time flies!)

We started our day at 5:30a. We were to the hospital by 8a. We met Ryan's day nurse "Soon" this morning. Soon "SUCKS". English was definitely a second language to our nurse. It was difficult to converse with her and she wasn't the level of nurse that we have grown accustomed to in the NICU.
- We would talk to her and she wouldn't realize that we were talking. The other nurse in the room would have to tell her we were talking to her.
- We would try to tell her how we would be involved throughout the day and she didn't always understand.
For example:
It took telling her 4 times that we wanted to weigh Ryan between feedings (she wasn't understanding the word "weigh")
We talked about going to get "all" of the bottles we had from home and she translated that we were going to the "mall".

ARRRRRGH! Are you KIDDING me?!! I'm tired AND cranky and I have to deal with this woman?!!

To further complicate the positive flow of our day, the Doctor did not write an order for Ryan's discharge partly because there were no written notes on discussions we've had with his surgeon and other Doctor's about what it would take to get Ryan home. All the forces were against us. Had we have had a stronger nurse - and had the doctor's conversations about discharge been better documented, we might have been able to bring Ryan home. Oh well. At this point, what's one more day?

Jeff and I attended the 8 and 11a feedings this morning. We actually put Ryan into one of his own outfits today. The good news is that he still fits in "Newborn" clothing. We weren't sure if he would be able to fit into his newborn outfits because he was over 8 lbs. Jeff brought me home to rest from 1p - 4:15. While at home, I threw the batch of newborn clothes into the washer since we know that Ryan will be able to wear them for at least a short while. I got in a couple hours of solid sleep - which was badly needed. While I rested, Jeff went back to the hospital (mostly because we had very little faith in Soon's ability). Jeff came back and picked me up for the 5 and 8p feedings.

The night nurse was the consummate "Grandma" nurse. She shed a lot of light on the Doctor's and Nurse's different work styles. She also better defined realistic feeding quantities and what would be considered normal stool amounts. (I know... the things we concern ourselves with these days. Believe me, I can't believe I'm blogging about poo!) Ryan's nurse will spoil him tonight. She's the type of nurse who picks you up when you cry and feeds you when you cry and not just at a specified time. We felt much better about leaving Ryan tonight. We may have had to stay if we had Soon as the night nurse.

I honestly don't know how Jeff and I are still going at this point - Especially Jeff since he didn't get in that long nap like I got! We are both running on fumes at this point. Hopefully tomorrow is the "BIG DAY". We will actually be better rested by having Ryan here at home. Isn't that crazy?

Add Five

Eleven, Two, FIVE and Eight.

We started off our day running behind. I got ready while Jeff slept until 10:10a. (We need to leave no later than 10:30 to be to the hospital by 11a). We ran out of the house with no camera for the day. UGH!

We drove through the local McDonalds and ordered our usual fruit parfait with a water - and I called the NICU to let the nurse know that we would be running a little behind - - but to wait so that we could be there to feed Ryan. The nurse offered to let me start breast feeding today - which was a surprise because I assumed that they would not be able to allow this if they were trying to keep the feedings measured.

We arrived at the NICU and Ryan had been taken out of the incubator and was put into a crib-style bed. His IV was removed from his arm and he was in a onesie. Wow. What progress. The nurse weighed Ryan before and after his feeding to see how much he was taking in while being nursed. While he was only supposed to take in 65 cc's, he took in 80. This was okay by his doctor. As long as he would consume it, he would allow it.

Because of the breast feeding schedule, we incorporated the 5p feeding into our scheduled visits today. It made for a very long day.
- From 11-12:30 we were with Ryan. Grandma Norton came to visit and then we headed to lunch and then back to the NICU.
- From 2-3:30 we were with Ryan. His Nasogastric tube was removed!!!! Now all he has on him is his heart monitors. Pete and Jennifer Coorey came to visit and then we headed out for a stop at Babies R Us for some supplies. Back again to the NICU
- From 5-6:15 we were with Ryan. Jeff and I went out for sushi and then back again for the 8p feeding.
- From 8-10p we were with Ryan. Dom and Michelle Vinci came to visit and then we headed home for the night. With this visit, Ryan was moved to a new room in the NICU. He is now placed with the babies who are getting ready for discharge.

We arrived home at 10:30p.
- No tarantulas thank GOD. But I do wonder if that creepy thing has crawled up one of our palm trees - Anyways...

Dylan has been home alone all day. I went upstairs and spent some time visiting with him. Jeff spent time playing with the dogs. We feel bad that we have obligations to provide attention to those in our house who need us but have not been here to do so. Dylan is being a great sport. Parker is his usual characteristic self - see photo!

We are not sure if discharge will come tomorrow or Monday. Either way, we know Ryan is close to coming home. We can't wait. We are so excited about his progress. Today had a lot of milestones!!!!

Tomorrow we will incorporate the 8a feeding into our visitation schedule because the NICU only has enough milk storage on hand to get Ryan through the 5a feeding. Tomorrow will be another long day.

Eleven Two and Eight

We again made our visits at 11a, 2p and 8p today.

11a - Ryan was awake when we arrived at our 11a visit. His nurse was changing his "house" (he got a new incubator). We gave Ryan a bath and then he was visited by the developmental nurse who came in and tested his reflexes to make sure that he was developing at the right pace for his age. Ryan least liked when the examiner flicked him on his feet to provoke crying. I thought that he would least like the feeling of being dropped - - but he actually didn't even cry. He just threw out his arms as if to balance himself from the fall.

His doctor confirmed that he is to increase feeding amounts by 5 cc's with each feeding. With this visit we gave him 25 cc's of milk. Jeff held him most of this morning. He slept most of the time.

2p - We came back to feed Ryan after Jeff and I had lunch. He was given a (second) hearing test - for which he (again) passed. The first test was given when he was 2 days old. They re-test as part of being at another hospital - and as part of the procedure for discharge. Because of the testing, Ryan was about one hour behind with his feeding. He was given 30 cc's of milk. Because of all of the activity of the day (bath, exercise, testing, increased feedings) Ryan again slept most of our visit.

Antibiotics were stopped and he is going to be slowly weened off of his IV at a rate equal to his milk increase.

8p - Ryan was sleeping when we got to the NICU. We changed his diaper, had him weighed and fed him 40 cc's. He didn't stay awake very long. He zonked out for most of the hour and a half we were there with him. (See picture)

By the time that we arrive for tomorrow's 11a visit - Ryan should be up to 65 cc's of milk. When he is able to sustain 80 cc's of milk, we will be able to bring him home. So for now, we just cross our fingers that he continues to be able to digest and poop! By this time tomorrow night we will know if Ryan is consuming the amount of milk that the doctor's want him to be eating in order to bring him home. We suspect that Sunday could be the day Ryan comes home!

TARANTULA!!!

Look what was on our doorstep when we got home tonight!!
I HATE SPIDERS!
Who knew that we were in tarantula territory????

Jeff bravely boxed him up (I am assuming this creepy fellow is a "boy") and moved him off our front porch.

As creeped out as I am of spiders, I suggested that he squash it with a shovel - but he thought it would be best to just move it to a new home.

As a secondary option, I suggested flinging it viciously into the neighbors yard - hoping that it would die upon impact with the house or maybe even just from the trauma of being hurled across the street - but he decided against my suggestions and put it gently into the planter between our two homes.

It's a lucky day for the tarantula. However, I can not stop thinking about where this spider will end up. It is still out there... Yikes!

The Road We Have Been On

The road we have been on in the last week has been one of ups and downs. We were UP the day that Ryan was born. We were DOWN on the day he got transported to NICU. When we heard he may only have stinosis and Ryan was allowed to begin feedng - we were UP. When we heard yesterday that he may have Hirschsprung's we were DOWN.

Our 8p visit last night followed suit with our news of the day. Ryan was very hungry with his reduced feeding and he was very fussy the whole time we were with him. He cried with frustration as we put him in his incubator for the night. It broke my heart to walk away from him - so we stayed to comfort him until he fell asleep. He fell asleep in frustration about 10p. We left knowing his next feeding was only one hour away and that we really need the rest.

On our road of ups and downs, we have now catapulted UP with news that Ryan does NOT have Hirschsprung's. He will not be transported to Children's Hospital. He will not require surgery. He will slowly be backed off of his antibiotics. He will again be put on a gradual increase of feeding amounts. All of this will lead to his discharge from NICU. We expect that he may be home by the end of this weekend, but we need to talk to his doctors tomorrow for a real timeline.

Moving forward, Ryan will still require some dilation to help with his stinosis, but this can be done in our home or with office visits. Jeff and I are more than willing to take on this minor task. What a relief.

Jeff has been a true rock. He has kept me grounded and has supported me when I did not think I could keep going. He has been my communicator to family and friends when I did not have the will to carry on a conversation. He has supported me in ways I didn't even realize I needed to get through this difficult week. I have an amazing husband.

I want to thank everyone for their positive thoughts and prayers. I think we realized through this whole process how much of a support system we really have. We look forward to bringing Ryan home and FINALLY introducing our new addition to family and friends. We know you will fall in love with him as we have.

While I know the road of parenthood will continue to bring ups and downs - I now have comfort that it will be done in good health.

Our visits today with Ryan have been great. He has been extremely happy and alert. He stayed awake during the majority of our 1-2 hour visits at 11a and 2p. Jeff and I are headed back to the hospital for his 8p visit. We have much more energy to make this trip than what we had just 24 hours ago!

Two Steps Foward, One Step Back

The pathology test came back today indicating that it is possible that Ryan may have Hirshprung's Disease. His biopsy has been sent out to Children's hospital. We should have their final word within a few days. For now, Ryan will remain in NICU.

For those of you who need to know what Hirshprung's is (I know I did):
Hirschsprung's disease is a condition that affects the large intestine (colon or large bowel) and causes problems with passing stool. It's present when a baby is born (congenital) and results from missing nerve cells in the muscles of a portion of the baby's colon.

Hirschsprung's disease occurs in one in every 5,000 babies born and is responsible for one-fourth of intestinal obstructions in newborns. It's five times more common in boys.

Normally, as a baby grows in the womb, bundles of nerve cells (ganglia) begin to form between the muscle layers along the length of the colon. This process begins at the top of the colon and ends at the bottom (rectum). In children with Hirschsprung's disease, this process does not finish and the ganglia do not form along the entire length of the colon. Sometimes the cells are missing from only a few centimeters.

Surgery is the only proven, effective treatment for Hirschsprung's disease. The procedure is called pull-through surgery and involves removing the section of the colon that has no ganglia cells, then connecting the remaining healthy end of the colon to the rectum.

On the bright side, Ryan is still eating and passing gas and stool.
Jeff and I were with Ryan for his 11a and 2p feedings. We'll be with him again at 8p. We really just needed the rest after receiving the news. Although, as I write this... I feel guilty for not being there for his 5p feeding (it's 10 minutes after 5p right now).

And so we move forward - one day at a time. I really had my hopes up that he would be coming home this week. It's hard to imagine that it could be another week (or longer). We really won't know until we hear back from Children's Hospital.

God give me strength. I feel like like I'm breaking.

A Great Day

Well - today was an eventful day. Dylan started his Junior year of High School and Ryan made great strides.

Dylan was the first awake in the house this morning. He woke Jeff up at 7:30 for a ride to school. I, on the other hand, took a little longer to wake from slumber. Waking some time after 8a (but probably closer to 9), it was near 11:30a before we made it to the NICU for our first visit with Ryan.

Jeff and I took turns holding Ryan. We each held him for about an hour waiting for the doctors to make their rounds. We just wanted to know if they would be removing the tube from his mouth and if they would allow feedings to begin. We were getting ready to leave for lunch and FINALLY someone came by with some answers!!
- - Ryan's tube was moved from his mouth to his nose. (He is soooo much happier!)
- - We were able to feed him for the first time since he was admitted on Friday. The doctors are gradually allowing food. He will start off with 10cc's of milk and will be fed every 3 hours. After the 3rd feeding, the quantity will go up 5 cc's for every 2 feedings.

The nurses had reported that Ryan needed much soothing last night because of his hunger. So when he was given his first (non IV) meal today - he was very happy about it!! He first latched on to the bottle and was a little surprised that he was getting something from it. Once he realized what was going on - - he viciously sucked down his 10cc's. He was so content - - and we were so happy that he was no longer going to be suffering pains of starvation.

After coming home to visit with Dylan after his first day of school, we headed back to NICU for the 2nd feeding at 5 and then came home again to get Dylan for the final visit and 3rd feeding at 8p. We are so excited to be able to feed him. We're equally excited that Ryan is continuing to poop and his stomach measurements continue to go down. These are all really good signs that he is doing well. Who would have ever thought we would want our baby to poop so bad?!?!

By the time we arrive tomorrow, Ryan will have had 4 more feedings and will be up to 25cc's of milk. We should also hear back on the results of the biopsy tomorrow. With this we hope to learn of when Ryan can come home. One last hurdle. Our fingers are crossed and we have nothing but positive thoughts.

It's been another 15+ hour day. We spent 8 hours in the NICU and another 3 hours making the commute to and from. We're off to bed and will be at it again tomorrow.

Slice of Heaven

Today got off to a late start. Tired and exhausted, we woke up and got ready to go see Ryan. We arrived at the NICU at 10:30a and we were hopeful that the biopsy and doctor's visits had already taken place, but they hadn't. The pediatric surgeon came in around 11:30 and explained today's procedure and also some background for us.

1.) Ryan has anal stenosis - a narrowing of the anal opening, which makes it difficult for stool contents to pass through easily. Over the weekend procedures were done to clear the blockage and to dilate the opening. This has so far proved to be very effective and Ryan has been having regular bowel movements.

2.) Ryan's x-ray this morning looked great. He had the right amount of gas in his stomach and the distention in his stomach continued to go down.

3.) A biopsy was taken from Ryan today to rule out an underlying issue - Hirschsprung's Disease - which would be a greater issue. If the biopsy comes back from the hospital as negative - we are in the clear. We will know the results within 2 days. If the biopsy comes back positive or inconclusive, then the results will be sent out for further evaluation at Children's Hospital. These results can take an additional week.

For now, all is looking great. The doctor's have ordered the suction from Ryan's orogastric tube be stopped. He still has the tube in his mouth for now, but now his fluids (saliva, stomach acid, etc) are being re-introduced. Tomorrow Ryan will be allowed to SLOWLY introduce milk into his system. Each of these steps along with his ability to have bowel movements will determine when Ryan can come home.

If there is no indication of Hirschsprung's, then we may be able to bring him home as early as late this week. Of course our fingers are crossed that Ryan's condition is not that severe.

Ryan was alert this morning for our morning visit. He was pretty wiped out for our afternoon and evening visits. He slept most of the time that we were there with him. It's still nice to hold him even though he is sleeping.

We arrived home tired and exhausted (the same way we woke up). To our surprise, Randi and Jessica - Dylan's best friends - had brought us a banana merengue pie. Inside the pie box was written "Since your little slice of heaven isn't home, I hope you can enjoy a little slice of pie". It was a great end to our long day.

THANK YOU RANDI & JESSICA!!!!

Sunday Update - 8/24/08

We make sure that we spend time with Ryan 3-4 times each day. This morning he was visited by his Aunt Nadia and Uncle Denny (pictured). This afternoon he was visited by his Grandma and Grandpa Norton and by his Aunt Shelley and Aunt Wendy. Jeff and I went alone in the evening.

Ryan is doing very well. He is the baby in the NICU nursery who doesn't fuss or cry - and believe me... there is a lot of fussing and crying going around him (refer to sounds in below video)! We really have to put our situation in positive perspective when looking at what some of the other babies and families are faced with. With each of our visits today he was alert and looking around. (He was mostly sleeping on Friday and Saturday). It was nice to be able to bond with him.

Now that Ryan's stomach is starting empty and he continues to pass gas and have regular bowel movements - he is getting more and more hungry and aggressively sucks on his pacifier with false hopes of easing his hunger. It melts our hearts because there is nothing we can do to soothe him. Ryan will not be given any food until some point after tomorrow's biopsy. So for now, his IV nutrition will have to suffice.

Tomorrow will be a big day for us. Although I know there will most likely not be anything definitive, I hope that there will at least be some additional direction on any next steps and some idea on how much longer he will have to stay in the NICU.

Jeff and I just want to bring our little guy home!!

Update: Ryan Jeffrey Norton

The most heartbreaking of all experiences is when - as a new parent - you have to go home without your baby. It is even harder when you have to follow your baby's ambulance as he is taken to a newborn intensive care unit.

Newborn babies are expected to have a bowel movement within 24 hours of birth. When Ryan had not had one in 48 hours, doctors confirmed by x-ray that he had a blockage. Not knowing what the specifics entailed, we handed over our newest addition for further tests. While it was difficult to see Ryan with tubes in his mouth and enclosed as what I would describe as an incubator, we knew he was in good hands.

Yesterday was truly the most heartbreaking day in my life. I have never cried like I did when we were being told that something was wrong with our baby. Every single fear of everything horrible passed through my mind. How is it possible that this perfect child who I had just spent the last 48 hours cuddling with was ill?

On a day that I expected to bring this perfect child home - I had to let him go. When visiting Ryan in the NICU, there was nothing as parents that we could do but wait. There would be no procedures done last night. We were told to go home and get some rest. I had so many questions racing through my mind: What would our new baby have to endure to find a cure to his ailment? Are they going to have to perform invasive surgery? Why weren't there immediate answers? Why can't they do the procedure NOW? When can we bring him home?

We knew that the diagnosis could be broad. It could be something as simple as a hardening of the meconium which would essentially create a "plug" - to something mechanical within the development of his organs. Today Ryan received an enema that released the blockage - however we are awaiting further "official" findings as it would relate to being a mechanical issue. For this, we will probably not know anything until Monday.

At this point, it will probably be at least Tuesday until we can bring our son home. We are coping - and staying very positive. Little things bring us both to tears. ...this morning it was the song playing from the singing balloon we received from the Lexus Western Area. (Baby Face Song by Art Mooney: Baby face...You've got the cutest little baby face...There's not another one could take your place) Even typing this blog chokes me up.

We'll keep this blog posted, but right now we're just waiting. Keep Ryan in your prayers.

The Wait Is Over...

Friends, family and loved ones:

It was a long day that started before 5:00 a.m. at home getting ready to go to the hospital. After spending 20 hours there, I left Melissa to rest and my first task was to post this before I crashed.

At 2:15 p.m. on August 20, 2008, Ryan Jeffrey Norton took a breath and let out a cry. He clicked the scale at 8 lbs, 5 oz and was 21 inches long. 10 toes, 10 fingers, etc etc etc. Mom and baby are doing just fine. Big Brother Dylan, Grandma Norton, the Taylor family and Uncle Vinci came to visit. 

I'll let Melissa give the full details of her day in a later post. 

For me...it had to be one of the most amazing days of my life. I owe Melissa so much for giving me this child.

Here are just a few pictures. If you click on the photo, it will open "full size."

Thanks for all of your thoughts, prayers and well wishes.

Jeff

TOMORROW!

Tomorrow is the big day.  I am scheduled to be admitted for induction at 5:30a.  I don't know what is better:  Being surprised by labor or being scheduled for labor.  I'm a bit anxious now.

I've been a bit sick over the past few days.  Sunday I got some type of stomach virus and then Monday I started suffering through they symptoms of a cold - sore throat, runny nose.  I hate being sick!!  

Today we are meeting with the cabinet guy to pick out the door style and view the final layout of our kitchen.  (Remind me again why we're crazy enough to do a kitchen remodel at the same time as having a baby?!!!!)  

I have this strange suspicion that today will go by very fast - and I was just complaining that the days were going by "so slow".  Silly Mommy.  

We can't wait to introduce Baby Norton to all our friends and family.  

So Close - Yet So Far Away

Jeff and I attended another Dr's appointment together today.

I am dilated 2 cm and the baby is estimated to weigh about 7lbs. 15 oz. in his 38th week.

The doctor will see me again on Tuesday - and will induce on Wednesday - if he doesn't arrive on his own before then.

Why are the days going by s-o-o-o-o-o-o s-l-l-l-l-l-l-o-w?

Dylan Goes To Pismo Beach

Dylan is headed off to Pismo beach tonight with our neighbor (and his high school friend) Corbin Hawkins. The boys have spent most of today getting their bikes and camping gear ready to spend the week on the beach.

Corbin heads off to college soon, and Dylan starts school on the 26th - so this is probably the last time the two can spend any time together.

Dylan will have fun. Hopefully this baby will not come until Saturday, but if he does - Dylan will have a new baby brother to come home to.

August 19

Big news today.

My doctor PROMISED me he would deliver this baby 10 days ahead of schedule if he doesn't come on his own. (Notice the new countdown ticker)

I was officially put on disability today. (Although, I am driving into Irvine tomorrow to meet with my NorCal counterpart and will be tying up some loose ends for a couple of days) Hopefully the official time off will allow me time to prepare the house for the baby.
- Suddenly it seems this kitchen remodel thing may not be such a good idea. Who's going to pick out the granite if I go into labor?!

Why do the last days always seem to take the longest???

Riders Helping Riders - Racetown 395

From RHR Racetown 395

From RHR Racetown 395

From RHR Racetown 395

From RHR Racetown 395

From RHR Racetown 395

As part of the Best of the West series, Dylan participated in the second of three motocross events today. Aunt Dorothy, cousin Jenni, Uncle Dave and Aunt Clare were troopers and made the excursion with us.

The day started off very early. We left our house at 6:45a and drove to Racetown in Adelanto, CA. Arriving around 8:30a, we quickly set up camp and got Dylan signed up in 2 different races for the day.

The Best of the West class consists of desert racers only. Since Dylan had never ridden at Racetown and is not a seasoned motocross racer, we signed Dylan up in a second class. This second class was part of a motocross points series consisting heavily of pure motocross racers. Racing in the secondary class gave Dylan the chance to become familiar with the track prior to his series race for which he would receive points. Each of the two classes had two heat races consisting of 5 or 6 laps each. Within 3 laps of the motocross series race, Dylan fell into a groove and finished mid-pack against the MX racers. Not too bad for a desert guy!

Dylan placed first in both of the BOTW heats and walked away with the first place trophy. Because he took first place at Starwest and Racetown BOTW events, we are not committed to attend the Rovers I-5 event on the 17th.

Overall, the day was a long, hot one. We all put in about 11 hours of our day to be with Dylan - most of it in 108 degree temperatures. Again, it was worth it to see Dylan do so well! Needless to say, we are all exhausted from the day's event!

Baby Shower

We made it to the baby shower!!
I was a little worried that baby Norton might make an appearance before the baby shower.

What a great (overwhelming) time! So many friends and family made an appearance. The weather was gorgeous. The Whites and the Taylors did a great job hosting the event - and it all went by so fast!

We have most of what we need to welcome baby Norton home. Thanks to all who were able to attend! It was so great to see you!