Today's Doctor Visit

What a day!  Duvall has at least 2 feet of snow on the ground. 

Audrey's climbing toy - snow art

The plan was that Dusty would take Brogan to the doctor today and I would stay home, work and keep Audrey occupied.  We all know about plans!

Everything started out ok – then I got a call from Dusty.  “Bring a shovel”.  He was at the bottom of the driveway, and wouldn’t make it out onto the road.  Our driveway is a challenging .10 mile steep hill.  I ended up pushing him on the 3 wheeler up a bit of it on Sunday after he and Audrey came back from the grocery store.

After puttinng the snow chains on our trailblazer, Dusty was frozen and wet.  We all got into the car, since we were there and frozen too, except for the baby who was hot and sweaty in the car!  Daddy - so worried about him had the heat on full blast.  Ok, so after I unzipped Brogan's jacket, and dried his hair, we all got in the car and went to town.  We got to Brogan's doctor appointment 40 minutes late, but not bad.  They still got us in ok.  While Dusty waited, Audrey and I walked 2 blocks to the QFC to get her something to eat.  She was "STARVING"!  She's also a mega drama queen.  We've decided that visits to Brogan's doctor should be accompanied by survival foods because no matter what it always seems to take 2 hours.

Brogan was just supposed to get his shots today, but his breathing still hadn't cleared up from the last time we took him to the doctor, so we made sure they checked him out for that.  A little sinus infection, plus his chest is tightening up (spasms) similar to asthma, so besides the inhaler we have been using more frequently this week, they prescribed a nebulizer and amoxicillian to kick this crud!  Thank goodness.  It's been a very fretful few weeks 'waiting' for him to get over it himself.  A very sleepless few weeks too.  I know doctors are very reluctant to prescribe antibiotics at the drop of a hat these days, but he really needed it.  

Today was very challenging, bad snow, crazy drivers, sick baby and a rambunctious 6 year old!  Dusty and I are just worn out, but thankful that we got through it together.

Brittney the snow dog - 9 years old

A puppy again!

Visit with Santa

Santa visiting Duvall is a big deal – the guy taking the pictures was a volunteer from A-1 roofing, and Santa was awesome.  We think he’s the dad of the owner of the hardware store.  Then “Mrs. Claus” came and visited with Audrey and talked to Brogan too.  It’s really cool living in this little community!  The line was huge, I think everyone from Duvall was there.  

Duvall gets 12 inches

Lots of snow here!  Accumulated totals are up to 12 inches!  I'm so lucky Dusty can drive in this stuff.  We've got a 2004 2 wheel drive Chevy Trailblazer and he makes us all feel so safe like riding in a jeep 'round here!

Breastfeeding Brogan

I've read a lot about how hard it is for a baby with Ds and low muscle tone to latch on and breast feed.  Brogan had a tough beginning being on oxygen, and having low Oxygen saturation levels when he fed.  His stamina just wasn't up to the whole feeding thing, plus he was just learning all of the breathing/swallowing coordination and I understand that that can be a lot for a newborn to learn in the first place!

The nurses ended up tube feeding him and we fought like crazy to get him through one full day of nipple feeding to get the tube taken out.  By nipple feeding, I mean - ANY kind of nipple.  I knew the sooner we got him feeding, the sooner he could come home and I'd work on breast feeding him later.  

We got Brogan home, and I was reminded of the newborn days with my daughter, trying to get her started breastfeeding.  It was tough, but we were able to get the hang of it.  Brogan breast feeds quite well and has no trouble latching on.

Brogan is very lucky to have good muscle tone.  His pediatrician commented that his tone was a lot better than he expected.  

Since I work, I pump and bring home milk for him and when I am home I breast feed.  Now he is eating solid foods (baby food) in addition to the breast milk and supplemental formula.  I feel like all we do is "stuff" the baby.  With his vitamins and all of his varied foods, he is doing very well for a 7 month old.  I'm proud of our boy!  I'm so thankful too.  I love my baby so much, I'd do anything for him.  He is so beautiful and so sweet.  I can't imagine life without him now.

Brogan a little mad, but doing the Army Crawl!

Brogan has been doing the "Army Crawl" for a month or so now.  He really gets around and now Brogan's just started bouncing up on his knees.  He'll be crawling very soon!  Look out!  He's on the move!

Ewww Banannas!

What the heck was that Mom?!

Brogan loved Sweet Potatoes, and really eats his cereal well, but Bananas?!  That was the ewwwiest face I've ever seen, complete with shivers!  Dusty and I couldn't help but laugh like crazy, then we got him something else to eat.

Adventures in food are fun!  For both the parents and the baby!

Sweet Potatoes

First foods - Sweet Potatoes.  Brogan is really grubbing on this!

Give me that spoon MOM!

Happy Turkey Day

We found a craft online for Audrey to do because she had so much energy!  We also had her empty the silverware from the dishwasher and put it away.  She likes that job.

Audrey is so funny!

Brogan and Down syndrome and his big sister

I don't know about anyone else - but when I look at my son, I just see how cute and beautiful he is.  Is there something wrong with parents of Ds kids?  I don't think so.  I really don't see anything wrong with our boy.  I want a recount.

I think my daughter is beautiful too, and she doesn't have Ds.  She adores her brother and thinks that he is a beautiful baby boy.  She's a little too young to understand that her brother has Ds, or even what that means.  She does know he is beautiful, he is hers, and she loves him.

We've gotten a few books about different kids for her to look at and we read them to her.  She's also been a part of the hop-a-thons for Jerry's kids.  It seems to me that she's indifferent to kids with disabilities - at least at this young age.  She just doesn't think they're different or weird.

She saw him through his days in the NICU, and it was hard for her.  I realized how hard when we were moving last month, and I had gone into the store to get her a "Moon Pie".  Her brother started crying, and she couldn't find a bottle, she couldn't show him a toy or do anything that would make him stop.  By the time that I got back to the car, SHE was crying.  When I asked her what was wrong, she said that "Brogan was crying and I couldn't make him stop!  I don't want him to go back to the hospital.".  

That made me feel like such a bad mom for including Audrey in the visits to Brogan in the NICU, but how could I not let her see her brother.  It's hard for her, but I told her that we take good care of him and he will be ok.  If he's crying, he's just upset and she knew that mommy would be right back.

It hurts my heart so much to see the effect all of this has had on her.  She is my precious darling girl - long awaited for.  Brogan is my precious darling boy - also very long awaited for and very wanted.

Audrey and Brogan, June 6 2008

Harley Boy

Love this shirt! Cute shirt from the Harley shop over in Idaho. I thought the picture was pretty cute AND THEN I noticed the THUMBS UP - HA. He's a rider already. His dad, his mom, his mom's dad, his dad's dad... all the grandpas are riders. He's born to it.

Me WANT - Harley Davidson

JUST one thing - can't Harley Davidson use the correct grammar? "I WANT A HARLEY" is so much better. He's working so hard on his core muscles for sitting. can't a supposed american icon work just as hard to be literate? Brogan is so strong and happy to work out. He loves the exercises we do with him, and he's not floppy or weak. This makes us really glad.

Roasting Marshmallows

Audrey's first time roasting marshmallows! We lived in town and never were able to make a "camp fire" before. But out here, we've got such a nice place to go hiking and make camp fires and have all kinds of fun! This will be great when her Girl Scouts are looking for activities! We're thinking archery, camping, making a fire, bird watching... and more.

Audrey Roasting a Marshmallow! Nov. 23, 2008

Big Boy Bathtime

First big boy bath without the "newborn sling". Look at my darling boy - he is so absolutely charming!

We decided to let Brogan have a bath in his tub sitting up! He had a great time and did so well!

Brogan 6 1/2 months

I'm so proud of Brogan. He is a very good baby. I remember how demanding his sister was, and am so thankful to have a boy. I don't think having a boy that has Down syndrome has anything to do with his loving disposition, I just think he's a real sweetie to begin with.

Sweet 6

Audrey really enjoyed her birthday this year. She's a super 6 year old!!!

Halloween!

We LOVE Halloween! Of course - Audrey's birthday is the day before, so it's always a happy time of year!

Halloween Gorgeous!

Happy Birthday to Audrey!

Happy birthday Audrey Faye - now you are 6!

So when she asked about grandma's gift, a very pretty outfit with faux fur trim I told her -oh no sweetheart this is only fake fur, not real fur. Her response: "GOOD".

Audrey asked me to write "Thank You Ritesh" so that she could copy it. Ritesh is my good friend at work. She loved the many bangles that he gave her for her birthday.

Meanwhile... Mommy and Brogan's weekend fun.

While Dusty and Audrey were having their fun with the 3 wheelers this weekend, Brogan and I enjoyed our own kind of fun:

I love to cuddle up with my baby and take a nap.

Brogan has discovered his bedroom window. He loves to roll right over onto his tummy and look outside. I did some unpacking while he played (in between naps). The whole family enjoyed their weekend in our new home.

On the lookout for wildlife!

Little Miss Hot Rod!

Pacing to and fro on Sunday- in anticipation of a phone call from a guy we're buying a small Yamaha 3 wheeler from for Audrey. Now living up to the name Hot Rod.

Audrey and Dusty had a blast this weekend! Saturday they drove quite some distance to buy a used 3 wheeler for Dusty. So far he's pulled some junk out of our "ravine", and cleared some logs. He's also used it to go get the mail and bring in the trash - our driveway as most of our friends know is quite steep, long and treacherous for a guy with a bad knee.

Audrey and Dusty having a blast.

On the way - Dusty and Audrey stopped at a motorcycle shop to get her a motocross helmet! Pink of course. She loves her helmet so much, that Dusty told her she could wear it any time, but she couldn't sleep or eat with it on!

Finally the guy called Dusty back on Sunday and they were off to go get the Audrey sized 3 wheeler. A happier girl I've never seen.

Miss Hot Rod posing with her Helmet on!

Hey Dude!

I couldn't resist! Brogan's hair is made for a mohawk! Here he is - and check his 'tude! So cute. u can imagine him saying 'yo, dude do I know you? hey - what's up'?

See that "red" that looks like dye around his hairline? It is red hair! It's not dye! It's his own natural - golden red, not blonde color.

Get it on film!

Oh boy - just when we started moving in to our new home we saw deer. It was so exciting!

A mommy deer with a yearling. Audrey, when she saw them said to me "we should have got them on film". So here they are on film. The same mommy and fawn have been visiting us since we got here. This is a shot of the level side of our driveway - up at the top and to the left! I swear our driveway goes on forever until we reach the clearing that has our home. This is a wonderful thing - the moment you get to the top of the driveway and see our little clearing with our home plus the feeling that the car actually made it up there! WoW!

Driveway from the top



Audrey, we got them on film just for you.

What a great sister!

Great day at the park in downtown Duvall.

Visiting Duvall - we're looking in this area for a home to move to. It's so much closer to work for me than Algona.

Wrestling with crocodiles and smiling

Brogan smiling at the animals on his play mat

Just look at those sweet cheeks and pretty smile. That's our busy boy playing on his play mat. He likes to play all day and we have several areas for him to get busy. He has his play mat, a surfboard tummy time mat, he loves his crib and mobile, a super bouncy seat with the rainforest animals all singing music, a bumbo seat to sit up and get strong while reaching for toys, and a great swing are some. Not to mention the best play areas of all - Dad's chest and mommy's arms.

The next Steve Irwin - this family was a great fan of Steve's. His enthusiasm for everything he did was wonderful and we just couldn't say enough positive things about him to honor his contribution to humanity.

Here is Brogan wrestling with his toy crocodile nonstop - look at the blur; ha ha. Look at those cute dimples in his knees! We were on the road a lot today, so Brogan was in his car seat most of the day and when we got home he was really ready for some playtime. So he beat up his crocodile, talked to his hands and had a pretty good time with some of his other toys.

Brogan is such a busy baby that he gets hot and sweaty so I dress him up for going out but he is really comfy in a onsie t-shirt at home and near bedtime. He has socks on in this picture as I haven't yet taken them off of him. He really enjoys having naked feet. He touches things with his feet all of the time. It's really cute! All those wonderful tactile sensations to grow his brain and curiosity. Humans are fascinating.

Doing the Puyallup in the Rain

Last Saturday (Sept 20th) we planned and went to the Puyallup fair. It RAINED. Audrey had a great time though going on rides and looking at animals.

After Dusty got his mandatory Earthquake Burger, we got to fulfill my wish - have a family photo taken. So here we are, wet cold and tired but happy.

Brogan was a real trooper getting big drips on him while daddy fed him a bottle under a tree. He wasn't phased a bit. He really likes it outside.

Audrey loved loved loved the dress and hat she got to wear for this photo! Brogan was ok with his outfit, but didn't want to wear the coon skin cap so that didn't make it in the shot. Dusty was told to just look serious - my does he ever! I felt like a damp rag, I guess I could have powedered my nose! Oh well. A memory to cherish.

What Kind of Down Syndrome?

Brogan 4 1/2 months

Family doesn't know what Down Syndrome is and want to know what kind? They really are asking "what's the severity?"

Well for every kid it's different. But, this is what I've read:

2.1 Trisomy 21
2.2 Mosaicism
2.3 Robertsonian translocation
2.4 Duplication of a portion of chromosome 21

Brogan has Trisomy 21. So whatever type Brogan has - he is missing a lot of the typical features of Down Syndrome that doctors look for.

Definition of Down syndrome features
Down syndrome features: Children with Down syndrome have multiple malformations and mental impairment due to the presence of extra material from chromosome 21.
Among the more common physical features are hypotonia (floppiness), small head with brachycephaly, epicanthic folds across the inside corners of the eyes, upward outward slanting palpebral fissures (eye slits), Brushfield spots in the iris, small mouth, small ears, excessive skin at the nape of the neck, a single transverse palmar crease, and short fifth finger with clinodactyly (incurving). A wide space, often with a deep fissure between the first and second toes, is also common.
There is an increased risk of congenital heart defects (50%); leukemia (<1%); Hirschsprung disease with absence of nerves from the bowel (atresia (12%); eye disease (60%), including cataracts (15%) and severe refractive errors (50%); acquired hip dislocation (6%); obstructive sleep apnea (50%-75%); and thyroid disease (15%). There is no increased risk of solid tumors.
There is mental impairment. The degree is variable, ranging from mild (IQ: 50-70) to moderate (IQ: 35-50), and only occasionally to severe (IQ: 20-35).
The social quotient may be improved with early intervention techniques, although the level of function is exceedingly variable. Children with Down syndrome often function better in social situations than might be expected from their IQ.
An excellent set of guidelines for the health care of children with Down syndrome is available from the American Academy of Pediatrics.


This comes from: http://www.medterms.com/script/main/art.asp?articlekey=16226


So how is Brogan doing? Read and Learn. The doctors have not noted any of the features listed and are very surprised at his stength and intelligence.

I told Dusty that instead of rating as a genius he's probably have to settle for normal. Dusty scored two points below the IQ requied for MENSA.

Features and DS

As the doctor was looking at Brogan as a newborn, he told us that Brogan didn't really have any "features" of a Down Syndrome baby.

Dusty and I looked at one another - "Features? What are we doing, buying a car?". That word, along with many others that we would be hearing just didn't make a lot of sense. Obviously I know what the physical features of a human being are, but wouldn't it be more correct to say "Characteristics?".

Whatever - I just wanted to place my complaint against the word "Features" as relates to our son or any baby.

September, 2008

Dog named Roscoe

Roscoe was a rescue dog - we adopted him from the King County animal shelter.

We never got any of his background like where he came from or why he was given up - what we did get were his pedigree papers. He's a purebred Staffordshire Bull Terrior who had champion parents. Our guess was that he belonged to an elderly lady that may have passed away and her kids just took him down to the shelter to get rid of him.

Audrey and Roscoe are great friends. He's a wonderful kid's dog. I know Staffy's have a bad rep, but believe me, this guy is all heart. He also "talks" which is hilarious. Especially when he's worried about something, like being at the vet... then he has a lot to say!

This is Roscoe, and he's a great Staffy.

Surprising the Doctor

Amazing Brogan's doctor is always a pleasure, and he is always very happy to see how well Brogan is doing!

Brogan is the rollover king! He rolls from back to front and then after a while, rolls from front to back again.

When Dr. Ory set him on the examination table for his 4 month "Well Baby" checkup, he rolled right onto his tummy which surprised the doctor. He was happy to see that this boy has great muscles. Poor muscle tone is a characteristic of Down Syndrome babies, but our guy is just a tuffy. Brogan is an Irish name meaning "Sturdy and Strong".

His 4 month checkup went very well, with Brogan's doctor coming away completely amazed at Brogan's progress.

That's our boy! Brogan is very strong and is also using his mind. As his mother of course I would say he is exceptional. He is also a beautiful baby. We do get "oohs and ahhs" wherever we go, and I've heard people comment when we walk by, what a beautiful baby. I sure think so.

Ooh, Colic

Brogan is a very happy, sweet baby!

Colic is so hard! Look into your baby's eyes and his pain filled face and you suffer such sadness and helplessness... you feel his pain so well. Anything that works for your baby is a godsend. Tag team with your partner, siblings too. Something that distracts your baby seems to be very worthwhile. The only question is, has the episode run itself out. Because any parent with a colicky baby will identify with these episodes. And the episodes run their course no matter what we try to do. It just seems like we get lucky with one tactic or another, and it never seems to be the same one. Sometimes it's all daddy, other times mommy is the only one who can calm the baby. But look at the timing. I think you'll find, to your dismay, that the baby's tummy has a schedule for his colic.

I have feel for Brogan when his tummy is bothering him. No parent wants their child to feel pain.

I love my son - my little son that I am so proud of - with all of my being. I only want good things for his life.

Ready to Go!

Brogan wants to crawl so badly, he'll push himself forward with his back legs. I fear once this boy gets going, there'll be no stopping him!

Audrey - the fashion DIVA

I decided to stop arguing with Audrey over what she was going to wear "today" about 2 years ago. She never really liked mommy's conservative ideas of what would be cute. I guess? Conservative? Me - wow, I'd never call myself that.. but, OK.

Audrey can pull the weirdest combination of clothes out of her dresser and make it work. This is one of my most favorites she's come up with yet!

She's such a darling. Audrey is very creative and artistic, she's loving and tender as well. Along with having a magnificent imagination - well - her mom is so very proud of her and all of her quirks! She's beautiful every day and ornery all the time. We named her Audrey Faye, but we always called her Ornery Faye when she was a baby, but that personality trait didn't stop at babyhood.

Audrey is a very stong individual - and I'm so very proud of her. Her strength can also be a source of mom's aggravation, but I think I've done well as her mom by encouraging that strength, self confidence, sense of self, and her natural feelings for right and wrong. She's such a beautiful person, and even when she's driving me crazy, I'm still proud of her.

First comes love, then comes marriage, then comes Eva with a baby carriage... oh WAIT!

Of course I would get that part wrong. Hmm, I loved Dusty from the minute I met him and it wasn't just his looks, it was his soul and our connection to each other. If you've ever seen us together you would be amazed at our ability to communicate without words. Well, since we have the same thoughts, the same values... of course we wouldn't need to re-emphasize what was on our minds. Of course he has the most amazing eyes too. The sweetest soul I've ever met.

That is the weirdest thing about us. I say something, and Dusty is saying it at the same time. I think something, or am thinking I need to remember to say something, and Dusty has already had the same thought, and done whatever it was "we" were thinking about. We both think it's strange, but a real testimony to how close two people can be. We were truly meant for each other.

So... Brogan was born May 6th 2008 and Dusty and I were married on July 2nd 2008. Naturally because I was on maternity leave, and oh yeah - I had to go back to work on July 7th and we were running out of time! We HAD meant to be married before the baby was born, but there just didn't seem to be any time to do it. So, during maternity leave seemed natural to both of us as we were able to go down and get the license, and then get married.

I just want everyone in the world to know that I love my husband and respect him very much AND I am so very PROUD of him. He has a tremendously hard, stressful and joyous job - it's called "stay at home dad". I tried to tell him to write it down as domestic engineer. You know - especially when all those other people look at you (him) and say - "oh you don't work?". Dusty is the most instrumental person in my ability to return to work, as well as keeping my sanity. He's my best friend and my "split apart" (didn't anyone watch Demi Moore's movie, the Butcher's Wife?). http://www.imdb.com/title/tt0101523/

Audrey - Ring Girl (sorry your eyes are closed honey, but you're still so beautiful)!

A Baby with Down syndrome and no instructions?

Brogan 8/20/2008

So we were told that our son has Down Syndrome. What does that mean for us as parents of a new baby? What are we supposed to do with this baby? Is ANYONE going to come to my door and check up on us? I was surprised when I brought my daughter home, and even more surprised bringing Brogan home that no one checked up on us. Doesn't anyone monitor those new parents? No wonder you see so many horrible stories involving babies and kids on the news.

So - as I began - what do we do with this baby? Well, we treat him like a normal baby. He gets love and attention and food and changed and all of the good stuff. We put him in different play areas and play with him, and I see no difference between him and my daughter as little babies.

He spent a little time in daycare and picked up a daycare cold. That seemed pretty typical to me. It sure worried me! It worried me when Audrey got her first daycare cold at 18 months.

The nurses at Auburn Regional Medical Center gave us a nice keepsake box that someone had donated which had information about babies with Down Syndrome. I've read the book, read the pamphlets, but what I can see is that Down Syndrome isn't really the issue. It's keeping the baby healthy, like you would any baby that is the most important thing. I do love the nurses from the Auburn Regional Medical Center's NICU. They were so wonderful to Brogan. He was their "terrific eater". Plus he was super ornery with them and fought everything, which endeared him with them all the more because that showed he is a strong baby with a strong character.

Brogan has a nice pediatrician and he doesn't see many features of Down Syndrome in Brogan. Since this baby is rolling over, smiling, sucking on fingers, communicating well and progressing just like any normal baby I wonder sometimes. I know a symptom as a parent whose child is diagnosed with Down Syndrome has to be denial, but I'm not caught in denial. I just want someone to prove to me that this child is slow.

He really wants to crawl and I fear once this boy goes mobile there will be no stopping him! He rolls over from his back to his tummy and gets his knees under him before his elbows and starts to push forward. He's going places even if he ends up with rug burns on his forehead! That's just a joke, since he's on a nice play mat and supervised. He holds his head up well and does the 'mini pushup' like a good baby should. We're so proud of our little boy and I don't know if it's "early intervention" or just normal good parenting, but Brogan is doing great!

Brogan and Mommy August 2008

Tattoo courtesy of Big Sister Tatoo Parlor

First day of Kindergarten - REALLY!

Well I guess it doesn't count unless you get to ride the BUS to school! Yesterday was the parents and kids day at school to get the kids aquainted with the school and the parents aquainted with the bus system.

Audrey is on the Lion bus! They got to tour the school and playground while the poor parents got to get the kids' bus info, and backpacks tagged correctly. Thank you Costco for providing backpacks for all the kids.

Audrey made it on the bus just fine - in fact she didn't even say goodbye to daddy. Then coming home - she missed her stop. Thank goodness the bus driver came round a second time, and asked Dusty if he was her dad and gave her a second chance to get off at her stop! Whew!!!

First day of KINDERGARTEN!!!

Now I would think that Audrey's biggest worry for her first day of Kindergarten would be what to wear! I spent the weekend helping her feel special by sorting all of her new school clothes and getting them washed, folded and put away.

Not our girl - she's been so worried all weekend about knowing her letters and if she'll be smart enough for school. Poor baby! She spend the weekend writing her name, coloring and reading in her Leap Pad books. She also kept asking me what time it was and set her play clock by the times of day.

I felt bad that she should worry so much, but I am very proud of her for wanting to do well. She's a bright shining star and she will have a fantastic year. We're looking forward to tomorrow!

Brogan home with Oxygen

I was so relieved to bring my new baby home. I then realized how short 7 feet is. That's the length of the tubing attached to his oxygen bottle. So you can only move 7 feet in any direction with the baby. Adults get 50 feet of hose, but babies only get 7 feet.

In my case, that meant I could only move from the changing table to the bed and over to the computer - which is all in the same room.

Not ONLY was he attached to his oxygen tank, he also has his Oximeter lead on his foot. This measures the baby's oxygen level and heart rate. If these drop below a certain mark, a very loud obnoxious alarm sounds. So at 1:30 in the morning when he kicks and the lead slips or breaks it's connection momentarily, we're all awake trying to shut that darned alarm off! Even Audrey learned how to reset the machine's alarms.

We did have a portable oxygen system, so I would ask Dusty to "make the baby portable", so we could at least go into the living room. Otherwise, I felt pretty much trapped in our bedroom.

I was so happy after about two weeks of this, when we took Brogan to Mary Bridge Children's hospital for his appointment with the respiratory specialist and were told that he didn't need to be on the oxygen during the daytime anymore. About a week after that, he didn't need to be on it at night either. We still used the Oximeter to check his levels from time to time, but he's been a ok since then.

Audrey and Brogan, 5/26/2008

Young Folks

Brogan's song - the drummer has an Incredible Hulk t-shirt on! I sang/hummed this song to Brogan while I was pregnant with him, but had never seen the video. Funny thing is, we called him the Incredible Hulk because he used to push so hard! His first toy in the NICU was an Incredible Hulk truck.

A fighter

Oxygen, tube feedings, I.V., all kinds of tests. Brogan was in the NICU for 2 weeks. I know a lot of other babies spend longer, but any amount of time in the nursery is tough on the parents and the baby. It is a shock to see your little baby hooked up to all sorts of machines. When Dusty took Audrey to see him for the first time, he told me that she was speechless. Audrey is NEVER speechless. It's a shock for a big sister to see her little baby brother that way. We explained what all of the wires did. The ones connected to him for testing, and the oxygen hoses and the I.V. She understood right away, but still was very concerned for her brother.

She also knew that those nurses were "awesome terrific" and they were taking care of HER brother. She really loved the nurses and wanted to make sure she got to visit Brogan every day when he was in the hospital.

It was hard for Audrey, but thank goodness for my mom. She came to stay with us and took care of Audrey the entire time. It was a wonderful bonding time for the two of them since they've never gotten to spend so much time together before.

I held him for his feedings, even when they were tube feedings. Some of my notes from the nursey days:

• 5/6/2008 - Oxygen in nursery, IV, worried mom and dad


• 5/7/2008 - ok without oxygen and eating formula from a bottle


• 5/8/2008 - Pooped all over nurses & spit up too! Doing lots better! Doc ordering chromosome tests, should get results by Saturday. Jaundice treatment with lights and baby shades. Eating mommy milk and formula mixed. I am pumping. Ate about 20ml at a time every 3 hours. 38 ml at 2pm feedingHeart scan - talk to doc tomorrow. Tube feeding - yuk, he fought the nurse and dad almost cried. He cried. 5 & 8 am feedings.


• 5/9/2008 - Making lots of milk. Brogan is eating well but still gets tired and finishes off feedings with the tube. Lots of tests today, blood work, heart scan; small hole in heart but not symptomatic. IV Taken out! He's so happy to have his arm back! Lots more awake now when we visit him in the nursery. Feeding well but still gets tired and DeSats.

The nurses all love him because he is such a fighter.

• 5-10/2008 - Saturday - We've got a stockpile of mommy milk in the NICU freezer now. Breathing is still "see saw" - want to find nurse and get more info today. Brogan really knows Dusty's voice. He turned his head toward him with his eyes wide and just looked at him. So sweet! Down to one Bili light now. His eyes are still pretty yellow from the jaundice.
• Saturday afternoon - no more Billi light! Brogan's temperature is good so he's graduated to a crib and CLOTHES! That's a big step. We tried breast feeding at 11:00 & 2:00 feedings, but he was tired. He had a good latch on but didn't last long. I'm hoping he's more awake at the 5:00 feeding. Dusty put the Incredible Hulk monster truck in the crib, he's our little Hulk. Since before he was born he'd been so strong I joked that he was the incredible hulk and going to rip out of me like the hulk did his clothes!
• 5-11-2008 - Mother's day. I let the nurses feed Brogan at the 2 am and 5 am feedings so I could get some sleep. Dusty went home to take care of Audrey. Her and grandma are doing well, but she's getting away with murder. Today was my best mother's day ever. Brogan is eating well from the bottle finally and we had a visit from Grandma, Aunt Connie, Audrey and Dusty. Then they all took me out shopping for baby clothes - premie size!
• 5-12-2008 - Monday - 6 Days Old! Hoping to talk to doctors today. Found Brogan's song - Young Folks. Brogan has oxygen back in the afternoon. His Sat levels have been down during feedings. Brogan has a project linus quilt in his crib. Those are made by a group of ladies that my grandma belongs to. They make quilts for all kinds of children.
• 5-13-2008 - Tuesday - Dusty's birthday. Doctor Leung is finally in today. We're still waiting for an update on all of his tests and have lots of questions. We had a real shock when the doctor told us Brogan tested positive for Down Syndrome. I cried and felt so worried about my baby and his health, his life. I just held him closer and hugged him and tried to pour all of my love into him as a promise that we would take care of him and he would live, and live a good life no matter what it took. Dusty took it so very hard too. He's so worried about losing his beloved son to an illness after the elation of finally having a son. Thank goodness our family has been around to help us through this part of finding out.
• 5-14-2008 - Wednesday - The feeding tube is OUT! We worked hard all night and day to get the required 8 bottle feedings in so they would take that tube out. YaY! He's still using the oxygen, but is feeding well.
• 5-15-2008 - Thursday - Worried about chest X-ray - Brogan's lungs are still cloudy. Doctor Leung called it pulmonary lymphoma disease. They are telling us that we can take him home on Monday! With oxygen, but he will be home!
• 5-16-2008- Friday - I spent a lot of time in the nursery cuddling with Brogan today. I've got the run of the NICU - where the dirty and clean linens are, what to do with dirty clothes, where to find bottles and nipples. They're all pretty impressed and have just let me take care of my baby, which I insist on. I feel robbed if someone else has come in and taken care of him before I get there.
• 5-17-2008 - Saturday - Big sister came to visit again and then we went shopping for a Basinnette. Can't wait to get our baby home.
• 5-18-2008 - Sunday - One more day! Brogan has been awake and ready to eat every time I visit the nursery. Dusty has his bed all set up and ready.
• 5-19-2008 - Monday - Home! After a long long wait for the Oxygen company to get us set up to go home, we finally have our whole family together to relax. Before leaving, we got Brogan's baby pictures done, and he looked so cute in his outfit that Donna (nurse) kept him dressed up to show off to all the other nurses when they came in. He's our handsome devil!
• WOW - when we counted all of the bottles of surplus milk we brought home from the hospital - we had 45 4oz bottles! Holy cow!