Pictures

Here are some recent pictures:


Did I mention that Quinn started social smiling a week ago? This is SOOO amazing for me, as Kaitlyn NEVER did this! Wow, it brings joy to my heart! He's really a good baby!

The birthday princess, more interested in wearing all her decorations than anything else
snack time at preschool (before her birthday cupcakes)
glamming it up with her new birthday scooter

Grandma Corinne, Grandma Mame, Kaitlyn and Quinn
Trying out her "first" birthday cake for her 3rd birthday
Lisa B, Liz, Whitney and Lucy (friends (and sister) from K's birthday party), which I had thought of taking a picture with all my friends there before everyone left due to the cold.
Kaitlyn and Brendan in the slide

For all the pictures from K's party (way too many to post on blogger) to go my flicker account:

Kaitlyn's 3rd Birthday Pictures

October Update

10.17.08
So much has happened, so little free time!

Let’s see:

Brian's dad visited with us for about 10 days and then a few weeks later Brian's mom came out for another 10 days. Our house is too little to have them come at the same time!

A few weeks ago Kaitlyn got sick (welcome to preschool, always our fear, as Kaitlyn wasn’t allowed to be around other children due to her risk of illness). Not long after she got it she gave it to me and Quinn. I got 2 houses into escrow with work (a good thing, but unfortunately not much of a “maternity leave” for me). Basically things were very crazy and not much fun working, pumping and taking care of a newborn (sleepless nights).

Kaitlyn seemed to have come through the illness fairly easily. (we thought). Quinn on the other hand got very stuffy and couldn’t eat well, and had a fever of 101. After doing a lot of running around for 3 different doctor visits, getting blood draws and urine samples, it was determined that it was just a virus too. His fever went down and cold symptoms went away, but he was crying in pain, so we kept thinking he maybe had an ear infection (he didn’t), Our doctors office was great, but eventually it just went away on it’s own.

Kaitlyn and Quinn both had check-ups this week, and we found out 2 weeks later that Kaitlyn’s had gone into an ear infection (hence explaining why she’s been super cranky the last 2 weeks)! (She’s been on anti-biotics for 10 days now, but I think she still has a fever.)

Back-ing back up again, 2 weeks ago Kaitlyn had 2 developmental evaluations and her first dental appointment. Our NICU has a developmental evaluation follow-up for preemies. Her appointment lasted 4 hours and was mom cranky afterwards!

Here are her test results from a test that was given back in august:
(She was tested at actual age of 33 months, adjusted age of 30 months)
Visual reception - 26 months
Receptive language - 36 months - her strong suit!
Expressive language - 36 months also strong
Fine Motor Skills - 26 months
Gross Motor Skills - 25 months

Her NICU evaluation came back:

She was given a “Bayley” test, which I think is a fairly accurate assessment
Results: (again tested at almost 36 months actual/33mo adjusted)
cognitive age equivalency of 34 months
Receptive Language 34 months
Expressive Language: 37-39 months
Fine Motor: 28 months
Gross Motor 26 months
Other results: “difficulty attending to tasks without moving, increased activity level, sensory hypersensitivity with sensory seeking behaviors, decreased social communication skills and attachment. It is unknown how much Kaitlyn’s visual deficits affect all these areas.”

Then the results from the ridiculous geriatric neurologist (from the NICU follow-up):
1. Hypotonia (meaning: condition of abnormally low muscle tone)
2. Apraxia (meaning: Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.)
3. Low Vision
Atypical behavior due to 1, 2 and 3 above

Now I really dislike the neurologist who made the above evaluation, I personally think he is full of shit, excuse the language. But he is as old as molasses, and made his diagnosis in about 2 minutes, while Kaitlyn was tearing apart his office (after a 4 hour test). I disliked him the first time I met him when Kaitlyn was 6 months old, I too then thought he shouldn’t be doing this anymore.

Here were their recommendations:
See a Developmental Pediatrician
OT for sensory processing and motor coordination
continue speech therapy for communication skill and oral motor coordination
recommend PT
recommend special education or regular education with treatment for apraxia and low vision
be re-evaluated again before Kindergarten.

Kaitlyn will be going to the UC Berkeley Low Vision Assessment Program in a few more weeks (which was very difficult to get approved by my insurance, but finally the school district stepped up and is going to pay for it).

School evaluation:

The day before she had her Early Intervention school follow-up in preparation for her IEP. They had to stop testing her at level 5 because she couldn’t sit any longer (not sure exactly what level 5 means) as she was far beyond in many ways. She of course proceeded to trip over the curb (2 times) which showed them how she stumbles, falls all the time. She was hyper, but they were so impressed with how smart she was. In a way it was “disappointing” (isn’t that crazy) as my gut tells me something is up, but she doesn’t always show that side of her when she’s interested in things.

The good news is that she did qualify for special education and as all of her Regional Center therapists recommended. Everyone calls her a “different” case, she doesn’t fit into any of the regular boxes. She didn’t qualify for full-time special day school, just a speech class and a movement (OT class). In her 2nd day of speech class, (which I think is going to be great for her), the teacher commented that she may need more consistent days of school (more than 2 1.5 hr sessions) after seeing her for just 2 days, which validates that she tends to “test” well but that the evaluators didn’t’ really get to see her idysycroncy . The speech school will try to make her look at eyes when she talks, and clearly noticed her lack of abilities in gross and fine motor skills, as well as self-help skills, but commenting to me again that she’s very bright and different than other developmental delay kids.

Eating:

Hmm, hard to explain exactly what is going on. Kaitlyn hadn’t vomited (until today) for probably close to 2 months! She unfortunately, however is loosing weight (which she’s never done before), she hasn’t gained weight since may 08 and is now moving backwards. I let up on forcing her to finish meals (which I think is what lead to the vomiting going away), BUT she’s just not eating very much.

I struggle with this Daily. Part of me so wants her to be a regular toddler that is a “picky” eater. Many toddlers don’t eat much, but then make up for it with a really big meal. The problem is that Kaitlyn never eats that really big meal. She’ll eat a “decent” meal every few days or so, but doesn’t eat enough to make up for the calories that she didn’t’ take in. She really doesn’t like to drink milk. We fortify milk with either cream or Carnation instant breakfast to get more calories in her.

When she does want to eat, it’s quite exciting to watch. In fact, it’s been so long since I posted but Kaitlyn had her very first McDonald Happy Meal about 2 months ago! Wow, isn’t that a funny thing for a parent to be excited about! Only those parents of kids with a feeding disorder can actually understand my joy, and the fact that we took pictures of the “Event!” Now she loves French fries, so ate an entire small bag of them, ate 1 chicken nugget and had about 2 sips of milk.

Kaitlyn had her 3 year check-up last week and I told her doc that I wanted to take out the gtube, the doc asked what our GI doc said (who knows I haven’t spoken to her in ages, as I’m really on my own in this task to get my daughter to eat). I suggested they speak, and they came back saying, no don’t take it out, do a 3 day food diary. Uggh. Haven’t done that yet, have been too busy.

Good news on one front, Kaitlyn HAS gotten taller, in fact she’s 95% height for her adjusted age and 50% height for her actual age. I felt good about that fact and was less worried about her weight, but I guess her BMI is still poor for the height /weight ratio and that’s what has the docs a bit worried. I can’t get any more food in her orally. I’d have to go back to giving her bonus bolus via tube, which I’m really, really fighting. How can we ever be done with the tube is she gets “used” to the tube. I was a skinny girl, maybe she’s just small. This is very frustrating!

We are closer to being a typical toddler, but she still isn’t very good at chewing, still prefers soft foods and can’t eat an apple or raw veggies, no way! Bites have to be very small, as she’ll gag on it, but at least now she often knows the bite is too big and will give it “back” to me, saying too big of bite.

Birthday Bash!

Wow, what a great time we had celebrating Kaitlyn’s 3rd birthday! 70 people came (over 24 kids), If you can believe it, it rained however (well, it did clear up by noon that day) but it was chilly and windy and the few days before (and after) it was in the 80’s. But it ended up being a wonderful party. We held it at the same park where we celebrated her first birthday.

To honor Corinne (before the kids did the piñata) I asked everyone to think for a moment of our beloved Corinne and how much we miss Kaitlyn’s twin sister. I could hardly get it out, I started getting really chocked up and that was that. I had ordered 1 white balloon that I was going to release, but it ended up not making it (I think due to the wind). I really wanted to memorialize Corinne more, but the moment was too emotional for me so it was brief. I think those who know me though knew how important it was.

Kaitlyn had a wonderful time, as you can tell by her pictures. She was in typical fashion very hyper and couldn’t’ sit still for a moment. She loved covering herself in party hats and fiesta beads, the more the better as far as K was concerned.

And the comments I received from those who know what Kaitlyn has been trough when it comes to feeding were so funny. They all loved seeing her stick her fingers in her cake (this was the first she’s ever done this) and eat goldfish crackers off the table. I guess she was an “eating” machine, she was snacking a lot and had a great time!

At her birthday party almost all of Kaitlyn’s grandparents were in attendance, what a treat: Grandma Corinne (my mom) and Grandpa Rich (from Los Angeles), Grandpa Poppy (my dad) and Grandma Mimi (from Los Angeles), and Grandma Mame (Brian’s mom) from Pittsburgh, PA. (Grandpa Gille was just out a few weeks earlier).

We even had a face painting and balloon lady-clown named star that was a big hit. Thank you everyone who attended, it meant the world to me and I know that Kaitlyn loved her party, she still keeps talking about the piñata and the candy, party hats, streamers and balloons.

Quinn

Quinn is doing just fabulously! It’s so nice and amazing to be able to write that. He eats like a champ (From the bottle). I attempt to breast feed a bit, but he really doesn’t like it much and mom gets frustrated (due to the fact that I’m working and don’t really have a lot of free time).

Maternity leave? Not for me sadly! Not long after Quinn came home I became very busy with work (a good thing) and just closed 2 escrows this last week.

I’m still a pumping queen and have already quite a bit of breast milk stored up for the little guy. I really, really hate pumping though, have I said that before. It’s really what’s making my life difficult as of late, as it takes 30 minutes when I pump. I’ve just recently cut out a pump or 2 during the day (and went 8 hours sleeping at night recently too).

Quinn is up to 10 pounds (or just under at his last check-up). He does however have some fluid on one of his testicles that they are closely watching.

He just started social smiling. Kaitlyn NEVER EVER did this! It’s so wonderfully tear-jerking amazing to see. Wow, he’s such a beautiful, good boy and now that he’s smiling and interacting, I’m in love! I got my dream of a healthy, “normal” experience this time around and I’m loving it. It’s not really all that hard. It’s so easy to leave the house with him, I always feel like I’m forgetting things when I leave (syringes, vomit cloths, etc).

Now, he’s still eating every 3 hours (throughout the night too) and I’m extremely tired, but that’ what’s expected of an almost 3 month old newborn so you won’t hear any complaining from me!

On Friday last week I drove to Los Angeles with both kids and my nanny. I had to attend a conference for work, and my mom couldn’t take care of Quinn all night (he’s still up every 3 hours). I never much went anywhere when Kaitlyn was still tube fed and vomiting, as it was just too difficult, with all the supplies and the vomiting. Once I knew I could stop and get a happy meal for her I knew that I could start having a bit more freedom. However, it was hard to drive with a newborn who needs to eat every 3 hours. The drive was very long and once we were in LA hit some horrible traffic, so the drive ended up taking 11 hours! Ugggh!

I then spent 2 days away from the kids at a conference (meaning uninterrupted sleep for 8 hours for 2 nights in a row). Wow, I haven’t slept that long since I was hospitalized back in June.

I got h home last Tuesday night (well Wednesday morning) at 4am! Yes, how stupid am I. I figured driving at night would be easier on Kaitlyn (as she can sleep and I won’t have to stop and do marathon feeding sessions), but I got delayed, (it still takes forever to pack) and didn’t leave LA until 10pm. I was DEAD beat upon returning home and it’s taken me the last few days to recover.

Well, that about get’s you up to speed on everything.

I'll try to work on pictures soon!

October 4th

Kaitlyn is 3 tomorrow (10/4), haven't had time for a blog update. We all were sick the last week, even Quinn, but everyone's on the mend now.

Today we had our IEP with our school district, and I almost cried. Almost cried due to the fact that I had to be there discussing my daughters special needs at all and almost cried because I miss her sister and want her there too. How my life is sooo different than I had planned.

We have 70 people coming to celebrate her birthday, why does it continue to make me feel sad instead of celebrating?? It's also supposed to rain (it NEVER rains in October, especially this early, espcially knowing that it's been 80 degrees all week, and is supposed to become nice again sunday)

I want to do something to honor Corinne, not sure yet what I'll do, but it's important to ME, even if it makes others uncomfortable.

Kaitlyn's first day of school!

Wow, what a day! talk about tears. Today was Kaitlyn's first day of Preschool. She will likely be one of the youngest ones in the class, it's for 3 years olds, and Kaitlyn will be 3 next month (but of course developmentally, she's still more like a 2.5 year old). We'll see how it goes for this month. Kaitlyn will be evaluated for special school in a few weeks and she'll likely qualify. We may do a combination of both, we'll see.

As I stood back and watched Kaitlyn jump right into drawing, the tears started rolling (of course, did you expect anything different?) All I could think of was joy and sadness at the same time. Joy: thinking of how far my little darling has come from lying in an isolette, weighing just a mere 1.5 pounds. Now she's going to school without her mommy! And sadness: sadness for missing Corinne that should be right there by her side. It was quite an emotional moment for mom, that's for sure.

Kaitlyn didn't show much separation anxiety with my leaving, I told her I was going to be leaving, and she said "ok". But when I came to pick her up afterwards (it's a 2 1/2 hour program, very small class size) she was showing signs of separation anxiety. It was sort of cute. She loves her mom and does miss me! After going home, boy, did she fall asleep easily for nap time.

A mom I had just met at the meet and greet last week gave me a big hug as I was tearing up, her daughter is in class with Kaitlyn and her younger son has a lot of disabilities, so I think she really understood how proud I was that Kaitlyn was in mainstream school as well as being sad over missing Corinne. Thank you Jennifer for the hug!

Kaitlyn drawing at school (yes she's drawing on the pen cap). She hyper focuses on things all the time.

Mom and Kaitlyn having walked to school from our house, Kaitlyn just said to me: "hold my hand"

Kaitlyn with her lunch box and backpack, very excited!
Mom and Kaitlyn in the classroom
One of Kaitlyn's teachers, Meggan

Kaitlyn & Feeding:
We've had some backwards development. Her weight started dropping and we started getting more worried about the calories we are getting in her (like old times). She has started misbehaving, refusing food, batting us away and basically making meal-times very unpleasant again. We've also had some vomits again (however, the vomits we had were due to her not-chewing as opposed to being full, she still swallows things whole when she needs to chew them (even though she can chew) I think she gets lazy. But I do attribute some of the behavior (in general, not just around feeding) from her little brother. I think it's setting in that the little fella is here to stay and she's not super happy about it. As well as our worrying more about the calories and her weight. Grrrr. it's so frustrating. Id love to be one of the those parents for when their child doesn't eat that I can just say, ok, who cares, she'll eat more next time. Maybe some day?

More updates:
Brian went back to work today, so this afternoon and tonight will be my first day on my own. Saturday, 26 hours I'll be totally on my own...uggghh..I'm a bit nervous actually. Trying to pump, feed Kaitlyn and bottle feed a crying Quinn at the same time is going to be crazy. Oh and work too! Oh well, I'm sure I'll figure it out. Not sure how long I'll be able to keep up the pumping this time around. I've got a little stash stored up at least, and hope to try to pump for at least another 3 months, but we'll see!

I still freak out all the time that Kaitlyn really has a lot of developmental disabilities. She is always so much more interested in things than in people. She is so hyperactive in busy environments. Her NICU 3 year follow-up is in a few weeks, it will be interesting to see what they say. But how much can they evaluate in a few hours?

Quinn:

I think the little fella might be refluxing a bit. We've had quite a few marathon feeding sessions (or maybe this is normal, I have no idea) which usually happen at night (not fun) where he cries, wants the bottle, drinks, falls asleep, you put him down (on an angle of course) he fusses more, but won't take the bottle, until maybe 10 minutes later, then drinks some, and does the same thing all over again. I can get big burps out of him (that helps), but is this normal, I have no idea???

He also is still anemic (have to have another blood draw this week) so maybe that's where the tiredness is coming from, he has a horrible case of baby acne (poor little fella) and one of his tear ducts is a bit blocked (all normal baby stuff, really). All-in-all, he's really doing quite well, is growing and we are more in love with him every day!

Super Busy:

Brian's dad Edward (Quinn's middle name) was here for a week and just left on Sunday. He was wonderful and helped a lot with the kids, especially for the early morning Quinn feeds (we are NOT morning people). My dad and stop-mom had also visited last week and my mom was here for 4 days not long after Quinn came home. While Ed was here we went to the Zoo, (to try to cool down in SF with a heat wave going on at our house, which I think is adding to Quinn's baby acne), Train Town and a haircut. With all those house-guests, it's been a bit crazy around here and I'm sooo behind on everything, announcements and especially hand written thank you notes for all the wonderful presents for Quinn we've received! I promise they are coming!

Kaitlyn's 2nd haircut, no tears this time. she "wanted" to go!

Ed, Kaitlyn and Dad at Train Town

A fellow Micro preemie and surviving twin, Sam, and Kaitlyn
One of the best things about the support groups I run is getting to meet moms that I know "on-line" in person. Amy Collen (above left), her husband John and Sam, (a 24 weeker surviving twin) belongs to both my local preemie support group as well as my Micro Preemie Support Group (global). It was so nice to meet Amy and Sam in person, they came to visit us and brought us some yummy cookies!
The McCarthy family taking a break from the heat at Train Town in Sonoma County. Going out in public! We couldn't do any of this with Kaitlyn after she came home . This is such a different experience this time around, it's amazing to me. I don't have a feeding pump, syringes and have to worry about vomit at any time. Wow! I had this baby carrier with Kaitlyn but was never able to use it, as it was too hard with all of her feeding supplies. I feel like a real mom this time around!

Brian and Liz celebrating their 4th wedding anniversary at Forbes Island. A cool restaurant in SF. This picture was taken from the light-house. You have to take a boat to get to this restaurant and can go up to the light house to watch the sun-set. It was over 100 degrees at our house when we left (only 26 minutes from SF) and it was so chilly I had to borrow Brian's jacket due to the wind in this picture! You can see the Golden Gate Bridge in the background We haven't been out to dinner for ...well, I don't know when it was last. We were able to get out twice this week (for my birthday and for our anniversary) as Brian's dad was in town. It really makes us miss the fact that we don't have any local family.
A better sunset picture of the bridge in the background.
Brian and Liz, alone at last! After almost 2 months on bedrest, 2 weeks in the hosptial, it's good to be "free" again!
Dad and Kaitlyn pointing out giraffes at the zoo
Ed and Kaitlyn at the zoo.

Please say hello for 2008

I realized this is a bit late, but I'd love to know who is checking in on the McCarthy's for 2008:

Please add a coment with:

1. Your name (last name can be anonymous if you want)
2. Where are you from?
3. How long have you been visiting my blog?
4. Has my blog helped you?
5. If my blog was made into a book would you be interested in purchasing/reading it? Giving it to a friend? (This is something I've been considering for some time, but can't seem to find the time nor have the energy to edit it). I'm open to any suggestions here!

Thank you for all of your continued support. It's amazing to me what started out as a way to update my friends and family when my water first broke back on 7/26/05 has turned into a blog that has had well over 1/4 of a million hits and the number of people who have told me I've inspired them or helped them in some way. This was never my purpose, but I'm so glad that I've been able to help others.

I know that I couldn't have survived this far and been as well educated on issues surrounding my children if it weren't for others out there. Many I've met in person, many I've met via the Internet. Either way, many millions of thanks go out to "YOU" for everything you do to help me and my family.

Funny Jogging stroller video

I have a BOB Revolution Jogging stroller (which I love by the way). The other day a mom I know sent the following link for those of us who forget how to collapse the stroller. This store (LullabyLane) is located here in the San Francisco Bay Area and made the video.



After viewing the above video, I happened upon this video, "Jogging Stroller Races" video, which made me laugh hysterically. thought I'd share:

All's well, crazy, but well!

Nothing wrong, everything is great, wow it's nice to type that.

Just have been crazed trying to get into the swing of things.

Some basic updates:

-Quinn is a bit anemic so we've had to have a few blood draws

-He's eating like a champ!

-We had a doc visit today and he now weighs 7 pounds 2 ounces! He's at 50% weight for adjusted age

-His due date is tomorrow, 8/27!

-We no longer have to fortify my breast milk with Neosure (which is a formula given to preemies to help them gain weight)

-I'm pumping every 3 hours during the day and about 4 hours at night, and like Kaitlyn am having a tough time of it, I have very sensitive skin and my nipples can't take the abuse very well (any suggestions for help)

-Quinn isn't breast feeding well still (he latches well, but gives up (I think he's just lazy now) and it's too exhausting to try to breast feed, bottle feed and then pump, hoping this isn't making me a bad mom, besides the fact that my poor nipples have taken a beating from the pump).

-I've stated working again, so it's been crazy juggling

-My mom came back once Quinn came home to help and visit for 5 days

-My dad and step-mom came for a day visit last Friday

-Brian's dad came Sunday to help/visit for a week on Sunday

-My birthday was yesterday! (ugggh 42 years old)

-Brian's dad's birthday is tomorrow

-Our wedding anniversary is on Thursday (4 years)

-Our feeding therapist (Dr Patel) is here today - this will be Kaitlyn's last time with Dr Patel most likely! (we may need a bit of consulting work here and there) but what I haven't mentioned in a while is.. DRUM ROLL PLEASE- Kaitlyn has only vomited 1 time in three weeks!!!! This is huge, I"ve been wanting to post more on the subject, but I just haven't had a free minute (I'll update more later). She's eating really, really well generally. We still have to measure and weigh out her food and work on feeding her, but generally, her feeding and chewing skills have really improved a lot in the last 2 months.

-I've been sad again that I'm no longer pregnant, I just finally put away all my maternity clothes (or gave them back to the wonderful women who loaned t hem to me). But we are done, no more children for the McCarthys, I didn't get the have the normal pregnancy that I wanted, but the I'll take the outcome - a normal, healthy baby that we love dearly like his sister.

But generally, Brian and I comment to each other that we think that Quinn is so much easier to take care of than Kaitlyn was and even still is. WOW, we feel like we do have our much dreamed about "term baby" experience. The kids doctor today even told me that Quinn is a healthy, regular baby, yes we'll still adjust his age, but he's doing really, really well. He's not a fussy little guy at all (except for on occasion when he grazes when he eats for a 2+ hour period at night which isn't fun). Yes, we are tired, as he eats every 3 hours, but he cries, he eats, that's it. NO vomit. No measuring feeds, no feeding tubes, just eats and poops, occasionally spits up and that's it! What an amazing thing. I remember when moms used to tell me when I'd "complain" about how hard it was to take care of Kaitlyn and they'd say, "oh, my baby spits up too". I"m telling you, a spitting up baby is NOTHING like a what we had to deal with when we fed Kaitlyn. That was projectile vomit, horrible projectile vomit - NOT spit up!

Kaitlyn has generally been indifferent to her little brother, but has been acting out a bit lately (nothing too bad), saying things like, put Quinn back in bed, no feed Quinn, but I think all the family in town has been helpful in keeping her occupied. We'll see what happens when things get back to just Brian and I! And we'll see how I manage once Brian goes back to work, that's what really worries me to be honest. Kaitlyn is still hard to feed and with feeding Q all night and trying to work, I"m a bit worried. Just with the last few days of work being really busy all of a sudden I've been crazed!

Here are a few pictures of our now 7 pound little fella!

Dad and Kaitlyn checking out mom's cupcakes
Kaitlyn eating her first birthday cake ever!
Mom and her 42nd birthday cupcake, yes, within 42 candles, thanks to dad!

Kaitlyn trying out her new swim goggles in the bath tub.

homecoming pictures!

First a few pictures from Thursday, my friend Lisa was visiting (mom to 4 preemies) taking pictures and Whitney was visiting too (step-sister) and they were there to hear the news that Quinn could come home on Saturday!

I know it seems funny that I'm smiling while Quinn is crying, but you have to understand, we NEVER heard Katilyn cry (and still can't) to this day. His cry is music to my ears! Mom attempting to breast feed and feeling very happy about the little guy actually trying, (never had much luck with Katilyn), but he's still not doing all that great at it. He tuckers out after a few minutes and starts crying, wanting milk from the bottle.

Trying to burp Quinn

Aren't baby feet the most amazing things?

Proud mama in the NICU

Going Home Day!

Quinn's going home outfit (not really planned out) First time without leads (monitors) attached. It's such a feeling to hold your baby (and scary) for the first time without looking up to the moinitors to see if he's breathing and getting enough oxygen. It's also amazing not to have to worry about all the cords. Only NICU mammas can understand this amazing sense of freedom (and fear) at the same time!

Quinn in car set on floor of NICU. This is when I first started really crying. Quinn was in the NICU in the same exact spot that Kaitlyn was when she went home and I remembered putting her in her car seat on the floor and so many emotions came rushing back to me. I'll see if I can find Kaitlyn's picture in her car seat for comparison. Quinn is SOOO much smaller on going home, which is also crazy, as obvioiusly Kaitlyn was such a smaller baby at birth.

Here is Kaitlyn on her going home day in her car seat!

Kaitlyn's home coming with our dog Kailan

In the car. Freedom! Of course I looked at him over and over to make sure he wasn't turning blue and not breathing.

At home at last!

Kaitlyn checking out her baby brother

Wow, this picture melts my heart!

Today, Kaitlyn checking out her baby brother sleeping. In the morning Kaitlyn runs out in to see where Quinn is.

This picture today of Quinn sleeping reminded me of the front cover of a Preemie book that was our bible while we were in the NICU with Kaitlyn.

Quinn is home!!!

Sorry for the delay in posting, but Quinn came home to us VERY SURPRISINGLY on Saturday afternoon!

Here he was poky eating and then all of a sudden on Friday we were informed by the docs that we could likely bring him home on Saturday! Holy cow!

This sent us into an excited frenzy as we really weren't the least bit ready for his homecoming!

So, no time for posting or checking email, but our son is home with us!

Quinn came home weighing 5 lbs 4 ounces. (Kaitlyn came home to us weighing 7lbs, so he's a little guy!) He was so tiny in his car seat!

He is doing great, eating like a champ (from a bottle, not very well from mom however). We were SOOO worried about how to take care of a "regular" eating baby, not having to measure out feeds, feeding tubes, etc. It's like we are first time parents again.

He cries, he eats, he poops, he goes back to sleep! So far so good. (no vomiting, no feeding tubes, no measuring out food). I'm having a hard time estimating how much he wants per feed without wasting my breast milk, but I guess I'll get used to that.

Kaitlyn's been very cranky about the whole thing (understandably), but she's not normally a cranky little girl.

Mom and dad are tired, but doing well all-in-all. Oh and Quinn is 3 weeks old today.

Quinn is 2 weeks old

Yesterday was Quinn's 2 week old birthday. Mom started driving again! Yipee.

I was so nervous when I first set out (I was also pumping breast milk at the time for my first drive) on the way to the hospital. I hadn't driven in so long (almost 2 months) it felt so strange to be "free!" I also went to my Feeding Disorder meeting yesterday at the hospital (hey, I was there visiting Quinn in the NICU anyways), it was my first social outing for a LONG time. I was sooo tired last night, but amazingly today is the first day I feel sort of "rested". Maybe the anemia is starting to go away.

Quinn came off the cannula yesterday (again), let's hope he stays off this time. He is actually starting to take some more milk! Yippee!! I'm almost afraid to jinx it or something, but he is crying and wanting to eat, but still often won't take his full-feeds, BUT he has taken a few full-feeds (45ml) which is huge. He quickly drinks 20-30ml and then stops, so it's typically takes a lot of coaxing to get the rest of the feed in, but if he doesn't take it orally, the nurses gavage him the rest (yucky feeding tube). He's back to an oral tube (that's put in an out when needed) and he gags horribly when it's put in (wouldn't you?)

Quinn is still under his birth weight, but is gaining finally.

Here are some recent pictures:

Dad giving Quinn an oral tube feeding (brings back memories doesn't it? It sure does for us)

Quinn still looks so big in most pictures, so here is a little bit more reference with Dad holding him.
More snoozing on dad's chest
Yes, I am a little fella
Holding mom's finger
Still a tiny guy (under his birth weight still)

The Mighty Quinn

You may or not be aware, but there is a song called:

"The Mighty Quinn" (although our little guy isn't all that mighty at the moment, I love the lycrics that say:

"But when Quinn the Eskimo gets here
Everybody's gonna jump for joy

Come all without, come all within
You'll not see nothing like the mighty Quinn"

Here are the full lyrics that we keep singing to ourselves
(this wasn't why we named our litle fella' Quinn) but they are cute:

Everybody's building ships and boats
Some are building monuments
Others jotting down notes
Everybody's in despair
Every girl and boy
But when Quinn the Eskimo gets here
Everybody's gonna jump for joy

ome all without, come all within
You'll not see nothing like the mighty Quinn
Come all without, come all within
You'll not see nothing like the mighty Quinn

Let me do what I wanna do, I like my sugar sweet
But jumping queues and making haste
It ain't my cup of meat
Everyone's beneath the trees feeding pigeons on a limb
But when Quinn the Eskimo gets here
All the pigeons gonna run to him

Come all without, come all within
You'll not see nothing like the mighty Quinn
Come all without, come all within
You'll not see nothing like the mighty Quinn

Let me do what I wanna do, I like my sugar sweet
But jumping queues and making haste
Ain't my cup of meat
Nobody can get no sleep, there's someone on everyone's toes
But when Quinn the Eskimo gets here
Everybody's gonna want to doze

Come all without, come all within
You'll not see nothing like the mighty Quinn
Come all without, come all within
You'll not see nothing like the mighty Quinn

8/2/08 - Saturday Update

Today upon our arrival to the NICU Quinn's nurse told us that at 10:00 am he took an entire feed! We were hoping to feed him ourselves at 1:00pm for his 1 feed of the day, but I had told the nurses if he was really looking/sounding like he wanted to nipple than to go ahead and do so, which they did! The nurse indicated that he took almost 30ml in 5 minutes, then really struggled with the last 15ml, but that was great news.

He finally gained a bit of weight last night (after loosing 3 ounces the night before, hence the reason that they wanted to reduce the amount of times he nippled to only 3x per 24 hours).

He does still have his nasal cannula (oxygen) but it's on room air (meaning the same amount of oxygen that we breathe) but it's flowing in at 1 litre, which means if he doesn't take deep breaths, then the flow would help him. He was saturating quite well.

8/1/08 Update

Hi everyone,

Good news, Quinn came off oxygen yesterday and is doing really well on room air! phew, this means a big sigh of relief for us. I was really scared when he was getting worse and not better and the doctors were stumped also.

The "bad" news is that Quinn continues to be a very sleepy guy and isn't putting on weight. The thought is that trying to nipple/breast feed is just tiring him out even more. He'll take about 1/2 of his feed orally, then won't take anything the next feed or 2 in a row. He's still under his birth weight considerably. He is on fortified breast milk (which means a formula called Neosure is being added to my breast mik to make it more caloric) and the docs have now increased his feeds to 45mls (1.5 ounces) every 3 hours.

They put in an NG tube today :( (This is a nasal-gastric tube) that is taped to his cheek. Oh, boy is mom scared). Before this point they were putting in an OG (Oral Gastric) tube at every feed and would pull it out after the feed.

There are plusses and minuses to the NG tube being in place all the time.
the good- Quinn doesn't have to gag at every feed when the put the tube in (which is horrible)
the bad - the tube is in his esophagus which leaves the esophagus spinchter a bit open, which can lead to reflux (my opinion here) but I have a lot of experience on this subject!

We just want the little fella to start taking more of his bottles!

Until he does he won't be coming home to us, He'll be 2 weeks old this upcoming Monday.

Brian and I took a break from visiting him today. Kaitlyn misses us while we are gone every day. Brian is still having to drive me around (until Monday), nothing is getting done around the house (not that it matters, but...), and I'm pumping milk around the clock and need naps every day and it seems Quinn sleeps the whole time we are there anyway. It's back to that helpless feeling that there's nothing I can do at this point.

Thank you for all reaching out to me, I'm VERY VERY behind on answering emails/calls at this point - I hope you understand....

3PM update: as always nothing is ever status-quo in the NICU:

Quinn was put back on O2 (oxygen) at a very low amount, as he had some desats and is now going to be nippled only 1x per nurse shift (3x per day) as he continues to get too tuckered out.