Henry playing with butterfly

Henry is playing with the butterfly Uncle Michael and Aunt Jamie sent him - he loves this toy most of all. George is helping me talk to him at the end :-)

George and his train and helicopter

George loves his train and his helicopter so why not play with both at the same time?

rollin', rollin', rollin'

Henry has officially rolled over from back to front :-) and so it begins! He is 4 months old.

just a few more

George playing in the little bit of snow we got - wow it sure was cold!

Henry loves to watch George! George has a new interest in this toy...

Henry is so strong!

Henry's first swim

We finally got Henry in the pool, he seemed to like it or at leat not hate it :-)

random pictures

I finally got the time to pull some pictures off my camera, here are a few....

Our nephew, Sam looking at the Trout in the fish exhibit in St. Regis.
Emily and George just playing around.

Mom and Henry from Mom's visit.

Mom, Henry & Emily - George wanted nothing to do with taking a picture, smiling or sitting still.

Pictures from this weekend

We have had such a great time this weekend. George has loved playing with Sam and spending time with his Grandparents. We went to the park, MOBIUS (children's museum) and just played around the house. Here are a few pictures of the kids.

Tapping Sam

We went to the Children's Museum in the mall yesterday with Mickey, Jon, Emily, Sam, George and Henry. We got so many great pictures and videos. This is a video of Sam tap dancing. He seems to be a natural. This was at the beginning and Mickey and I agreed that he was getting better the more he did it. I am not sure where he has seen this but it fascinates me that he has the arm and leg movements of some of the great tappers. He had his own personal percussionist, she would do costume changes but Sam stayed consistent in his wardrobe.

Riding With Sam

Happy Thanksgiving to all! This is a little movie Drew put together of George and Sam riding their scooters in Spokane. Emily, Kevin and Henry make cameo appearances too.

Henry at the tire store

Henry and I went to get snow tires for the van and we were there forever. I made a pallet for him and he was being so very cute. He gets camera shy and clams up when I pull out the camera but I did manage to get a cute one of him "talking" to me.

Pictures from Grandma's visit

Here are some pictures from Grandma Blair's camera - isn't she beautiful?!?!?

Just an update

Difficult to believe it has been over a month since I last posted something (blame it on facebook if you will). The boys and Emily have been so busy. Mom and Grandma Blair came for a visit - all of the pictures are on their cameras so I will have pictures when they send them to me (hint, hint).

Emily turns 14 in two days and is such an amazing individual. She is more beautiful everyday and I couldn't love her more because of her inner beauty and strength. Her school work still needs to be first priority which she forgets but as long as we stay on her (poor her) then she does well. She is in choir this year and loves to sing. Her french horn playing is improving and she just completed the chromatic scale which will soon bump her up to the Symphonic band. She anxiously awaits basketball and track. We went to a batting cage the last time we were in Spokane and she really liked batting and would like to try out for softball however it may interfere with track so she will have a tough decision ahead of her - maybe there will be a way to do both....

George turned two and is really starting to understand what a birthday is. He had a great party with good friends all around. He received so many great gifts, lots of trucks, a scooter and a wagon just to name a few. The last couple of days we have been "ditching the binky" which is a tiresome process. Now that he is a big two year old he can have the binky for his nap and at bed time but otherwise they are for babies. Next step will be to not use for sleeping - baby steps. We are entertaining potty training but it is difficult to find a couple of days with nothing on our plate to focus on it. George is always the entertainer and stunt guy. He finds many things to jump off of each time just barely missing the coffee table or wall. He is enjoying the use of Skype to talk to Auntie Anne and Maw Maw - such an amazing thing (anyone else who is using Skype let us know and we will put you on our list). We also use gmail video chat to talk to daddy while he is at work.

Henry continues to steal our hearts by the minute. He is smiling and talking and just brightening every morning with his presence. What an amazing individual! Our trips to the cardiologist have been very positive and the last visit Dr. Hardy said a "more than 50% chance he will never have any more surgery" - first commitment from him :-). We go back on Dec 12th for another visit and we only expect great things.

"Hey Big Guy"

George's new phrase is "Hey Big Guy" it took us a while to figure out what he was saying but it sure is cute. He also learn "I love you" with emphasis on the I and the You. Sorry if we missed anyone - he loves you all :-)

George & Henry

Just a little bit about the boys. Henry is gaining so much outward character. He has always had this inner strength that you could see by looking into his eyes but now he is starting to put on a show for us. :-) He is such a precious little guy. George is still crazy about him and wants to take care of him. The other day I was getting some things together so we could leave the house. I had laid Henry in a chair so I could make a drink for George and Henry wasn't happy with this situation so he started crying. I was just going to let him cry for a few minutes while I finished. George decided he needed to be picked up and proceeded to do just that. I heard George struggling a bit and looked over he had Henry in his arms and was walking toward me saying, "Mommy, Henry, Mommy, Henry" - yikes!! Fortunately this all worked out ok and I was able to get around the table to him before he dropped him or tripped. Needless to say it took several minutes before I could breathe or stop shaking. The above video was taken today of Henry smiling and talking to me. The below video is from two days ago of George playing outside with Bodie. Any of you whom he has talked to on the phone can get an idea of what he is doing when he is telling a story. He uses his hands a lot even on the phone.

7 weeks

It is hard to believe it has been 7 weeks since Henry blessed our lives. It seems so much longer than that to me - Seattle seems like forever ago. Anyway he is doing incredibly well. We went to the cardiologist last Thursday and he said all looks good, there was really no change since the previous visit two weeks before. They are still keeping an eye on the coarct to make sure it grows with him as it should. We go back in a month. He is gaining weight, eating well (very), he watches everything we do - especially Emily and George. I am pretty sure he smiled directly at me the other day - he coos and moves his arms in a very authoritative fashion. He is starting to like baths a little bit more each time - still not a huge fan though.

George loves baby "Hinney" he is doing better with the binky and actually will give his up (which was really Henry's) if Henry starts to cry. He tries to give Henry the binky sometimes which resembles someone stuffing a turkey. Henry will certainly be a tough little guy. George has so many new words - his favorite is "moose" he can pretty much tell the difference between an elk, moose and deer (not every time though). We were watching a show on animal planet the other day and they were talking about a platypus (only for a few minutes). George walked away seemingly uninterested and went to a box of books and toys he hadn't paid any attention to in a long long time and came back with a book. He handed it to Drew who looked at it to read and saw that it was a book George had gotten in a Chick-fil-a kids meal about Atticus the Platypus. We do not have Chick-fil-a anywhere near here so it was from either last May or Christmas when we visited Mississippi last. He continues to love his sandbox and usually when we can't find him he is there very content.

As some of you know we get a basket each week from a local family filled with fresh vegetables. With the end of the 'fresh anything' season coming soon the local farmer's market is closed and we now either meet Farmer Brown's family somewhere in town or go to his home/farm to pick it up. He has a great set up with lots of room to roam and nine children each with a specific job to do from the charming smiles of their 3 month old to the fantastic baking abilities of their 19 year old. We get fresh flowers, hand made soap, incredible breads and cookies and of course vegetables. George is holding one of the zucchinis from this weeks basket. I will be sad when these baskets end and look forward to next years bounty. We went to pick ours up this week and George played with their two year old, Joey - they had so much fun playing in the dirt with Joey's excavators and tractors and other "CAT" trucks. Great ideas for birthday gifts - cannot believe he is almost two.
I will post some on Emily in a little while ( I need to get a picture) - the natives are getting restless so typing is not so easy right now.

Just plugging along

Everything has been great here lately. Henry is doing really well and is on an every two week visit rather than every week to the cardiologist. He is eating very well and gaining weight. He is getting used to his surroundings and sleeping well. We have been out shopping a few times but it is nice to stay home. George has been really good and as always, enjoying life to its fullest. Drew put sand in his sandbox and he is in heaven. It is hard to get him out of the sandbox but he has been listening pretty well. As long as he knows he can play again he comes out to eat and nap :-). He seems to love his baby brother and wants to hold him (this only lasts for a few seconds and then he wants to run and play. He is still the "binky thief" but has now resorted to taking Henry's and replacing it with his own. I suppose he just wants to see if Henry's binky is better than his. George has been busy helping Drew do projects that were put on hold while we were gone - it is amazing how difficult it is to get back to normal after being gone for three weeks. We are beginning to lose the feeling of being overwhelmed and normal is beginning to sink in. Emily is doing well and keeping us busy. She is enjoying school and doing well with her work so far. She is managing volleyball at this time and gets to travel with the team providing her grades stay up. She has been attending the youth group at the New Life Church until RE starts at our Church. She wants to take voice lessons this year. I have inquired around a little for this and am waiting to see if this will be a possibility. She doesn't seem real interested in taking piano this year but is still palying the French Horn in band. Here are a few pictures of George and Henry.

Henry sleeping

George and his monster goose-egg
Drew and his boys

Two moose

Things are beginning to get back to normal. Henry had his first visit with the cardiologist and everything checks out really good. Dr. Hardy wants to monitor a few things over the next several weeks but feels confident we are close to being told we have a normal healthy boy. Henry went from 7 pounds 5 ounces when we left Seattle to 7 pounds 12 ounces at Dr. Hardy's office 4 days later. We will monitor Henry's weight gain but Dr. Hardy gave us the go ahead to exclusively nurse. A few other pictures on here - the moose from the real camera (much better picture), Drew and his boys, George and his latest attempt to land in the hospital (we actually did take him in to get checked - the swelling was scary), and Henry sleeping peacefully.

Home Sweet Home!

We made it home Sunday evening and it just felt wonderful. Henry is doing really well, George seems to be accepting everything, Emily is excited to be starting school again and our guests opted out for breakfast :-). We have been doing regular normal things today -opening mail, laundry and picking up after George.

Yesterday on our way home we stopped at the Jesuit mission so Henry could eat. As we were leaving we passed a swampish area and saw a Moose and her calf - amazingly this is only my first (and second) moose. It was pretty cool because when Henry was in the NICU Drew and I found a small moose to put in his crib as a strong animal representative for Henry. Even more we had bought one for our neighbor, David as well - so seeing two moose was pretty cool for us as we are on our journey home from all that we have encountered these last few weeks. It is difficult to see because I took it with my cell phone but the moose are in this picture. The calf is on the island and the mother is in the water.

Hard to believe Henry is 3 weeks old today - his incision is healing very nicely, he is eating well and sleeping well.

Discharge is in the works!

The Cardiac doctor just came by for a final check on Henry and she is authorizing discharge as I type. WOO-HOO!!!! Now to get in touch with Drew and find a Uhaul trailer to get us home :-) - trailer is not really necessary :-)

Wireless baby Henry

Yesterday we took all the tubes, monitors and PICC line out. The only thing he had left was the feeding tube (which I personally placed into his nose to his stomach). He was finished feeding and it hit me - I can disconnect the feed line and carry him around. Some Seattle friends of ours were visiting and Drew was in a waiting room with them I proceeded to very casually (with the biggest grin ever) walk in unattached to polls or monitors - What an incredible feeling! Libby and Melissa were also visiting and I am not sure which one said it but they called him the Wi-fi baby :-).

Last night we continued with the bollus feeds and Henry, my little superstar ate each of his bottles on his own therefore the pump was not needed.

I asked our nurse what the chances were that we would get discharged today (yesterday they prepared us for a weekend discharge) as opposed to tomorrow and she said she is going to recommend it highly. She said there is no reason at all to keep him and we should be allowed to go home and be a family. Her stand today is to be our advocate for discharge. I almost kissed her but refrained and just told her I love her :-).

Below is a picture of George in his chariot that Libby drug around from park to park yesterday. They had a beautiful Seattle day to enjoy and George had a blast. Libby didn't seem worn out at all but she may just have a good "poker face" :-). Thanks again Libby!!!!

Thank you Uncle Jeff!!

Uncle Jeff called today and it turned out they had two tickets for the "really, really good seats" that he wanted to know if we were interested in using. Well, I convinced Drew that he should go and take George with him. They left the room here late and then ran into some friends we made here that insisted on feeding George - needless to say, they made it to the stadium, parked and still made it to the seats in time to see an incredible play at home plate (by the Mariners, of course) after which they gave the ball to George - how do things like that happen for him??? So George and Drew are practically sitting on top of the Mariner's dugout and George now has a game ball - I hope none of the players end up with a slight concussion :-). Here are pictures Drew sent from his phone, just so you can get an idea of how close "really, really good seats" actually are.

One by one

The tubes are coming out. Henry was really showing off this morning. He ate 31 cc's by bottle (most he had done up to now was 23 cc's), his vitals were perfect so they ordered the monitor to be turned off (they will do spot checks), they are stopping the lipids since his weight is consistently gaining which means they ordered his PICC line to be removed. By this afternoon the only thing he will still have is the feeding tube. So here is the last picture with all the lines hanging off of him :-). Check out the fat and happy belly!

Below is George at the docks with Drew. They are watching the boats and apparently the fish as well. How smart was Dad to break out the stroller????? They are having fun and waiting to meet Libby for George & Libby's bike outing. Libby rented a pull behind carrier for George and they are going to hit multiple parks - sounds like fun!

Sweet picture

This is the picture I was referring to earlier. This was just after George woke up in our hospital room and came over to me as I was holding Henry. The OT (Occupational Therapist) nurse placed George in my lap so both my boys could be with me. If only Emily were here too :-).

The light at the end of the tunnel is getting closer

Henry ate almost an ounce at his bottle feeding this morning. They are beginning the "bollus" feed in which I will feed him every three hours and they will supplement with the feeding tube. Because weighing before a feed and after a feed isn't always accurate I will continue to pump and feed him from a bottle :-( just so the numbers will be correct and we can get out of here. They are beginning the preparation for us leaving on Monday morning (by noon). Many people have come in regarding this so it feels really real. They are talking about and setting up training for us to keep the feeding tube in for a short while after we get home. We need to learn how to put the tube in, if it comes out and also so we can change it when needed. I am not certain how often they change it but I overheard the neighbors nurse say that theirs had expired and needs to be done. I can not believe how much we have to learn, medically speaking, I hope it sticks :-).

Henry was looking at me so sweetly this morning so I snapped a picture. He is so cute how he just searches your face and seems so content with just that.

Drew and George made it here by train yesterday. George was asleep when they got to the hospital. I carried him in and laid him on the "bed" in our room where he slept for three hours. When he woke up he came over and climbed into my arms as I was just finishing the bottle training with OT. He stayed there for a little bit looking at me and then Henry. He seems to be ok with all of this. He was a little bit puzzled but very much intrigued by the baby on the other side of the room and wondered why she was there. She is scheduled to be discharged today or tomorrow (I think) so it will be interesting to see who our new roommate will be. I wish we could move to the window but we will take what we get. Libby is going to take George to the zoo today which will be a lot of fun for him. I hope Libby has her running shoes on :-). George is a wild man and not at all condusive to hospital rooms and quiet hallways. He seemed quite determined to become a patient here at Children's - hopefully he will not succeed LOL!

Daddy and George are coming for a visit!

Good morning sunshine!

Good morning on this Wednesday. Henry and I are doing well and anxiously awaiting daddy and George's arrival. The sun is out today so we will go for another outing. They have an incredible children's area here for patients and their families so Henry and Daddy and I will watch as George plays. Drew and George are taking the train over and it has been a fun adventure so far. George is forever the host as he would walk thru the train cars with dad saying hello to each passenger along the way - I am surprised and relieved that he wasn't compelled to shake hands with all of them :-). Fortunately I was able to convince Drew that a sleeper car is worth the extra money so we didn't have any worries of George making his way thru the train cars solo. All is well and they should arrive here in about and hour or so.

George on the train

Henry is doing really well on his feeding. They are turning the volume of breast milk up and turning down the IV nutrients. He looks to be a bit ahead of schedule (as is his pattern) and should be off the IV nutrients late tonight or in the morning. Three times a day they turn the drip off and an hour later let me feed him through the binky trainer, breast or this afternoon we will try the bottle again.

Step forward or back?

Although they keep telling me it is a step in the right direction it just feels like we are stepping back a little. Henry now has a feeding tube in place that will help him to get the extra calories he needs to get off of the synthetic nutrients. By Thursday they think he will be ready to nurse and then supplement the remainder with the tube feed. The Nurse Practitioner said in her most optimistic opinion we will be looking at discharge the first part of next week.

Our first outing

Because Henry is down to only an IV drip of nutrients we are allowed to go for walks around. One floor down from here there is a nice patio. Henry and I decided a little fresh air and sunshine would do us some good. It was not the easiest to maneuver around with a stroller and the "tree" that holds the IV drips but we made it outside and really enjoyed the Seattle sunshine. My "long arm shot" needs a little perfecting but you get the jist of it :-).

Learning to eat

You would think it is simple - we all have to do it and most of us enjoy it more than we probably should but Henry just needs to learn how to eat. He is making progress. Occupational Therapy came by this morning and gave me a few tips. It seems (logical enough) that Henry is just needing a smaller amount. I suppose when a baby is born they get the little bit of colostrum then as the production comes in more and more each day the baby adjusts and consumes more. The first nurse said not to worry because you don't want him to work too hard to get food - well he was getting too much too fast and hardly trying at all. So they have put him on a "binky bottle" which works really well. He had 10ml about an hour ago and then slept. They are considering putting a tube to his stomach to get his quantity up so he can get off the nutrient drips faster. I don't know if this will delay things or not but we will see if they even want this done. He needs to consume a couple of ounces every 2 -3 hours so we are a bit of a ways away :-(.

Drew is now home in Montana, George was pretty happy to see him (of course) - check out the video.....




They went to go pick up Bodie who oddly enough (very sarcastic) was injured even more (his own doing) while we were gone. He decided to escape from a six foot kennel while ripping his stitches (that were about to come out) even more leaving him in a semi body cast. Did we mention we could never thank the people that have come forward to help us enough???? This is yet another reason why!

Moving on up

We have moved and are semi-settled in our new room. Henry, of course made the change with no problem but Drew and I will take a bit more to settle in. This oddly enough feels more like a hospital than all the chimes and wires and monitors of the NICU and CICU. We are in room 4021 and there are kids all around us. You hear other people and children and many have moved in quite comfortably. There are older babies in walkers and babies on floor mats getting tummy time, bouncy seats and play areas. It is a lot less "hands-on" and it will be much more difficult to leave to run an errand or get food. Hopefully Henry will begin to eat like a champ and they will begin to process our papers to leave this place. Here a picture of Henry settled into his new crib and sleeping peacefully.

We are graduating

There probably will not be another post for the remainder of the morning because we have to pack our things to make the move to recovery. The cardiac ICU team just came by on rounds and gave Henry his orders to go be normal. We will move to a recovery room on the same floor. We will wait there until they see fit to let us go home. They will do lots more testing and echo cardio scans but they feel that everything will be great. We do not have a time frame for fully getting to leave Seattle but it it's getting closer.
Have a great day,
Drew

Very Special

It has been a wonderful day:

Today has been the most wonderful day yet. Other than being in CICU Henry had a normal day. He did what all babys do only with a little less crying. He is looking good, sounding good, and his numbers continue to be good. The doctors have taken him off all heart regulating medications to see how he can do on his own and so far everything has gone well. His oxygen remains in the 90s but he is reciecving a little boost from a nasal canula. They said it takes a few days to build a reserve. His heart rate is in the 120s and we have had no irregular rythems in the last 48 hours. They said that his recovery has been exactly like they had hoped with no abnormal issues. During the day the sun shines through our window (a window is a huge deal around here) and Henry is even getting some sunshine. Below are afew pictures from the last few days and at the bottom you can see a short video of me feeding Henry. It is scary picking him up and moving him around because of his healing scars but I am even getting used to it. Debbie is like a natural when it comes to working around the IVs and Tubes. She has been able to feed several times today and even rock Henry on her shoulder.
We continue and will continue to say thank you for everyone that is checking on Henry. We feel like the most supported people in the world.
Cheers,
Andy/Drew

Some Pictures from the last few days