So this is Christmas...

As for having a stress free holiday, I would give myself a C. I made an effort, but it didn't exactly work out. There were of course many bright spots:

• The boys and I put together a gingerbread house and I didn't make a single suggestion about which candy to use where (see proof in the pic, the gingerbread bears all had 3 eyes).
• Kyle made bracelets for me, his teacher, my mom and my sister. He did spend lots of time and really seemed to enjoy it. He also helped me with wrapping, picking out the paper, coloring the to/from tags, adding bows. This was a little hard, I love to wrap presents, I can get lost in the matching paper and bows and ribbons, I have been know to pick presents based on size so I have more wrapping options, but of course, having Kyle involved and so into the process is more important and I did save a couple to wrap all for myself. He was also very into the nativity set and moving Mary and Joseph close each day and into the stable last night, then finding Baby Jesus in the stable this morning. His other big holiday project was his new found passion, a magic show. He bought a book with his own money a few weeks ago. He gets frustrated with the fact that it's not as easy as it looks on tv and that you have to practice, but he has gotten a few tricks down and performed them for the family while Jason was finishing dinner. I think my sister was actually surprised on at least on instance.
• Ryan ate sweat potatoes with some degree of enthusiasm at dinner tonight. This was really the best present I could have hoped for, I have been so worried about his appetite and starting solids. Hopefully it will continue. We also took Ryan to church this morning for only the 2nd time (the first being his baptism). We have been taking turns to keep Ryan away from crowds, but Christmas morning is actually pretty sparse, so we decided it would be ok just this one time. We so seldom feel like a family of 5, I appreciate it when we get a chance. I am not overly religious, but I love going to church on Christmas morning, dressing the boys up, seeing the nativity, singing the songs and all 3 boys were so well behaved this year, Ryan actually fell asleep on Jason's shoulder.
• My sister and I went together and got mom Celine Dion tickets and she was so excited.
• Grant is so grumpy it is actually cute. The only thing he wanted was "Thomas going down the waterfall" which is basically a plastic train track with a motorized Thomas. Since we started the wooden set when Kyle was 2, it has grown quite large, so adding this plastic set made no sense from a practical standpoint, but he wanted it and it wasn't very expensive, so in it came from Santa's sleigh. He did love it, but refuses to let us put batteries in Thomas, so it is essentially the same as what we have. We ask to put in batteries, and he just says "No, Thomas is fine". His absolute favorite toy is the toy racetrack Santa brought for Ryan, he was so patient waiting for Ryan to wake up from his nap before opening.
• Jason gave me a new sewing machine to replace the one I have been borrowing from my Mom that is older then me. Now just to find the time for a new project.
• I had some time off. It seems December has been a busy month for me the last few years, and it was nice to be off this year. I took advantage and still used my daycare/Mom on Tuesday and was able to get the house clean (with Jason's help) and presents wrapped. This went a long way towards making things less stressful. I am still so tired though. I am hoping I read this someday when I am 60 and remember what is is like for my kids when their kids are small, not that my family doesn't help, they do and they are great, but I just want to make sure I remember why having help is so nice and offer it if I am able.
• I also used my time off last week to take the boys sledding while my mom was watching Ryan. It was the perfect day, snow, but no wind so it wasn't cold and we had fun, but their differences in personality were so apparent. Grant loved every second, sliding down the hill and saying "Can I do that again, mom?" and pulling his sled back up with no complaints. Kyle had fun to, but it was always like, maybe if we go down that hill or use this sled or stack the sleds on top of each other it will be even better. By the end I am yelling, "Just sled down the hill and have fun". Kind of defeats the purpose, but we did have fun.

As for the stress, I think it is just a feeling of guilt that the boys have so much. I think I just use the holidays as an excuse to buy things they semi-need (e.g character pjs, they may need pjs, but they don't need Thomas and Batman PJs) or things I want them to have like books and Leapster Games and stuff that is a "good deal" (e.g. half price moon sand). It all just adds up to too much, especially paired with the grandparent gifts and gifts we exchange with cousins. I know I need to cut back for their sake, but just can't seem to make myself. Maybe the rule next year will be shopping only with Jason.

Other then the overshopping on my part, we have so much to be thankful for this Christmas and we really did try to enjoy and make the most of it. Jason did cookes with the boys on Christmas Eve as always and we made our usual jokes about "this is not supposed to be fun, it is supposed to be efficient" when the boys just wanted to cut out cookies any which way. I can't believe Ryan will be walking and eating real food next year, he'll probably also refuse to sit in pictures or let me dress him up in a santa hat.

6 Month Check Up and Pictures

Ryan had his 6 month checkup this week and as you can tell by the pic, he was a very healthy 17 lbs 9 oz (50%) and was 27.5 inches long (85%). His lungs were clear despite a little congestion and his noisy breathing has almost completely resolved. As expected, the doctor was very unconcerned about my concern for his low appetite and complete rejection of any and all solid food. The medical student making rounds with him that day who appeared to me to be about 12 suggested I create a more positive atmosphere when introducing solids. Ok, thanks, I'm sure that's it. I don't even want them to "do" anything about his appetite, just humor me and say that it could be related to his surgery and like everything else, just needs time. Also, when I asked about getting a flu shot since he was officially 6 months old, he said he wasn't that concerned because the rest of us did get the shot and he was already getting 3 pokes. Ok, to a heart mom, 4 pokes is nothing and you were very concerned when we opted to follow our cardiologist's advice to forgo the RSV shots, but a $30 flu shot isn't "worth it"? Needless to say, a new ped is in our future, I have a couple of great recommendations from a friend whose baby has a "complicated" history as well. I am just so not the type to go around changing doctors and I really have no complaints about the care he has received. I believe his is a really good doctor, but this is obviously not working for me. Ugh.

Since Ryan's 6 month birthday fell during December, I didn't want to take him to a busy, germy portrait studio, so I tried to set up a little studio in my hallway, next to the front door for light, which I would have liked to have had a little more of. I was in the office taking pictures and the FedEx guy delivered a package and I'm sure he thought, "What is this naked baby doing setting by himself in the hallway". I had a little heater out so he didn't cold and he loves it when I get out the camera. He smiles so easily. He is probably like, hey, mom is actually looking at me and paying attention to me instead of just schlepping me around on her hip.

6 Months Old!

Ryan is 6 months old today and I didn't even take his picture.  I guess he is now officially a third child.  He has his 6 month check up next week and I am already dreading it.  I am just getting more and more worried about his appetite.  I remember how excited I was when he started cereal and seemed to really like it.  It turns out that was the first and last time he seemed to like it, now nothing makes him madder then when we set him in the high chair and have the nerve to try and spoon feed him anything.  I am not worried about his weight, I think it is fine, but only because he likes to nurse when he is tired and as much as I like nursing him now, that is not a long term option.  I just have the feeling that when I bring it up with his pediatrician, Dr. M, he will just blow it off and say he is gaining weight.  I should probably try to find a new doctor, the one I used to see left the practice and I don't dislike the 2 others but I just don't feel like I click with them, they never seem to understand my concerns or questions.  I don't really know what I would want them to do anyways.  We will see, maybe things will get better and I can find something new to worry about.

My Two Wise Men

Since I am the keeper of all things Santa Breakfast, my kids got to have fun with the nativity costumes.  The breakfast went well, it was my first year of being in charge and I am happy to report there were no major problems, amazing given that I had a huge work deadline and was living on very little sleep.  Mom brought the boys later, along with Ashlie and Lilly and they had a good time.  Grant whispered "I want to see Santa" and he never whispers.  When asked what he wanted, he said "I don't know".  At 6, Kyle is still prefers to avoid Santa, but reluctantly makes the obligatory visit.  I really missed having Ryan and Jason there, but we are trying to keep Ryan healthy by avoiding big crowds.   It was just hard with so many other families and babies there.  This time next year, he will be Lilly's age and walking and this will all seem like a distant memory.  With the breakfast and the work deadline behind me (well almost behind me) I am determined to have a stress free holiday.  The kids are certainly ready.  We did the tree this weekend.  With the addition of new desks in my office we now have zero space for the tree.  We finally settled on moving the 1000 lb bookshelf that Jason made into our bedroom so the stress free holiday did not get off to the best start.  As usual, Grant felt like we had opened a box of new toys to play with.  We started putting my Hallmark Classic Car ornaments up on a shelf and when I came back he said, "Mom, look what he (Jason) did".  His class started making presents today.  When I dropped him off (I haven't done that lately, he usually goes with Mom since I have been busy with work) he said to his teacher "Hi, Miss Regina, this is my friend, Mom, we came in the CRV car".   Always good for a laugh.

Sitting Up, Eating Up and Spitting Up

I guess the title pretty much says it all for this post. We started feeding Ryan cereal at some point last week and much to my surprise, he took to it like a little bird. I remember with the other boys, it was so hard at first, they would just let it run back out of their months or bite the spoon and not let me have it back. But Ryan figured out what it was and couldn't get enough. This is good, because the one thing I have continued to worry about (ok, not the one thing, more like the one of a thousand things) is his appetite, which I don't perceive to be anywhere near what the older boys had. He can go completely through the night, 12 hours and wake up ready for the day, not screaming an looking for food. He seems to be growing and is happy, so I haven't risked a weigh in at the pediatrician's office, but I just worry that his little body isn't telling him what he needs. Like I said, he seems fine otherwise, he is even sitting up on his own. It's always hard to tell exactly when to call this milestone, he is still a little wobbly, but getting better every day. He continues to amaze me, hitting the milestones thus far at the same time or even early then his brothers. Unbelievable when you think he spent his first 2 months on his back, with no tummy time and less then ideal 02 sats for most of it. He has obviously moved past it all, I just wish I could say the same. I still find myself dwelling on the whole experience. I just can't seem to get it out of my mind. I met a new mom the other day and I told myself before hand that I wasn't going to mention his heart or the hospital time, but every thing we talked about made me think of it in some way or another and although I almost made it, I ended up cracking at the very end. This sounds very cliche, like a bad country song, but it's like his heart is fixed and I don't know if mine will ever be the same. In other goings on, Grant has apparently developed his first crush. We were watching, wait for it, Star Wars and a scene with Padme (the beautiful ex-queen now senator from Naboo) came on and he started giggling, then walked up and kissed the TV screen. We all just about lost it.

Hard Lessons to Learn

As someone who never imagined being the mother of 3, I have to say things go pretty well 90% of the time. But the thing is, when things start to go bad, they go way bad and they go quick. We don't often leave the house during the week, I want to keep Ryan away from crowds and germs and I usually spend my 2 non-working days on laundry and other house stuff, but Friday something got into me and I decided to go to Paradise Park and like I said, things went surprisingly well. Ryan watched the boys, then fell asleep and the boys played well together and with some other kids that were there, until the end where Ryan woke up screaming, Kyle realized he left his jacket and had a melt down and Grant just went flying out the door and across the parking lot. Things didn't improve once when we got home to a house littered with toys and a 3 year old refusing to help pick up. We said if he was two tired to pick up, he was to tired to watch our Friday night movie which didn't phase him until the movie started at which point he started to scream. I was trying to feed Ryan and reiterate to him that he wasn't watching the movie while tying the belt of Kyle's Anakin Skywalker costume (the movie was Clone Wars which he had been excited about seeing all week, I felt bad that the experience was less the ideal, he kept saying that the didn't care if he had to pick up all the toys himself, to just let Grant come out and watch). I think it's more frustrating because I think about what Ryan went through and how lucky we are and all the blogs and stories I have read of other heart kids that aren't nearly as lucky and I think I should be a different parent, a better parent who appreciates how lucky I am. I guess I at least realize that and while it doesn't keep me from having the bad times, it keeps them from lasting to long. Anyways, the picture was obviously not taken on Friday, but is the first I have mangaged to capture of all 3 of them since Ryan's been off O2. It was kind a warm up for a Christmas card picture.

5 Months!

So the title of this blog is Ryan's Hope and he is very seldom featured anymore which is a shame because he is really an amazing baby.  I hate to say anything to jinx myself, but he is sleeping through the night, actually through the evening night and part of the morning, he usually goes down around 8 and sleeps through until 6.  I was actually worried for awhile, that it could mean something is wrong, but he wakes up happy and is awake and alert for most of the day.   Whenever you lay him down, he immediately rolls over to his tummy and then squirms around.  The only time he holds his feet like in the picture is when he is on the changing table.  Looking at that pic, I realized you can barely see his scar, it has healed really well, very flat and smooth.  The other pic shows him holding his own bottle.  He only takes a bottle a couple of times a week, so I was really surprised to see him doing that so early.   We are all really enjoying our last baby, but I know we are done because it's such a good feeling to move outgrown clothes and gear into the garage sale pile.  Work is picking up for me, I should actually be working now so I am not to tired to enjoy my day at home with the boys tomorrow.

 

Mr. Responsibility and Darth Maul

Kyle was chosen by his teacher last week to receive an award for the character trait of the month, responsibility.  He was of course very excited when he came home and told me that he was receiving an award at the assembly.  When I asked for what, he replied "Because I am the most responsibility".  I got to go to the assembly and see for myself and I just can't believe what a big kid he has become.  He was the only one from his class to get the award and I was very proud of him, even if he left his jacket on the bus that very day.  Also attached are pictures of Jason's incredible pumpkins, if only we could parlay his gourd carving abilities into a sustainable income stream.  The kids had a good time, Grant vehemently refused to pick out a costume the two times we took him to Target to do so, Kyle got so frustrated, he wanted him to be Yoda to his Anakin Skywalker.  He said, "Grant, you are like the Grinch that Stole Christmas only with Halloween, you are the Halloween Grinch".  Grant did however have a last minute change of heart and put on Kyle's old Spiderman costume for the night.  Ryan was a very good sport about wearing the cutest little dragon costume and Lilly was a bewildered punk rocker. 

 

 

Ryan Shares His Milk

I finally got to send my extra milk to the milk bank in Denver.  I was waiting to see my doctor to have my blood drawn to send with the milk for testing and that happened yesterday so today I went to Hy-Vee and got dry ice, came home, packed up the milk and then drove it to the FedEx drop off site.  It was close to pick up time so the FedEx guy was there and I think he was sufficiently freaked out about handling a large box covered with stickers that say "Frozen Human Milk - Handle With Care".  I also called the milk bank at their request to let them know it was coming and to look for it.  They said they would put it on the big board and let me know when it arrives.  I am still a little fascinated and in awe of this process and so grateful that I can take part in it.  In the beginning, I was so sure all of that pumping would be for nothing, that Ryan would never be able to nurse after being on bottles for so long, but I kept doing it because I guess I really didn't know what else to do.  At one point I asked my pediatrician if it was worth it and he said "Of course, if you can make milk you should".  At the time it made me really mad because I thought, "he has no idea how hard this is".  But now I am so glad he didn't let me off the hook.  Ryan is nursing and I have been able to share some of that milk I pumped with a baby or babies that may really need it.  I just feel so lucky that it all worked out this way.  I know lots of really good mothers who try their best and the milk just doesn't come or doesn't stick around long enough.

Ryan's Baptism

Ryan's baptism was last Sunday the 19th.  It was the first time all 5 of us had been to church together, usually Jason goes early or I take the boys, so getting us all fed and dressed in reasonably nice clothes and out the door in time was a challenge to say the least, but we made it, barely.  We actually ended up sitting in front of the nurse practitioner from the CV Surgery team that took care of Ryan during his hospital stay.  She was the one that updated us during his surgery and took care of him in the PICU during his recovery.  It was so great to get to show her how big he has gotten and how healthy he is.  We survived mass and met up with our family who had gotten to church early and was setting on the other side (my dad and step mom even managed to get there early after driving to the old church).  Ryan was pretty tired by the time the baptism ceremony started, but he tolerated it pretty well and watched the priest with very wide eyes as he poured the water over his precious little head.  Kyle watched intently and even got to hold the baptism candle, a job which he took quite seriously.  Grant for the most part ran around like a little banshee, but did pause and watch the actual baptism, after which he exclaimed "You taking Baby Ryan a bath!".  My sister and brother-in-law nervously served as god parents.  I think they felt to young for such a job.  Afterwards we all went back to the house for lunch and Ryan crashed for a three hours nap.  When he woke up, his room smelled like chrism and I realized that it would be the last time I smelled that smell on one of my babies, so I tried to savor it and ended up not washing his hair until Wednesday.

 

Cardiology Followup Appointment

Ryan's follow up appointment with Dr. Drake was last Thursday.  I now know that he was really just checking (via a chest x-ray) to see if his diaphragm had started function again and .... IT HAS!  We are so excited and relieved to see the normal x-ray.  We had heard many times that it would, but never got any exact odds or a timeframe or explanation in general other then it can take a long time, so we had gotten discouraged, but it is all in the past now.  His lungs are clear and he no longer needs to take Lasix, a diuretic that was keeping his lungs from accumulating to much fluid which would have made his heart work harder.  When I was cleaning the kitchen, I saw the bottle and all of the syringe dispensers and thought about throwing them away, but waited for Jason to get home, so we could do it together.  He will not need to see his cardiologist again until April, 6 months from now, when he will have an echo (ultrasound of the heart) to make sure that his heart is continuing to function as it should and that there is no excessive narrowing of the pulmonary branches.  During his first follow up at 2 months, he had an echo that looked great according to Dr. Drake.  There was a small amount of narrowing, but according to Dr. Drake, that is really inevitable in Transposition because of the manner in which the arteries originally formed.  He says that he will watch pretty closely for the first year or so because growth is so rapid.  Eventually, he will need an echo just once a year.  I read the blog of a mom to a five year old boy who was born with Transposition and she was talking about that now his yearly checkup is about the only time she thinks about his heart and how that was a slow transitions.  Like anything, first she would go a day, then maybe a week and eventually think of it only rarely.   That's still hard to imagine, but I can at least imagine it now that his diaphragm is working. 

 

Another heart related tidbit, I finally got to met the heart mom that made the blanket that was in the care package we received from the CHD family support group while we were in the hospital (actually while we were waiting during surgery).  I knew the family went to our church because there was an article about them in the church newspaper and I had seen them a couple of times, but just never made it over to say hi after mass.  Today, I was at a skating party with Kyle and I saw who I thought was the same mom, so I asked and it was.  The story is kind of hard to explain and no where to start, so I am sure she thought I was a complete lunatic or stalker, but eventually I explained it and it was a great small world story.  I really want to get my act together and make a blanket or two for a care package to go to another family.

 

Brothers

So Grant was having a hard time getting to sleep the other night and Jason and I sent him back to his room about a hundred times.  He eventually stayed and we heard some commotion and talking, but didn't think much of it because we really wanted to watch an episode of LOST on DVD.  When I went to check on them later, Grant wasn't in his bunk, but had crawled up to Kyle's.  It was very cute and the next morning Kyle said "You know Mom, all Grant wanted last night was a little bit of company, so I let him come up to my bunk and I read him stories and we fell asleep together".   It almost makes up for the rest of the time they spend trying to kill each other.  Actually, I would say they get along about 75% of the time.  They both agree that they love Ryan though.  They both love to hold him, Grant will set down and say "Give him to me" and "Oh, baby Ryan, you are my best friend".  I let Kyle do a baby yoga/massage dvd with Ryan the other day and he took it so seriously.  Ryan for the most part loves it, but sometimes gives me a look like "are you kidding, leaving me alone with these two".  I actually took all three of them to the farmstead last Friday.  I always feel like taking all three on a successful outing is a bigger accomplishment the anything I have ever done previously.  It was a really nice day and Ryan had taken a good morning nap and ate well, so I decided to just go for it.  We all had fun, at least until we were watching the cow milking demonstration and I guess out of empathy for the cow (warning, stop reading if you have never been a nursing mom) my milk let down. 

 

In other news, Ryan was approved to receive the Synagis shot, which is a relief.  I got two letters from the insurance company, one saying he was approved the other saying he wasn't, so I called and they said he was but I am still keeping my fingers crossed.  He has his 4 month checkup on Wednesday and a followup with his cardiologist on Thursday, so it will be a busy week.

 

Milk News

I got my package from the milk bank in Denver with shipping instructions.  I am so excited.  A really ironic thing happened tonight as well, in the milk bank's newsletter it said that some preemie's born with underdeveloped eyes that are feed donor milk are able to develop vision and I just met the most adorable little boy who was a 23 week preemie and is blind in his right eye.  I just thought that was really strange and makes me so grateful that there is a mechanism for me to donate all of that milk in the freezer.

 

Hospital Memories

It seems like I have been thinking alot this week about the time we spent in the hospital. There are probably a couple of reasons. I had thank you cards with Ryan's picture printed to send to the different places in the hospital he received care. The card for CV Surgery and the PICU I was able to give to our neighbor. He is a pharmacist in the PICU and was such a blessing during that difficult time. We knew he worked at Children's, but weren't sure where until Jason ran into him on the day of the surgery completely by accident. He said he had seen a Stratman on the board that morning and started to connect the dots. He came to room where we were waiting at the end of his shift and told us Ryan's room was ready and that he really liked the doctor that was on call the next day. We saw him every day that Ryan was in the PICU and he always came to Ryan's room and told us we had the best nurse in the unit. It was just so nice to have a familiar face in all of the chaos that was the PICU. The other cards to the NICU, 4S, Cardiology and Lactation teams I just mailed and hope that they will find the right places. I don't know that anyone will remember us, but I thought they might like to see pictures of a baby doing so much better then what the see day in and day out. Another reason for my thoughts of the hospital is a post I received from a mom in Utah whose son was also born with TGA and is about a year older then Ryan. She has a founded a support group in Utah and her blog has lots of good information and links to other blogs about heart kids. I have probably spent way to much time reading these, but it is interesting to see the journey others have been through. Everyone is a little different and I was wanting to find someone who had also dealt with diaphragm paralysis, but haven't. Maybe it won't even be an issue for us anymore. When I was in for Ryan's last weight check, I asked if we could check his sats and they were in the high 90's as opposed to the low 90's where they generally stayed while we still had the monitor. That lead me to hope that maybe his diaphragm is working, but I guess it could also mean he is just compensating better. His breathing rate is still on the high side of normal and he still sleeps more then my two older boys combined ever did, so we will see. He sees the cardiologist again a week from Thursday. I am still hoping he got approved for the RSV shots, some part of the insurance company called late Friday to ask when the shot was scheduled, which I didn't know had been scheduled. They said they received the prescription, but it just said October and they needed the date and a recorded weight within 30days. I said that I would find out on Monday and I was so happy that he had been approved and she said that this was just the first step and she didn't know if he was actually approved. I will keep my fingers crossed. I'm going to try to focus more on being present this week and not thinking so much about the hospital and reliving all of the details, especially since I may start working again next week. I said that I would be available if they needed help and my boss said that everyone was busy. It's time, I think and maybe working will keep me spending to much time reading about CHD and obsessing over the past and worrying about the future.

On the edge

We went to the carnival this weekend and Kyle was just in between the "little" rides and the big rides. He still kind of wanted to ride the cars and motorcycles, but new they were for little kids and he kind of wanted to ride the big ones, but was still a little afraid. He ended up riding both, but only because I told him that Grant really needed him to ride the little rides with him. I can't believe how much he has grown up since just last year. He had to get a chicken pox booster shot last week and he didn't even cry. We still had to make our post doctor trip Target for a snack and some retail therapy, but last year, I had to carry him into the office, carry him back to the room and sit on him while he got shots. At least the flu vaccine is available as nasal spray which is a huge relief since this is the first year he has gotten it and will need a second dose in a month. I took Grant for just the flu vaccine after Kyle's appointment and he said "Oh, tank you for getting me my medicine mom". He is still in the habit of "tanking" us for the most mundane things (picking him up from preschool, dropping dad of to get his rental car, etc). He is also enjoying his new task of waking Kyle up in the morning. He always runs full speed to find me after he wakes up and asks to go wake him up and then says "Kyle Josephina, get out of that bed". Kyle is of course less then thrilled with the new arrangement.

Anniversaries

Jason and I celebrated our 8th anniversary yesterday. Actually, celebrated is probably not the correct word, maybe noted or observed would be more appropriate. He had been out of town at the Rolla career fair and got back late, just as I had got the boys into bed. He walked in with a water bottle that had been a freebie at one of the other booths and said "Happy Anniversary". He was kidding of course, he had actually gotten me a necklace with a stone for each boy. I had wanted it for awhile and had seen the charge when I balanced the check book, so it wasn't a huge surprise, but it is nice to finally have it. Kyle would have spoiled the surprise anyways. He made me a bracelet and as he gave it to me said "this is from me and the necklace from Dad is from me to". When I asked what necklace he got really frustrated and said " well, I'm not going to tell you which one, so just try to act surprised, ok?". It was really cute, Jason had showed it to him when he got it and one morning I was getting ready and he handed me the necklace I usually wear and I said "what I really want is a necklace with a 3 stones, one for each of my boys". When I looked in the mirror, he was smiling from ear to ear looking at the ground and then ran out of the room. He is usually so focused on his own things that it was nice to see him excited about someone else receiving. In other Kyle news, he is now insisting on wearing his old Nike's to school as opposed to his new tennis shoes, which are New Balance because "he just wants to". I can't believe his in in kindergarten and already has a brand preference. I'm just glad I don't have any girls to worry about clothing. We also just finished reading our first chapter book. I read a chapter each night from Star Wars, Clone Wars and while it's not a classic, it beat reading the same short book night after night, as he usually gets into a rut with his story selection. I am trying to think of another that would be good to start.

In addition to us, my grandparents are getting ready to celebrate their 60th wedding anniversary. They are having a card shower, so I made a card from each of the boys on Shapfish. Attached is the picture I used for Ryan, who I am afraid is coming down with his first cold. I am doing pretty well about not panicking and he seems to be breathing well despite the small bit of congestion, but I am keeping my fingers crossed and trying to give him lots of rest by not going anywhere, which makes us all a little stir crazy. Everyone says how quickly the kids grow up, and I know that, but day after day in the house with the 3 of them doesn't exactly make it seem like the time is flying by. We are going to try to go to lunch or dinner this weekend, if we can coordinate a time between soccer, birthday parties and nursing Ryan.

There is no potty

As I posted previously, the toilet in the boys bathroom was leaking and after multiple attempts to fix, Jason opted to just replace it. So he brought home the new version and took out the old one only to discover he was missing some bolts leaving us with no potty for Saturday. I didn't think much about it until Grant came to find me Saturday afternoon with wet pants saying sadly "Look what I did". When I asked why he hadn't put his tinkle in the potty, he said, "There is NO POTTY". Couldn't really argue with that. He was excited to "help" dad install the new version and like usual was very appreciative saying "Oh, thank you for my new potty". He can be very polite at times, for his birthday, every unwrapped present brought an "oh my goooosh" and an "oh, thank you for getting me this new puzzle/tractor/ball". The picture is of him and my niece. He thinks the world of her and has always called her "Sugar" after he heard me saying "Hey, Sugar, how are you this morning". He now repeats this phrase every time he sees her. Similarly, he calls Ryan "Sweet Heart" which is strangely appropriate for our "heart" kid.

Other then installing toilets and aerating the yard, we did manage to go out to dinner at Jason's Deli last night. It was our first dinner out as a family of 5 and I was so relieved that everything went well. No meltdowns and everyone liked their food. Just one head butting incident when Kyle tried to eat the rest of Grant's dinner so they could get to the ice cream quicker, but that was relatively minor (Grant has replaced biting Kyle out of frustration with this new head butting and we aren't really sure, but think it is the lesser of two evils since he is not very effective at the delivery as we work towards using words). I am glad everything went well, because I was really needing a break, it had been a hard day dealing with all 3 while Jason was busy working on house stuff. Today is more soccer and a birthday party, so we will probably split up letting Jason and Ryan stay here while the Grant tags along with Kyle and I.

Back to Normal

It's been awhile since my last post. Ryan is doing incredibly well now, but for awhile there wasn't much to post and I had started getting a little leery about documenting any progress because it seemed to always be one step forward, two steps back. He was home and on oxygen for July and most of August and we didn't really stray far. We had portable O2 tanks, but thankfully by the time I got comfortable using them, he no longer needed it. Although part of his diaphragm is still not working, he has learned to pull air into his lungs using the muscles between his ribs and in his neck.

He recently had a followup with his cardiologist, Dr. Drake, and he is so pleased with his progress. He had an echo (basically a fancy ultrasound of the heart) which showed that his heart is working very well, just some mild narrowing of one branch of the pulmonary artery which is really inevitable with a repaired TGA. His EKG showed a very normal rhythm and we have been fortunate that he has never really had any problems of that type. There was a little girl at childrens that had the same surgery the day after Ryan, but instead of an ASD, she had multiple VSDs which I think lead to more problems with the hearts electric system and how it beats. I am still worried about his diaphragm and what the long term impacts will be if it doesn't heal. I haven't really talked to the cardiologist or anyone about what it means long term, but plan to ask at his next followup in October. It could still heal and I realize we are very lucky to be where we are. Dr. Drake did say that it was keeping his sats in the low 90's instead of the high 90's because his lungs are a little "wetter" then normal and he kept him on a medicine called Lasix to help with that. He said the lower sats are not a problem and I trust him, but it is still unsettling for some reason. I think about him being able to run and keep up with his brothers and do the things they do and I worry about his getting sick this winter. Again, I realize things could be much worse and we are so happy with his progress and where he is now.

Probably the best news is that he is gaining weight well and I have been able to switch from pumping and feeding him fortified milk to nursing him which is about 100 times easier, especially at night. I am still amazed that he is nursing after everything he went through and I am very thankful to the lactation nurses at Children's that gave me so much encouragement when I wanted to quit pumping so many times. I am terrified of him getting sick with one brother starting kindergarten and another starting preschool and any extra immunity he can get is worth it. Because I pumped so much to establish my supply, I have a ton of frozen milk that I don't think he will ever drink. So I have been looking into donating it to a milk bank where it could be pasteurized and used for other babies who need it. They have a screening process that includes a blood test, but they pay for everything including shipping so I think it would be worth it. I just can't stand the thought of throwing it away after spending so much time collecting it, but I also really miss the space in my freezer.

Ryan is really a normal baby at this point. He has already rolled over a couple of times, which is amazing given that he have very little tummy time for the first 2 months of his life. He smiles all of the time and loves to watch his brothers. He "coos" alot and loves being sang to. He is almost sleeping through the night, I try to feed him around 10 and he almost always sleeps until 4.

Speaking of his brothers, they are both doing well. Kyle turned 6 and started kindergarten. He had a birthday party at the bowling alley which was lots of fun and he really likes school. He was heartbreakingly stoic on the first day, getting on the bus and finding his classroom all by himself. The plan was that he would ride the bus and I would meet him at school to make sure he found the right place, but he is one of the last stops and by the time I got to the van, drove and parked, his bus was leaving empty, so I went to his class and found him sitting with a friend from t-ball and two other boys. I took a couple of pictures and went to tell him goodbye and he was like "Ok Mom, get out of here". Other then school is playing soccer again which he loves. He had his first game and scored 2 goals which is good, because he is not much fun to be around when things don't go well. I hope that gets better this year because sometimes last year he would get frustrated if things didn't go his way and that just made things worse. He is lucky to have good coaches as opposed to last season when as he put it "They didn't have a real coach, so my mom said she would be the coach".

Grant turned 3 and started preschool and most importantly is now potty trained after what was undoubtedly one of the longest and most frustrating weekends of my life. We went straight to underwear and went through about 20 pairs a day, having basically no success for three days. I finally gave up on Monday and put him back into a diaper at which point he said "Mom, the tinkle is coming, let's run to the bathroom". I guess he had to prove he could hold out longer them me. I don't want to jinx it, but he has done really well since then. We are now working on aim so the bathroom doesn't always smell like a latrine. We actually need a new toilet in the bathroom they use and I joked that with 3 boys we should just install a urinal and be done with it. Being potty trained just in the nick of time to start preschool was good, because he really, really liked it the first two day he went. He just looked so proud to be a big kid. He is now repeating over and over the steps to write a U and Kyle is like "Ok Grant, we've got it".

As for Jason and I we are about the same. I am hoping to start working again soon. I am actually "practicing" working right now since with Kyle's half day kindergarten and Grant in preschool it works out best for my Mom just to stay here in the morning, so I will need to be disciplined enough to stay in my office during that time. It hasn't been bad so far, Ryan is a pretty good napper which makes things go pretty smooth most of the time. The best thing is that instead of taking time out to pump, I can just take time out to feed him. Jason is still working alot and just completed (with lots of help from his dad) some major repairs on the front of the house where two leaking windows caused some major damage. Oh the joys of home ownership. Our next fun things to spend money on are a new toilet an radon mitigation system for the basement. I feel lucky that Jason is so good at fixing things like that and that we also have his dad around to help.

Thanks to all who have asked about and prayed for Ryan. I am going to try to start posting updates more frequently (and less lengthy). I have always wanted to keep a record of the funny things my kids say and do as they grow up but have never been able to keep it going. A few a my friends say that for some reason, using a blog makes it easier so we will see.

Home Again

We are home again. Actually we were discharged last Thursday, but Ryan is on continuous oxygen, so we don't stray far from the living room. During the hospital stay, the doctor's confirmed that the right side of his diaphram is indeed not working due to nerve damage that occured during the surgery and the best plan is just to wait and see what happens. According to the surgeon's report, the nerve was identified during surgery, which means that there is a chance it will regain function, it will just take awhile (I never got a more specific timeframe). Meanwhile, Ryan is home on oxygen and has a feeding tube. He is still taking most of his feedings by bottle, but we just use the feeding tube when he gets to tired to finish. Since he is working so hard to breath and heal, he needs extra calories and can't afford to miss any. That's about all, thanks to everyone who has asked how we are doing.

Boomerang Baby

We are back in the hospital. We had a great week, but by Thursday, Ryan was having a hard time breathing and was sleeping most of the time. So Friday, I called cardiology, I called Jason, I called my friend Janet and eventually my pediatrician who had a 3:45 appointment. He agreed his breathing was labored and thought he needed to go back to CHM. I started packing up my things and he said, no, I think he should be transported. So I got to ride in the ambulance to the emergency room, the one part of the hospital we hadn't seen. Once they started oxygen in the ambulance, he felt much better. The cardiologist on call came and did and echo to make sure everything was ok with his heart, which is was. It is still just the diaphragm issue giving us problems. So here we are again, the boys and I are playing in the playroom. I am not sure what the plan is at this point, they can either try to fix the diaphragm or wait it out, cardiology was going to talk to CV surgery tomorrow. Hope everyone had a good weekend, will try to post soon.

Gaining Weight

Ryan had his first visit with his regular pediatrician on Tuesday and he weight 8 lbs 11 oz, up from 7 lbs 13 ounces when we left the hospital, so he is definitely gaining weight which is very good. The best part of this is that it means I can nurse more and pump less which makes me very happy. I asked about getting Ryan vaccinated for RSV and the pediatrician said he would try, but heart kids usually don't qualify unless they are having trouble with weight gain. I was like, "are you kidding me, he had open heart surgery 3 months before cold and flu season starts and he isn't sick enough?". We may have a better shot if the issue with his diaphragm can be documented so I will talk to the cardiologist next week and am keeping my fingers crossed. My biggest fear at this point is keeping him healthy with two older brothers in the house, one starting kindergarten and one starting preschool.

We are all adjusting to life at home. We all went for a walk Monday night, Kyle on his bike, Grant on his tricycle and Ryan in the stroller. It was a very "oh my god, we have 3 kids" moment" but we managed to make it around the block.

Home Sweet Home

We are home! Ryan was discharged on Thursday, July 3rd after 22 days in the hospital. I think that last week we spent on the floor was both the best and worst. Best because we got to stay with him all of the time but worst because things just moved much slower. When we initially transferred, people seemed to indicate we would be able to go home in a couple of days, maybe even Monday. All he really needed to prove was that he could eat and breathe without the extra oxygen. Eating was not a problem, although his appetite wasn’t nearly what it was pre-surgery. I could generally get him to take around an ounce at each feeding which wasn’t great, but would work. The oxygen proved a little tougher to shake. He was down to a very low amount (similar to the prositns pre-surgery) but just couldn’t seem to get by without it. I think I may have posted this previously, but they were thinking that one side of his diaphragm wasn’t working, probably due to a nerve being “touched” during surgery. Since this was expected to awhile to heal, the plan was to “dry out” his lungs as best they could with diuretics in order to get him off of the oxygen, so for a couple of days, he received more meds as we waited for his chest xray to show signs of improvement, which it never really did. On Wednesday, they decided to just send us home with oxygen since it would likely be awhile before he didn’t need it, which I was fine with just to get my family back in one place. That afternoon, the RT decided to try just one more time and low and behold he hung in there. They took another chest xray and this time it actually did show improvement. They had actually already delivered portable oxygen to our room for the trip home, but we were glad we didn’t need it.

Another thing that made the week more difficult was that one of his newborn screening tests came back with an abnormal result. Further testing has since revealed he is fine and in hindsight there were several reasons to believe the screening test had produced a false positive, but for several days I was paralyzed with fear and sadness. If anything it made me realize that everything is relative and things could always be worse. Actually, just being at Children’s Mercy day in and day out makes you realize how lucky you are no matter what your situation and lucky we are to be home. Kyle is for the most part indifferent, much as he was when Grant came home. He keeps his mind busy thinking about sports and playing with his friends. Grant on the other hand, can’t get enough of “my brother, Baby Ryan”. It is so cute. He is always telling him “hi”, giving him hugs, holding his binky and saying “look at those little feets”. It is just so nice to all be back in one place. Ryan is doing well, if you saw him, you would just think he was a normal newborn with some bruises on his hands and feet. He was discharges at 7 pounds 13 ounces, so he is still needs to be feed every three hours. He is amazing at switching between nursing and the bottle and we are doing more nursing each day. For now, he still needs some extra calories while he heals, so he gets at least 4 bottles a day of pumped breast milk mixed with formula. I have a follow up appointment with our primary care doctor next Tuesday and if he is gaining weight ok, we should be able to switch to mostly nursing with one bottle for his potassium and chloride supplements. We also follow up with his cardiologist in two weeks. I am not sure what will go on during that appointment, but we will see. Hope everyone had a good holiday weekend and thanks again to everyone who has sent well wishes and offered to help with the boys.

Update

Hi, everyone! This is Ashlie. Brandi has been unable to make it to a computer so she asked me to post an update for her. She apoligizes for not posting a blog in a while but she has been busy. Ryan has moved into a new unit of the hospital. Now, either Brandi and Jason must be there 24 hours a day because they are responible for most of his care (and they are doing AWESOME!) Ryan has made a lot of progress in the past few days, and everything is looking up. They have not given a check out date but we are all hoping he will get to come home soon. Kyle and Grant are doing well also. They have made several trips down to see baby Ryan, or Sweatheart as Grant is now calling him. Kyle is warming up to the idea of having another brother while Grant seems to be growing up into his big brother role fast and loves to help Mommy with Ryan.

Life on the Floor

Sorry I haven't posted in awhile. No that we are on the floor, I stay can stay with Ryan all of the time. In the NICU and PICU, we had to leave for shift change which is when I posted. Things are going well, but much slower. Ryan is eating well, although his appetite isn't quite what it has been. I am trying to start nursing and it has gone well a couple of times and not so well a couple of times, having to fix his bottle, and feed him and pump is just not sustainable in the long term. He is also still requiring just a little O2. They think there may be a problem with part of his diaphram that was caused by a nerve getting "touched" during surgery. I am not sure where we plan to go from here. Better go, I am on the computer in the play room. My mom brought the boys up for a visit and I want to hang out with them for awhile.

Moving On Up

Ryan was transfered out of the PICU onto a regular floor today. I have spent the day with the boys while Jason has been with Ryan. I will stay with him all of the time now, kind of like rooming in after a baby is born at a regular hospital, so I have been getting my bag ready in between games of hide and seek and Jr Monopoly. I am excited, but scared. I have heard it can be a rough transition, going from nearly constant attention of a nurse, to having an nurse managing mulitple patients. Keep your fingers crossed for me. Jason said Ryan still doesn't have much of an appetite, but he is consistently taking his minimum of 35 mL every three hours.

Another day in PICU

Ryan is officially off of all of his heart medications and he is doing great. This allowed them to take out his artrial line which means we get to hold him again which is wonderful. His lungs are still not back to 100% and the diuretics they are giving him cause him to have low levels of potassium, which they are chasing with supplements and other medicines, but until that is straightened out he will stay in the PICU. Maybe tomorrow we will be able to move to a regular floor. Have a good weekend.

Eating Again

Eating is the big news of the day. After Ryan was safely off the vent, they started him right back into taking bottles. He has done pretty well, although it may be awhile before he is back to eating as much as he did presurgery. Right now he is at around 30 mL per feeding (he had been up to 65). They took at one of his IV's t0day, so only about 100 more to go (actually more like 5). He is down to only one heart medicine which they turned down today and expect to turn off tonight. If he does well with that, they will be able to remove the line that monitors his artrial pressure and we will get to hold him again (right now, we just have to kind of prop him up with one hand and hold the bottle with the other). That's about it for now, Jason is here for the night shift and I am heading home to have dinner with the big boys. Hope all is well for everyone. Thanks to all who have posted and are thinking of us.

Breathing On His Own

Ryan succesfully kicked the ventalitor habit today. They spent most of the day weaning and about 5 he was alert enough for them to remove the breathing tube they had placed in his nose before the surgery. This was a big step forward. They also took off the O2 sensor that had been placed on his forehead, so he looks like our Ryan again. It is very good to see, I actually starting taking pictures. I am headed home to do bedtime with the boys and if that goes well, I may post some pictures, but I wouldn't bet on it with my little night owls.

Another Day

Ryan is still doing well. His chest closure went smoothly yesterday and they were able to turn off his sedative medications, so he is in the process of waking up. They have said this will take up to a couple of days. He is starting to open his eyes a little and wiggle. If he continues to wake up, they will be able to take out his breathing tube this afternoon. This is the next big step. Grant and Kyle are still doing well, loving life with Grandma and Grandpa. Kyle had a t-ball game yesterday and hit a home run, all the way to the grass. He was very excited. They have both colored pictures to hang in Baby Ryan's room. We are thinking by Friday, they may be able to see him again. The hospital has a sibling support group that we may check out, then do a quick visit and dinner in the cafeteria, which will be their favorite part.

More Good News

Ryan had a good night! They are actually closing his chest as I write this. This is a day ahead of what anyone had told us so this is very good news. It means we are one day closer to being out of the PICU (pediatric intensive care unit). I am still trying to get used to the routine around here, which is a little different the the NICU (neonatal intensive care unit). Hopefully, by the time I do he will be ready to move to a regular floor.

Answered Prayers

The surgery was a sucess! It was by far the longest day of our lives, but we could not have asked for a better outcome. The surgeon said that he had a perfect anatomy to accomplish the switch. Ryan did end up waking up before they came to get him around 11 and he was none to happy about the lack of food in his tummy. I think it made it a little easier when we did have to say goodbye because I knew he would be asleep soon. We were able to wait in the Ronald McDonald room which was more comfortable then the general waiting area and the nurse was great about giving us updates when they got started, when they finished the aortic side and most importantly when he sucessfully came off of bypass. The surgeon came at the end and eventually we got to see him in the PICU around 7. As expected, he had many, many tubes and IV's and other medical things connected to him, but he looked as though he was sleeping peacefully and his color was good. As usual his nurse was very nice and explained as much as she could to us. I never thought I would miss the NICU, but I had grown comfortable there and was able to participate in his care. For awhile at least, all we can do in the PICU is sit by and watch. I am going to try and spend some time at home the next couple of days while he is sedated and will try to post a few more pictures. Thanks to everyone who thought about us today.

Waiting Game

Lots of waiting today. Ryan had a good day yesterday and a good night. They opted to leave him on the tiny dose of prostins and let him rest. I held him alot during the day and Jason and I both came up last night and this morning for his last feeding at 6. I was afraid that this morning he would wake up hungry, but the nurse was able to sneak on last ounce at 7:30 (his cutoff was actually 8) and she did her assesment early so he has been sleeping for now (as I have said, the nurses are super human). They aren't entirely sure when they will come and get him for surgery, which I think I have said before, but he is the 3rd case of the day so the nurse estimated late morning to early afternoon. That's about all for now.

Thanks to everyone who offered to watch the boys. Our neighbors, the Haukap's entertain them almost daily and they had a good time with the Stockwell's last week and I am sure the will be at the Salmond's at some point this week. While Ryan is in the PICU he will be sedated while he heals and I will try to spend as much time with the older boys as we can, but once he is moved to the floor, he will need to have Jason or I with him at all times, so I will for sure be taking up more people on offers to watch them, which I so appreciate. As I have said, my family is amazing, showing up anytime we have asked, for as long as we have asked, but I know even saints need a break at some point.

Lots of good thoughts today. I will post when I know more. We are supposed to get updates at 1 hour intervals throughout the surgery, but it will probably be late this evening or tomorrow when I post again. Take care.

Meeting with the Surgeon

We met with the surgeon, Dr. Laughlin, and his nurse first thing this morning. We already had a pretty good understanding of the surgery, so it went fairly quickly. Ryan is the 3 case of the day, they predict he will go to the OR around 12, but it could flucate depending on the first two cases. They said the procedure itself takes around 3.5 hours, but the total time he will be away is much greater due to anesthesia, line placement and time afterwards to transfer to the PICU. The major surprise was that if all goes well, he will stay in the PICU for 3-4 days, then out to the floor and possibly home within 7-10 days. I was thinking 2-3 weeks and it completly freaks me out to think he could be having open heart surgery Monday and we could be taking him home the next Monday. We have the best nurse today. Actually, all of our nurses have been amazing, but Candy is a little older and gave us a good explanation about what to expect after the surgery. It's strange how things work out sometimes, that she was our nurse on the day we discussed the surgery.

Surgery

Ryan's surgery is scheduled for Monday. It's a strange mixture of relief and terror to finally know the date. We are meeting with the surgeon tomorrow morning to go over the surgery, although I think we already understand exactly what they are going to do. Today was a little stressful. They decided to again try to wean the prostins and then two hours later cardiology called and said to start weaning his oxygen as well. When I had talked to neonatology earlier, they had said we would do one then the other. It really didn't matter, by the time we started to wean the O2, his levels were already in the 70's, so they stopped. By 9 they had permission from cardio resume the prostins, so one step forward, one step back. Nothing much else going on at this point, just hoping for all to go well this weekend. Thanks to all who have posted and all who are thinking about and praying for us. It is nice to know Ryan has so many people cheering for him.

Good Night

Ryan had a good night. They cut the dose of prostins in half instead of turning it all the way off and have given him a couple of doses of a diuretic to help him get rid of some fluid that may be making it harder for his lungs to oxygenate his blood. Jason said they were planning to try stopping the prostins again today, so keep your fingers crossed. We want his heart as strong as possible for surgery. Jason and I are doing good, we have fallen into a little bit of a routine, I come in the morning and stay until late afternoon. Either Grandma or Grandpa comes to watch the boys so Jason can leave and go to work. He then comes after work so I can go home and be with the boys. Grandma is planning to take the older boys to our neighborhood garage sales today, so hopefully I don't go home to a house full of new "treasures".

News from Cardio

I finally actually talked to the nurse practioner from Cardio this afternoon. While they are still saying he doesn't need the prostins, they at least are conceding that turing them off completly does cause problems. She mentioned a couple of things we could try, cutting the dose in half and weaning him from the O2. She was going to coordinate with Neonatology. Tomorrow is the big day when they conference on their pending cases and hopefully set a date for surgery. The nurse today said we could expect 2-3 weeks recovery in the hospital after the surgery. I just talked to Jason and he said Ryan had a really good night. He had a good day as well, Grandma came up and got to hold him. She was a little nervous, but got used to it pretty quick of course.

Not so fast

Spoke a little to soon about getting off the prostins. Although the O2 helped a little, he still needed to start back up again at 2 this morning. At least now it seems like cardiology does agree that he has some need for that little extra bit of mixing the prostins allow him to maintain. They are planning to do a repeat echocardiogram (ultrasound of the heart) and hopefully make a plan from there. They will still discuss his case at conference tomorrow. In other news, he is completly off IV nutrition and up to about 2 ounces of breast milk per feeding. He has never had any problems with food, not surprising for one of my babies.

He continues to be plauged by name mistakes. The labels they have printed for me to label his bottles of milk have the St in Stratman cut off and they are printed in all caps, so it appears as if his name is Ryan Ratman.

Much better today

Although I was scared to death about stopping the Prostins again, he is doing much better tonight. The extra O2 must be helping because his O2 levels remain in the 70 which is where the want them to be. This is good news because being off the meds is apparently the most important precursor to surgery. Now it is just a matter of waiting for Friday's conference to get a surgery date and hoping he continues to do well without the Prostins.

A couple of people have asked about the older boys. They are doing great, just getting spoiled by grandparents. One day, one wanted McDonald's and one wanted Burger King, so grandpa drove to both places. We are so lucky to have such an amazing family so close. Aunt Ash and Uncle Anthony also took them for the day on Saturday, going from 1 kid to 3 which as any parent knows is quite a feat.

News from Cardiology

The good news is that Ryan was completly off the O2 by 3 this morning and has had a great morning. Still breathing to fast to nurse or take a bottle, but I did get to hold him all morning. The other news is that cardiology wants to try to discontinue the prostins (medicine that keeps one pathway open) again. Apparently the prostins make the heart tissue more delicate and thus surgery more difficult. They believe that his heart is doing enough to pump the blood, but that his lungs like that of all newborns are not up to 100%. This time, we put him on O2 for awhile before stopping the prostins to try get his lungs expanded a little. So far so good. I will keep you posted. They have also indicated that they will wait until next week to do the surgery, which is more then we knew yesterday.

Thanks to everyone who has emailed or posted comments. Reading message from all of you is one of my favorite parts of the day. I just realized (or actually Jason pointed it out) that I misspelled our last name in the website address. I don't think I can change it and some of you may have it bookmarked, so I will just leave it as Straman.

Good News from the Cath Lab

Ryan's cath procedure went very well. The cardiologist said they did not find anything unexpected and that the surgery should be a straight forward arterial switch. Apparently the coronary arteries can sometimes cause problems, but his were as they should be and should not cause any problems. Things didn't go as well this afternoon, but they are looking up now. Another thing they looked for during the procedure were the two areas of his heart that are allowing oxygen rich blood into his system. One is being kept open using a medication. The cardiolgist felt that the other (the atrial septal defect) was large enough that the prostins could be discontinued. Ryan did not agree and his O2 levels went from great to not so great. The neonatologist elected to put him back on and his O2 levels returned to normal. Now I am waiting for them to wean him back off of the O2. We still don't know when his surgery is scheduled for, only that they will try to talk about it before Friday. I am still trying to figure out exactly how the cardiology department works. I am hoping sooner rather then later, but we will see.

Waiting

Ryan's cath procedure is scheduled for today, but we don't know exactly when. I hope it is soon since they discontinued his feedings at 3 am and if he wakes up I think he will be really hungry. Other then that, he had a good night. He continues to be the superstar of the nursery as far as weight gain. He gains around 100 grams a day which is unheard of in the NICU. It's really funny, the nurse always has us pick him back up so they can zero the scale and check again. One even went an got a different scale. He is still doing good with his bottles, drinking them down in just a few minutes. A couple of times we had to use the tube because his resperation rate was to high, but they say at this point it is great that he can tolerate anything by mouth.

Pictures

As you can see, the boys got to come and visit on Sunday. Grant was pretty interested in the new baby. He sat beside him on a chair and kept saying "Shh, Baby Ryan sleeping". He would also look around and say "another baby, another baby". Kyle was ok, but I think he was a little upset.

Other news today, I talked to the cardiologist that will be doing the cath procedure tomorrow. We still don't know when they will even talk about scheduling the surgery. He said they typically have a conference with the surgeons on Fridays, but they will try to talk to them about Ryan before that. He did say that he will show us the "pictures" of Ryan's heart after the procedure, so we should at least know if there is anything else major going on.

A funny thing happened while I was holding Ryan today. His heart rate monitor kept sounding an alarm and showing his heart rate in the 60's. The nurse checked and he was fine and said that they lose signal alot, but don't read that off. When I went to put him down, we noticed that the sticker had transferred to my chest somehow and the monitor was picking up my heart rate.

The Weekend and the Week Ahead

Ryan had a good weekend, lot's of big firsts. On Saturday, they took out the remaining umbilical line which meant we got to hold him for the first time. They also started to feed him through a small tube in his nose. So it was one tube out, one tube in, but is was worth it to get to hold him. His first feeding went so well that they let me feed him a bottle at the next feeding. Since I nursed my older boys, this was also my first time feeding a baby a bottle, but it went very well. On Sunday, the nurse practitioner actually said that I could try nursing. I couldn't believe it, they monitor everything so closely, I never imagined that would be ok with just recording that he nursed for so many minutes, but they were so we gave it a shot. The first time didn't go so well, he got frustrated that the milk wasn't right there like it was in the botttle, so we went back to the bottle, but he did great the second time and I was so excited. We tried at 3 and I think he was just to tired. His breathing rate elevated so we went back to the tube and the back to bottles where I think we will stay for awhile.

We also talked to one of the cardiologists about his condition and the catheterization he will be having performed on Tuesday. His condition is called Transposition of the Great Arteries or TGA for short. A good explanation can be found at the following website: http://www.americanheart.org/presenter.jhtml?identifier=1682
The catheterizationwill help the cardiologist and the surgeons determine exactly what needs to be done during surgery. Sometimes other anomalies are present and this will give them a "roadmap" to follow. I am not sure how soon after the procedure they will schedule the surgery or even when we will get to talk to them about results, but will post more when I have a chance. There is a computer here in the NICU for families to use, which is nice. I will try to post a few pictures from home when I have a chance as well.