Sunday, December 5, 2010

Christmas Thoughts

On Saturday we had a ward (church) Christmas party/breakfast. I got up early, thinking I would get a bunch of stuff done (which I did!), the kids woke up around 7:30 at the same time (like they always do), and S took care of them while I went grocery shopping. When I got back from the grocery store, the party had already been going on for five minutes and S had done only a few of the multitudinous "getting ready" things with the kids. I wasn't too set on going to the party in the first place, especially not late, but since S really wanted to go, we hurried and got the kids and ourselves ready and got there 45 minutes late. (Sheesh!)

We brought Boo's walker along with us, since we have discovered that our home was not designed for kids learning how to walk (too many levels and stairs) and the church is only one level with lots of walking space. When we walked in the door, we put Boo in his walker and he immediately took off. We steered him in the direction of the party, only to discover that we were entering through a door at the front of the party instead of the back (which I had hoped for). The place was packed and we entered right in the middle of a piano performance (Sorry!!!). Needless to say, it was a "grand entrance" that I would never have intended!

Boo didn't notice that anything was amiss. He walked right in in his walker and smiled at everyone he passed. Every now and again I had to steer him away from people's legs and such as he plowed right through the crowd of tables and people sitting at them. Being discreet was not an option at this point. After all, this was a crowd of people who have been fasting and praying for him ever since he was born. Tons of people commented to us about how cute he is in his walker (Agreed!), how good he is at it, how impressed they were at his walking (especially when he had only had the walker for four days), how much it warms their hearts to see him out and especially walking (since we have mainly stayed in the house or the hospital his whole life), etc. Some people teared up when they saw him, and the bishop shared the experience in his testimony today. We had him walk around the church a ton, and he mostly stayed out of everyone's way (except when they were trying to put the tables away when it was over and he kept wanting to close the closet doors for them! Boo and his doors...). He did great and he smiled the whole time.

Later that day, we S and I were talking about comments we had received, and it occurred to me that Boo is kind of like everyone's Tiny Tim. Honestly, I can't think of any dissimilarities except that Tiny Tim talks and eats... :) We happened to watch Muppet Christmas Carol that day as well, coincidentally. At one point in the movie, Mrs. Cratchit asks Bob how Tiny Tim did at church that day. I should probably go look up an exact quote, but I am afraid if I go upstairs to look for it I will wake up Cee-Cee - bad idea at this point! - but essentially he said the following:
Tiny Tim did good at church. He was happy. He said that he hoped that the people at church would see him and that he was happy and that they would remember at Christmas time that the Savior made the blind man see and the lame man walk.

This touched my heart! Boo is our little miracle baby. He is living, breathing proof that God answers prayers, that miracles do happen, that life is good, and so many other things I cannot enumerate. How blessed we are to have him in our family as a constant reminder. How grateful I am for the Savior who DID live, DID heal the sick, make the blind man see, make the lame man walk, and perform many other miracles. How grateful I am for the same Savior, Jesus Christ, who DOES live still, who WILL come again, who LOVES us, and who WILL one day heal us all of all things that ail us, physical as well as emotional. Like Tiny Tim, I hope that people who see Boo will remember the Savior and all that He has done and will do for each of us.

I might post again before Christmas, but I might not. You never know around here just what I am going to get done in any given day. May you all have a Merry Christmas and enjoy the wonderful spirit that accompanies this season!

Tuesday, November 30, 2010

Five Random Thoughts

1. My key to weight loss: Chewing gum.
2. My new goal to make my house cleaner (In no way should this be construed to mean CLEAN. CleanER.): Do a minimum of one chore per day. That is, above and beyond what is necessary to sustain my sanity.
3. In the past few days, I think I have heard both of my children say "Mama". I know that neither of them is yet cognitively aware enough to derive meaning out of these two sweetest of syllables, but it is still gratifying and exciting and fun and heart-melting to hear them. Of course, I could just be imagining things. But still...
4. You should have seen little Boo in his walker for the first time ever today in Physical Therapy! Holy Run-for-your-lives - Here he comes! He is also starting to kneel without kneeling against anything.
5. A note on my children's relationship: Boo is so funny with Cee-Cee - he always wants to be wherever she is (or wherever I am, depending on his mood - he even follows me all the way up the stairs!). He "gives" her many kisses (aka he puts his head on her head/torso for HER to give HIM a kiss while I make a kissing sound) and he loves to just be near her and touch her clothes and the top of her head. He is very interested in her toys and the things she is interested in. They also both feel a great deal of empathy one towards another, as when one cries the other is quick to join! They are so stinkin cute.

Friday, November 5, 2010

My Babies - The Latest

  • Laughs so hard at so many things, including CeeCee
  • Sleeps like a champ at night (12+ hours)
  • Great traveler and shopping partner
  • Blows kisses from his eye
  • Crawls backwards super fast (and forwards, for that matter)
  • Signs "more" and "help", usually in succession
  • "Washes his hands" when we use Germ-X
  • Comes to visit and climb up on us when he wants to be played with or needs a little attention
  • Does tummy time with CeeCee (they face each other)
  • Colors pictures and then throws the crayons, all while I sing "Pop Goes the Weasel"
  • "Eats" breakfast with Mom (=watches Mom eat while sitting on her lap and unwittingly touching her food)
  • Sings songs when he wakes up and throughout the day
  • Pounds on his crib happily when he is ready to get out of bed -don't get him out too soon though!
  • Carries his toys (including his ride-on car!), balls, and Mom's pans to throw them under the desk, down the stairs, in the garage, outside, etc.
  • Closes the doors when asked (and any other time), but cries after he closes the outside doors. He also loves to open and close any kind of door (particularly cupboards), and pound on them with his feet.
  • Has many a hiding place for his balls, including under the desk, behind the printer, under our cars, outside, in the cupboards, in the drawer under the oven, under the recliner, and probably more places I haven't discovered yet!
  • Is ticklish, especially on his neck
  • Has lost 2 hats now, after throwing them out of the stroller, catching Mom unawares (although I am usually NOT unawares, as I have grown used to picking up his hat off the sidewalk....argh!)
  • Loves Baby Signing Time and his music class
  • Almost always turns the pages correctly when reading books
  • Has been letting some other people hold him
  • Can sit up just fine, but wishes we wouldn't make him do that!
  • Could tell when the carpet got cleaned and didn't want to touch it for awhile
  • Loves to watch the cars go by on walks, and finds it particularly amusing to see cars go in reverse
  • Sits up and hangs out of his stroller
  • Likes the park, mainly the baby swings
  • Finds some way to keep the rhythm to any number of songs (ie. clapping, kicking, rolling a ball, coughing, hitting his head or some other object, etc)
  • Plays "Peek-a-Boo" by covering his face with his hands or some item of clothing and laughs hysterically while we search high and low for him
  • Provides entertainment in the form of his crazy crawling and banging on things during church for all those who might be bored, and rarely gets upset during all three hours!
  • Laughs when CeeCee sits on his tummy or when he gets to hold her
  • Can push himself backwards on his Lightning McQueen ride-on car
  • Goes up and down the stairs frequently and independently (he has only fallen down them 3 times, and that was a long time ago!)
  • Is back to doing everything that he did pre-surgery, including pulling himself up to standing against the furniture
  • Does not need oxygen during the day or night for about a month now! (Notice the empty space by the couch where the oxygen equipment once resided)
  • Loves balls more than any other toy by far, and he will play with them endlessly
  • Is starting to enjoy being chased
  • Sucks his thumb, but NOTHING else!
  • Likes to touch CeeCee's head softly (usually...) and immediately run away, as though she were a hot potato
  • smiles really big when she wakes up
  • Loves to be told she is pretty and a "lady" (I call her my Lady of the Morning)
  • Coordinates her kicking and arm movements
  • Holds her head up and sits up very well, especially on a lap or in her bumbo seat
  • Still doesn't like tummy time much, but tolerates it well for a minute or two.
  • Loves to be sang to.
  • Is not a big eater, but is growing well
  • Sleeps like a champ at night (8+ hours)
  • Loves to sit on her brother's tummy and be held by him
  • Loves her swing and frequently naps in it
  • Would be glad to watch TV if Mom would let her
  • Loves her toys and keeps a death grip on them, particularly on her activity mat - she has been known to lift the whole thing up if she is holding on to it when we pick her up!
  • Likes to be carried while on walks
  • Usually has a bow in her hair
  • Is called "Fisty" because she eats her fists
  • Loves her brother and frequently smiles at him, unsolicited even
  • Tries to sit up while laying down and successfully gets her head and shoulders off the ground!
  • Sleeps during church
  • Mainly just wants to be held on a lap all day long
  • Loves to be entertained and most definitely knows when she is not getting the attention she merits!
  • Has a shy smile at times
  • Is a homebody, and definitely does not prefer shopping in spite of what her onesie might declare...

Could there be anything better than being a mom??? I submit there could not. I just love these two.

Wednesday, September 8, 2010

Monday, August 30, 2010

Life with two

OK Readership, sorry for the delay in updates. And sorry that this post is picture-less - I can't seem to get it to work right now... A few days ago, I could have just as easily entitled this post "Craziness", as I truly felt that to be synonymous with "Life with two". Things have calmed down a bit here. I do find plenty of vacant time slots in my days, but they are usually not to be filled with anything of note, since Boo is staying in pre-surgery and it is really quite difficult to take them both anywhere. And that has nothing to do with the amount of stuff I have to lug around - it is because CeeCee is particular about her feedings occurring on demand and while Boo is not, we must keep on top of our every-three-hour feeding schedule or else pay for it by staying up with the feeding pump all hours of the night. So we are a bit tied down, and while at times I lament this fact, it is really nice to have down time to play with my babies and read and snuggle and occasionally get something done.

Really the craziness of it all is the rigid schedule we must keep with the feedings and diaper changes. Also, since CeeCee does not breastfeed (we will save that issue for another post - check back in a few days), I am pumping. Back to life as a cow - the life I lived for a year after Boo was born. I am really lucky/glad to have a good milk supply, so I really only need to pump every 6-8 hours or so. This is a huge blessing.

We have finally learned to trust CeeCee to known when and approximately how much she needs to eat. This has been an interesting adjustment for us. Boo has never told us much of anything by way of his survival needs. He doesn't care about food, diaper changes, or even teething. So we calculate out with our dietitian and cardiologist exactly how much of what "food" (infant formula still) he needs and when and give it to him, whether he likes it or not (he doesn't), on a regular schedule. She is so easy in comparison. Her crying for food is like an alarm clock I do not need to set, and that is wonderful. That being said, I do think she is a bit more demanding of time and attention than Boo, which is fine.

CeeCee is also a major snuggle bug. I am SO glad for this! I honestly have been praying to have a snuggly baby and here she is. Boo used to be a snuggler too, but after his second heart surgery he did not want anything to do with snuggling. (That was back when he was on a medication for several months that made him sick and all he did was cry, eat a little from a bottle, and spit up a TON.) We can't hardly blame him. He will sort of snuggle every now and then - more like tolerate being held... Oh well. CeeCee fills my every snuggly need, except spousal of course. ;)

As for Boo and CeeCee's relationship - it is interesting. At first, Boo completely ignored her very existence and went about his business as usual. For the most part, he still acts that way. But, a few times he has gotten himself to a standing position against the couch while I am feeding or snuggling CeeCee, just to see what is going on. He does not get upset about her or anything she does. He just seems curious. And he is afraid of her - as in, I could (but don't) hold her at arm's length and chase him with her because he totally scoots away super fast when she is placed near to him. This aspect of their interesting relationship is beginning to fade however. Boo also loves to bounce his ball and other toys off of her bouncy seat and infant carrier, causing her to bounce as well. Neither of them seem bothered by this, but I try to keep him from doing it whenever possible. Last night they took their first bath together - that was fun. They didn't seem to care that each other was sharing the tub. The best thing about their relationship is the following: Boo claps or yells (happily, but yelling nonetheless) in time to CeeCee's crying!

For anyone who doesn't know Boo, he LOVES rhythm. He claps or kicks or hits or does any number of other things in rhythm to music, books, rhymes, and now CeeCee's crying. For instance, she cries like this: ah-WA ah-WA ah-WA, and Boo goes like this: (a)-*clap* (a)-*clap* (a)-*clap*. Not sure if that is understandable... Well it is simply hilarious. I would ordinarily almost feel my blood pressure rise after a couple of those intense CeeCee cries, but Boo keeps me sane with his happy yells and his claps. (As a side note on Boo's musical ability, he has now added pitch to his list of musical talents. He "sings" - pitch and rhythm, no syllables - "Frere Jacque", "Blue Danube" and any number of other songs from his toys. Every now and again I even do hear him sing "Ba ba ba" to these tunes. He is truly a character - delayed in every other skill but advanced in music. Must be his mother's son...)

As far as CeeCee's development and habits - I don't really have anyone to compare her to, since Boo is his own man. She was born with the ability to hold her head up for several seconds at a time, and has only gotten better. She always cries when she needs something, and her cry is pretty strong. When she cried upon being born, I thought aloud: "Wow, she is louder than Boo already!" This is true. I do not use our baby monitor, even when she is alone upstairs, because I ALWAYS hear her. CeeCee is a good little sleeper. She has already gone from waking up 3 times a night to sleeping a full eight hours last night for the first time! If she had her way (which she sometimes has had on accident!), she would sleep on her tummy on my or S's chest. She is a good little sleeper for the most part in her bassinet/pack-and-play on her back, particularly when she has a nice binky to suck on that stays in her mouth! She also gave us her first smiles a couple of days ago and has been smiling intermittently ever since! I think she is ticklish on her neck and her cheeks, so sometimes I solicit these smiles... :) At her 2 week doctor's appointment, she weighed in at 7lbs 8oz (8oz more than her birthweight). She is 25 percentile for weight and 50-75 percentile for height. Weight vs. height is 5th percentile, although that will probably change with time. "Long and lean," the doctor said.

CeeCee and Boo have both been wonderful and have not shown any signs of maladjustment to this massive overhaul of our lives (at least for S and I!). We are so super glad to have them. They are special and sweet and our days pass, though sometimes boringly, with pleasure in our associations together. As I said in the beginning, the "craziness" that I thought equivalent to "life with two" is not so anymore. It is still tougher and more time consuming than life with one, but it is a doable and fun challenge. As Dickens wrote: "It is no small thing when they who are so fresh from God love us." Isn't that the truth!

Thursday, July 29, 2010

Baby Cee Cee's arrival

Yesterday (July 28) Cee Cee arrived at 9:57 AM after a short 8 hrs of labor. She is 7 lbs and 20 inches long. She has no indications of any health problems. Several nurses and the pediactrician indicated that she is an unusually cute baby.

Friday, July 9, 2010

Boo Update

For those who are interested, Boo has a carepage on the website I update this with his most recent health information. With his surgery coming up, I expect to keep the updates coming solely from his carepage and not on this blog. If you would like to follow on Boo's carepage, just let me know and I will send you a link or tell you how to get on it.

Sunday, June 27, 2010

Pregnant and Lovin' it

I must say, I have had some difficulties in the past with both pregnancies, and maybe I am speaking too soon or jinxing it or something, but I truly am "pregnant and lovin' it". :)
This picture was taken on Sunday. I am now 36 weeks!

*OK, so I started writing this post on Saturday night, and on Sunday and Monday I had REALLY tough days... The title is back to being true, however, as yesterday and today I have been feeling great again. :)

When we were first married, S saw a book titled "Pregnant and Lovin' It" and joked that he was going to buy it for me. Then, when I was pregnant with Boo and having a hard time, he still said he was going to buy that book for me (GRRR....). Now that I AM pregnant and lovin' it, he STILL jokes that he is going to buy that book for me. I just have to learn to ignore these jokes... :) As a side note, he also always jokes about buying me a tote bag that says "Relief Society" on it and I told him I will NOT carry such a bag! But the joke persists.

When we first started telling people that I am pregnant and due in July, so many people thought I was "going to die" because of the heat, etc when I am nine months pregnant. Well, to those nay-sayers, I am now 9 months pregnant and yet alive, and in fact, I have very little discomfort to complain of! Yay! Don't get me wrong, the whole pregnancy has not been this way. I couldn't hardly walk down the street mid-second trimester, but for the last 6-8 weeks Boo and I have been walking 0.5-2 hours per day! I used to get really bad heartburn all the time, but now I just get it occasionally and Zantac makes it all go away. My back pain is no more than the usual discomfort I have in regular non-pregnant life. And I can still carry Boo around and up and down our stairs just fine (one of my big worries before we decided to have another baby). I must be getting SERIOUSLY blessed here, and believe me, I am enjoying it while I can!

We are SO super excited for little Cee-Cee to join us. (Except for Boo, who seems to be getting more attention-demanding... They will get used to each other eventually.) And we are also SO excited that everything points to her being totally healthy and full term (just one more week until that is certain!). Now if the nesting instinct could just kick in and make me put together her little room, that would be good... :)

Sunday, June 13, 2010

Upcoming Surgery

Boo's surgery is finally scheduled! It will be on July 8th. I will be 37 weeks along then, so we are hoping and praying that, if it would work out best for all of us, our hospitalizations will not overlap and that Boo will have his surgery and subsequent recovery over and done with before the baby and I start ours! We think it will work out best this way, but Heavenly Father's plan is undoubtedly superior to ours, so we will defer to Him. :)

To be honest, I am feeling a lot better about the surgery now, having had some time to digest the initial shock of it all. (I wrote the last post about it the day after I heard the news...). Now, although I do still have my bouts of sadness/nervousness about the whole thing, I mainly either ignore the whole situation (easy to do when you've got: 1. a baby to take care of, who is totally acting like himself plus some, and 2. a copy of "Pride and Prejudice" and now "Emma") or I feel gratitude for the following:

1. Boo was born at a time when he can have the surgery and it is not a new thing. Actually, we had one doctor tell us that if Boo was born 5 years earlier, he would not have survived with all of his difficulties, and being so small and all. That is seriously something to be grateful for, and I am.

2. We live in a country where these procedures are done regularly and where doctors and nurses are able to get appropriate training to save these fragile little lives.

3. We have good insurance and do not have financial stress on top of all this...

4. We have tons of people, both in the immediate vicinity as well as all over the country, who care about Boo, who pray for him, and who are there to support us and help us out.

5. Besides his heart (granted, that is an important body part...), Boo is much healthier and bigger, and his lungs have gotten better since his last surgery. We hope this means fewer complications than last time and a shorter recovery.

6. Boo is more communicative now than he ever was in the past, especially considering that his last hospitalization was a year ago. He still doesn't talk or sign, but he knows what we are saying and he responds well to us. We think this will help his anxiety this time around.

7. I know Heavenly Father is watching out for our family. He will not take Boo unless it is Boo's time, and that is comforting. And I know He will help us all through any difficulties that may pop up (for all we know, this could be a super simple thing... I will be extremely grateful to know that all the times I have been sad/nervous have been in vain! :)

Thursday, May 27, 2010

Boo's Extended Second Birthday Party

So my original intent for our little celebration on May 1st (open house for S's graduation and Boo's second birthday) was to have everyone over and visiting throughout the afternoon and then when everyone (or at least mostly everyone) was gone, to help Boo open his presents and see what he did with his little train cake we bought for him. Here are some pictures of our open house before it started. (I was too busy playing hostess to take pictures during the actual party). I am not much of a decorator, but we went for some ASU colors of tablecloths, cakes, balloons, napkins, and plates. My sister, S, helped out a TON - she is the one cutting the cake. Thanks so much to everyone who attended! We had a great turnout and a great time - even our anxious little Boo smiled and played the whole time. He particularly liked to watch his cousins throw the balloons around.Well, where there is a "baby-two-year-old" involved, things don't always go as planned! :) May 1st ended up being our stake's Priesthood Meeting, so S left with his friend K to go to that right after the open house. Which left an exhausted Mama and a surprisingly exhausted Boo together to clean up and get ready for bed. We cleaned up as much as could be expected and went straight to bed, Boo around 7pm! So much for our little family part of the party! The next day, we got out the little train cake and I will let the pictures tell the story of the proceeding events. Yep, it was about as disasterous an experience as I could have possibly dreamed. I knew he would not eat the cake, of course, but I did not anticipate that he would think the cake was actually a toy train and be completely horrified/traumatized upon touching it! I felt so terrible! He cried a different sort of cry than his usual "I'm upset/tired" and it was too sad. After taking only a few pictures, we scooped him up and tried to cheer him up on his way upstairs to bed. I don't ever want to hurt that poor little guy's feelings again!

So obviously we did not open presents that night. We were busy with other things on the next few evenings, so we did not get to it then either. Finally, on May 6th, we got around to the present opening segment of his prolonged birthday party. It is so fun to see Boo's little personality come out and see him gain a little confidence to interact with other people. He isn't much for opening presents or new toys (he will get used to them eventually - it is part of his developmental stage and also his general anxiety towards the unfamiliar - people, places, things...), and he CERTAINLY isn't much for cake, but he is SOOO much fun and such a complete joy to have in our home. We are so grateful he could celebrate his birthday with us at home, and we are just so glad to have him in our family. We love you Boo!!!!!

Wednesday, May 26, 2010

A Very Long Cardiac Update on Boo

I have a TON of catching up to do on this blog! At least I have written titles for every post I have yet to write about the past month or so. I have been so busy with graduation/trip stuff, and now that all that is over, I have not felt much like writing. These last couple of days I have a lot on my mind. I hope this post is not too depressing or anything.

The truth is, we have thought Boo has been doing very well. Our last cardiology appointment (beginning of April) did not go so well though. The tech who checked all his vital signs did not do a good job at all (it didn't help that Boo was screaming and thrashing the whole time, but you don't write down THOSE numbers!) and then our doctor said that he just isn't sure why Boo isn't getting better (ie. why he still needs diuretics and oxygen). He also said that Boo looked the best he'd ever seen him. Contradictory? I think so. Anyway, I called him on it and he said that things don't look good with him, but Boo looks good for Boo, essentially. We decided to do an MRI to look at his heart better and I decided to mess with his oxygen when we got home to see if he really needed it (I had been waiting for our cardiology appointment, naively supposing their measurements would be better than ours). When we got home, we were thrilled to discover that in fact Boo did not need oxygen (at least during his waking hours)! He has not needed it for over a month during the day, and while we were in AZ he did not need it at all (thank you low altitude).

The MRI was this past Thursday, and it was scheduled with a brain MRI as well that the neurologist wanted to get. (The brain scan showed nothing of note.) That morning, Boo woke up with a runny nose. That is strange for him. Sometimes he is congested in the morning, but never runny... But, after his pre-sedation assessment, they determined he was fine and we went ahead with the sedation and MRIs. He took quite awhile to wake up afterwards, but once I held him and started singing a lullaby, he started clapping (even while asleep) to the beat and I knew he would wake up soon. :) It was super cute. He didn't fully come out of the drugged state until the next afternoon though. And he had to come home on quite a bit more oxygen than he usually needs, supposedly since the sedatives decrease respiratory drive. While this is true, it is not the only reason he needed oxygen. Friday morning he woke up with a fever (100.3) and throughout the night he was requiring much MORE oxygen (not what you would expect when the drugs are wearing off...). After a visit to the pediatrician, it was determined that he has a cold. A common cold. He was checked out again on Monday and his lungs have stayed clear throughout this whole thing (thank goodness!) so we are no longer worried about pneumonia or other yucky things that would mean hospitalization.

Since Monday, Boo has been feeling a lot better. I give him tylenol once or twice a day. He really doesn't do a lot to express that he doesn't feel well, so sometimes it is difficult for me to know. On Monday afternoon, the cardiologist called with his MRI results. Understand that S and I have thought that Boo is doing great, off oxygen, just had a cold, slowly getting bigger and not requiring more diuretics than before, etc. He has been making great developmental strides and has a ton of energy. So the news from the cardiologist was a HUGE blow: Boo needs surgery very soon. It doesn't look good.

For interested parties, here is what is going on, as I understand it. Boo has lived without a pulmonary valve since his last heart surgery. We always knew it would need to be replaced (or placed, as it were), but the hope has been that he would be very big by that time. As in about 20 years old. Most children and even teenagers are able to live just fine without this valve, although it eventually needs to be replaced. And once it is replaced, it will need to be replaced time and time again throughout life, because they only last about 5-7 years, and less if the patient is small. In Boo's case, his lung disease has probably made things worse and that is why he would need the surgery so soon. Thankfully, his lung disease has gotten a lot better, which is why he has been able to be off oxygen. But, not having a pulmonary valve has increase the dilation of his right ventricle and caused greater leakage across his tricuspid valve. A normal right ventricle is size 80-100, surgery is needed when it gets to 140, and Boo's is around 200! Because his ventricle is so much bigger than we thought, he may actually need more than a pulmonary valve replacement. He may need a smaller patch over his pulmonary artery (part of his last surgery) and some reconstruction of his tricuspid valve as well. This is not good. It means more time on the heart-lung machine, which means more fluid retention and more "risk". I don't ever ask what "risk" means. The hope in all of this is that we are not too late - the cardiologist still believes the surgery can be done (if the right ventricle gets too big, it cannot be done anymore and the condition must just be lived with and controlled with heart function meds). So within the next week or two, we will have a surgery date.

So what is going through my head? Here is a list, not in any particular order:

1. I can't stand the thought of losing my little Boo. He is my best little buddy and we do everything together. He loves me so unconditionally and is so happy and teaches me so much. Is it Heavenly Father's will that Boo meet his baby sister? I hope so. The thought just eats at me, even though I know this surgery is not a death sentence. I just know how close we have come to that with past surgeries and I fear for his life this time - heart surgery #3, all the complications, all the scar tissue from past surgeries...maybe I don't need to elaborate. Fear is the opposite of faith though, and I am determined to be a woman of faith. I need it.

2. Assuming we make it past #1, I am so worried about how much ground we will lose. Boo has come such a long way and learned so many things with so much difficulty that other children learn quickly and with ease. He doesn't eat at all, so I don't think that can get any worse. :) But will he be able to sit up and dance and walk along the furniture, and make his baby sounds, and climb up the stairs? Will he have an even flatter head? (Post-helmet therapy his head has gone a little bit flat again, since he still spends a great deal of time on his back). Will his super-bad anxiety come back with a vengeance, as it did with his last surgery when he wouldn't even look at or play with us (his parents!) for a week afterwards? All of this depends on the recovery time and difficulty. It could be short (Boo's little friend made it through and home in four days!) or long (Boo's last surgery resulted in a month and a half long hospital stay with many ups and downs).

3. I have to keep Boo healthy now, big time. His life could very well depend on it, since if he gets sick, we have to wait another six weeks for surgery and that could be too late. My paranoia is in overdrive now.

4. I HATE to see Boo get hurt! I would hate even more to see him slowly pass away, but I seriously wonder how much MY heart can take, watching my little boy go through so much and not understanding why. I can't know all that he feels, but I feel like his pain must be magnified in mine. And just when we were starting to make a little headway with his anxiety problems... Incidentally, this thought has strengthened my faith in Heavenly Father and how His thoughts (and understanding) are higher than our thoughts and how He, even the Almighty, feels pain when we feel pain and why He allows bad things to happen even to good people. He understands infinitely more than we do and His only object is for us to return to Him having done everything we can to become like Him. Brigham Young once said that "Every trial and experience you have passed through is necessary for your salvation."(See article by James E. Faust). In this sense, I am grateful for my trials, but that does not mean they are not difficult and heart-wrenching at times.

5. If you look to the right, you will see that this surgery is cutting it close as far as interfering with the grand entrance of our baby girl. I would be lying if I said this does not worry me. Of course, if I go into labor while sitting at Boo's bedside, I will not be far from our chosen delivery hospital. :) But I don't want that. I want to be there for Boo when he needs me and I want to be there/have to be there for our baby when she is born. I know this will all work out, but it is a bit troubling. And how can I control my stress level so the baby isn't harmed by it? Any ideas?

OK, now that I have unloaded all that onto my public blog...! It feels really good to write though. Honestly, the whole reason this blog is public is so that other people in similar situations might be able to find it, hopefully find comfort in it, and at least know that someone else has been there and felt the same way. It is usually remarkably easy for me to put aside my true feelings and put on a happy face and all (I do have tons of happy things happening in my life to write about too!), but I do not think that is always the right thing to do. Right now, it is not. I feel stressed, nervous, scared, worried, and sad. But I also feel hope, love for my family, and love for my Father in heaven who knows exactly what will happen and that somehow it will all be for our ultimate benefit, even if it is hard now.

Saturday, May 1, 2010

I Can't Believe My Baby is TWO!

I am way too exhausted to post pictures right now so sorry... Today has been a BIG day! We had an open house for Boo's birthday and S's graduation. It was so much fun and I was really surprised with how well Boo handled all the people and noise and attention he received. He did so well and only had one meltdown at the beginning. And I guess it wore him out because he was asleep by 7:30pm, and that is after having taken a two hour nap today!

This day feels sort of sentimental for me. In preparation for the open house, I looked through all the pictures we have taken of Boo, choosing some to put in a slide show and some to print and frame (one for each month of his life). There were about 2000 pictures of Boo in total. I narrowed the slide show down to 329. :) It was 11 minutes long. Nobody but Mama would want to sit and watch that, I suppose, but he is just too cute and I can't resist.

It is remarkable how much this little boy of ours has been through. He was so little - and so sick! Now he is a big boy, although he is still quite short for his age (still less than fifth percentile...). He is such a happy boy too. I have so much to learn from him! I am happy because he is happy, even though circumstances in his life sometimes make me sad. But he is happy (90% of the time - he is about 10% two-year-old at this point), and when he is happy, I have no choice! Isn't that a blessing?!?

I am so grateful for little Boo in my life. I couldn't possibly enumerate all ways and things he has taught me in the past two plus years (even during his pregnancy!), but having him here with S and I has been one of the greatest possible joys and learning experiences of my life.

Sunday, March 21, 2010


I have been meaning to record this for a long time. This kid has rhythm! :) (He sometimes gets excited and claps more or forgets a clap, but he really knows how to clap to this song!)

Thursday, March 18, 2010


Can I just tell you about my amazing husband? He has been working on his Master's degree for the past ~5 years. This has included all of our dating and married life and more. On more than one occasion, he has been threatened with being kicked out of school due to having received a "C" grade (barely passing for grad students) in a class in 2006. Because of this "academic probation", he has had to work extra hard to pull his grades up in his classes, all the while fighting the removal with appeal after appeal and working full-time (not to mention all that has gone on with Boo and I over the past two years!).

He finally got two "A" grades and was able to get off academic probation for good. He finished his coursework in December, after which he had to take a comprehensive Master's exam - over all his classes. 6 years worth of studies!! Well, he worked super hard and PASSED the exam on the first go (one only really gets one try, but one could, in theory, appeal to take it again) on Feb. 26, 2010!

Now we get to take our long awaited trip to Tempe for his graduation. We are going to stock up on ASU alum paraphernalia. :) This is like a dream come true - and a hardly likely outcome, considering all that was going on with his schooling last year at this time. Having him free of study demands has afforded us liberties we have never known. Like being able to go places all day on Saturdays or Fridays off. Or having Dada help out with Boo's bath - something I always felt guilty asking for before, since he really needed to study. Or having him help with much of anything for that matter (even though he always found time to help out with things I REALLY needed). Now we can finish painting our house and get tile our kitchen and dining floors, and take care of our lawn (which I think is suffering from pink snow mold...), and do everything else we always talk about but never do for time's sake.

And did I mention we get to go to Arizona? Yeah, I know I did. :) I am SO looking forward to the warm or hot weather, be what it may. And not worrying about Boo getting sick (assuming there is not much sickness going around in mid-May...). And a LONG road trip (Boo cannot fly very easily with oxygen) - seriously, I LOVE road trips. And spending time with family that we don't see very often/that I have never seen at all!

If S were to read this post as I am writing it, he would remind me to "take joy in the journey", as I am often reminded around here. Admittedly, I do get caught up in looking forward to the future quite a lot. But, I must also admit that life around here is going well, we are happy, spring is coming (oops, there goes the journey again...), Boo is learning and having fun and so am I. Lest anyone remain in doubt, we are not waiting until this much-awaited graduation ceremony to be happy. :)

Tuesday, March 9, 2010

Our Little Teapot

This video comes as a result of our physical therapist suggesting to me that I push Boo over on occasion (on a soft surface of course!) to get him used to falling and that it is OK to fall. We set the routine to music (like I do with every other routine) and then we practiced all day. By the next day, Boo was tipping HIMSELF over at the appropriate time! It is amazing to me how fast he catches on to things, especially when they involve music. This is one of our fun diaper routines (except at the end when he had too much time on camera...).

Saturday, March 6, 2010

It's a girl!

Yes, you heard me. :) We will welcome her into our family in the end of July (I actually think it will be early August). All the sickness I have been feeling (way worse than last pregnancy!) has finally mostly subsided. I don't think I will ever feel 100% during pregnancy, so I will just say that I am feeling good and leave it at that. The ultrasound was unremarkable in terms of problems. We will have a fetal echocardiogram at the end of the month to make sure the heart is free of defects. They did notice that the kidneys were holding the maximum volume they would allow without calling it "abnormal". So we will have another ultrasound in about 10 weeks to make sure that it is still normal. I am determined not to worry unless they tell me I should. :) And she is a little smaller than my due date would indicate. She is about 6 days behind schedule, but they do not worry about that discrepancy until it is 10 or more days off. So so far, so good. Anyway, we are SUPER excited! We have a room that has always been our future daughter's room (it was painted two-toned pink by the previous owner) and we are excited to have a use for the room. S is excited for our daughter to take a leadership role in the family with the rest of the future children. And I am excited to shop! :)

As a side note, we told our ultrasonographer about Boo's birth defect and his trouble that he had in the womb (part of my preeclampsia). She was very surprised that they at the University did not catch such an obvious birth defect as tetralogy of Fallot. She and the perinatologist went back and looked at his ultrasound records and discovered two things:
1. Boo's defect, even knowing what it was and looking for it specifically, was still undetectable on the ultrasound pictures.
2. SHE herself performed the ultrasound! I am pretty sure she felt terrible about that, and we probably wrecked her day by letting her know of all Boo's problems. But we were very clear and sincere - really and truly we do not assign blame for all the problems poor little Boo has had. It was actually a bit comforting to know, after wondering for quite some time, that Boo's defect was really not discernable and things could not have turned out differently.

Tuesday, February 9, 2010

What Boo Can Do

Boo has been really funny lately. He is, of course, still quite behind on his development, but that does not keep him from frequently surprising us with his newfound skills! Here is a list, which is not meant to be comprehensive, of things that Boo can do:

1. Find his nose, his ears, Mama's nose, and Dada's nose, and his mouth. I had been trying to teach him this skill for several months, all to no avail. Or so I thought. I believe, although I cannot prove it, that he learned this skill very quickly and simply did not know how to show that he knew it. You see, he will not point to his nose or ears or anything else when asked. He needs to hold on to your finger and take you to it! Funny kid.2. Army crawl. This is not his preferred method to get from here to there (rolling and back scooting have to take first place there!), but he will do it, both when encouraged and when on his own. (Notice the lack of hair on the back of his head, due to his preference of back scooting!).3. Stay on all fours for 30ish seconds. He hates this, but it is a necessary evil. And it is exciting that we don't have to hold him up anymore because his arms have gotten stronger.

4. Spit. Raspberries, anyone?

5. Clap in time to "Bingo", as well as several other songs (some of them made up!). And I mean it...he knows exactly when to clap!

6. Play ball with Dada. Those two have all kinds of fun rolling the ball back and forth. He truly is "so glad when Daddy comes home".7. Put things in a container (this has been a LONG time coming!). I even found my cell phone in his train the other day. This is all thanks to the $10 tree thing I got as an afterthought for Boo for Christmas.8. Help brush his teeth.

9. Say "N-Teh". Strange, but true. He says it and he will also imitate it when I say it. This is the first thing he has ever imitated.

10. Turn off the lights. We do this every time we leave his room.

11. Give things to Mama when asked.

12. Turn pages in books at the right time (assuming he likes the particular page...). He does have his favorite pages, like the bear page in "We're Going on a Bear Hunt" and the horse page in "Who Says Moo?". (This to say nothing of his like for horses since he hates to go visit the horses at the end of our street. He cries big tears every time!).

13. Get 12+ teeth all at once and hardly act any different!! Who ever met a baby who cares so little about teething?!

14. Recognize himself in the mirror by jerking his arm around and making sure his reflection does the same.

15. "Give" Mama kisses (leans in for a kiss when asked). This is the best part. :)

16. Suck ALL his fingers (sometimes even all at the same time!). He used to suck only his right thumb, but he has chosen to branch out. He has even sucked on paper a few times.

17. Be off his oxygen for THREE WHOLE DAYS this past weekend!!! This is a first by far, since he has never been off of oxygen ever for even a short amount of time. During this time, he learned how to harvest his own boogies, since he usually has to share his nostrils with his nasal cannula. He caught his first boogie with his thumb! He is back on again now, but we got a taste of what it is to have a cordless baby, and we look very much forward to it again in the future!Sorry for the weird pictures in this post. They are not the cutest, but they do illustrate my points. And I clearly need to be taking more pictures! Every now and again, as the mother of a developmentally delayed child, I dwell on the things that Boo cannot do yet, sadly. Fortunately, this is not usually the case. It is fun to watch Boo grow up in an unconventional way, doing all the things, expected and unexpected, that he CAN do. And he can do a LOT! We love you, Boo!!!