Conner's little laugh

Conner

Is this not the cutest thing you have ever seen?! It's such a tiny hospital gown!

Waiting to be called in to get Conner dressed and ready.

Hahaha, I love Conner's expression! We were driving to the hospital, and I said to him "Conner, did you know that you are going to have your heart fixed today?" and this is the look he gave me! Looks a little freaked out! lol, sweet boy!

Recovering

Conner's surgery yesterday went very well. The surgeon was very happy and confident when we spoke with him afterwards. He said that the VSD hole he repaired was very large. He gave us the little square of material that he cut the circle out of to use for the patch, as a little memento. In total, he repaired 4 different things with the heart. The surgery took about 4 hours.

We had to be at the hospital at 6am. We signed a ton of papers and then they took us in a little room. The nurse pulled out the tiniest little hospital gown and blue little socks for us to put Conner in. (I will post a pic later of it). We put it on Conner, and tied the ties in the back (just like an adult gown!) He was SO stinkin cute in it!!! Then we were transferred into a few different waiting areas. The surgeon came and talked to us, and then the anesthesiologist came and spoke with us as well. When he was done talking with us, he had us follow him down a hallway. Then at the end of the hallway, he turned to us, told us to give Conner kisses, and then we had to hand over Conner to him. Can you say tear-jerker! Ahh! I was fine up until I placed Conner in his open arms, and he looked at us with his big blue eyes, so calm, and the anesthesiologist walked away with him, both in their surgery attire.

A nurse would come update us at all the major parts of the surgery. The hardest update for me to hear was when she let us know they had made the incision. No turning back after that! Thinking of his precious little chest that I had given kisses to, had tickled and rubbed lotion all over, being opened, was emotional for me. The time in waiting room actually went faster than we had anticipated it would, which of course was nice. We were finally able to go in and see Conner at about 1:30pm. He was not as swollen and puffy as people had told us that he would be, which we were so thankful for. It is so hard to see your sweet little baby hooked up to so many tubes, and cords and scary looking things. It is hard not to be able to hold them and comfort them. With so many tubes and things going on, they keep him sedated until he is ready to lose some of the tubes, etc.

Late this morning they were able to successfully remove his breathing tube. They tried to remove it yesterday, but his body wasn't quite ready for it, and was so 'comfortable' with all the medications he was on, that he decided he didn't want to do the work to breath on his own. They had to replace the bt, but it was difficult because he kept throwing up while they were attempting to put it down. The whole process took about an hour, and it was one of the most stressful, emotionally-draining experiences. This morning we were so nervous about them taking it out. They removed it, and then Conner started coughing and crying. The saddest sound you will ever hear...a baby who is sedated and trying to cry. It's a really quiet, drawn-out cry that breaks your heart. But it was a very good sign that he was ready to breathe on his own, and he has been doing really well since being off of it!

Each day he will be on less medications and less tubes. The average recovery time is 7-10 days in the hospital. It will take 6 weeks for the full recovery. We are so excited to get him home and see how different Conner will be- meaning how much more energy he has now that all the extra calories, etc, are not being taken up by his heart. The surgeon explained a normal healthy baby uses about 100 calories a day, but a 'heart' baby uses about 180-190 calories a day. So we are excited to see the difference.

Thank you to everyone for all the prayers, and thoughts and well-wishes. We know Conner will recover well and that soon we will have him home.

One fun little perk I had today was that as I was leaving the CICU to go pump, I was stopped by a 'heart'-mom who follows our blog (and I follow hers). She recognized me from pics on our blog (we had never met before). We talked for a few minutes and it was so lovely to meet her in person! She has a beautiful baby girl who is just a few rooms down from ours here. We pray for her sweet little girl.

Another perk today was that one of our primary nurses from the NICU came down to see us here in the CICU. She brought a sweet little gift for Conner. We love her so much. She was so thrilled to see Conner and how much he has grown since she last saw him (it's been about 6 weeks since the last time she saw him). We appreciate all she did for Conner in the NICU and for her love and support she continues to give him.

Heart Surgery

Today is Conner's heart surgery!!! (It's 12:03a.m.!) We have so many wonderful family and friends who have been praying for Conner and Paul and I, and we have absolutely felt it's calming, sweet power. Conner has received many blessings in preparation for this surgery, and we know Heavenly Father is watching over him and that he will bless his sweet little body and heart. Conner is such a blessing in our lives. He is so amazing and so brave and strong. We love him dearly and have loved having him home before his surgery. We have been able to get to know him and his little personality. We recorded him 'learning' how to laugh tonight (I will have to post the video later) and he has just brought us so much joy and happiness. Family is truly what this life is about. The Gospel allows us to experience so much love and joy in our families! I have spent the last several days really taking every opportunity to cuddle and love on Conner. I kiss those squishy little cheekers, rub his soft head, massage those chubby little thighs, and most of all, give kisses up and down and all over his chest. His non-scarred chest yet. I have spent so much time looking at his chest and watching his heart make his chest rise and fall and rise and fall...thinking of the day that his heart will be fixed. And now it is here! Of course we are experiencing a range of emotions. We are so excited, and nervous, and anxious, yet calm. I keep imaging the moment that they will come to take him from my arms for the surgery. Just the thought makes me emotional. They are going to fix my baby's heart. We pray for the doctors and surgeons involved that all will go well. We are so thankful for their skills and dedication to what they do. They change lives. Thank you to everyone for keeping us in your thoughts and prayers! Go Conner! We love you!!!!

What things have you done?

What to do: Copy this list on your Blog, and bold the things you've done.
(I just put mine in red)

1. Touched an iceberg

2. Slept under the stars

3. Been a part of a hockey fight

4. Changed a baby’s diaper

5. Watched a meteor shower

6. Given more than you can afford to charity

7. Swam with wild dolphins

8. Climbed a mountain

9. Held a tarantula
10. Said “I love you” and meant it

11. Bungee jumped

12. Visited Paris

13. Watched a lightning storm at sea

14. Stayed up all night long and watched the sun rise

15. Seen the Northern Lights

16. Gone to a huge sports game

17. Walked the stairs to the top of the Statue of Liberty

18. Grown and eaten your own vegetables

19. Looked up at the night sky through a telescope

20. Had an uncontrollable giggling fit at the worst possible moment

21. Had a pillow fight

22. Bet on a winning horse

23. Taken a sick day when you’re not ill

24. Built a snow fort

25. Held a lamb

26. Gone skinny dipping

27. Taken an ice cold bath

28. Had a meaningful conversation with a beggar

29. Seen a total eclipse

30. Ridden a roller coaster

31. Hit a home run

32. Danced like a fool and not cared who was looking

33. Adopted an accent for fun

34. Visited the birthplace of your ancestors

35. Felt very happy about your life, even for just a moment

36. Loved your job 90% of the time

37. Had enough money to be truly satisfied

38. Watched wild whales

39. Gone rock climbing

40. Gone on a midnight walk on the beach

41. Gone sky diving

42. Visited Ireland

43. Ever bought a stranger a meal at a restaurant

44. Visited Russia

45. Bench-pressed your own weight

46. Milked a cow

47. Alphabetized your personal files

48. Ever worn a superhero costume

49. Sung karaoke
50. Lounged around in bed all day

51. Gone scuba diving

52. Kissed in the rain

53. Played in the mud

54. Gone to a drive-in theater

55. Done something you should regret, but don’t

56. Visited the Great Wall of China

57. Started a business

58. Taken a martial arts class

59. Been in a movie

60. Gone without food for 3 days

61. Made cookies from scratch

62. Won first prize in a costume contest

63. Got flowers for no reason

64. Been in a combat zone

65. Spoken more than one language fluently

66. Gotten into a fight while attempting to defend someone

67. Bounced a check

68. Read - and understood - your credit report

69. Recently bought and played with a favorite childhood toy

70. Found out something significant that your ancestors did

71. Called or written your Congress person

72. Picked up and moved to another city to just start over

73. Walked the Golden Gate Bridge

74. Helped an animal give birth

75. Been fired or laid off from a job (when I was 14!)

76. Won money

77. Broken a bone

78. Ridden a motorcycle

79. Driven any land vehicle at a speed of greater than 100 mph

80. Hiked to the bottom of the Grand Canyon

81. Slept through an entire flight: takeoff, flight, and landing

82. Taken a canoe trip that lasted more than 2 days

83. Eaten sushi

84. Had your picture in the newspaper

85. Read The Bible cover to cover

86. Changed someone’s mind about something you care deeply about

87. Gotten someone fired for their actions

88. Gone back to school

89. Changed your name

90. Caught a fly in the air with your bare hands

91. Eaten fried green tomatoes

92. Read The Iliad

93. Killed and prepared an animal for eating

94. Taught yourself an art from scratch

95. Apologized to someone years after inflicting the hurt

96. Communicated with someone without sharing a common spoken language

97. Been elected to public office

98. Thought to yourself that you’re living your dream

99. Had to put someone you love into hospice care

100. Sold your own artwork to someone who didn’t know you

101. Had a booth at a street fair

102. Dyed your hair

103. Been a DJ

104. Rocked a baby to sleep

105. Dropped a cat from a high place to see if it really lands on all fours

106. Raked your carpet

107. Brought out the best in people

108. Brought out the worst in people

109. Worn a mood ring

110. Ridden a horse

111. Carved an animal from a piece of wood or bar of soap

112. Cooked a dish where four people asked for the recipe

113. Buried a child

114. Gone to a Broadway (or equivalent to your country) play

115. Been inside the pyramids

116. Shot a basketball into a basket

117. Danced at a disco

118. Played in a band

119. Shot a bird (Does duck hunt count?)

120. Gone to an arboretum

121. Tutored someone

122. Ridden a train

123. Brought an old fad back into style

124. Eaten caviar

125. Let a salesman talk you into something you didn’t need

126. Ridden a giraffe or elephant

127. Published a book

128. Pieced a quilt

129. Lived in a historic place

130. Acted in a play or performed on a stage

132. Made a hole-in-one

133. Gone deep sea fishing

134. Gone roller skating

135. Run a marathon

136. Learned to surf

137. Invented something

138. Flown first class

139. Spent the night in a 5-star luxury suite

140. Flown in a helicopter

141. Visited Africa

142. Sang a solo

143. Gone spelunking

144. Learned how to take a compliment

145. Written a love-story

146. Seen Michelangelo’s David

147. Had your portrait painted

148. Written a fan letter

149. Spent the night in something haunted

150. Owned a St. Bernard or Great Dane

151. Ran away

152. Learned to juggle

153. Been a boss

154. Sat on a jury

155. Lied about your weight

156. Gone on a diet

157. Found an arrowhead or a gold nugget

158. Written a poem

159. Carried your lunch in a lunchbox

160. Gotten food poisoning

161. Gone on a service, humanitarian or religious mission

162. Hiked the Grand Canyon

163. Sat on a park bench and fed the ducks

164. Gone to the opera

165. Gotten a letter from someone famous

166. Worn knickers

167. Ridden in a limousine

168. Attended the Olympics

169. Can hula or waltz

170. Read a half dozen Nancy Drew or Hardy Boys books

171. Been stuck in an elevator

172. Had a revelatory dream

173. Thought you might crash in an airplane

174. Had a song dedicated to you on the radio or at a concert

175. Saved someone’s life

176. Eaten raw whale

177. Know how to tat, smock or do needlepoint

178. Laughed till your side hurt

179. Straddled the equator

180. Taken a photograph of something other than people that is worth framing

181. Gone to a Shakespeare Festival

182. Sent a message in a bottle

183. Spent the night in a hostel

184. Been a cashier

185. Seen Old Faithful geyser erupt

186. Joined a union

187. Donated blood or plasma

188. Built a campfire

189. Kept a blog

190. Had hives

191. Worn custom made shoes or boots

192. Made a PowerPoint presentation

193. Taken a Hunter’s Safety Course

194. Served at a soup kitchen

195. Conquered the Rubik’s cube

196. Know CPR

197. Ridden in or owned a convertible

198. Found a long lost friend

199. Helped solve a crime

200. Responded to a NJP newsletter

Looks comfy, right? LOL

I just think it's so silly and cute when Conner puts his head like this in the swing (he does it awake and asleep). We are guessing he does it because it opens his airway up more and is easier to breathe. It seems like it would so uncomfortable, but apparently he likes it!

"What it's like to be a heart mother"

I read this poem on another "heart mom"s blog and loved it:

"What it's like to be a heart mother"

It's that very first moment,
He's placed in your arms,
A wrinkled red face,
Filled with so many charms,
You can't help but cry,
(As a new mother knows)
You've been waiting so long,
Just to count all his toes,
Then visitors come,
Bearing gifts that are blue,
And they laugh, and snap pictures,
Saying, "He looks like you."
And in just a few days,
(Ahh... the joy and the fun)
You'll be on your way home,
With your beautiful son.


What is it like to be a heart mother?
Again, it's that moment,
You hold your child close,
And cry secret tears,
That a heart mother knows.
In just a few days,
Maybe less,maybe more,
You'll be letting him go,
Asking, what lies in store?
And as your child lays,
In a small isolette,
You think to yourself,
I must not get upset,
And as family arrives,
You try hard to stay strong,
But your tired eyes say,
That this all seems so wrong.
You know what is coming,
Though your still not prepared,
He will leave your safe arms,
To have his heart repaired.


What does it mean to be a mother?
It is nights with no sleep,
It is feedings and spit up,
It is watching him roll,
And then finally sit up.
It is knowing this child,
Depends on you most,
It's those everyday milestones,
in which, you can boast.
And yes... there is crying,
(At time's it's quite loud)
But when he says,, "Mama".
He makes you so proud.


A heart mother...

Ahh.. yes little rest,
As the monitors beep,
And you begin to question,
Is there such thing as sleep?
And you can't go home yet,
And your kid's ask each day,
"Will we see you soon mommy?
Can you come home and play?
Real soon... you promise,
Yes...I miss you too",
And then people ask,
How you do what you do.
And you stroke his forehead,
And his fist is unfurled,
And you know for this child,
You would give all the world.


A mother...

Time passes quickly,
Soon he's off to school,
And before you know it,
Hugs just aren't "cool",
He's a teenager now,
With dreams of his own,
And one day it hits you,
My child, has grown.
And though you are proud,
For all he's achieved,
Life passed more quicly,
Than you could have believed.


A heart mother...

You've always strived to live each day,
As if it were the last,
As the mother of a heart child,
You know things can change fast.
You've seen so many familes,
Endure things you can't understand,
And while you trust that God is good,
Sometimes you just don't understand.
But you go on, because you must,
God chose you for him, and no other,
Your stronger that you could imagine,
You have become a heart mother.


Every mother...

And every mother's journey,
Begins on that day when,
She knows with everything she is,
A mother, she has always been.
Crayon marks cover all the walls,
Muddy prints scatter the floor,
Toys and messes everywhere,
And yes... laundry galore.
I must have the best job that there is,
(Despite all the clutter and mess)
My children.. they remind me,
Life shouldn't be such a stress.
Each and every day we have,
(To laugh, to hug, to play)
Is a memory I'll always have,
And nothing, can take that away.
I wouldn't trade a moment,
Or all that they've taught me to see,
I'm blessed to be a mother,
It's more than I'd dreamed it could be.

~Stephanie Husted

Re-rescheduled!

Conner's heart surgery was rescheduled again, but this time it's for the better! Yay! We called and talked to scheduling to figure out why it had been rescheduled so far out, and they looked into things, and were able to get him in sooner. This time the surgery is set for June 22nd. We pray that he doesn't get bumped again, and that this date will hold true and that he can get his heart fixed, so that he can recover and we can move onto other issues, like his eating.

(What a hot husband I have!)

Bound to happen...AGAIN! and AGAIN!...

This sweet little boy just likes his face without his feeding tube!! I guess I do too...because like 2 weeks ago, I went to pull him out of his swing...and yep, there it went! The tube got stuck around the bottom corner of his swing, and I didn't notice, *der!*, and it slipped (ok, maybe the word to describe it is more like yanked) right out of his poor little nose! I, OF COURSE, felt so so so so so terrible and cried forever again, and OF COURSE my husband was just the sweetest guy (he is seriously way too nice to me!) and said that it was just a mistake...again! So up to PCMC we went and had it put back in.

THEN last weeks rolls around, and Conner has a very fussy, rub-my-face-all-day kind of day. Anytime I was holding him and he was facing towards me, he would constantly rub his face against my shirt/burp cloth...and he would not stop unless I physically turned his body away from mine!!! Silly boy! I guess the feeding tube makes his nose/face itch or feel super tickly, or something, because he will rub his face until his nose is bright red! So anyways, it was one of those kind of days, and he just started adding in using his hands to rub his face like that same week. I had been watching his hands all day to make sure he wasn't too close to his tube, but never thought of putting socks on his hands to be extra safe. Well, I was holding him, and he was rubbing his face on me, then was using his hands to rub his face, and I pulled his hands down, and they went right back up, and I moved his hand again...oops, too late...didn't see that he had his skinny little long finger wrapped around the tube! (in the little tiny space between where the tape leaves an opening by the curve of the nose!). OK, so this time the tube came out, I literally laughed, which felt much better than crying! I couldn't help it because every time I looked at Conner, he smiled at me, like he was saying "oh mom, I just look so much more handsome without the feeding tube in, right? oh ya, check me out!". It was so adorable! What a little stinker! So I'm really really really hoping though that the 4th time was it, and that it doesn't happen again!!!!!!!

Rescheduled...AGAIN

I am very sad to report that Conner's heart surgery has been set back again. The hospital called and said that there are emergency cases that need to before Conner, and so they rescheduled him to JULY 6TH. Needless to say I cried for the next hour. I'm sure the 5 weeks will go by faster than I expect, but right now it seems like an eternity away. Of course I have to look at the bright side of the situation: 1) More time we get to spend with Conner before he goes in for surgery 2) We will get to see him develop more with things like smiling and laughing and rolling over 3) There is comfort in knowing that there is a reason for this happening and that Heavenly Father is in charge and knows what is best.

Rescheduled...

Sorry everyone, I should have made this post a few days ago...but Conner's heart surgery was rescheduled to this Friday. The hospital called me a few days ago and told me that they had just admitted 2 babies that both needed heart surgery more urgently than Conner, so they moved him to Friday. Even though it's only 3 days later, I was SO bummed about it. I had been mentally preparing myself and was focused on June 1st being the day that would change fix Conner's heart. I actually cried on the phone when she told me we had to r/s his surgery. But I understand that the other babies need it their surgeries done sooner than Conner. I know it's a good sign that his heart is stable and able to wait longer. I'm very thankful that it is still this week. I would have been totally sad if it was next week or longer. Sorry this update came late!