Thursday, February 28, 2013
U-Turn
Just thought I would start this blog with a song. I was a nervous Nelly for nothing. Willa has had a fabulous morning. She stopped receiving the oxycodone around 10am. The IV was turned off around 1130am. After a one hour nap she polished off a two ounce bottle. This all adds up to us heading home.
Dr Adamson said to keep her home next week and after that we can return to our normal life. Normal. Something I am very excited to reach.
Oh, and I asked Dr A if Willa will be able to have a six pack in the future. She can as long as she can overcome her genetics. Mommy and daddy hide their six packs well.
Found Another Negative...
Another negative of the children's short stay unit is the lack of soundproofing. Willa was just woken up three times by another patient. I assume the child was waking from the anesthesia. I realize this was in no way intentional but it was very frustrating for us because we need her to rest and be able to heal. This almost brought out the papa bear in Daren.
No worries, that patient has been discharged and the unit has returned to the normal hum of noise. Willa is back to napping and I am back to enjoying my second latte of the day.
No worries, that patient has been discharged and the unit has returned to the normal hum of noise. Willa is back to napping and I am back to enjoying my second latte of the day.
Fortune Cookie
Last night we got chinese food delivered to the hospital. Daren didn't eat his fortune cookie. I just cracked it open so Willa could have his fortune...and I think it is pretty perfect.
Pumping Brings Out the Doctors
Just had an early morning visit from one of the medical students on Dr Adamson's service. She was stopping by to see Willa. As in the NICU, pumping brings out the doctors. I of course had no issue with talking to her. I can multi-task.
The med student didn't assist with the procedure but was able to watch (I'm picturing the viewing room from Grey's Anatomy). She asked if I was happy with the belly button. I said we hadn't really gotten to see it but I knew Dr A did his best. Med student agreed and said they took their time.
She wanted to know if we had any questions she could bring up to the surgical team. She also wanted to know if Willa was in any pain. I don't think she is in pain but I would put it more as uncomfortable. Willa is starting to move around a bit more but still spends the majority of the time sleeping. Willa did just do a double leg raise around 4am when her diaper was being changed. I think our nurse is keeping on top of her meds.
My questions for the doctors are concerning her stitches and getting her to feed. The initial thought was that Dr A would use stitches which would later need to be removed, but it appears he has used the dissolvable kind. I also want to know if they will lower the IV dose so we can get her to start taking the bottle.
Willa is starting to make some noise from the lower end. Farting is good b/c that means her insides are starting to function. We have had a few "schmears" in the diapers. A quick use of the stethoscope let the med student know the intestines are churning.
So, I want to run and grab a coffee before the doctors get here for rounds. I'm also expecting Daren to come back soon. I'm hoping he got a good nights sleep after leaving here at 11ish. I stuck it out on the pullout chair/couch. I'm happy to report our little neighbor boy is going "pee pee" quite regularly. Oh the joys of sleeping in an area surrounded by curtains.
The med student didn't assist with the procedure but was able to watch (I'm picturing the viewing room from Grey's Anatomy). She asked if I was happy with the belly button. I said we hadn't really gotten to see it but I knew Dr A did his best. Med student agreed and said they took their time.
She wanted to know if we had any questions she could bring up to the surgical team. She also wanted to know if Willa was in any pain. I don't think she is in pain but I would put it more as uncomfortable. Willa is starting to move around a bit more but still spends the majority of the time sleeping. Willa did just do a double leg raise around 4am when her diaper was being changed. I think our nurse is keeping on top of her meds.
My questions for the doctors are concerning her stitches and getting her to feed. The initial thought was that Dr A would use stitches which would later need to be removed, but it appears he has used the dissolvable kind. I also want to know if they will lower the IV dose so we can get her to start taking the bottle.
Willa is starting to make some noise from the lower end. Farting is good b/c that means her insides are starting to function. We have had a few "schmears" in the diapers. A quick use of the stethoscope let the med student know the intestines are churning.
So, I want to run and grab a coffee before the doctors get here for rounds. I'm also expecting Daren to come back soon. I'm hoping he got a good nights sleep after leaving here at 11ish. I stuck it out on the pullout chair/couch. I'm happy to report our little neighbor boy is going "pee pee" quite regularly. Oh the joys of sleeping in an area surrounded by curtains.
Wednesday, February 27, 2013
Moaning and Groaning
It is now about six hours post-surgery and Willa is still pretty out of it. I'm having NICU flashbacks with the wires, monitors, and IV. I was able to see her in the recovery room a little before 1pm. I'm not going to hide the fact I burst into tears when I saw her lying in the bed. The nurse quickly assured me that she was doing fine. I let her know these were tears of joy because once again we were so blessed with how things worked out.
Daren didn't even get to swap out with me for the recovery room visit before Willa was being transported to the children's short stay unit. It is a large room which is partitioned by curtains. Bonus points for this area - we can have food and drink. Negative of this area - space is at a premium. Willa has either been sleeping, moaning, or crying since we've been here. I would also put them in that order for length of time. We have had some inconsolable moments of crying with high pulse rates. Since being here, Willa has had oxycodone, tylenol and morphine. I only wish I could say she has taken equal amounts of milk. She has no interest in feeding. We do need to see some urine output in her diapers.
Willa had a very sad face as she was sleeping when we first came to the short stay unit. I just had to capture it since she is normally so smiley.
Below is a picture of her abdominal repair. The black lines are the guides for Dr Adamson when creating her belly button. He stressed to us how careful they were about trying to get the location just perfect. The orangish color is leftover bedadine.
Thank you all for your text messages. Again, I'm very happy that I switched to an unlimited plan.
Daren didn't even get to swap out with me for the recovery room visit before Willa was being transported to the children's short stay unit. It is a large room which is partitioned by curtains. Bonus points for this area - we can have food and drink. Negative of this area - space is at a premium. Willa has either been sleeping, moaning, or crying since we've been here. I would also put them in that order for length of time. We have had some inconsolable moments of crying with high pulse rates. Since being here, Willa has had oxycodone, tylenol and morphine. I only wish I could say she has taken equal amounts of milk. She has no interest in feeding. We do need to see some urine output in her diapers.
Below is a picture of her abdominal repair. The black lines are the guides for Dr Adamson when creating her belly button. He stressed to us how careful they were about trying to get the location just perfect. The orangish color is leftover bedadine.
Best case scenario
Dr Adamson just stopped by to fill us in on the procedure - it sounds like it was a best case scenario. He was able to draw the muscle together without the need for a mesh to bridge the gap. She's in recovery now with no breathing tube or assistence. Dr A was pleased with everything and it sounded like were it not for keeping an eye on her coming out of the anesthesia, she wouldn't even need to stay! God is good. :)
Underway
One of the anesthesiologists carried Willa back to surgery just before 930am. She cuddled right into his arms. No stranger danger for our little girl.
Here is her surgery t-shirt. Kimono style.
Here is her surgery t-shirt. Kimono style.
Delayed
We are still waiting to be taken back to surgery. We are delayed because Dr Adamson got pulled into an emergency surgery. So far things are calm because Willa is sleeping. However, we are going to have a very hungry/loud baby if she wakes up. Daren is getting a good bicep workout rocking the car seat.
The anesthesia team says things are about to start moving...
The anesthesia team says things are about to start moving...
Tuesday, February 26, 2013
Hours to go...
Thank you to everyone for the phone calls, texts, emails, and FB messages. I know I've been unable to keep up with the correspondence. We will use the blog to update you on how things are going. We have to be at the hospital at 7am. Willa's surgery is scheduled for 830am.
Impromptu Photo Session
Our friend Mike Mantini stopped by for a visit on Saturday afternoon. This was his first time seeing Willa. Of course Mike brought along his crazy amazing camera to take pictures of Willa. Well, not even his crazy amazing camera could change the fact Daren and I had yet to shower for the day. I tried to limit the pictures I picked for the blog. Well, as you can tell by the large number of pictures is that I failed in trimming many pictures from the lot. Willa was so full of smiles for Mike.
Saturday, February 23, 2013
Pre-Op
Thursday was our pre-op appointment. Daren and I were armed and ready with a list of questions for Dr. Adamson. As always, we started with the measurements. Willa just can't break the 9 pound barrier. For the third week in a row (previous two weigh ins were at home) she is weighing 8 pounds 12 ounces. However, at 23 inches we did have another increase in length.
After measurements was our appointment with Dr A. It might be easiest to list our questions and attempt to recreate the answers -
#1 How long will the surgery take?
We knew this would be an approximate answer. Dr A said the surgery wouldn't be in the 4-5 hour range. He guestimated it would be more like 1-2 hours.
#2 What are you anticipating to occur during the surgery?
Dr A thinks that part of the bowel might be attached to the skin over the omphalocele. If this is the case, he might have to resect a portion of the bowel. He expects the rest of the intestines and liver to be okay. If Dr A was more concerned about the bowel then Willa would be admitted to the hospital 1-2 days prior to the surgery for bowel prep.
#3 Will you be using a mesh?
Willa might not have enough muscle to pull everything together for the closure. One of two things could happen - the use of a patch made of natural material which would be absorbed or the use of a mesh to be removed during a later surgery. Dr A would like to use a patch. The use of the patch would cause a hernia that would be repaired when Willa is 2-3 years of age. I'm really hoping she has enough abdominal muscles and we can be done with surgeries.
#4 Will you create a belly button for Willa?
Yup and it better be an innie.
#5 What will you use to close?
Dr A said he would probably use stitches which will need to be removed at a later time.
#6 Where will the recovery take place?
Originally we were told Willa would be in the PICU. If everything goes smoothly, Willa's recovery will be on the 7th floor - I believe that is the general peds floor.
#7 How will Willa feed after surgery?
Dr A thinks Willa should be taking a bottle shortly after surgery and won't need a feeding tube.
Dr A also said that Willa could stop wearing the brace for the final days prior to the surgery. The omphalocele has shrunk as much as it going to.
We also had our last visit with the guys from prosthetics. We only needed to take some final pictures since Willa was done wearing the brace. You could tell how proud the guys were for the amazing progress of the omphalocele. It was even mentioned they would publish a study since there is so little research material on the bracing/compression of an omphalocele. We of course are supporting this whole heartedly and are happy to let them use our pictures if necessary.
Oh and no brace means Willa finally gets to wear separates! Her outfit on Friday (Daren says she will never wear these "skinny jeans" again) was super cute. Those darn socks make her feet look a little big. Oh, and the close shot is the under-onsie. My daughter is so smart.
#1 How long will the surgery take?
We knew this would be an approximate answer. Dr A said the surgery wouldn't be in the 4-5 hour range. He guestimated it would be more like 1-2 hours.
#2 What are you anticipating to occur during the surgery?
Dr A thinks that part of the bowel might be attached to the skin over the omphalocele. If this is the case, he might have to resect a portion of the bowel. He expects the rest of the intestines and liver to be okay. If Dr A was more concerned about the bowel then Willa would be admitted to the hospital 1-2 days prior to the surgery for bowel prep.
#3 Will you be using a mesh?
Willa might not have enough muscle to pull everything together for the closure. One of two things could happen - the use of a patch made of natural material which would be absorbed or the use of a mesh to be removed during a later surgery. Dr A would like to use a patch. The use of the patch would cause a hernia that would be repaired when Willa is 2-3 years of age. I'm really hoping she has enough abdominal muscles and we can be done with surgeries.
#4 Will you create a belly button for Willa?
Yup and it better be an innie.
#5 What will you use to close?
Dr A said he would probably use stitches which will need to be removed at a later time.
#6 Where will the recovery take place?
Originally we were told Willa would be in the PICU. If everything goes smoothly, Willa's recovery will be on the 7th floor - I believe that is the general peds floor.
#7 How will Willa feed after surgery?
Dr A thinks Willa should be taking a bottle shortly after surgery and won't need a feeding tube.
Dr A also said that Willa could stop wearing the brace for the final days prior to the surgery. The omphalocele has shrunk as much as it going to.
We also had our last visit with the guys from prosthetics. We only needed to take some final pictures since Willa was done wearing the brace. You could tell how proud the guys were for the amazing progress of the omphalocele. It was even mentioned they would publish a study since there is so little research material on the bracing/compression of an omphalocele. We of course are supporting this whole heartedly and are happy to let them use our pictures if necessary.
Oh and no brace means Willa finally gets to wear separates! Her outfit on Friday (Daren says she will never wear these "skinny jeans" again) was super cute. Those darn socks make her feet look a little big. Oh, and the close shot is the under-onsie. My daughter is so smart.
Skyping Fun
We do most of our communicating with family by Skype since my family is in Iowa/South Dakota and Daren's family is in Pennsylvania. I think this is much more fun than just a regular phone call because we get to experience some fun things. Like a cello concert by my niece Stella.
Wednesday, February 20, 2013
Good Morning!
I have a very happy baby in the morning. I don't always get to see her before I leave for work. Today I got lucky and Willa started stirring just before 7am.
Monday, February 18, 2013
Nine Days
I have nine days until I give my little girl to Dr. Adamson and his team of doctors. I have nine more days of my mind spinning out of control. I can only imagine this is how I would have felt had Willa been born on the date of the scheduled c-section. The times where my mind races are when I'm driving to work in the morning and the middle of the night pumping session. I get lost in my thoughts of the what ifs....
I do have a second distraction besides my own beautiful smiley little daughter and that is Olivia. Now, Olivia has yet to be born. Amy's mom found my blog and we have been corresponding since early January. Olivia also has an omphacele which containes her liver and intestines. Olivia's grand entrance has been scheduled for March 4th in Winston-Salem. I've never met Amy or her husband but I feel like we are family.
Another quick update about another om baby. I posted a news story/video about an om birth in Missouri. Well, baby Hayden went home this weekend after 30 days in the NICU. I wish all the luck and love to his parents. I loved the NICU at UNC but I will say there is no differentiation between day and night in a NICU. Those first few days at home can be tough trying to get the baby to sleep when you want to sleep.
Okay, lets bring this all back to my little girl. I have nine more days until we go in for her surgery on the morning of the 27th. We do have our pre-op appointment with Dr A on the 21st. I view the closure surgery the same as the birth. We don't know what we will find until we get in there. I'm teetering between concern and worry. I really need to go back and read my post from 9/26/12.
This morning while driving to work I was listening to The Message on my Sirius radio. I caught the end of a song I've never heard before and it really shook me. I can't listen to this entire song being nine days from surgery. I want to...but I can't.
Kutless - "Even If"
http://www.youtube.com/watch?v=HqOkZiOb9u0
I do have a second distraction besides my own beautiful smiley little daughter and that is Olivia. Now, Olivia has yet to be born. Amy's mom found my blog and we have been corresponding since early January. Olivia also has an omphacele which containes her liver and intestines. Olivia's grand entrance has been scheduled for March 4th in Winston-Salem. I've never met Amy or her husband but I feel like we are family.
Another quick update about another om baby. I posted a news story/video about an om birth in Missouri. Well, baby Hayden went home this weekend after 30 days in the NICU. I wish all the luck and love to his parents. I loved the NICU at UNC but I will say there is no differentiation between day and night in a NICU. Those first few days at home can be tough trying to get the baby to sleep when you want to sleep.
Okay, lets bring this all back to my little girl. I have nine more days until we go in for her surgery on the morning of the 27th. We do have our pre-op appointment with Dr A on the 21st. I view the closure surgery the same as the birth. We don't know what we will find until we get in there. I'm teetering between concern and worry. I really need to go back and read my post from 9/26/12.
This morning while driving to work I was listening to The Message on my Sirius radio. I caught the end of a song I've never heard before and it really shook me. I can't listen to this entire song being nine days from surgery. I want to...but I can't.
Kutless - "Even If"
http://www.youtube.com/watch?v=HqOkZiOb9u0
Thursday, February 14, 2013
Tuesday, February 12, 2013
Friday, February 8, 2013
Information Overload
I am obsessed with omphaloceles. I am constantly searching for blogs to read. I love the two Facebook groups dedicated to oms. I'm part of a Yahoo group. I want to know how the pregnancy progressed. I want to know if their pregnancy went full term or if the babies were delivered early. I want to know what the treatment plan was like for the om babies. Did they doctors do an immediate closure or is it delayed? I feel like we are all one big family and we support each other.
Just last night a news story aired in St. Louis, Missouri about the birth of Hayden. The camera crews were in the delivery room!!! Unbelievable! Watching the video brought the emotions rushing back from October 27th when Willa was born. I was that person walking down the hallway in the hospital gown with a cap on my hair. Actually, this video showed me what I missed with Willa's birth. We don't have a video of her birth. We only have just those quick cell phone pics Daren took just before she was whisked away to the NICU.
I think Hayden's parents are so strong to let this television crew into their OR. I'm not sure I could have done the same. Obviously, both Hayden and Willa are some of lucky om babies who were born without additional complications. Both babies have strong lungs, the membrane covering remained intact, and all chromosomes are as they should be. Not all families are as lucky as we are.
I will continue to follow Hayden's blog as he remains in the NICU. I believe he is nearing the three week mark. He is struggling with feedings like Willa. His parents have a very strong faith in God and seem to be handing the stress like champions.
The Fox 2 video - http://fox2now.com/2013/02/07/baby-born-with-organs-on-outside/
Just last night a news story aired in St. Louis, Missouri about the birth of Hayden. The camera crews were in the delivery room!!! Unbelievable! Watching the video brought the emotions rushing back from October 27th when Willa was born. I was that person walking down the hallway in the hospital gown with a cap on my hair. Actually, this video showed me what I missed with Willa's birth. We don't have a video of her birth. We only have just those quick cell phone pics Daren took just before she was whisked away to the NICU.
I think Hayden's parents are so strong to let this television crew into their OR. I'm not sure I could have done the same. Obviously, both Hayden and Willa are some of lucky om babies who were born without additional complications. Both babies have strong lungs, the membrane covering remained intact, and all chromosomes are as they should be. Not all families are as lucky as we are.
I will continue to follow Hayden's blog as he remains in the NICU. I believe he is nearing the three week mark. He is struggling with feedings like Willa. His parents have a very strong faith in God and seem to be handing the stress like champions.
The Fox 2 video - http://fox2now.com/2013/02/07/baby-born-with-organs-on-outside/
Saturday, February 2, 2013
Three months!
 |
| I was all smiles wrapped in my towel. |
I am also starting to talk a little bit - well, I consider it talking. Nobody can understand me yet but that's their problem. It makes perfect sense to me. I guess it could also be that I'm hard to understand with my hands in my mouth all the time. I'm also doing this thing that mommy calls tummy time. I'm not that good at it yet but I can turn my head from side to side.
One thing did make my celebration a little annoying - I had to avoid both mommy and daddy when they were sick. First mommy, then daddy. I think I have managed to avoid it, though.
I'm also getting ready for my surgery. My belly is getting smaller and smaller, so I'm thinking it should go smoothly and I'll be back home and getting to normal in no time. To get ready for this, mommy got me lots of new clothes. Hopefully I'll be ready for pool season!
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