I'll have to wait until tomorrow to talk to the surgeon to see if this means we need to reschedule her intestinal surgeries. I don't know what to hope for.
Sunday, May 31, 2009
Seraph is sick. She had a low grade fever yesterday (up to 101.4) which could've been from teething - 2 new teeth poking through on top! She's had diarrhea for the past 3 days which could be from taking her off asprin? ..(not likely, but it did change her fluid intake)
Friday, May 29, 2009
Wednesday, May 27, 2009
Seeing the movie's commercials, I decided that I really wanted to read this book before seeing the movie. That was before I realized Jodi Picoult wrote it. (I enjoyed reading her book, "Nineteen Minutes.") Not my usual genre, but it's a good read, too.
Haqon keeps looking over and asking if I'm OK. I admit - this book has been hard for me to read. But, it's helped me see silver linings.....and explore deep fears, emotions, and ethics. I love getting lost in a book.
I love books.
They took Seraph off aspirin this week in preparation for her surgery (so she won't bleed as much). Aspirin thins her blood to prevent clots and ease her heart's workload. I've been nervous about having her off it, but she's doing fine. She has a new tooth! That makes 1 on top & 3 on bottom.
Angel stands up by herself when she doesn't notice she's doing it!
Strong Bear decided he'd rather be a big boy than a little boy. So, he's in underwear! There've been a few accidents, and mom still tells him to go potty before mealtimes...but he doesn't fight me about it. :) Big boys get to play more games, go to the park, go swimming, and stay up a bit later.
Beautiful Rabbit spent the weekend with her cousins. They went swimming every day. Lucky for her, the pool near us just opened, too. Last night we squeezed in 25 minutes of swimming before closing time. :)
Tuesday, May 26, 2009
I pulled a muscle in my back while doing yoga....on the wii! I was making fun of the "don't push yourself too hard" warning when it happened. /sigh
My pretty internet says it'll take atleast a month to heal. I'm getting better at automatically finding the motions that don't cause blinding pain.
Be careful out there!
Thursday, May 21, 2009
Seraph's intestinal surgery is scheduled for June 2nd. Because of her heart history, any surgery (being put under general anesthesia) is more risky. So, they'll be correcting several intestinal problems all in one surgery: nissan fontifcation for GERD, placing a G tube for feeds, and Ladd procedure to fix her intestinal malrotation (this includes removing her appendix).
We expect her to be in the hospital for less than two weeks. Immediately following the surgery (while she's still sedated), they'll do a full echo cardiogram on her heart. We hope to hear good news about her heart.
They will have to intubate her for the surgery. It breaks my heart to put her through this again. I know that getting rid of the reflux and being able to eat normally will be worth it. But, there's no way to convey this to her. During her recovery, I plan to be at the hospital with her as often as I can get away.
This is a good step forward for Seraph. Thank you for keeping us in your thoughts and prayers. *hugs*
Because she was born early (and maybe other factors), Seraph has GERD. The valve between her throat and her stomach is weak. She often spits up stomach acid.
The Nissen is a surgical correction for GERD. They take the stomach and wrap it around the bottom of the esophagus. Then they stitch it into place. This wrap puts pressure on the esophagus so that liquids from the stomach don't go back up her throat. When she swallows, her food will be able to go into her stomach but it won't come back up.
Currently, all of Seraph's foods and medicines go through a tube in her nose directly into her small intestine. After the nissan, she'll be able to start learning how to eat normally :). Her mouth won't be so dry all the time. Her lips won't be chapped from the acid. She'll be more comfortable. Her risk of choking on the reflux will go down.
We're very excited for this surgery (scheduled for June 2nd).
They'll make 5 small openings (about 1/4 inch long) to do the surgery. We expect her to be in the hospital less than 2 weeks.
While she's learning to eat, Seraph will still be fed through a tube. Instead of an NJ tube (which goes through her nose), she'll have a G tube which goes right into her stomach.
They'll put this in while they're doing the Nissan.
After she learns to eat, they'll take it out and it'll quickly heal up. (Time wise, it'll depend on her...but I expect it'll take years to catch up on swallowing, etc)
Because it will be under her onsies, Angel won't be able to pull it out! So, Angel and Seraph will be able to play together all the time :)
She'll still be on oxygen, but we're very excited to get the food tube out of her nose. Her gag reflex will calm down. We won't have tape her face up so much. We won't have so many late night visits to the hospital to get the tube replaced.
At first, she'll still be on continuous feeds. But in a few months, we'll be able to switch her to eating every 3-4 hours during the day. She'll have more freedom.....which is good because she's getting closer to sitting up....and crawling won't be that far behind.
The instestines grow outside of the fetus--in the umbilical cord. At 10 weeks, they return to the fetus's body and get attached to their abdominal wall. Malrotation occurs when they turn the wrong way and don't attach. It's very common (1 in 500 births).
Sometimes it doesn't cause a problem. Other times it twists causing blockage or cutting off blood supply to the intestine. Seraph's heterotaxy probably helped cause her intestinal malrotation.
They'll tac her intestine to her abdominal wall. They also go through the intestine to make sure it hasn't attatched to itself. Because this surgery rearranges her internal organs (again), they're also taking out her appendix. Otherwise, her appendix would end up in an unusual place and appendicitis later in life would be difficult to diagnos.
Tuesday, May 19, 2009
My little boy is growing up!
Mom: How old are you, Bear?
Bear: Finch! You are not tall. I am tall and Mommy is tall, but you are NOT tall!
Mom: Bear, Finch is sad. You fix it!
Bear (to Finch): I'm smiling at you. I love you.
Bear (to Mom): It makes me happy, too. See - it makes her happy....and it makes me happy.
Friday, May 15, 2009
Thursday, May 14, 2009
Seraph sits up better. She LOVES going on walks. We went down to the lake while the kids met new friends on our favorite playground. Most of the lake has a rocky shore, but in this spot there's a sandy beach. We're going to have to come back in the middle of the day!
Seraph was fast asleep by the time we got home. Yay for walks :)
Wednesday, May 13, 2009
Baby Seraph is one a new meds schedule. They cut out her 6am meds! Yay! I'm sleeping again!! OK, my body thinks 6am is the perfect time for a potty break....but other than that, I'm actually getting some sleep.
She's adjusted to the new schedule and is doing well. She's all full of smiles.
Monday, May 11, 2009
Seraph did great on her Echo. She's been approved for her GI (instestinal) surgeries.
She hated it--all the touching and the goopyness! She rolled, wiggled, swatted, screamed, and fought. The tech thought we might have to sedate her to finish the test. (Scared me!) Seraph's Cardiologist found her "spunkiness" encouraging. If her heart function was too low, she wouldn't have had the energy to fight them off that much. The echo (they did manage to see her heart) showed improved heart function :)
After the echo, they did an x-ray, EKG, and lab tests (drawing blood--eeeep)! She was NOT happy. ....except she still smiled whenever anyone talked to her.
The surgeries will be done laproscopically. No more food tube in her nose! (She'll still have her oxygen tube.) No more stress over Angel yanking out her NJ tube. They'll be able to play together!! Significantly less reflux! Happier, more mobile (yikes, but yay) baby :)!!!
Saturday, May 9, 2009
My family surprised me Saturday morning with wonderful Mother's Day gifts. I loved the flowers sooo much that I took a picture and set it as the background on my computer! I took the picture on my front porch with the evening sky as the background.
I just found out atleast 2 of the moms who had momo twins around the same time as me are pregnant again. Wow! ...and a little crazy ;)
I remember the first Mother's Day after I was married. We lived in Houston. They handed out flowers in church to all the moms. They insisted on including me because I would be a mom soon.
A few years later, I stood in church waiting for my flower on Mother's Day. I was pregnant with Beautiful Rabbit. I felt so much love for her that day. My tiny little baby - I felt like she was giving me hugs...that would be just so her!
Now it's my first Mother's Day with the twins. It snuck up on me!
I love it when my kids smile at me; when they're soothed just by seeing me near. I still feel that way around my own mom. She's the bestest! She taught me about mommy-hugs. She just shows up when I need help - sometimes before I even know I need it.
I love you, Mommy :)
Now go call your own moms before your day gets busy :p
Posted by RainSplats at 10:22 PM
Friday, May 8, 2009
Seraph had a fever off and on all day yesterday. So, her cardiologist decided to give her a few days to recover. She doesn't have to be completely still for the echo, but she does have to put up with a LOT of touching.
So far she seems fine today. It might've just been from teething. Anyway, Seraph will have her Echo on Monday (May 11th). So if you were holding your breath, go ahead and take some deep breaths :)
Tuesday, May 5, 2009
Mom [to Strong Bear]: Can you be Baby Angel?
Bear: ya. [Bear kneels on the floor and starts "walking" along the couch while hitting it with his hands]
Dad: Can you be Baby Seraph?
Bear: [opens his mouth and starts screeching in a low voice like she does when she's "talking"]
Mom: Can you be Delightful Finch?
Bear: [starts babbling non-stop mostly nonsensical words....very happily]
Dad: Can you be Beautiful Rabbit?
Bear: [Stands up, sighs, plops down on the couch and says:] But it's my turn!
Dad: Can you be Mommy?
Bear: "I don't think we should be doing that, guys"
Mom: Can you be Daddy?
Bear: "And we shouldn't be doing that. I think we need to put the guitar up very high."
Mom: Can you be Strong Bear?
Bear: "We can do it if we want tooooo!!"
Mom: Can you be Grandma?
Bear: yes. "Noooooo"
Mom: Can you be Grandpa?
Bear: "Uh, that's not a good idea."
Monday, May 4, 2009
Ht: 27 inches (20th % for her age)
Wt: 20 lbs 9 oz (70th % for her age)
Seraph's Echocardiogram with Cardiology is still Friday. Today was just a normal pediatrician visit.
Her pediatrician seemed baffled at her progress. He didn't expect her to be so happy...or to be growing new teeth or to be progressing developmentally. No one that he's talked to expected her to be doing this well. He tried to be very careful to not get our hopes up....but he's very interested to see if she has increased heart function. (I guess the cardiologist doesn't send the results fast enough...Pediatrician asked me to call him Friday to tell him how things go.)
He didn't want to make any changes before her cardio appointment Friday. But.....but I could hear his brain switching gears. He kept repeating "palliative care" like it tasted odd in his mouth. Then he said that we needed to start thinking about getting her immunization shots done.
When Seraph came home on palliative care, I told him I didn't want her to get the shots - to have one more thing for her body to deal with. He completely agreed. But, now he'd like to start up her shots at her next appointment - in 2 months.
Of all her doctors, her pediatrician has been the biggest realist. So, it was wonderful to hear him switch gears like that.
I'll admit it - I love showing off how well she's doing. I love watching that solemn look turn surprise and then a .."I'm not sure where to go from here" look.
I haven't had the twins out together in months. It was fun to let people ooooh and awww over them.
Chubby. Her formula (the way they told me to make it) might be too calorie rich. Seriously, that's how he said it...lol. Anyway, he deferred to the cardiologist in deciding if her weight gain is good or if they should slow it down.
Aside from wiggling, she doesn't get much exercise. At first they thought she was retaining water...but now they think it's just too many calories. They talk about how Seraph's heart works harder and burns (3 times) more calories than Angel's heart. So, it seems Seraph's heart might not be working as hard as they thought it would. I think that's a good thing.
Thanks, again, for keeping us in your thoughts and prayers...and extra thanks to all those who fasted for her. I feel good about her progress.
Hopefully I'll have more good news for you Friday ~ Have a nice week :)
Ht: 28 inches (50th % for her age)
Wt: 18 lbs 14 oz (35th % for her age)
Angel is exactly where she should be at 10 months. She's sitting well, crawling well, standing well....She has a strong stranger anxiety. (Visitors can attest to this.)
She can eat more and more real food. Basically everything mashable but not peanuts. She can even have milk products - cheese, yogurt....just not straight milk.
She LOVES eating the same food as the rest of the family. Sunday she try to hypnotise me into giving her my chocolate cheesecake! That didn't work, but she did get her first dose of Mac & Cheese today. (Delightful Finch fed Angel some star crackers so she wouldn't go hungry while I made dinner. Finch makes for a cute tiny mommy.)
Shots. Angel had 3 immunization shots today + they drew blood for an iron test. Not only that - mommy didn't let her explore the doctor's office because Seraph was on a blanket on the floor.....and Angel still loves yanking on Seraph's cords way too much!
My baby is growing up! Tonight Angel and Finch sat on the floor together sorting through toys. I think she's graduated from baby to playmate in the kids' minds. *sniff sniff*
Friday, May 1, 2009
Please join us in fasting for Baby Seraph this Sunday (May 3rd 2009).
Seraph's heart has several defects. She needs another open-heart surgery, the Fontan (this link explains all 3 heart surgeries, the fontan is the last one). Last January, the cardiology team decided she is NOT a candidate for this 3rd heart surgery. Her pulmonary veins are too small. Pulmonary veins don't grow bigger. They also decided she's not a candidate for some intestinal surgeries she needs. They didn't expect her to live this long.
The pulmonary veins are actually in her lungs. In the picture, the pulmonary
veins are the RED tree-branch-looking veins in the lungs. The pulmonary veins bring oxygen-rich blood back to the heart.
See how the veins are bigger the closer they get to what would be the "trunk" of a tree?
Seraph has 3 pulmonary veins on her right side. One of those is fine. Another is probably OK. The third is too small. Picture a long, narrow tree trunk that doesn't have many smaller limbs branching off it.
That's fine for a tree, but Seraph's blood flows through these branches. If the branch is too narrow, the blood can't flow through fast enough. (The pulmonary veins on her left side are fine.)
The Fontan surgery will double the volume of blood that has to flow through those veins.
Seraph's body is slowly outgrowing her heart's ability to pump enough oxygen to it. She'll need the Fontan to survive.
May 8th, Seraph will have an echocardiogram--a high res ultrasound on her heart. They'll be looking specifically at her blood flow and her pulmonary veins. We're praying that her doctors will find something to reverse their decision and allow her to have the Fontan procedure. This will put her back on their list of "treatable" patients. We're also hoping they decide she's well enough to have the intestinal surgeries to ease her GERD (really bad reflux).
Baby Seraph has thrived at home. Despite catching 2 colds, she's done so well. She went from constant pain to rolling onto her tummy (thus her scar) on purpose! She's gained weight and started physical therapy. She has 3 new teeth :) She scoots and wiggles and rolls as far as her cords will let her.
She loves being with her family and especially with her twin sister, Baby Angel. They are very close. They shared the same sac in utero. It's a miracle that their cords didn't knot and twist each other off before they were born.
Baby Seraph needs (another) miracle. We want her to grow up with her twin sister...and have a long & happy life. Thank you for fasting with us. Please keep Seraph in your thoughts and prayers.
I hope to have good news for you soon :)