Several days ago while driving Isaac to preschool, I remarked to the boys that I wished we had taken Vivian to the park to feed the ducks. (We pass by a park with a pond full of ducks and geese on our route to preschool). Vivian had a favorite ABC board book, and the D page had ducks on it. She would point to the ducks and look at me--her method of asking me to make the "quack" sound which I always did. Vivian would have been tickled with joy to hear real ducks quacking and swimming in the pond.
My 4 year old son stored this comment in his mind until prayer time at dinner. When he prayed aloud, he included, "I hope Vivian is having a good time in heaven, and I hope she is laughing at the ducks." When I started to explain about the ducks here at the park, Isaac said, "No, not here. She is laughing at the ducks in heaven. There are ducks in heaven." True and sweet of him to say!
Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:4-5
Saturday, November 5, 2011
$11.47 of Grace
People have said, "Be kind to yourself. Give yourself grace."
So I'm standing in a toy aisle filled with dolls. For the second time in two days I'm looking at this doll. It's just a little doll that comes with a doll-size sippy cup, a milk bottle and a pink teddy bear. I'm remembering the Thursday morning before Vivian died, she saw this same doll at our speech therapy appointment at the school. The therapist demonstrated symbolic play with the doll having a "drink" from her sippy cup.
I specifically recall Vivian's eyes sort of light up as she took notice of that activity. I could just see little wheels turning in her mind considering she too drank out of a sippy cup. With that spark of curiosity, I was excited to find that doll and buy it for Vivian. What I was really excited about was that Vivian might be transitioning into symbolic play from her cause/effect play. This would be a huge milestone in my book. How thrilling it would be to see Vivian imitate this play like a toddler would do!
As I stood in the store debating myself, it wasn't logical, and I couldn't really justify it, and quite frankly I felt a little silly. But, I couldn't put the doll back on the shelf. So, I paid the $11.47 for the doll and her accessories, and I'm not going to beat myself up about it.
The pink teddy bear is small enough that I think I will add it to a floral arrangement for our grave marker vase in the springtime for our sweet girl.
So I'm standing in a toy aisle filled with dolls. For the second time in two days I'm looking at this doll. It's just a little doll that comes with a doll-size sippy cup, a milk bottle and a pink teddy bear. I'm remembering the Thursday morning before Vivian died, she saw this same doll at our speech therapy appointment at the school. The therapist demonstrated symbolic play with the doll having a "drink" from her sippy cup.
I specifically recall Vivian's eyes sort of light up as she took notice of that activity. I could just see little wheels turning in her mind considering she too drank out of a sippy cup. With that spark of curiosity, I was excited to find that doll and buy it for Vivian. What I was really excited about was that Vivian might be transitioning into symbolic play from her cause/effect play. This would be a huge milestone in my book. How thrilling it would be to see Vivian imitate this play like a toddler would do!
As I stood in the store debating myself, it wasn't logical, and I couldn't really justify it, and quite frankly I felt a little silly. But, I couldn't put the doll back on the shelf. So, I paid the $11.47 for the doll and her accessories, and I'm not going to beat myself up about it.
The pink teddy bear is small enough that I think I will add it to a floral arrangement for our grave marker vase in the springtime for our sweet girl.
Friday, November 4, 2011
Copper Highlights
Ken noticed the details of Vivian's hair before I did. Her hair looked an obvious jet-black color to me. Yet upon closer examination, I too began to see individual strands of beautiful, natural copper highlights althroughout Vivian's hair. Vivian seemed to radiate an extra special warmth and beauty when the sunshine reflected her copper highlights. I was so excited to point this unique feature out to her when she got older.
It has me thinking about the gospels of Matthew10:30 and Luke 12:7 where it says the very hairs of our head are numbered. I know I love every hair on Vivian's head. I love her from head to toe, inside and out with all my heart and soul. I can sit here in awe to realize and appreciate that God loves Vivian even more than I do. After all, I am a finite and mortal person.
But, it is challenging to deeply acknowledge God's love for me too. It's amazing to be loved right down to each hair on my head. I am thankful for His unconditional love because right now I'm not so interesting...just a study in the mess of my grief. You know, where you can do a few things in periods of numbness and then you sit when your hands and feet turn into concrete blocks.
I learned a couple years ago that my faith is a gift from God. I am thankful each day for that gift because I tried for a long time to achieve faith, and it wasn't possible (but it was tiring). Faith gets me up each morning and pulls my mind back out of the dark corners of "perfect hindsight." Faith is drawing my heart and eyes and ears upward to listen, to be thankful, to live in the light and to walk through my grief.
It has me thinking about the gospels of Matthew10:30 and Luke 12:7 where it says the very hairs of our head are numbered. I know I love every hair on Vivian's head. I love her from head to toe, inside and out with all my heart and soul. I can sit here in awe to realize and appreciate that God loves Vivian even more than I do. After all, I am a finite and mortal person.
But, it is challenging to deeply acknowledge God's love for me too. It's amazing to be loved right down to each hair on my head. I am thankful for His unconditional love because right now I'm not so interesting...just a study in the mess of my grief. You know, where you can do a few things in periods of numbness and then you sit when your hands and feet turn into concrete blocks.
I learned a couple years ago that my faith is a gift from God. I am thankful each day for that gift because I tried for a long time to achieve faith, and it wasn't possible (but it was tiring). Faith gets me up each morning and pulls my mind back out of the dark corners of "perfect hindsight." Faith is drawing my heart and eyes and ears upward to listen, to be thankful, to live in the light and to walk through my grief.
Wednesday, October 19, 2011
Just some thoughts...
You know what else I have been thinking? Our laundry has dwindled to a measly few loads every several days. Vivian did create lots of laundry! And all the pinks and lighter colors were a wonderful complement to our rough-n-tumble dark boy colors. I used to smile in amusement as the dirty clothing pile was turning into a minor mountain.
We've gone out to eat, and I hate that we fit "so nicely" into a restaurant booth.
I opened the silverware drawer, and we had all spoons and were low on forks. Tears to my eyes because we always fed Vivian with a spoon and were always out of them. Same with my small bowls in the cabinet.
Our diaper days ended with such abruptness that I don't even know what to think.
The house is too quiet without all the musical toys that Vivian loved to play with constantly. She would actually punch on a musical toy and play with her non-musical wooden beads. It was hilarious--she was a smart little cookie. I won't admit to how many 40-packs of AA's I've bought at Sam's.
Seeing Vivian's baby swing on our swingset floating around in the several windy days we've had lately about drove me to insanity, and I had to take it down. She loved to swing and we did that often, sometimes even as a distraction if she was upset. Most of the time she loved to swing for fun.
Here's one Ken and I both hate...it doesn't matter whether we take the car or the van now. We fit in either, and we tend to take the car. Gosh, we were even starting to contemplate a vehicle to seat more children as we were hoping to add to our family next year.
Our kitchen table feels empty, Vivian's bedroom is empty, our wood floor is empty of her books and toys, our arms are empty...ugh.
We've gone out to eat, and I hate that we fit "so nicely" into a restaurant booth.
I opened the silverware drawer, and we had all spoons and were low on forks. Tears to my eyes because we always fed Vivian with a spoon and were always out of them. Same with my small bowls in the cabinet.
Our diaper days ended with such abruptness that I don't even know what to think.
The house is too quiet without all the musical toys that Vivian loved to play with constantly. She would actually punch on a musical toy and play with her non-musical wooden beads. It was hilarious--she was a smart little cookie. I won't admit to how many 40-packs of AA's I've bought at Sam's.
Seeing Vivian's baby swing on our swingset floating around in the several windy days we've had lately about drove me to insanity, and I had to take it down. She loved to swing and we did that often, sometimes even as a distraction if she was upset. Most of the time she loved to swing for fun.
Here's one Ken and I both hate...it doesn't matter whether we take the car or the van now. We fit in either, and we tend to take the car. Gosh, we were even starting to contemplate a vehicle to seat more children as we were hoping to add to our family next year.
Our kitchen table feels empty, Vivian's bedroom is empty, our wood floor is empty of her books and toys, our arms are empty...ugh.
A Month Without Our Baby Girl
In reality it has been one month since Vivian has died and gone to heaven. In my mind or my "world" not really any time has passed. I don't know, does the shock go away? I had killer headaches the first two days afterwards that 9 advil could not put a dent in. Numbness allowed me to get through the many funeral details and commitments. The choking grief has left me gasping for air, punching me in the gut again and again. A physical shakiness was my constant companion for the first week and now just shows up once in a while. Someone told me the headaches had to do with the adrenaline from how quickly I assessed the situation Tuesday morning with Vivian and made the harrowing drive to the ER.
It was obvious something was very wrong when Vivian suddenly started to cough up blood, and I had her to St. Lukes in 10 or 11 minutes flat. Yet it still wasn't fast enough. I try to think how she was already in heaven, happy and healthy, while I cradled her lifeless shell of a body and ran into the building. I could barely catch my breath, everything seemed a blur and strength from my arms and legs seemed to be literally being sucked into the tile floor after medical staff took over her care.
I have been asked a lot of questions over the last month and there is some confusion, it seems. Some parts I'd like to clarify. Vivian's death was a complete and utter shock. It was not on our radar at all. Vivian had an awesome cardiology appt on Sept 13th. She had put on weight and her O2 level notched up a bit. Vivian had had her heart surgery June 23rd and left the hospital July 18th. It was a grueling but fruitful road re-establishing her ability to eat enough calories to heal and grow. We had just reached the point of eating solid food and keeping them down. Anyway, on the afternoon of Sept. 14th Vivian became somewhat lethargic and then had a clear runny nose on Thursday, Sept. 15th. She appeared to be getting the same cold I caught on Sunday prior (same symptoms) and the rest of the family had minor colds too. I was concerned about Vivian Sunday evening with her lack of energy. Everything else about her seemed fine. We called the doctor Monday at 12:18pm and they got us in for a 1pm appt. All 5 of us went down together. The doctor listened to her heart, lungs, bowel and kidneys and all seemed to be okay. She consulted with our cardiologist too. I noted her abdomen seemed a little stiff and her eyelids might be a bit puffy. I also changed her diaper and little to no pee in it. She had some dinner at home and enjoyed her bath Daddy gave her, even pointing to tell Daddy to get the basket of toys and chose her favorite yellow duck to play with. She slept all night.
Twenty hours after the dr. appt. Vivian was gone. Just like that. From what we know so far it was NOT her heart directly.
Anyway, last night Isaac cried out at 2:30am. I flipped the covers back and leapt out of bed with such energy to go to him--it was so good to be needed. Multiple times a week for the 15.5 months we had with Vivian I was jumping out of bed to respond to her cries. And you know, I was perfectly fine with it, glad to do it, wishing I could have been her mama to comfort her for her first two years too. With Isaac last night, he had fallen out of bed. I scooped him up and took him to the potty and redeposited and snuggled him up. Only 5 minutes of my time required. Sigh.
Vivian was more complex. What and why was she waking up? Did she hurt? Was she scared, a bad dream? We couldn't know, she couldn't tell us. How it broke my heart, but we started a routine. She did not like to be rocked, so we strolled around the darkened house listening to classical music and sipped water. Eventually, we morphed that into going downstairs to the basement and watching a Baby Einstein movie. She liked that and so did I because she would relax across my lap. I could hold her hand and kiss her cheek or temple and breathe in the scent of her hair. My sweet little baby girl! The last time we did that together was in that last week, maybe even Sunday night, and her little hand squeezed my thumb. I felt like she said 'I love you' in that gesture. I cherished that time together as much as I liked getting a full night's rest.
Oh how I miss Vivian so intensely much! I will keep writing here because it helps to share my broken heart. You know, I have wanted to adopt children since I was 9 or 10 years old. We picked out Vivian's name 10 years ago. We waited for her for 4.5 years. We loved and cherished her and she brought us immense joy and laughter for 15.5 months. We will miss her for the rest of our lives.
The only thought that terrifies me is that during our adoption process we could have said no. We could have passed on her because she was delayed in her development. I thank God for the gift of time we had with Vivian. It was entirely too short, yes. But for the priviledge and gift of loving and caring for Vivian, we will carry our broken hearts as a badge of honor the rest of our lives.
I hope Vivian does her happy dance every day in Jesus' lap.
Love,
Keri
It was obvious something was very wrong when Vivian suddenly started to cough up blood, and I had her to St. Lukes in 10 or 11 minutes flat. Yet it still wasn't fast enough. I try to think how she was already in heaven, happy and healthy, while I cradled her lifeless shell of a body and ran into the building. I could barely catch my breath, everything seemed a blur and strength from my arms and legs seemed to be literally being sucked into the tile floor after medical staff took over her care.
I have been asked a lot of questions over the last month and there is some confusion, it seems. Some parts I'd like to clarify. Vivian's death was a complete and utter shock. It was not on our radar at all. Vivian had an awesome cardiology appt on Sept 13th. She had put on weight and her O2 level notched up a bit. Vivian had had her heart surgery June 23rd and left the hospital July 18th. It was a grueling but fruitful road re-establishing her ability to eat enough calories to heal and grow. We had just reached the point of eating solid food and keeping them down. Anyway, on the afternoon of Sept. 14th Vivian became somewhat lethargic and then had a clear runny nose on Thursday, Sept. 15th. She appeared to be getting the same cold I caught on Sunday prior (same symptoms) and the rest of the family had minor colds too. I was concerned about Vivian Sunday evening with her lack of energy. Everything else about her seemed fine. We called the doctor Monday at 12:18pm and they got us in for a 1pm appt. All 5 of us went down together. The doctor listened to her heart, lungs, bowel and kidneys and all seemed to be okay. She consulted with our cardiologist too. I noted her abdomen seemed a little stiff and her eyelids might be a bit puffy. I also changed her diaper and little to no pee in it. She had some dinner at home and enjoyed her bath Daddy gave her, even pointing to tell Daddy to get the basket of toys and chose her favorite yellow duck to play with. She slept all night.
Twenty hours after the dr. appt. Vivian was gone. Just like that. From what we know so far it was NOT her heart directly.
Anyway, last night Isaac cried out at 2:30am. I flipped the covers back and leapt out of bed with such energy to go to him--it was so good to be needed. Multiple times a week for the 15.5 months we had with Vivian I was jumping out of bed to respond to her cries. And you know, I was perfectly fine with it, glad to do it, wishing I could have been her mama to comfort her for her first two years too. With Isaac last night, he had fallen out of bed. I scooped him up and took him to the potty and redeposited and snuggled him up. Only 5 minutes of my time required. Sigh.
Vivian was more complex. What and why was she waking up? Did she hurt? Was she scared, a bad dream? We couldn't know, she couldn't tell us. How it broke my heart, but we started a routine. She did not like to be rocked, so we strolled around the darkened house listening to classical music and sipped water. Eventually, we morphed that into going downstairs to the basement and watching a Baby Einstein movie. She liked that and so did I because she would relax across my lap. I could hold her hand and kiss her cheek or temple and breathe in the scent of her hair. My sweet little baby girl! The last time we did that together was in that last week, maybe even Sunday night, and her little hand squeezed my thumb. I felt like she said 'I love you' in that gesture. I cherished that time together as much as I liked getting a full night's rest.
Oh how I miss Vivian so intensely much! I will keep writing here because it helps to share my broken heart. You know, I have wanted to adopt children since I was 9 or 10 years old. We picked out Vivian's name 10 years ago. We waited for her for 4.5 years. We loved and cherished her and she brought us immense joy and laughter for 15.5 months. We will miss her for the rest of our lives.
The only thought that terrifies me is that during our adoption process we could have said no. We could have passed on her because she was delayed in her development. I thank God for the gift of time we had with Vivian. It was entirely too short, yes. But for the priviledge and gift of loving and caring for Vivian, we will carry our broken hearts as a badge of honor the rest of our lives.
I hope Vivian does her happy dance every day in Jesus' lap.
Love,
Keri
Thursday, September 22, 2011
Services for Vivian
We are so moved by all the prayers we have received. I guess we had no idea how many loving and thoughtful folks out there are reaching out to us and lifting us up.
I think it is what has carried us through the day making the hardest decisions we have ever made.
Here are the details for services for Vivian for those who would like to know:
Visitation at Cedar Memorial on 1st Ave on Sunday, Sept. 25th from 2 to 5pm.
Church Service at New Covenant Bible Church in Robins on Center Point Road on Monday, Sept. 26th at 11am.
Meal follows at noon to 2pm.
Following that will be a private family burial.
Obituary will be in the Friday paper.
I think it is what has carried us through the day making the hardest decisions we have ever made.
Here are the details for services for Vivian for those who would like to know:
Visitation at Cedar Memorial on 1st Ave on Sunday, Sept. 25th from 2 to 5pm.
Church Service at New Covenant Bible Church in Robins on Center Point Road on Monday, Sept. 26th at 11am.
Meal follows at noon to 2pm.
Following that will be a private family burial.
Obituary will be in the Friday paper.
Love,
Keri and Ken
Wednesday, September 21, 2011
Our Precious Vivian
Our hearts are desperately heavy and broken. Our beautiful, precious daughter died suddenly yesterday morning at St. Lukes in the ER. They tried for 45 minutes to bring her back, and there was just nothing. She had been lethargic and had a little bit of runny nose. She checked out fine at the cardiologist on 9/13, although she had gained 15 oz in two weeks. Looking back, I think that was the start of this unhappy path. Right after that she was tired a lot--we attributed it to the cold. I too had a cold and was quite tired. We took her to the pediatrician on 9/19. Again no serious warning bells and checked out alright. Just a little swelling in her face and abdomen. Vivian is so tiny that a little swelling can actually disguise itself as "healthy." She enjoyed her bath daddy gave her and slept through the night. She babbled to daddy the next morning until he left to take Isaac to preschool. I gave her a sippy cup of water while she sat on the couch watching PBS kids and fixed her oatmeal and carried it to the table. Then I heard her cough, ran over, saw some blood and she passed in and out of consciousness in my arms. In a microsecond I thought we could get to the ER faster than an ambulance could get out to us. I grabbed Jaret and we left. Vivian was deteriorating as we were getting there. Her breathing so labored....she took her last breath and fell forward...I saw her in my rearview mirror as I waited for one car to pass and turned into the St. Lukes ER. I remember popping a curb, blaring the horn, and running in with her as I yelled to someone to be with Jaret. I yelled her heart condition and hep B carrier and recent surgery. They tried so hard for 45 minutes and could not get heart activity.
We are totally in shock, denial, devastated, you name it. We had the boys there to say goodbye, and we held our baby for 5 hours before we could summon the strength to leave. Ken's folks took the boys to their house earlier. Ken and I followed each other home in our vehicles. We just unpacked everything we had packed on our vacation which we were planning to leave at noon. The company graciously returned our money.
We'll stay home from our trip, but Vivian took the best trip ever...home to Jesus in heaven.
Now we know she is healed fully and can finally be the happy skipping toddler. I hope she found and met her Grandma Donna and Great Grandma Eleanor (my mom and her mom).
Love,
Keri and Ken
We are totally in shock, denial, devastated, you name it. We had the boys there to say goodbye, and we held our baby for 5 hours before we could summon the strength to leave. Ken's folks took the boys to their house earlier. Ken and I followed each other home in our vehicles. We just unpacked everything we had packed on our vacation which we were planning to leave at noon. The company graciously returned our money.
We'll stay home from our trip, but Vivian took the best trip ever...home to Jesus in heaven.
Now we know she is healed fully and can finally be the happy skipping toddler. I hope she found and met her Grandma Donna and Great Grandma Eleanor (my mom and her mom).
Love,
Keri and Ken
Tuesday, August 2, 2011
August Already
Hello Everyone!
Sorry to be offline. I was right that it would be harder to be consistent at home. The first week home was rough. Within an hour of home arrival, we had the home health nurse here and all of our medical equipment which really just consists of a feeding pump, an oximeter, an IV pole, and then a couple bags of medical stuff like tubing and feeding bags for Vivian. The doctors had Vivian set up to receive 600mL of Pediasure in 10 hours overnight. That was too much, and Vivian would throw up if not just spit up about every morning. So, we had mounds of laundry plus the ever present pressure of "trying to get calories into her during the day." By Friday morning (July 22nd) we had something of a routine down and had expanded to 12 hours and slowed the rate from 60mL down to 50mL/hour. However, I completely freaked out when I checked on Vivian to find she had thrown up in her bed sometime between 6:30 and 9:30am and the tube and come up and out her mouth. Yes...now it was in the nose and out the mouth. Completely disgusting, and I had to deal with it! I called a nurse to come over IMMEDIATELY and help me. Long story short, she came, and we got Vivian bathed and fixed up. I put the tube back in with the nurse holding Vivian. No, it's not any fun, but I see why they trained us at the hospital now.
So....when Saturday morning came we fed Vivian some breakfast and had a repeat performance. We left the tube out during the day and replaced it that night. It took three tries and was very stressful. We did the same thing on Sunday night. Even though I was successful at getting the tube into Vivian, I dissolved into tears and dreaded Monday and the weeks ahead.
Fast forward to this last weekend. The tube stayed in place all week until Sunday night. At this point I've met with the cardiologist who is following Vivian closely. He gave me "the blessing" to leave the tube out and just keep working with Vivian on eating enough calories during the day. This last weekend Vivian's appetite has started to pick up, so that helps some.
We spend A LOT of time feeding Vivian because it's a tricky balancing act. We basically give her snacks about every two hours or so. She will eat 10 to 15 bites at the most sometimes, and everything needs to be pureed. The biggest goal is for her to continue to get sufficient calories for healing. We can't feed her too much or let her drink too much at once or she will throw up. She has an "angry gut" due to all the strong drugs she had while in the hospital. She struggles with some reflux due to all the Pediasure she is getting. In general she is not super coordinated in her swallowing capabilities which causes her to cough which can turn into a gag reflex and you know what comes next. Plus, she struggles with some textures of foods.
If we can get Vivian's gut to calm down and not cause her to throw up, I can so deal with everything else. Tonight I went to BBB and bought a Magic Bullet blender with the intention to puree whatever we are eating and give to Vivian. I've been limping along on babyfood, oatmeal and pudding so far, but she could use more nutrients.
Today is Tuesday, August 2nd (for a little while longer). To bring you up to date, Vivian's last night feeding was Saturday night. The tube came out at dinnertime Sunday night (by this point no panic calls to a nurse--we take care of it ourselves). Monday morning I took Vivian to physical therapy for first time in 6 weeks. This morning I took Vivian to occupational therapy for a feeding evaluation. Tomorrow Vivian has a cardiology appt. again.
Yes, we have an intense schedule with Vivian, and it will get easier as the weeks go by. The boys are doing well though. I have awesome friends who have helped me out so much I'll never be able to repay them. The boys are finishing up swim lessons this week. I am doing some thinking an mental planning for Jaret's school year, and I have forms to get done for Isaac. He is going to a new preschool called Holloway House, and he is pretty excited about it much to my relief. He was so ornery last year.
Well, I better head to bed! Love to you all--thanks for listening. Will try to get some photos up soon.
Sorry to be offline. I was right that it would be harder to be consistent at home. The first week home was rough. Within an hour of home arrival, we had the home health nurse here and all of our medical equipment which really just consists of a feeding pump, an oximeter, an IV pole, and then a couple bags of medical stuff like tubing and feeding bags for Vivian. The doctors had Vivian set up to receive 600mL of Pediasure in 10 hours overnight. That was too much, and Vivian would throw up if not just spit up about every morning. So, we had mounds of laundry plus the ever present pressure of "trying to get calories into her during the day." By Friday morning (July 22nd) we had something of a routine down and had expanded to 12 hours and slowed the rate from 60mL down to 50mL/hour. However, I completely freaked out when I checked on Vivian to find she had thrown up in her bed sometime between 6:30 and 9:30am and the tube and come up and out her mouth. Yes...now it was in the nose and out the mouth. Completely disgusting, and I had to deal with it! I called a nurse to come over IMMEDIATELY and help me. Long story short, she came, and we got Vivian bathed and fixed up. I put the tube back in with the nurse holding Vivian. No, it's not any fun, but I see why they trained us at the hospital now.
So....when Saturday morning came we fed Vivian some breakfast and had a repeat performance. We left the tube out during the day and replaced it that night. It took three tries and was very stressful. We did the same thing on Sunday night. Even though I was successful at getting the tube into Vivian, I dissolved into tears and dreaded Monday and the weeks ahead.
Fast forward to this last weekend. The tube stayed in place all week until Sunday night. At this point I've met with the cardiologist who is following Vivian closely. He gave me "the blessing" to leave the tube out and just keep working with Vivian on eating enough calories during the day. This last weekend Vivian's appetite has started to pick up, so that helps some.
We spend A LOT of time feeding Vivian because it's a tricky balancing act. We basically give her snacks about every two hours or so. She will eat 10 to 15 bites at the most sometimes, and everything needs to be pureed. The biggest goal is for her to continue to get sufficient calories for healing. We can't feed her too much or let her drink too much at once or she will throw up. She has an "angry gut" due to all the strong drugs she had while in the hospital. She struggles with some reflux due to all the Pediasure she is getting. In general she is not super coordinated in her swallowing capabilities which causes her to cough which can turn into a gag reflex and you know what comes next. Plus, she struggles with some textures of foods.
If we can get Vivian's gut to calm down and not cause her to throw up, I can so deal with everything else. Tonight I went to BBB and bought a Magic Bullet blender with the intention to puree whatever we are eating and give to Vivian. I've been limping along on babyfood, oatmeal and pudding so far, but she could use more nutrients.
Today is Tuesday, August 2nd (for a little while longer). To bring you up to date, Vivian's last night feeding was Saturday night. The tube came out at dinnertime Sunday night (by this point no panic calls to a nurse--we take care of it ourselves). Monday morning I took Vivian to physical therapy for first time in 6 weeks. This morning I took Vivian to occupational therapy for a feeding evaluation. Tomorrow Vivian has a cardiology appt. again.
Yes, we have an intense schedule with Vivian, and it will get easier as the weeks go by. The boys are doing well though. I have awesome friends who have helped me out so much I'll never be able to repay them. The boys are finishing up swim lessons this week. I am doing some thinking an mental planning for Jaret's school year, and I have forms to get done for Isaac. He is going to a new preschool called Holloway House, and he is pretty excited about it much to my relief. He was so ornery last year.
Well, I better head to bed! Love to you all--thanks for listening. Will try to get some photos up soon.
Tuesday, July 19, 2011
Home Sweet Home
We are home at last. We left the hospital yesterday at 3pm. I'm not relaxed yet because we are trying to get the hang of the home equipment we need to use and to Vivian's schedule. It's like the hospital where I stay by Vivian's bed until she falls asleep because otherwise she moves around and tangles herself in the wires and tubes. And, we are working on various appts for her too. At the same time I am encouraging her to eat food by mouth during the day so we can transition off the feeding tube! Small steps are the key. She is drinking her Pediasure by mouth and took almost a half jar of BF(babyfood) sweet potatoes today so far. She is more willing later in the day to eat.
Aside from Vivian I am trying to unpack the many hospital bags (where did they all come from?), reacquaint myself with our home and what we have and what I need to do or shop for! It was nice to sit next to Ken in the evening for a change! And, our towels seem extra fluffy after hospital ware!
Thank you for your continued prayers for Vivian's interest and ability to eat by mouth to perk up!
Love, Keri
Aside from Vivian I am trying to unpack the many hospital bags (where did they all come from?), reacquaint myself with our home and what we have and what I need to do or shop for! It was nice to sit next to Ken in the evening for a change! And, our towels seem extra fluffy after hospital ware!
Thank you for your continued prayers for Vivian's interest and ability to eat by mouth to perk up!
Love, Keri
Sunday, July 17, 2011
Tomorrow, Tomorrow..You're Only A Day Away!
Hello! Sorry I haven't posted photos for a couple days. They would look about the same though. Vivian loves to get wagon rides and go for walks in her walker. We also carry her around, like to the game room where the boys are playing far too much wii.
She is eating a little bit of pudding or some from jars of baby food they stock at the hospital. She drinks her vanilla flavored Pediasure and takes sips of water. We tried one tiny nibble of pancake this morning and up it came with some formula. So, she is struggling right now with food that has a structure to it or is a finite piece.
If we are discharged tomorrow, it will be later in the day. So, this may be my last post from the hospital, or next to last post before I return the laptop to the hospital. Vivian will need a final heart echo done and a final chest xray. We will meet with a dietician, and a psychologist who specializes in feeding issues. We meet with our hospital social worker who is setting us up with home health. Our hospital physical therapist will be by to see Vivian. And maybe the music therapist will be by...I'll request her too. These other things, while numerous, can be brief. The doctors round between 9 and 10am.
I also just realized Ken has an appt in the late afternoon which means he would be down here at dinner time. We would then get home late..just in time to settle Vivian into bed and get the night time feeding started. We may have to see about rescheduling. That might be a lot to do upon getting home! Well, I'm off to bed. Love, Keri
She is eating a little bit of pudding or some from jars of baby food they stock at the hospital. She drinks her vanilla flavored Pediasure and takes sips of water. We tried one tiny nibble of pancake this morning and up it came with some formula. So, she is struggling right now with food that has a structure to it or is a finite piece.
If we are discharged tomorrow, it will be later in the day. So, this may be my last post from the hospital, or next to last post before I return the laptop to the hospital. Vivian will need a final heart echo done and a final chest xray. We will meet with a dietician, and a psychologist who specializes in feeding issues. We meet with our hospital social worker who is setting us up with home health. Our hospital physical therapist will be by to see Vivian. And maybe the music therapist will be by...I'll request her too. These other things, while numerous, can be brief. The doctors round between 9 and 10am.
I also just realized Ken has an appt in the late afternoon which means he would be down here at dinner time. We would then get home late..just in time to settle Vivian into bed and get the night time feeding started. We may have to see about rescheduling. That might be a lot to do upon getting home! Well, I'm off to bed. Love, Keri
Saturday, July 16, 2011
NG Tube Certified
Just a quick post as I am pretty tired. Today was a better day and looking up. Ken and I each performed the NG tube insertion into Vivian this morning. It went well...better than yesterday's experience. After that my stress level has settled down. I can tell because I am now really looking forward to getting home to familiarity. Vivian did great today. She was willing to eat some applesauce and some pudding too, and she did not throw up today. Whew.
We are biding our time waiting for the weekend to end, so we can get ready for discharge. We are going to ask for discharge on Monday. The only thing, I think, that would hold us back is if we cannot get our home equipment for Vivian's feeding on Monday night. Or, the doctors might want another day of us feeding Vivian here to get a feel for her current eating status, like if it is ramping up or not. She will be done with her taper medications on Sunday at midnight. She is getting so little now it's kind of funny. They bring in a syringe that literally has one drop in it.
It will be interesting to get used to this schedule for nightly feedings which are currently set to 12 hours long. She won't be in bed that whole time, I don't think. Well, I better crawl into bed now. Love, Keri
We are biding our time waiting for the weekend to end, so we can get ready for discharge. We are going to ask for discharge on Monday. The only thing, I think, that would hold us back is if we cannot get our home equipment for Vivian's feeding on Monday night. Or, the doctors might want another day of us feeding Vivian here to get a feel for her current eating status, like if it is ramping up or not. She will be done with her taper medications on Sunday at midnight. She is getting so little now it's kind of funny. They bring in a syringe that literally has one drop in it.
It will be interesting to get used to this schedule for nightly feedings which are currently set to 12 hours long. She won't be in bed that whole time, I don't think. Well, I better crawl into bed now. Love, Keri
Friday, July 15, 2011
Irony and Ornery, I S'pose
I didn't expect the end of our hospital stay to be as stressful as this. I don't want to speak for Ken, but I did not have a clue that feeding would be such a big issue. Oh, man. Vivian smiles and turns her head away. She won't hardly accept her favorites: bananas or vanilla pudding. My entire mission the last three days has been to order whatever foods off the hospital menu and try giving them to Vivian. She took 10 sliver-size bites of things two days ago. Yesterday less than that but did start to drink Pediasure out of her sippy cup. Today not much luck either. I took her for a wagon ride outside on the hospital campus. We sat on a park bench and watched people, traffic and nature. She was so distracted she willing accepted bites of baby food applesauce. I was so excited thinking I could report she ate a jar (50 calories). As we were sitting there she suddenly burped and then just threw it all up. I was so surprised and disappointed. If only...if only... Did I push too much? She willingly accepted each bite. Push the calories vs. try not to have her throw up...what a struggle.
Anyway, I was pretty dejected walking her back up to our floor to report it to our nurse. My mood, I'm embarrassed to say, remained sour throughout the evening. Our fun-filled evening included watching the nurse put the new ng tube into Vivian's nose and stomach. Oh the joy watching our daughter turn red, purple, cry, gag, and proceed to throw up the rest of the calories I worked to get into her today through the Pediasure. And, just think, I get to look forward to when my turn comes up to do the same thing. I don't doubt I can do it. When all is ready it only takes a few seconds to get the tube in, everything else takes longer. It's just the detail that it's MY child. I am the same person that runs to my child in distress to comfort whoever needs it. Wish I could be excused due to conflict of interest.
Interestingly, at midnight last night I didn't mind sharing my opinion with the nurse about taking several tries to get blood pressure on Vivian. It takes several tries to get blood pressure on Vivian...period. It's tricky. The nurses get two to three tries before Vivian gets really ticked off, and then game over because it won't be accurate after that. I woke up to Vivian crying and quite upset while the nurse kept trying. I told her to quit it and get a new machine. She did quit and leave at least. Funny thing THIS evening, a nurse came in to use the blood pressure cuff and inadvertantly discovered the cuff was not the right one to be used with that cord or machine. Well, that was validation.
Tonight after Ken and the boys went down to their room to sleep, I heard a whisper of Vivian's voice for the first time. Oh, yes, believe it. We are still waiting for Vivian's voice to return. We are also waiting for a very huge and ugly bruise on her arm to heal that has been there since surgery. Like every medical staff person asks or remarks on that from day 1, and that is the one thing that about drives me crazy! It's obviously a failed attempt at an arterial line or IV and yet people keep asking us. It wasn't there when we went into the OR but it was there when she came back.
Back to the ng tube stuff. We will take home an oximeter machine too for Vivian to wear nightly. This will set off an alarm in case Vivian pulls the tube out of her tummy and it stays in her throat causing her to aspirate. Hmmm...will I ever sleep again? Goodness. Past experience from others says that tons of kids will try and pull the tube out in their sleep. Actually, Vivian has been very good about this in the hospital...maybe we are catching a break here. If she leaves it alone, we will only have to torture her with this once a week or less.
This point in time is probably the hardest part. Hopefully, it will get easier and less scary. I know in the big picture it is the best for Vivian to get her continuous calories to heal and grow. I hope that overall she will start feeling better than before surgery. And, I hope she will not develop further oral aversion by having the negative stimulus of a tube in her throat all the time. I will try to be more positive in a future post. Love me anyway, Keri
P.S. Yes, the previous photos I have posted look super of Vivian's recovery but don't portray the struggle of eating. Ironic, isn't it?
Anyway, I was pretty dejected walking her back up to our floor to report it to our nurse. My mood, I'm embarrassed to say, remained sour throughout the evening. Our fun-filled evening included watching the nurse put the new ng tube into Vivian's nose and stomach. Oh the joy watching our daughter turn red, purple, cry, gag, and proceed to throw up the rest of the calories I worked to get into her today through the Pediasure. And, just think, I get to look forward to when my turn comes up to do the same thing. I don't doubt I can do it. When all is ready it only takes a few seconds to get the tube in, everything else takes longer. It's just the detail that it's MY child. I am the same person that runs to my child in distress to comfort whoever needs it. Wish I could be excused due to conflict of interest.
Interestingly, at midnight last night I didn't mind sharing my opinion with the nurse about taking several tries to get blood pressure on Vivian. It takes several tries to get blood pressure on Vivian...period. It's tricky. The nurses get two to three tries before Vivian gets really ticked off, and then game over because it won't be accurate after that. I woke up to Vivian crying and quite upset while the nurse kept trying. I told her to quit it and get a new machine. She did quit and leave at least. Funny thing THIS evening, a nurse came in to use the blood pressure cuff and inadvertantly discovered the cuff was not the right one to be used with that cord or machine. Well, that was validation.
Tonight after Ken and the boys went down to their room to sleep, I heard a whisper of Vivian's voice for the first time. Oh, yes, believe it. We are still waiting for Vivian's voice to return. We are also waiting for a very huge and ugly bruise on her arm to heal that has been there since surgery. Like every medical staff person asks or remarks on that from day 1, and that is the one thing that about drives me crazy! It's obviously a failed attempt at an arterial line or IV and yet people keep asking us. It wasn't there when we went into the OR but it was there when she came back.
Back to the ng tube stuff. We will take home an oximeter machine too for Vivian to wear nightly. This will set off an alarm in case Vivian pulls the tube out of her tummy and it stays in her throat causing her to aspirate. Hmmm...will I ever sleep again? Goodness. Past experience from others says that tons of kids will try and pull the tube out in their sleep. Actually, Vivian has been very good about this in the hospital...maybe we are catching a break here. If she leaves it alone, we will only have to torture her with this once a week or less.
This point in time is probably the hardest part. Hopefully, it will get easier and less scary. I know in the big picture it is the best for Vivian to get her continuous calories to heal and grow. I hope that overall she will start feeling better than before surgery. And, I hope she will not develop further oral aversion by having the negative stimulus of a tube in her throat all the time. I will try to be more positive in a future post. Love me anyway, Keri
P.S. Yes, the previous photos I have posted look super of Vivian's recovery but don't portray the struggle of eating. Ironic, isn't it?
Thursday, July 14, 2011
Three Weeks Today and A Learning Curve
Thursday, July 14, 2011
I haven't mentioned this on the blog yet, but we will have to bring Vivian home from the hospital with an NG tube for feeding. It's very important for Vivian to get a certain amount of calories a day for her surgical healing. She does not have any reserve to pull from either while she is recovering and not desiring food, so we can't afford to wait for her to decide she is hungry and will eat.
In the next few days Ken and I will train on how to insert the NG tube into Vivian. She can keep it in for a week before changing. Vivian will most likely need supplemental nightly feedings for the next 6 months or so. I think in the next month and a half, the doctors will evaluate her handling the trauma of the NG tube, and if she continues to have a strong aversion to food, then we can have a simple operation of putting in a G tube. (Just realized I should explain. The NG tube goes through nose down to tummy and can be taken in and out as needed. G tube is put in in operation for direct access to tummy and is removed through another operation).
Admittedly, I am overwhelmed by this and was in no way prepared for feeding issues. Especially since she did not have feeding issues coming into the surgery! The positive side to this is we have a way to get Vivian extra nutrients for growth and brain development and healing. It will actually lift a burden off our shoulders that we have been carrying since the day we were given Vivian. We have been trying to feed Vivian and have her gain weight, and we have succeeded to an extent. She has only gained weight under our care, but slowly. I wish I had known or sought out some of those tricks to ADD calories into her diet. At home now I will add Pediasure to her oatmeal and extra butter on potatoes, etc.
Our discharge forcast is for midnext week.
We would love prayers for us in this new transition and for Vivian to be comforted or at peace with this "not-so-fun" process she will have to repeatedly endure. Love, Keri
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I haven't mentioned this on the blog yet, but we will have to bring Vivian home from the hospital with an NG tube for feeding. It's very important for Vivian to get a certain amount of calories a day for her surgical healing. She does not have any reserve to pull from either while she is recovering and not desiring food, so we can't afford to wait for her to decide she is hungry and will eat.
In the next few days Ken and I will train on how to insert the NG tube into Vivian. She can keep it in for a week before changing. Vivian will most likely need supplemental nightly feedings for the next 6 months or so. I think in the next month and a half, the doctors will evaluate her handling the trauma of the NG tube, and if she continues to have a strong aversion to food, then we can have a simple operation of putting in a G tube. (Just realized I should explain. The NG tube goes through nose down to tummy and can be taken in and out as needed. G tube is put in in operation for direct access to tummy and is removed through another operation).
Admittedly, I am overwhelmed by this and was in no way prepared for feeding issues. Especially since she did not have feeding issues coming into the surgery! The positive side to this is we have a way to get Vivian extra nutrients for growth and brain development and healing. It will actually lift a burden off our shoulders that we have been carrying since the day we were given Vivian. We have been trying to feed Vivian and have her gain weight, and we have succeeded to an extent. She has only gained weight under our care, but slowly. I wish I had known or sought out some of those tricks to ADD calories into her diet. At home now I will add Pediasure to her oatmeal and extra butter on potatoes, etc.
Our discharge forcast is for midnext week.
We would love prayers for us in this new transition and for Vivian to be comforted or at peace with this "not-so-fun" process she will have to repeatedly endure. Love, Keri
Marathon Day
This post refers to Wednesday, July 13, 2011
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Vivian had a big day today. First her feedings have been changed from continuous to night time only. Brianna from PT came this morning and helped Vivian walk. We have Vivian's walker here, and she used that to walk 140 feet!!! (Yesterday she walked 6 feet). Vivian had three or four wagon rides today. We got permission to go outside, and we've been outside at the children's playground. Vivian walked around a little bit there with my support. Vivian also had a bath and shampoo. She took a two hour nap and a one hour nap.
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Now here's the thing. Her feeds were turned off at 9:45am, and our ongoing goal throughout the day has been to try and get Vivian to start eating. By the way, Ken was here at the hospital with me for the day. Together we tried to entice Vivian with food during different activities. She probably to about a dozen small bites of different things and several sips of water. It is a small succes in terms that she is not completely turning away food, but it is not nearly sufficient for her daily intake. More on this later. Love, Keri
Vivian had a big day today. First her feedings have been changed from continuous to night time only. Brianna from PT came this morning and helped Vivian walk. We have Vivian's walker here, and she used that to walk 140 feet!!! (Yesterday she walked 6 feet). Vivian had three or four wagon rides today. We got permission to go outside, and we've been outside at the children's playground. Vivian walked around a little bit there with my support. Vivian also had a bath and shampoo. She took a two hour nap and a one hour nap.
Tuesday, July 12, 2011
You Won't Believe Your Eyes...
Yes! Vivian got to stand up three times this morning with Brianna from physical therapy and take her first steps to the wagon for a wagon ride!! Vivian will work with Brianna daily until discharge. Afterwards Vivian accepted about 3 sips of water, 2 tiny pinches of apple bread, a tiny bite each of applesauce and chocolate pudding. She is just on a half liter of O2 at 21%. They have weaned one of her taper meds down again. I think the taper meds will continue through the 17th, but we aren't required to stay in the hospital for those. She needs to resume her eating and drinking though.
Vivian is excitedly pointing at the fish in the fish tank during her wagon ride! Love, Keri
Adjustments
Hello! We waited four hours after packing up and finally got transferred to the second floor at 2:30pm this afternoon. Vivian and I both took a nap this evening. She has finally tired out and gone to sleep at 12:15am. Doctor rounds are at 10am tomorrow, and I am anxious to hear Vivian's plan. We want to come home soon. I am tired already of entertaining her in bed connected to wires, and she is tired of being trapped in the bed all the day long. They decreased her two other drugs doses today, and she is tolerating it. I better close for now and head to bed. Love, Keri
P.S. Had to advocate for myself today. They had a crummy couch in the room. You feel like you are falling out of it whether it's couch or bed. I scoped out the empty room next door and saw it had the same type couch as I had in the ICU, so I requested a swap! Never thought I would pine for a particular hospital bed, but some things like this can make all the difference in the world! Goodnight!
P.S. Had to advocate for myself today. They had a crummy couch in the room. You feel like you are falling out of it whether it's couch or bed. I scoped out the empty room next door and saw it had the same type couch as I had in the ICU, so I requested a swap! Never thought I would pine for a particular hospital bed, but some things like this can make all the difference in the world! Goodnight!
Monday, July 11, 2011
Transfer Notice!
PICU rounds came by our room shortly ago, and we are going to be transferred to the second floor today! So is one of our "neighbors" who has been here the same amount of time we have. Will let you know where we are at when we get settled. I'm going to grab a shower now and then pack. Our stuff has "grown" since we have been here. Love, Keri
Less Tubes and Wires for Vivian!
A cardiac surgeon wa by this morning after their rounds and took out Vivian's remaining two chest tubes and her heart pacer wires. She just has canula oxygen, her feeding tube, and her PIC line left. Just wanted to post this quick because Vivian fell back asleep for a little nap right now. Love, Keri
Sunday, July 10, 2011
Awake and Active!
Vivian is still awake at 10:15pm as I start this post. She has been awake for just over 12 hours now today! She just got a small dose of morphine, so maybe she will settle in for the night. Vivian has been a very active girl today playing with her toys, turning pages in her books, pointing at the TV when her Baby Einstein movies are playing. She has sat in mommy's lap and daddy's lap. She has watched as Jaret blew bubbles and tried to pop some. She even tossed a little bean filled football with dad. Yes, her throw is about 18" in length. She kicks her legs, waves her arms and scoots around and claps. And, she spends considerable time trying to get the oxymeter off her big toe.
Really, I'm amazed to watch Vivian all day. Did I mention she is sitting by herself in bed and remaining upright without us supporting her? We did that several times, and she seemed to literally get stronger throughout the day. Our sweet friends Rob and Alissa even babysat Vivian this evening for us, so Ken and I and the boys could go down and grab some dinner! One would think that a child in a bed could not cause trouble but with as busy as Vivian has become, she really gets entangled in her wires and tubes and tries to pull things apart. Rob and Alissa even got to take Vivian for a wagon ride this afternoon with nurse assistance. It takes three people to manuveur all the accessories. (Thank you both for your company and help)!
Today I heard my first rumor from a doctor that we could potentially go to the regular peds floor tomorrow. Also, my day nurse today is guessing that Vivian could get her chest tubes out tomorrow. I don't hold them to these guesses, but it does tell me change is on the horizon. They have tapered her morphine down to 2 mg every 8 hours and probably tomorrow will start to taper the other two meds. I'm curious for cardiac and PICU rounds tomorrow morning since it's Monday -- as in the usual folks are back to check on us.
Oh, I wanted to mention that my posts may get more sporadic now with Vivian awake! It was easy to sit down about the same time each evening and post, but that freedom is going by the wayside. Well, in case you are wondering, Vivian has finally gone to sleep at 10:45pm! Love, Keri
Really, I'm amazed to watch Vivian all day. Did I mention she is sitting by herself in bed and remaining upright without us supporting her? We did that several times, and she seemed to literally get stronger throughout the day. Our sweet friends Rob and Alissa even babysat Vivian this evening for us, so Ken and I and the boys could go down and grab some dinner! One would think that a child in a bed could not cause trouble but with as busy as Vivian has become, she really gets entangled in her wires and tubes and tries to pull things apart. Rob and Alissa even got to take Vivian for a wagon ride this afternoon with nurse assistance. It takes three people to manuveur all the accessories. (Thank you both for your company and help)!
Today I heard my first rumor from a doctor that we could potentially go to the regular peds floor tomorrow. Also, my day nurse today is guessing that Vivian could get her chest tubes out tomorrow. I don't hold them to these guesses, but it does tell me change is on the horizon. They have tapered her morphine down to 2 mg every 8 hours and probably tomorrow will start to taper the other two meds. I'm curious for cardiac and PICU rounds tomorrow morning since it's Monday -- as in the usual folks are back to check on us.
Oh, I wanted to mention that my posts may get more sporadic now with Vivian awake! It was easy to sit down about the same time each evening and post, but that freedom is going by the wayside. Well, in case you are wondering, Vivian has finally gone to sleep at 10:45pm! Love, Keri
Saturday, July 9, 2011
A Little Stronger This Afternoon
I also wanted you all to see how Vivian is getting stronger day by day. In the wagon she could not lift her head. Now she is holding her head up a little better. Ken even allowed her to try sitting on her own for several seconds until she started to slump a little. We are getting Vivian into a sitting position several times a day. I can tell we are getting closer to exiting the ICU because a few days ago we started sharing a nurse with one other patient. So...I have to go find the nurse when we need something sometimes. And, really, there's just not a whole lot of work needed for Vivian. I requested a bath and shampoo for Vivian tonight, but that is on hold because the PICU is getting 5 admits at about the same time. It was somewhat slow when we were admitted, but it is crazy busy here now! I would also like to hold her, but I can't do it by myself because of all the tubes still. Let's pray that Monday will be the day the chest tubes can come out.
Love, Keri
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Love, Keri
Smiles!
Saturday, July 9, 2011
Make no mistake...that's a smile from Vivian!! Daddy was playing with Vivian. Of course, she also just had her drugs! We are starting to see our little girl's personality today. They are starting to taper her morphine by decreasing the frequency. So, we also see her a little shaky, itchy and cranky at times. A dose of Tylenol this evening is helping with that. The drainage from her chest tubes is down to 70.
Friday, July 8, 2011
Lean On Me
Hello Everyone,
Sorry I haven't posted anything til now. Vivian has been sleeping quite a bit of the day with periods of wakefulness. I have held her for about an hour and a half this morning and then for 3.5 hours this afternoon. She was awake from about 5 to 8pm tonight. I have read books to her, and we watch Baby Einstein movies. While lying down Vivian would reach over and press on her gloworm's tummy to make it sing. We got her sitting up straight different times so she would have some good coughs and keep her lungs open. Vivian even turned pages and touched the textured pictures in her book while leaning on Daddy's shoulder.
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Vivian is loving her Daddy, I think! Not much changed today regarding her meds, although tonight they are going to reduce the frequency of morphine but keep the same dose. Her chest tubes are not draining much out, and I am anxious tomorrow to hear what the doctors have to say about taking one or both tubes out. We're getting closer, but it still takes time. Love, Keri
P.S. We did get one special treat today of a big smile from Vivian when I started playing a hand clapping hand jive with her. It was brief but awesome!
Sorry I haven't posted anything til now. Vivian has been sleeping quite a bit of the day with periods of wakefulness. I have held her for about an hour and a half this morning and then for 3.5 hours this afternoon. She was awake from about 5 to 8pm tonight. I have read books to her, and we watch Baby Einstein movies. While lying down Vivian would reach over and press on her gloworm's tummy to make it sing. We got her sitting up straight different times so she would have some good coughs and keep her lungs open. Vivian even turned pages and touched the textured pictures in her book while leaning on Daddy's shoulder.
Vivian is loving her Daddy, I think! Not much changed today regarding her meds, although tonight they are going to reduce the frequency of morphine but keep the same dose. Her chest tubes are not draining much out, and I am anxious tomorrow to hear what the doctors have to say about taking one or both tubes out. We're getting closer, but it still takes time. Love, Keri
P.S. We did get one special treat today of a big smile from Vivian when I started playing a hand clapping hand jive with her. It was brief but awesome!
Thursday, July 7, 2011
Once Around the Block!!
6 Pillows, 5 Caring People, 4 Wagon Wheels, 3 Stops for Pictures, 2 Sweet Little Eyes looking All Around, and 1 Blanket! That's what it took for Vivian's first wagon ride around the ICU!! It was a great success. Jaret and Isaac helped with entertainment.
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We had Vivian sitting in an upright position today three different times with complete support also. She is very weak and cannot hold her head up as you can see. When we returned to the room from the ride, Daddy held Vivian upright and Mommy gave a few drops of water to Vivian to take by mouth and then one swallow. She is doing so wonderfully and will regain her strength soon, I am sure of it. We appreciate your prayers for Vivian's recovery. She has turned several corners over the last several days and is on a good path, and we patiently wait while her body continues to heal. Love, Keri
We had Vivian sitting in an upright position today three different times with complete support also. She is very weak and cannot hold her head up as you can see. When we returned to the room from the ride, Daddy held Vivian upright and Mommy gave a few drops of water to Vivian to take by mouth and then one swallow. She is doing so wonderfully and will regain her strength soon, I am sure of it. We appreciate your prayers for Vivian's recovery. She has turned several corners over the last several days and is on a good path, and we patiently wait while her body continues to heal. Love, Keri
It's Thursday Again
Vivian is sleeping nicely right now. Let's see, she's had a busy day so far. She did get her arterial line out this morning. And, surprise, her surgeon Dr. Davis stopped back at 2:30pm and took out her peritineum tube. Vivian got really mad at the Dr. and dropped her O2 sat to 42% briefly.
They are increasing her feeds throughout the day. Vivian also had another bath, and I held her for a little over an hour. We also had Vivian sitting up in bed with complete support from Mom. That is very good for her to get fluids out and expand her lungs.
She still has her two chest tubes in. I don't know what the units are, but in the 24 hour period leading up to midnight last night she had a total of 125 output. They would like to see a total output of less than 30 before removal. They plan to keep Vivian in the ICU while she has the tubes.
Ken and the boys are here, and we are going to have dinner together while Vivian sleeps. Love, Keri
They are increasing her feeds throughout the day. Vivian also had another bath, and I held her for a little over an hour. We also had Vivian sitting up in bed with complete support from Mom. That is very good for her to get fluids out and expand her lungs.
She still has her two chest tubes in. I don't know what the units are, but in the 24 hour period leading up to midnight last night she had a total of 125 output. They would like to see a total output of less than 30 before removal. They plan to keep Vivian in the ICU while she has the tubes.
Ken and the boys are here, and we are going to have dinner together while Vivian sleeps. Love, Keri
Wednesday, July 6, 2011
100 Minutes of Bliss
July 6, 2011 2:30pm to 4:20pm
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For almost 2 hours this afternoon Vivian slept in mommy's arms. What a nice treat! She is now back in bed resting. I asked our nurse and by her guesstimate we could go to the regular peds floor maybe on Friday. We'll see how it goes.
They stopped her feeds to her small intestine early this morning for two reasons. One was for the extubation. The other is because in Vivian's wiggling around the tube got pulled back into her tummy. So, it's not a TP tube anymore--now it's a second NG tube. They are going to start her feeds again slowly at something like 10cc per hour if she's ready this evening.
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Here is Vivian back in bed propped with pillows. Her right arm is covered with the arterial line accessories.
Tomorrow Vivian will get her arterial line out and hopefully the NG tube** that was used for suctioning and ulcer prevention. Thanks for the verses sent to me and for your continued prayers! Love, Keri
**5:25pm The doctors just walked by and told Stephanie our nurse to take out the NG tube now, so that's done. The white tape on her nose is gone now. Also, they turned off the Milinone (sp?). That was a medication that lightened the load on her heart. Wow, we really are losing meds and tubes today!
For almost 2 hours this afternoon Vivian slept in mommy's arms. What a nice treat! She is now back in bed resting. I asked our nurse and by her guesstimate we could go to the regular peds floor maybe on Friday. We'll see how it goes.
They stopped her feeds to her small intestine early this morning for two reasons. One was for the extubation. The other is because in Vivian's wiggling around the tube got pulled back into her tummy. So, it's not a TP tube anymore--now it's a second NG tube. They are going to start her feeds again slowly at something like 10cc per hour if she's ready this evening.
Here is Vivian back in bed propped with pillows. Her right arm is covered with the arterial line accessories.
Tomorrow Vivian will get her arterial line out and hopefully the NG tube** that was used for suctioning and ulcer prevention. Thanks for the verses sent to me and for your continued prayers! Love, Keri
**5:25pm The doctors just walked by and told Stephanie our nurse to take out the NG tube now, so that's done. The white tape on her nose is gone now. Also, they turned off the Milinone (sp?). That was a medication that lightened the load on her heart. Wow, we really are losing meds and tubes today!
Extubated And Resting!!!!
Vivian got her breathing tube out at 10:45am and did quite a bit of coughing which is good. Her job is to move yucky stuff out of her lungs. And, they turned off her morphine drip. The remaining goals today are for Vivian to rest comfortably, and also later on this afternoon to get her up out of bed once and into a chair.
I will post more later as I learn anything about her medicine tapers or anything else. Love, Keri
I will post more later as I learn anything about her medicine tapers or anything else. Love, Keri
Tuesday, July 5, 2011
In the Rumor Mill Again
July 5, 2011 Vivian napping today
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Vivian had a good night, and there was talk in this morning's rounds about extubating her tomorrow. We'll see if everything holds. Her temperature has come down to about 37.7 degrees C. They are going to give her steroids to help the swelling go down in her throat since she has had the breathing vent for so long.
She has had two pressure trials today to test her breathing and she has done well. Vivian is showing by different indicators that she will handle being off the breathing vent and going to a nose canula with oxygen. We learned that a child can be breathing adequately on the vent but not do well if off due to heavy meds, etc. So, that's what they are preparing and testing Vivian to make sure she will pick up the work of breathing on her own and not be "lazy" or tired. I'm a little nervous, but the staff said she is doing well.
That's all for now.
She has had two pressure trials today to test her breathing and she has done well. Vivian is showing by different indicators that she will handle being off the breathing vent and going to a nose canula with oxygen. We learned that a child can be breathing adequately on the vent but not do well if off due to heavy meds, etc. So, that's what they are preparing and testing Vivian to make sure she will pick up the work of breathing on her own and not be "lazy" or tired. I'm a little nervous, but the staff said she is doing well.
That's all for now.
Monday, July 4, 2011
Resting, Waiting, Praying...
Hopefully, the IV morphine will get turned off tonight sometime. Vivian is resting nicely right now. We went out for dinner at Appleby's this evening and when we returned, the isolation was discontinued. She tested negative for viral, but her fever is still a mystery. I am so hoping she will turn a good corner and recover from this starting with a good night. Anyway, we also learned they do need to decrease her oral meds too in order to get off the vent. We are still moving in that direction. It's nice she got the Foley (urine cath) out today at noon. We anticipate each tube removal because it certainly does not happen quickly!
Tonight we went up to the top floor rooftop patio and watched the fireworks. They were nice but too far away to hear the crackles or booms. Tonight is also the last night for Ken and the boys. They will return home tomorrow sometime. Ken needs to get into work Wed, Thurs, and Fri. And, it looks that we will be in the PICU through next weekend. Lord, give me strength for each day as I write this. Right now it seems like a long time from now.
Our two PICU "neighbors" have their kids off the vent now, and they are holding their little ones. We are thrilled for them. And, I am confident Vivian is on God's timing, and I keep praying she will conquer this obstacle and continue to heal. It's hard though that I'm not tall enough to lean over and give Vivian a kiss on her forehead or cheek. I kiss her leg or foot to say goodnight. Speaking of, I am exhausted and will turn in for the night. Love, Keri
P.S. If any of you have any favorite bible verses/passages that you go to for strength, patience, comfort, please email them to me at cmc-keri@mchsi.com. I would love to read through them and be thinking of them through our days here.
Tonight we went up to the top floor rooftop patio and watched the fireworks. They were nice but too far away to hear the crackles or booms. Tonight is also the last night for Ken and the boys. They will return home tomorrow sometime. Ken needs to get into work Wed, Thurs, and Fri. And, it looks that we will be in the PICU through next weekend. Lord, give me strength for each day as I write this. Right now it seems like a long time from now.
Our two PICU "neighbors" have their kids off the vent now, and they are holding their little ones. We are thrilled for them. And, I am confident Vivian is on God's timing, and I keep praying she will conquer this obstacle and continue to heal. It's hard though that I'm not tall enough to lean over and give Vivian a kiss on her forehead or cheek. I kiss her leg or foot to say goodnight. Speaking of, I am exhausted and will turn in for the night. Love, Keri
P.S. If any of you have any favorite bible verses/passages that you go to for strength, patience, comfort, please email them to me at cmc-keri@mchsi.com. I would love to read through them and be thinking of them through our days here.
One Step Back--Temporary Isolation
Let's see...two of the IV sedation meds Dex and Versed are getting turned off now, and the IV morphine is going from 20 to 10. The oxygen they have been giving her..we were at 30 but had to go back up to 60 and now she is down to 40%. They are taking out the urine catheter today and will just weigh her diapers. One less place for an infection source.
Vivian has had a temperature over the last few days, and the doctors are trying to find the source of that. Cultures have been drawn and are checked over multiple days to see if there is anything growing. Vivian's CO2 has been up higher than desired too. It's down from 60 to 57% now. The preferred range is 35 to 50%. They also do other preventative measures like everyone gowning up before coming into Vivian's room, and our nurse is changing all the drips for precaution.
I guess a lot of times it is two steps forward and one step back. This is a one step back day in terms of getting her breathing vent off. It's not going to be considered for today or tomorrow now. Ugh, how frustrating. It is suspected that she could have a little respirator-induced pneumonia or a virus which is not uncommon for being on the vent for this long. But, all her readings otherwise are doing well. She is urinating and having bowel movements. Her O2 sats are at 80%.
She spent a lot of time awake and shifting around through the night. Then she would drift off for a bit and pop awake again. She kept the night nurse busy coming in to scoot her up in bed, and it wouldn't be long before Vivian was scooting around again. She's actually trying to turn over so she can get up--I can tell by her movements. All the moving around is a good thing though.
What a long haul for Vivian this has been. Please keep the prayers coming. Thanks! Love, Keri
Vivian has had a temperature over the last few days, and the doctors are trying to find the source of that. Cultures have been drawn and are checked over multiple days to see if there is anything growing. Vivian's CO2 has been up higher than desired too. It's down from 60 to 57% now. The preferred range is 35 to 50%. They also do other preventative measures like everyone gowning up before coming into Vivian's room, and our nurse is changing all the drips for precaution.
I guess a lot of times it is two steps forward and one step back. This is a one step back day in terms of getting her breathing vent off. It's not going to be considered for today or tomorrow now. Ugh, how frustrating. It is suspected that she could have a little respirator-induced pneumonia or a virus which is not uncommon for being on the vent for this long. But, all her readings otherwise are doing well. She is urinating and having bowel movements. Her O2 sats are at 80%.
She spent a lot of time awake and shifting around through the night. Then she would drift off for a bit and pop awake again. She kept the night nurse busy coming in to scoot her up in bed, and it wouldn't be long before Vivian was scooting around again. She's actually trying to turn over so she can get up--I can tell by her movements. All the moving around is a good thing though.
What a long haul for Vivian this has been. Please keep the prayers coming. Thanks! Love, Keri
Sunday, July 3, 2011
Wiggle Worm
They turned down Vivian's two IV meds today from 30 to 20. The doctor was just by and wanted to turn down again, but the nurse requested to hold off until her blood gas results come back. They also turned her third IV med Dexotomonine (sp?) down from 0.5 to 0.25 today. This has been kinda quick in coming down on the IV meds, but Vivian is doing alright so far with it. They can give her extra oral doses if she needs.
Vivian also had two pressure trials today. One was for an hour, and she was successful. That means she took her own breaths that were also deep enough to be productive. During the trial the ventilator acts as a back-up and would take over should she have a problem or struggle or tire out. The second trial was started this evening at 8:15pm and then stopped because Vivian was having some of her usual things done like oral care and tube stripping and suctioning, and she gets pretty mad and messes up the readings.
With her meds reduced, Vivian has become quite a wiggle worm today. I mean really moving her body around and opening and closing her mouth to bite the breathing tube. She scoots down the bed too with the wiggling. And, today she is definitely looking around for us and at everything in the room. At one point Isaac started crying over something and Vivian started crying too (without sound).
We enjoyed lots of company today, and we thank you all for the fellowship.
Vivian also had two pressure trials today. One was for an hour, and she was successful. That means she took her own breaths that were also deep enough to be productive. During the trial the ventilator acts as a back-up and would take over should she have a problem or struggle or tire out. The second trial was started this evening at 8:15pm and then stopped because Vivian was having some of her usual things done like oral care and tube stripping and suctioning, and she gets pretty mad and messes up the readings.
With her meds reduced, Vivian has become quite a wiggle worm today. I mean really moving her body around and opening and closing her mouth to bite the breathing tube. She scoots down the bed too with the wiggling. And, today she is definitely looking around for us and at everything in the room. At one point Isaac started crying over something and Vivian started crying too (without sound).
We enjoyed lots of company today, and we thank you all for the fellowship.
Saturday, July 2, 2011
Just A Quick Update
July 2, 2011 almost 11pm
They turned down Vivian's IV meds from 40 to 30 just shortly ago. And, they turned her breathing rate on the vent down from 15 to 10. She is still doing well. I think they will leave her to rest comfortably for the rest of the night. Of course, I say that, but the nurse still comes in to "strip her tubes" periodically, and examine her, do her oral care, and shift her around in bed, etc. She got yet another bath this morning too.
I think I will turn in for the night. Love, Keri
They turned down Vivian's IV meds from 40 to 30 just shortly ago. And, they turned her breathing rate on the vent down from 15 to 10. She is still doing well. I think they will leave her to rest comfortably for the rest of the night. Of course, I say that, but the nurse still comes in to "strip her tubes" periodically, and examine her, do her oral care, and shift her around in bed, etc. She got yet another bath this morning too.
I think I will turn in for the night. Love, Keri
Weaning Off Some Meds
Saturday, July 2, 2011
Vivian is doing very well today and resting comfortably. They have weaned two of her IV drugs (Morphine and Versed) from 80 to 60 and now to 40. The third one they won't do anything with until tomorrow. They have also turned the vent rate down so that her body is doing more of the work for breathing. So, I have seen glimpses of Vivian today, even as I write this post. She opened her eyes and turned her head and looked at me or the machines behind me. She has moved her arms and legs around too. So this is exciting to see! They would like her to move around a bit to help get the fluid moved out of her body. That's another factor determining when she can get her breathing tube out.
We took the boys on the cambus downtown to the Jazz Festival for a little bit and had lunch down there. It was nice to get out. We were gone about 3 hours.
Vivian is doing very well today and resting comfortably. They have weaned two of her IV drugs (Morphine and Versed) from 80 to 60 and now to 40. The third one they won't do anything with until tomorrow. They have also turned the vent rate down so that her body is doing more of the work for breathing. So, I have seen glimpses of Vivian today, even as I write this post. She opened her eyes and turned her head and looked at me or the machines behind me. She has moved her arms and legs around too. So this is exciting to see! They would like her to move around a bit to help get the fluid moved out of her body. That's another factor determining when she can get her breathing tube out.
We took the boys on the cambus downtown to the Jazz Festival for a little bit and had lunch down there. It was nice to get out. We were gone about 3 hours.
Friday, July 1, 2011
Our Little Pink Princess
Here's a photo of little Vivian amongst all her medical machines.
Daddy Lovin' His Little Girl
Mommy found a little tiara for Vivian. She has made quite the cute impression all day bringing smiles and giggles to all the doctors and medical staff.
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Day 9 in PICU, Day 8 Post-Op
July 1, 2011
Today would have been my mom's birthday, so Happy Birthday in Heaven Mom!
Vivian got another refreshing sponge bath this morning and her bedding changed. Her plan today is to start the oral medicines in her TP tube. Her intestines are still kind of sleepy, so we'll see how it goes. I guess these oral meds are the tapers that will help her come off the IV narcotics. One of the three is oral morphine, but she can go to a regular floor with the oral meds, not the IV drugs.
Some things I say probably contradict what I write in an earlier post, but it is the flow of days, and they make changes each day or at different times. The guess right now is Vivian coming off the breathing vent somewhere between next Monday and Wednesday.
Sorry I haven't mentioned about Vivian herself. She does open her eyes and look around, but she's so groggy that takes a lot of effort. She raises her arms a little, wiggles her toes, and once in a while will try to shift her torso. I can only imagine the grand amount of effort this takes because of the sedation, the weakness of not using muscles in 8 days and not having hardly any calories for energy. Sometimes she gets upset and cries which I think I described earlier as an expression on her face and her little body shakes but no sound. I have her Elmo doll her which makes noise with talk and laugh. I have to keep the toy quiet because Vivian gets upset. It's her favorite, and she would probably like to play with it.
Thanks so much for your continued prayers. Several people have had trouble posting comments to the blog. I don't know what I can do to fix it, but please feel free to email me. I check my email several times daily.
Love, Keri
Ken and our boys are coming this morning, and he is bringing our USB cable, so we can upload more photos. Last time we borrowed one from the library, but they have just one.
I guess it is really hot outside. The PICU in particular is kept fairly cool, and I've adjusted to that. I get warm now even going to other floors in the hospital.
Today would have been my mom's birthday, so Happy Birthday in Heaven Mom!
Vivian got another refreshing sponge bath this morning and her bedding changed. Her plan today is to start the oral medicines in her TP tube. Her intestines are still kind of sleepy, so we'll see how it goes. I guess these oral meds are the tapers that will help her come off the IV narcotics. One of the three is oral morphine, but she can go to a regular floor with the oral meds, not the IV drugs.
Some things I say probably contradict what I write in an earlier post, but it is the flow of days, and they make changes each day or at different times. The guess right now is Vivian coming off the breathing vent somewhere between next Monday and Wednesday.
Sorry I haven't mentioned about Vivian herself. She does open her eyes and look around, but she's so groggy that takes a lot of effort. She raises her arms a little, wiggles her toes, and once in a while will try to shift her torso. I can only imagine the grand amount of effort this takes because of the sedation, the weakness of not using muscles in 8 days and not having hardly any calories for energy. Sometimes she gets upset and cries which I think I described earlier as an expression on her face and her little body shakes but no sound. I have her Elmo doll her which makes noise with talk and laugh. I have to keep the toy quiet because Vivian gets upset. It's her favorite, and she would probably like to play with it.
Thanks so much for your continued prayers. Several people have had trouble posting comments to the blog. I don't know what I can do to fix it, but please feel free to email me. I check my email several times daily.
Love, Keri
Ken and our boys are coming this morning, and he is bringing our USB cable, so we can upload more photos. Last time we borrowed one from the library, but they have just one.
I guess it is really hot outside. The PICU in particular is kept fairly cool, and I've adjusted to that. I get warm now even going to other floors in the hospital.
Thursday, June 30, 2011
One Week Post-Surgery
Vivian has been busy today. She got her PIC line put in her leg this morning. The procedure took a little over an hour, and she got her EJ line out of her central vein in her neck. They gave her all new drip lines. Directly after that our wonderful cardiac nurse practicioner Tina arrived and removed Vivian's surgical dressing from her chest closure. It's now open to the air for healing. She also removed ONE of the three chest tubes--this one was in the sac around the heart. (The other two go to the lungs).
Also, I didn't realize that yesterday Vivian was taken off two of three of her blood pressure meds and is tolerating that well. She remains on one called Norepi. They are forecasting taking her off the breathing vent in 3 or 4 days.
So...this has been a good day so far! Positive direction for Vivian. Her IV pole has three pump stations on it instead of four so that looks like a step in the right direction.
That's all for now. Ken and our boys are at home today catching up chores and household needs.
Love, Keri
Also, I didn't realize that yesterday Vivian was taken off two of three of her blood pressure meds and is tolerating that well. She remains on one called Norepi. They are forecasting taking her off the breathing vent in 3 or 4 days.
So...this has been a good day so far! Positive direction for Vivian. Her IV pole has three pump stations on it instead of four so that looks like a step in the right direction.
That's all for now. Ken and our boys are at home today catching up chores and household needs.
Love, Keri
Wednesday, June 29, 2011
Resting and Healing
Today has been a day of resting and healing like the title says. Vivian did get her TP tube in. It took three tries and using a smaller tube to get it to work. Now she is getting feedings that put formula right into her small intestine. They have to start very slow, so Vivian gets a half teaspoon every eight hours.
She also had an EKG of her heart today, and they were studying her for awhile. They are looking for any narrowing of her arteries along the suture lines. I'm not sure how often they will do these, but it could mean she would need a heart catheterization while here.
Overall, Vivian is doing well. There's things here and there that get out of whack and need to be adjusted. She just has a long road to go. It's hard to get a feel for that without being here, but she's been on strong narcotics for a week now, blood pressure meds, supplimental oxygen and nitric oxide in her vent. So, keeping her balanced and weaning her and making sure her heart responds well is not just a straightforward path.
As for us we miss Vivian's personality we haven't seen for a week. I sing and read and talk to Vivian, and she does know we are here. I comfort her when she "cries" which she does by making a cry-face and shaking her body. However, I haven't changed a diaper in a week or fed her meals. And, with her sedated, I have freedom to come and go from the room. As Vivian gets better, my end of supervision and care will greatly increase. The one-to-one nursing care round the clock is so nice that I better start preparing now for the "shock" of the regular peds floor!
Tomorrow I am thinking about taking a bus over to the Walmart to do a little grocery shopping and utilize the hospital refrigerators since the cafeteria is getting so expensive.
Thank you for your continued prayers and support. Love, Keri
She also had an EKG of her heart today, and they were studying her for awhile. They are looking for any narrowing of her arteries along the suture lines. I'm not sure how often they will do these, but it could mean she would need a heart catheterization while here.
Overall, Vivian is doing well. There's things here and there that get out of whack and need to be adjusted. She just has a long road to go. It's hard to get a feel for that without being here, but she's been on strong narcotics for a week now, blood pressure meds, supplimental oxygen and nitric oxide in her vent. So, keeping her balanced and weaning her and making sure her heart responds well is not just a straightforward path.
As for us we miss Vivian's personality we haven't seen for a week. I sing and read and talk to Vivian, and she does know we are here. I comfort her when she "cries" which she does by making a cry-face and shaking her body. However, I haven't changed a diaper in a week or fed her meals. And, with her sedated, I have freedom to come and go from the room. As Vivian gets better, my end of supervision and care will greatly increase. The one-to-one nursing care round the clock is so nice that I better start preparing now for the "shock" of the regular peds floor!
Tomorrow I am thinking about taking a bus over to the Walmart to do a little grocery shopping and utilize the hospital refrigerators since the cafeteria is getting so expensive.
Thank you for your continued prayers and support. Love, Keri
Tuesday, June 28, 2011
An Evening at the Spa
Okay, so not exactly what one would think. Our night nurse Laura spent a couple hours giving Vivian a much-needed sponge bath and washed her hair too. She changed Vivian's patches around and put ointments on to protect her skin abrasions and chapped areas. Vivian apparently enjoyed the scalp massage because she relaxed into it and dropped her blood pressure a few points. Nurse Laura changed Vivian's bedding and shifted her to a new position.
So, Vivian should be ready for another resful night. The next big milestone is going to be working her medications down and getting her ready to prove she doesn't need so much oxygen and nitric oxide to keep her pulmonary arteries relaxed and blood flowing.
Oh and we are on hospital schedule too, so things don't always happen when they say. They did not do the line replacements today. That goes on the list for tomorrow.
Funny story from last night...Our night nurse-the same one--put Vivian's Elmo doll in her hand and its body and head sort of rested against Vivian's torso. Well, this toy normally opens its mouth when you shake him and he talks or makes noises. So the respiratory therapist comes in to check Vivian's breathing. Every time Vivian takes a breath, Elmo's mouth opens just slightly and closes again. It's not enough to trigger the classic Elmo noises, but it was hilarious because it looked like Elmo was breathing right along with Vivian. It surprised the therapist because she couldn't figure out if the toy was turned on and mimicking Vivian's breathing or what!
Finally, I cut short on my update earlier, but we enjoyed company from a friend from church and from Ken's sister Denise and husband Todd and their kids Zach and Kate. We shared lunch together and visited and took all our active boys to a park near by for a couple hours. A fun time had by all.
We are forcasting a couple more weeks in the hospital. I am wondering if our hospital stay will be the same or longer than our travel to China?
By the way, today when the nurse was cleaning out Vivian's mouth earlier today, she was a bit awake and pursed her cute little lips together to refuse that when the nurse tried to go in a second time. It touched my heart to see a glimpse of our sweet little Vivian.
I'm off to bed now. Ken and the boys are spending the night again here in a "hotel-style" room here in the hospital available to families for a small fee. I hope these posts are keeping folks updated. I'm better at writing a conversational letter to a specific person rather than a message into cyberspace. Love, Keri
So, Vivian should be ready for another resful night. The next big milestone is going to be working her medications down and getting her ready to prove she doesn't need so much oxygen and nitric oxide to keep her pulmonary arteries relaxed and blood flowing.
Oh and we are on hospital schedule too, so things don't always happen when they say. They did not do the line replacements today. That goes on the list for tomorrow.
Funny story from last night...Our night nurse-the same one--put Vivian's Elmo doll in her hand and its body and head sort of rested against Vivian's torso. Well, this toy normally opens its mouth when you shake him and he talks or makes noises. So the respiratory therapist comes in to check Vivian's breathing. Every time Vivian takes a breath, Elmo's mouth opens just slightly and closes again. It's not enough to trigger the classic Elmo noises, but it was hilarious because it looked like Elmo was breathing right along with Vivian. It surprised the therapist because she couldn't figure out if the toy was turned on and mimicking Vivian's breathing or what!
Finally, I cut short on my update earlier, but we enjoyed company from a friend from church and from Ken's sister Denise and husband Todd and their kids Zach and Kate. We shared lunch together and visited and took all our active boys to a park near by for a couple hours. A fun time had by all.
We are forcasting a couple more weeks in the hospital. I am wondering if our hospital stay will be the same or longer than our travel to China?
By the way, today when the nurse was cleaning out Vivian's mouth earlier today, she was a bit awake and pursed her cute little lips together to refuse that when the nurse tried to go in a second time. It touched my heart to see a glimpse of our sweet little Vivian.
I'm off to bed now. Ken and the boys are spending the night again here in a "hotel-style" room here in the hospital available to families for a small fee. I hope these posts are keeping folks updated. I'm better at writing a conversational letter to a specific person rather than a message into cyberspace. Love, Keri
Productive Morning
Good morning,
Well, Vivian had a very good night last night. It was quiet which was good for both Vivian and me. It can get a little nerve-wracking for mom too, and it did yesterday afternoon when I left for an hour and returned and Vivian was having blood pressure issues.
This morning at 8:15am Dr. Davis was here to close Vivian's chest. She tolerated the procedure very well. In other words her heart handled the new and normal pressure of a closed sternum!
She has to get a couple of line replacements today and otherwise just rest. We will be in the PICU for another week to two weeks. I am hoping the majority of our stay will be the PICU then, and a short stay on a regular floor til we go home. Like they say, we are all working on Vivian's time schedule--she's in charge!
We are enjoying a visit from our nephew Zach today too!
Thank you for your prayers.
Well, Vivian had a very good night last night. It was quiet which was good for both Vivian and me. It can get a little nerve-wracking for mom too, and it did yesterday afternoon when I left for an hour and returned and Vivian was having blood pressure issues.
This morning at 8:15am Dr. Davis was here to close Vivian's chest. She tolerated the procedure very well. In other words her heart handled the new and normal pressure of a closed sternum!
She has to get a couple of line replacements today and otherwise just rest. We will be in the PICU for another week to two weeks. I am hoping the majority of our stay will be the PICU then, and a short stay on a regular floor til we go home. Like they say, we are all working on Vivian's time schedule--she's in charge!
We are enjoying a visit from our nephew Zach today too!
Thank you for your prayers.
Monday, June 27, 2011
Change of Plans...
We had been waiting for Vivian's surgeon to complete another case today, and during that wait, Vivian had an episode with her blood pressure being unstable while they were working on weaning from meds and giving other meds. She is a tricky girl to work with.
Between those things, the small surgery to close her chest is planned for tomorrow morning after rounds. So the goal is for Vivian to have a quiet, restful night.
Love,
Keri
Between those things, the small surgery to close her chest is planned for tomorrow morning after rounds. So the goal is for Vivian to have a quiet, restful night.
Love,
Keri
Busy Day for Vivian
Monday, June 27, 2011
Vivian had another restful night with just one blood pressure spike around midnight. The spike means that she was "awake" under her sedatives and not happy about things. No surprise there, she has something or another inserted in every orifice and every limb and her torso!
It's already 11:20am now. In a few minutes Vivian will get a TP tube which goes from the nose through tummy into small intestine. This is a nice option to be able to start giving Vivian some formula which will go directly into her small intestine that she can digest, and there are no worries about her aspirating while on the breathing tube.
And the Big News! After lunch Dr. Davis will come up to her room here and close her chest! Vivian looks really good and is tolerating being shifted around. I am not sure how long that surgery will take, but it also will be done here in the room. She will have to recover a bit after that i.e. her blood pressure returning to normal, etc.
And, the kidney doctors have been in to check on Vivian just a few minutes ago. They are very, very pleased with her kidney function resuming so well because they did suffer with the heart surgery.
Lastly, Vivian has woken up several times today and maintained her blood pressure instead of it spiking which means she is waking up a bit but is not "freaking out" about her situation. That is ideal so she can wake and drift back into sleep while remaining calm.
Please pray for Vivian's chest closure to go well and her body, specifically her heart to tolerate the new and normal pressure. Love, Keri
Vivian had another restful night with just one blood pressure spike around midnight. The spike means that she was "awake" under her sedatives and not happy about things. No surprise there, she has something or another inserted in every orifice and every limb and her torso!
It's already 11:20am now. In a few minutes Vivian will get a TP tube which goes from the nose through tummy into small intestine. This is a nice option to be able to start giving Vivian some formula which will go directly into her small intestine that she can digest, and there are no worries about her aspirating while on the breathing tube.
And the Big News! After lunch Dr. Davis will come up to her room here and close her chest! Vivian looks really good and is tolerating being shifted around. I am not sure how long that surgery will take, but it also will be done here in the room. She will have to recover a bit after that i.e. her blood pressure returning to normal, etc.
And, the kidney doctors have been in to check on Vivian just a few minutes ago. They are very, very pleased with her kidney function resuming so well because they did suffer with the heart surgery.
Lastly, Vivian has woken up several times today and maintained her blood pressure instead of it spiking which means she is waking up a bit but is not "freaking out" about her situation. That is ideal so she can wake and drift back into sleep while remaining calm.
Please pray for Vivian's chest closure to go well and her body, specifically her heart to tolerate the new and normal pressure. Love, Keri
Sunday, June 26, 2011
Having a good and restful day...
2pm Sunday, June 26th
Vivian is doing nicely again today. From morning rounds they said her kidneys are functioning well enough that no other intervention is needed besides the tube that was inserted yesterday. Her heart rhythm is still working to get to a normal timing. Her chest is still open, so I can see part of her heart muscle beating and the one of the patches that was done in her repair. After several days to acclimate to this site, when I look at it now, I am so thankful God created our amazing bodies and knit them together. Tomorrow Dr. Davis will be by to check Vivian's chest and see how close it will be to being closed. Love, Keri
Vivian is doing nicely again today. From morning rounds they said her kidneys are functioning well enough that no other intervention is needed besides the tube that was inserted yesterday. Her heart rhythm is still working to get to a normal timing. Her chest is still open, so I can see part of her heart muscle beating and the one of the patches that was done in her repair. After several days to acclimate to this site, when I look at it now, I am so thankful God created our amazing bodies and knit them together. Tomorrow Dr. Davis will be by to check Vivian's chest and see how close it will be to being closed. Love, Keri
Naughty and Nice
Vivian had a good night last night. She keeps the staff on their toes in general by trying to wake up. We see this when she tries to lift her arms which are loosely constrained and her facial expression shows she is upset. Daddy and mommy have both been able to comfort her by talking or singing softly to her while she receives an extra dose of sedation meds.
Last night at 4am Vivian was "naughty"--she overrode the breathing tube and was carrying more workload and threw the monitors out of whack. They spent some time settling her back down. I can't recall exactly what they did, but it was not an emergent situation. They just don't want her body to work that hard yet. The nice side to me is that Vivian is trying to tell us she wants off these machines and to go home and play.
Rounds for Vivian are next so will update later.
Love,
Keri
Last night at 4am Vivian was "naughty"--she overrode the breathing tube and was carrying more workload and threw the monitors out of whack. They spent some time settling her back down. I can't recall exactly what they did, but it was not an emergent situation. They just don't want her body to work that hard yet. The nice side to me is that Vivian is trying to tell us she wants off these machines and to go home and play.
Rounds for Vivian are next so will update later.
Love,
Keri
Saturday, June 25, 2011
40 Hours Post-Surgery
Vivian had a good night again overall. One concern about her is she has been collecting fluids in her periteneal cavity. That is the sac inside the body that contains the intestines and the stomach. Vivian bloated up quite a bit. Also, her kidneys have taken a hit from the extensive surgery. (We had arrived with the thought of a 6 hour surgery, maybe 8 tops but couldn't believe 12 hours).
This morning at 11am a tube was then added to help drain the fluids off the periteneal cavity and relieve the kidneys. The medical staff will evaluate tomorrow whether Vivian will need a kind of dialysis called renal replacement therapy, I think. So far though she is producing lots more urine, so as odd as it sounds, I am excited about that!
Also, Vivian had something called a strut placed in her chest to hold it open. Dr. Davis also removed that this morning at 11am. That is a step in the right direction for Vivian's chest getting closed.
It was interesting because Vivian's PICU room also can act as a mini operating room, so these procedures were done right here and took about an hour.
We ask for continued prayer specifically for Vivian's swelling to decrease in her chest cavity and for her kidneys to be able to heal and resume normal function.
Mom (Keri) is staying at the hospital, and Ken is commuting to also be with our boys. He did stay the first night after surgery. We are grateful to Grandma and Grandpa Van Zee for taking care of our boys during this time.
This morning at 11am a tube was then added to help drain the fluids off the periteneal cavity and relieve the kidneys. The medical staff will evaluate tomorrow whether Vivian will need a kind of dialysis called renal replacement therapy, I think. So far though she is producing lots more urine, so as odd as it sounds, I am excited about that!
Also, Vivian had something called a strut placed in her chest to hold it open. Dr. Davis also removed that this morning at 11am. That is a step in the right direction for Vivian's chest getting closed.
It was interesting because Vivian's PICU room also can act as a mini operating room, so these procedures were done right here and took about an hour.
We ask for continued prayer specifically for Vivian's swelling to decrease in her chest cavity and for her kidneys to be able to heal and resume normal function.
Mom (Keri) is staying at the hospital, and Ken is commuting to also be with our boys. He did stay the first night after surgery. We are grateful to Grandma and Grandpa Van Zee for taking care of our boys during this time.
Friday, June 24, 2011
A Few Pictures
The day before surgery with Dr. Davis, the cardiac surgeon, and Tina Davenport, a nurse who was our primary communication during surgery.
Sitting with Mommy the morning of surgery, just before going to the O.R. Vivian was interested in the duck in the picture behind her.
Friday morning, the day after surgery. Lots of tubes and wires and monitors. They had to give Vivian a little extra sleepy medicine because she was being her normal, feisty self (wiggling her arms and legs, swiveling her hips).
2 Bumps in the Road, but a Good Night
Vivian was brought back to us, in the Pediatric ICU (PICU) at 9:00 last night. We already knew about the first bump in the road, which was that her VSD patch had to be reopened because the pressure in her right ventricle was too high. We talked with the surgeon and he said that he removed about half of the patch, because it would have taken longer to remove more and they wanted to get done as quickly as possible and have a very, very small chance of needing to put her on bypass a third time. Looking longer term, we now have to wait for months or even years to see how her body responds once the effects of the surgery (especially the bypass) wear off and whether the pressures in her heart will adapt and allow the VSD to be closed.
The second bump in the road is that when they closed her up the pressure in her chest was too high, due to being open for 11 hours and on the bypass machine for about 6 hours. They therefore left her chest open (which is not uncommon with infants or very small children like Vivian) and it will probably get closed in about 3 days. This means a longer stay in the PICU and probably a longer overall stay in the hospital.
Vivian did have a good night and has remained stable throughout. The medical staff is confident about her recovery from the surgery.
We are amazed by our little battler and praise God for placing her in our lives.
The second bump in the road is that when they closed her up the pressure in her chest was too high, due to being open for 11 hours and on the bypass machine for about 6 hours. They therefore left her chest open (which is not uncommon with infants or very small children like Vivian) and it will probably get closed in about 3 days. This means a longer stay in the PICU and probably a longer overall stay in the hospital.
Vivian did have a good night and has remained stable throughout. The medical staff is confident about her recovery from the surgery.
We are amazed by our little battler and praise God for placing her in our lives.
Thursday, June 23, 2011
They Took The Bed...So Almost Done!!
8:25pm The nurses have left to go get Vivian from the O.R.! This is not a simple task, so they will probably be back up here around 9pm or so. And, I guess there will be an entire team of medical folks too. We'll be meeting with them when they arrive, so that's why I'm writing now.
Keep praying for her recovery please and our stamina!
Love,
Keri
Keep praying for her recovery please and our stamina!
Love,
Keri
The Twelfth Hour...
It has now been twelve hours since Vivian was taken back, and we are still waiting. Earlier this evening (5:55pm) tThe surgeon was bringing Vivian up off the heart-lung machine, and the pressure was getting too high in her right ventricle...so back onto the bypass machine she went. Dr. Davis had to go back in and put a hole in the patch between the ventricles to relieve the pressure. It's possible the patch could have to be removed altogether.
7:30pm Well, we just got the good new that Vivian is now off the heart-lung machine. Now they are monitoring Vivian for the oozing type bleeding to stop. They have currently told us Vivian will be back here with us in the PICU about 9pm. The nurses are referring to this as a "big case."
We are surprised by the length of the surgery and are anxious for the news updates we get periodically. And, we are a little tired...a long day.
Hope to post again soon about confirming that Vivian is done.
Love,
Keri
7:30pm Well, we just got the good new that Vivian is now off the heart-lung machine. Now they are monitoring Vivian for the oozing type bleeding to stop. They have currently told us Vivian will be back here with us in the PICU about 9pm. The nurses are referring to this as a "big case."
We are surprised by the length of the surgery and are anxious for the news updates we get periodically. And, we are a little tired...a long day.
Hope to post again soon about confirming that Vivian is done.
Love,
Keri
Still In Surgery
4:15pm We got a report that Vivian is still doing well, but it will probably still be a couple more hours. Dr. Davis is still stitching up the areas on the aorta where the vessels were removed. Then he will work on placing the valve. And, of course, he will monitor everything afterwards for a period of time.
If you are led, please include my (Keri's) dad in your prayers. He is struggling with extended illness and may need to be hospitalized. My dad Larry and Betty live in WY.
Love,
Keri
If you are led, please include my (Keri's) dad in your prayers. He is struggling with extended illness and may need to be hospitalized. My dad Larry and Betty live in WY.
Love,
Keri
Heart Surgery - June 23, 2011
After too long of a break, we are back on the blog. Good intentions don't add up to communication, so we will have to catch you all up on the progress and milestones Vivian has accomplished this last year.
Right now as we speak our dear precious little girl is in the middle of a long surgery which will help her heart and lungs work more efficiently and let her get onto those more important things like running and jumping and playing like a toddler should enjoy!
Here is the "breakdown" of Vivian's day so far:
5:25am Pick up a little sleepyhead out of bed and slip her into the van, jammies and all!
6:15am Arrive at University of Iowa Children's Hospital and check in
7:15am Daddy carries his sweet girl in his arms right into the O.R. and holds her while she gets her "sleepy air."
7:15-9am Medical staff in O.R. prepare Vivian for the surgical portion. Lots of lines and tubes must be in place to help her body function and be monitored through this big surgery.
9am The cardiac surgeon Dr. Davis arrived in the O.R. to begin his work.
9am-12:30pm Dr. Davis meticulously located, sorted and separated Vivian's blood vessels to prepare the two arteries to be detached from the aorta and attached to the pulmonary artery. These vessels are actually behind her heart and are difficult to locate and work with.
12:30-12:45pm Vivian was now placed on the heart-lung bypass machine.
12:45-(currently 3pm) Dr. Davis has moved the arteries and removed the stent (that had been previously placed in her pulmonary artery 7/2010) and will now start to put in the VSD patch and an artificial valve between her right ventricle and pulmonary artery.
The medical staff has been very happy with how the surgery has been going. Vivian has been doing well and been very stable. When the surgery work is done, Dr. Davis and staff will sit a bit and monitor Vivian's body for awhile in the O.R. They believe she will be out of surgery between 4:30 and 5pm.
God is so good, and we are blessed beyond words to be parents to our daughter!
We so appreciate the many, many friends and family praying for us and thinking of us during this time. As you are led, I ask for prayers also for my (Keri's) dad in WY who is struggling with extended illness.
Right now as we speak our dear precious little girl is in the middle of a long surgery which will help her heart and lungs work more efficiently and let her get onto those more important things like running and jumping and playing like a toddler should enjoy!
Here is the "breakdown" of Vivian's day so far:
5:25am Pick up a little sleepyhead out of bed and slip her into the van, jammies and all!
6:15am Arrive at University of Iowa Children's Hospital and check in
7:15am Daddy carries his sweet girl in his arms right into the O.R. and holds her while she gets her "sleepy air."
7:15-9am Medical staff in O.R. prepare Vivian for the surgical portion. Lots of lines and tubes must be in place to help her body function and be monitored through this big surgery.
9am The cardiac surgeon Dr. Davis arrived in the O.R. to begin his work.
9am-12:30pm Dr. Davis meticulously located, sorted and separated Vivian's blood vessels to prepare the two arteries to be detached from the aorta and attached to the pulmonary artery. These vessels are actually behind her heart and are difficult to locate and work with.
12:30-12:45pm Vivian was now placed on the heart-lung bypass machine.
12:45-(currently 3pm) Dr. Davis has moved the arteries and removed the stent (that had been previously placed in her pulmonary artery 7/2010) and will now start to put in the VSD patch and an artificial valve between her right ventricle and pulmonary artery.
The medical staff has been very happy with how the surgery has been going. Vivian has been doing well and been very stable. When the surgery work is done, Dr. Davis and staff will sit a bit and monitor Vivian's body for awhile in the O.R. They believe she will be out of surgery between 4:30 and 5pm.
God is so good, and we are blessed beyond words to be parents to our daughter!
We so appreciate the many, many friends and family praying for us and thinking of us during this time. As you are led, I ask for prayers also for my (Keri's) dad in WY who is struggling with extended illness.
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