After a long silence there is so much to tell. I will start with current happenings and backtrack later. We are getting acquainted with our new daughter Meiling in Guangzhou, China! She is absolutely adorable. She has been officially ours for three days now. And just this evening we have really started to see a little personality come out and even a smile or two. Meiling is an amazing two year old little girl. We are part of a travel group of 16 families this time.
Ken and I are encountering some health challenges, but we are working through those. And Meiling has a cold, so we covet your prayers as we are here for 6 more days.
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
Thursday, November 28, 2013
Saturday, November 5, 2011
Laughing at the Ducks
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!
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!
$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
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