It's been 8 days now since Taeya had her open heart surgery. Crazy that all that time has past. The fear of anticipation of what the outcome would be, the intensity of handing her over to the OR nurse, the shock of seeing her after surgery, the feeling of inadequacy of bringing her home.... It's all like a whirlwind. I've spent the better part of the day crying while my brain tries to catch up to all that's taken place.
Taeya's days and nights are confused, so we aren't sleeping much. She takes long naps during the day and I try to balance sleep with getting things done and being a mom to my others. She cries do loud now, too!! I asked her Cardiologist what they did with my sweet, calm, peaceful little baby! This is reminiscent of colic!
Eight days later, her scar is healing. One day, there will just be some faint marks that evidence the reality of this season. People tell me I'll forget; that one day I'll look back on this and it won't be so intense. I don't know that I agree. I do know that we will settle in to our "new normal" and life will again take over. But the scar of surgery she bears over her heart is a mirror image of the scar of emotion I bear on my own heart.
Linda
Friday, October 29, 2010
Wednesday, October 27, 2010
Days 4 and 5 after surgery
I had a whole post almost completed yesterday when the cord for my computer went out again. Though I saved what I had written, it was not there when I was able to get back online. We got a new cord, again, today and it's now broken again. Ugh.
Yesterday Taeya at the ECHO done in our hospital room. It was quite uncomfortable for her. It showed that the repair is successful. It showed, too, some regurgitation of oxygenated blood. I asked the Sonographer what the side effects could be and he said Taeya can have edema, which is why she is taking Lasix, a diuretic. I asked if that regurgitation would one day correct itself and he said, yes, that usually is what happens.
We were released yesterday and home in the evening; Taeya with a heart made new, and me with the beginning of a deeper understanding of the heart disease I, too, have.
My prayers, in the beginning of all of this, were prayers for God to heal me of my unbelief. But a lack of belief isn't always cured when He gives us some "thing" to believe in; some tangible proof of answered prayer the way we would want prayer answered. If that's how it worked, the answer to our prayers would always be "yes", and that would be a dangerous thing.
Taeya was all smiles yesterday, and she was the same silly, funny little girl she was prior to surgery. The doc that discharged her said that all her vitals were terrific, but it was her terrific personality that had us, wagons full of too much stuff, wheeling down past all the moms, dads and kiddos to the elevators, to the parade that we made up, to the car and home.
It was such a significant day in our lives. Where were the balloons, the band playing, the banners of this great success? I prayed for an "uneventful" surgery and was so happy I had what I asked for; a baby on the way to a mended heart. Why, then, did I cry like a little child? How can such a life changing event be so huge to me, and just an ordinary day to others? Didn't everyone know that God worked a miracle within my baby's chest?
The drive home was uneventful, which was an answer to prayer. At the same time, I think likely from relief, I cried a release that needed to be let go.
Melissa came to pick us up in Denver, and said, as we were driving away from the hospital, "This is all behind you now. You can put this in the past." It was overwhelming to think that it was just 6 days since our original arrival up in Denver.
We've been home two days now and Taeya gets stronger each day. She has decided that she REALLY doesn't like her cannula at all, or her new formula. She has never been one to protest; always being the sweet, gentle baby. Now she argues everything that bothers her! Did that come with her new heart, or I am just beginning to see the strong will that has kept her fighting?
Thank you, everyone, for supporting us during this time. Please continue to pray for Taeya's healing. We see the Cardiologist today and I am praying she can come off of oxygen and that they will not require an ECHO today, just to save her the pain.
You have all been a great blessing to me. My cup runs over at the friends that have come along side us; both those that we know, and those whose paths we have not physically crossed.
Every, every, every blessing,
Linda
p.s. As I typed this, Taeya has pulled out her cannula 4 times, laughing all the while!!
Yesterday Taeya at the ECHO done in our hospital room. It was quite uncomfortable for her. It showed that the repair is successful. It showed, too, some regurgitation of oxygenated blood. I asked the Sonographer what the side effects could be and he said Taeya can have edema, which is why she is taking Lasix, a diuretic. I asked if that regurgitation would one day correct itself and he said, yes, that usually is what happens.
We were released yesterday and home in the evening; Taeya with a heart made new, and me with the beginning of a deeper understanding of the heart disease I, too, have.
My prayers, in the beginning of all of this, were prayers for God to heal me of my unbelief. But a lack of belief isn't always cured when He gives us some "thing" to believe in; some tangible proof of answered prayer the way we would want prayer answered. If that's how it worked, the answer to our prayers would always be "yes", and that would be a dangerous thing.
Taeya was all smiles yesterday, and she was the same silly, funny little girl she was prior to surgery. The doc that discharged her said that all her vitals were terrific, but it was her terrific personality that had us, wagons full of too much stuff, wheeling down past all the moms, dads and kiddos to the elevators, to the parade that we made up, to the car and home.
It was such a significant day in our lives. Where were the balloons, the band playing, the banners of this great success? I prayed for an "uneventful" surgery and was so happy I had what I asked for; a baby on the way to a mended heart. Why, then, did I cry like a little child? How can such a life changing event be so huge to me, and just an ordinary day to others? Didn't everyone know that God worked a miracle within my baby's chest?
The drive home was uneventful, which was an answer to prayer. At the same time, I think likely from relief, I cried a release that needed to be let go.
Melissa came to pick us up in Denver, and said, as we were driving away from the hospital, "This is all behind you now. You can put this in the past." It was overwhelming to think that it was just 6 days since our original arrival up in Denver.
We've been home two days now and Taeya gets stronger each day. She has decided that she REALLY doesn't like her cannula at all, or her new formula. She has never been one to protest; always being the sweet, gentle baby. Now she argues everything that bothers her! Did that come with her new heart, or I am just beginning to see the strong will that has kept her fighting?
Thank you, everyone, for supporting us during this time. Please continue to pray for Taeya's healing. We see the Cardiologist today and I am praying she can come off of oxygen and that they will not require an ECHO today, just to save her the pain.
You have all been a great blessing to me. My cup runs over at the friends that have come along side us; both those that we know, and those whose paths we have not physically crossed.
Every, every, every blessing,
Linda
p.s. As I typed this, Taeya has pulled out her cannula 4 times, laughing all the while!!
Monday, October 25, 2010
Exciting Times!
We are just an hour or so away from a final ECHO of Taeya's new heart. If all goes as the Cardiologist anticipates, we are going home today!!
Sunday, October 24, 2010
"You're Movin' Up"
It's what every parent around here wants to hear. Surgeries for heart repairs for these little kiddos are done Monday thru Friday, except emergencies. Most kids stay in the CICU (Cardiac Intensive Care Unit) for about two days. Because of the lymph node issue with Taeya, she ended up in the CICU an additional day.
The CICU is great with it's one on one care, but the move up to the CPCU (Cardiac Progressive Care Unit) means things are looking good for your child.
Today was our day. After the chest tube came out, I heard the nurse on the phone giving an update on Taeya. I asked what was going on when she was done and she said "You're movin' up. Discharge orders are written and we'll be going shortly". Honestly, I was a little scared. Excited and relieved, but scared.
I had spent the whole day in Taeya's bay and had the pleasure of visiting for several hours with James, her RN for the day. He was terrific. He told me that families fly in to Denver from all over the US and they repair about 5 to 10 Ds kids a week.
There was a sweet little baby, just 4 days old, that had come out of surgery on Friday. She only had one ventricular chamber. (You need two). The docs surgically made a second ventricle by dividing the one with a patch. James has explained that sometimes things just go haywire cells don't divide the way they should. He said that "God has made us so detailed and [the heart] is evidence of that".
Isn't that so true? Our hearts, that we have no control over, are ordered to life by the God of Life. Amazing.
When this little one was brought in, the whole team was there. All the docs and nurses from OR, and all the receiving docs and nurses from the CICU. I asked James if that was what it looked like when Taeya was brought in. "Yes, it was. All hands on deck."
An hour later it was very hushed. The baby had been crying quite a bit. The parents has come in and it was very quiet for some time. I held Taeya's hand and sang You Are My Sunshine and we prayed for that sweet little 4 day old baby.
You get to know the expressions faces wear around here pretty quickly. Fear? Been there. Lost? Know that one, too. Overwhelm? For sure. Exhaustion? Wear it like a badge of honor. A little relief? Thank God. Frightened again? Yep. But the one I have not had to identify with is Loss. I prayed to hear those words, "You're movin' up".
But not everyone hears that around here.
As we prepared this morning to move up to our new room, that sweet little girl moved up to our Father's arms.
Thank You, Jesus, for giving life. Thank You for sustaining us. I confess I don't always understand You. My flesh wants to argue for that mom who identifies with Loss.
This is a path that is very hard to articulate and even harder to understand, whether or not your experience is first hand I have never liked process, but that's what this is. So we sit and we pray and we try to let it all go as God reconciles all this emotion to align with His will.
Thank you, Jesus, for moving up.
The CICU is great with it's one on one care, but the move up to the CPCU (Cardiac Progressive Care Unit) means things are looking good for your child.
Today was our day. After the chest tube came out, I heard the nurse on the phone giving an update on Taeya. I asked what was going on when she was done and she said "You're movin' up. Discharge orders are written and we'll be going shortly". Honestly, I was a little scared. Excited and relieved, but scared.
I had spent the whole day in Taeya's bay and had the pleasure of visiting for several hours with James, her RN for the day. He was terrific. He told me that families fly in to Denver from all over the US and they repair about 5 to 10 Ds kids a week.
There was a sweet little baby, just 4 days old, that had come out of surgery on Friday. She only had one ventricular chamber. (You need two). The docs surgically made a second ventricle by dividing the one with a patch. James has explained that sometimes things just go haywire cells don't divide the way they should. He said that "God has made us so detailed and [the heart] is evidence of that".
Isn't that so true? Our hearts, that we have no control over, are ordered to life by the God of Life. Amazing.
When this little one was brought in, the whole team was there. All the docs and nurses from OR, and all the receiving docs and nurses from the CICU. I asked James if that was what it looked like when Taeya was brought in. "Yes, it was. All hands on deck."
An hour later it was very hushed. The baby had been crying quite a bit. The parents has come in and it was very quiet for some time. I held Taeya's hand and sang You Are My Sunshine and we prayed for that sweet little 4 day old baby.
You get to know the expressions faces wear around here pretty quickly. Fear? Been there. Lost? Know that one, too. Overwhelm? For sure. Exhaustion? Wear it like a badge of honor. A little relief? Thank God. Frightened again? Yep. But the one I have not had to identify with is Loss. I prayed to hear those words, "You're movin' up".
But not everyone hears that around here.
As we prepared this morning to move up to our new room, that sweet little girl moved up to our Father's arms.
Thank You, Jesus, for giving life. Thank You for sustaining us. I confess I don't always understand You. My flesh wants to argue for that mom who identifies with Loss.
This is a path that is very hard to articulate and even harder to understand, whether or not your experience is first hand I have never liked process, but that's what this is. So we sit and we pray and we try to let it all go as God reconciles all this emotion to align with His will.
Thank you, Jesus, for moving up.
Day 3 After Surgery
Today has been quite eventful. I came up to Taeya's room early in order to not miss rounds. I was there in plenty of time. The nurse asked me to get something (can't remember what now), and about 10 minutes later when I returned, rounds were done.
The Resident Cardiologist came back to see me and told me they would pull Taeya's remaining tube in her right lung. I stepped out and when I returned, she was sleeping peacefully. She now only has a port for blood draws and meds, which doesn't work well.
She is on all oral meds now, so will likely have that port removed sometime tomorrow. She only requires Tylenol (can you believe it?) for pain management. She is right now talking to her left hand!
Taeya gave me a few big smiles today that were the highlights of this whole event. I can't tell you what this feels like for a mommy! (Thank you, Alex! We named the teddy "Alex Bear"!)
She still doesn't like her formula at all, but we keep plugging away. It's much like when she was first born with needed to get her to eat every 3 hours max.
Please continue to pray for Taeya's complete recovery, that the fats that built up as a result of nicking her lymph node would heal and that she'll not fight me on her formula feedings. Please pray for our family situation, too. Taeya will need time to convalesce for a time and will require added attention and care.
Thank you, all, for your prayers, grace and heart for our family during this time. There is no way I could have survived it without you.
Every blessing,
Linda
The Resident Cardiologist came back to see me and told me they would pull Taeya's remaining tube in her right lung. I stepped out and when I returned, she was sleeping peacefully. She now only has a port for blood draws and meds, which doesn't work well.
She is on all oral meds now, so will likely have that port removed sometime tomorrow. She only requires Tylenol (can you believe it?) for pain management. She is right now talking to her left hand!
She still doesn't like her formula at all, but we keep plugging away. It's much like when she was first born with needed to get her to eat every 3 hours max.
Please continue to pray for Taeya's complete recovery, that the fats that built up as a result of nicking her lymph node would heal and that she'll not fight me on her formula feedings. Please pray for our family situation, too. Taeya will need time to convalesce for a time and will require added attention and care.
Thank you, all, for your prayers, grace and heart for our family during this time. There is no way I could have survived it without you.
Every blessing,
Linda
Saturday, October 23, 2010
God With Us
I don't know what's going on, but I'm gripped with fear. I feel like I can't breath. Again. I don't want to lose Taeya. We have come so far. Please, please, Lord, heal Taeya's heart. Please carry her to full recovery.
I keep hearing this song in my mind. I used to listen to this in Haiti all the time and thought I'd share it:
That You would be mindful of us
What do You see
That's worth looking our way
We are free
In ways that we never should be
Sweet release
From the grip of these chains
Like hinges straining from the weight
My heart no longer can keep from singing
All that is within me cries
For You alone be glorified
Emmanuel
God with us
My heart sings a brand new song
The debt is paid these chains are gone
Emmanuel
God with us
Lord You know
Our hearts don't deserve Your glory
Still You show
A love we cannot afford
Like hinges straining from the weight
My heart no longer can keep from singing
All that is within me cries
For You alone be glorified
Emmanuel
God with us
My heart sings a brand new song
The debt is paid these chains are gone
Emmanuel
God with us
Such a tiny offering compared to Calvary
Nevertheless we lay it at Your feet
Such a tiny offering compared to Calvary
Nevertheless we lay this at Your feet
All that is within me cries
For You alone be glorified
Emmanuel
God with us
My heart sings a brand new song
My debt is paid these chains are gone
Emmanuel
God with us
I keep hearing this song in my mind. I used to listen to this in Haiti all the time and thought I'd share it:
God With Us
Who are weThat You would be mindful of us
What do You see
That's worth looking our way
We are free
In ways that we never should be
Sweet release
From the grip of these chains
Like hinges straining from the weight
My heart no longer can keep from singing
All that is within me cries
For You alone be glorified
Emmanuel
God with us
My heart sings a brand new song
The debt is paid these chains are gone
Emmanuel
God with us
Lord You know
Our hearts don't deserve Your glory
Still You show
A love we cannot afford
Like hinges straining from the weight
My heart no longer can keep from singing
All that is within me cries
For You alone be glorified
Emmanuel
God with us
My heart sings a brand new song
The debt is paid these chains are gone
Emmanuel
God with us
Such a tiny offering compared to Calvary
Nevertheless we lay it at Your feet
Such a tiny offering compared to Calvary
Nevertheless we lay this at Your feet
All that is within me cries
For You alone be glorified
Emmanuel
God with us
My heart sings a brand new song
My debt is paid these chains are gone
Emmanuel
God with us
Found My Wall
Last night was really hard. Though Taeya has done very well, the culmination of the past several days hit me. I was walking through the lobby, filled with people on a busy weekday, as all weekdays are around here. It feels like we have been here for a month. It's hard to believe it's just been 4 days up in Denver.
I had thought Heather was staying until Sunday, but she told me she was leaving today. The fear of losing Taeya, being alone, the finances of all of this, etc., all hit. My comfort has been iced decaf coffee and the coffee place was closed. I pulled a muscle in my back sleeping on a pull out couch after nights of no sleep. There have been newborn little babies all around us crying, in I assume what is discomfort, and a little 5 year old heart patient in the same open bay as Taeya that had a rough day. (As I type, a four day old little girl with an AVSD repair and other very complicated issues is just miserable.)
There is no shortage of a need for prayer.
When I walked in on pre op day, I felt totally alone - like no one knew what this felt like. I looked up, just in front of the balloon boy in the entrance and a mom was walking around with a vacant look on her tear-stained face. I knew in that moment I was wrong. There are plenty moms here that know the fear and emptiness of the unknown, especially where your child is concerned.
All the emotion hit at one time and I completely broke down - Will Taeya be okay? Will she really heal? How will I ever leave her again? How can I not leave her with my situation the way it is? How can You trust me to face this, Lord? I am too weak, too poor, too ill equipped. Sick children are for your strongest parents. For those parents that pray great prayers and walk solid lives.
Wrong. Wrong thought pattern. Wrong assumption. Look at that mom. She doesn't know where to turn; wandering through the lobby alone. Such a familiar look on her face. And she stopped. She locked eyes with me and we exchanged pain, fear, loneliness through the open space between us.
Danny was saying something to Heather, but it all blotted out as she walked up to me.
Looking at Danny's computer bag with the Insight Schools insignia, she said, "Excuse me. Do you go to Insight? Have you ever done any of their field trips? I just wondered if you like it. We live in Pueblo and can't get up to Denver much".
"Yeah, I like it a lot. But we've never done a field trip", Danny said.
"I just wondered. We live in Pueblo and can't get up here often".
"We were going to go to the Denver zoo with the school, but didn't make it up here either. We're from the Springs. Did you go", I asked her.
"No, we live in Pueblo and we can't get up here."
Three times she said that, then her eyes erupted with tears long held back. "My daughter had surgery today. It didn't work. Her liver doesn't work. She's 17 and we live in Pueblo. We can't get up here. We've been here at Childrens for a week. We spent one week at the University hospital. I have 8 kids, and I've been here 2 weeks now."
By now she was broken. I sat her down and started praying. She mumbled something about attending a Mormon church. So what. I continued to pray. She started to calm down and wrote down her room number. She asked if I'd come see her. "Of course". She cried and hugged me saying she didn't know what she would do, but was thankful to have found someone to talk to.
My pastor from California used to say that paying tithe is good because it puts and drain hole on your greed. Prayer for others does the same thing. Suddenly my feelings of being alone with a sick baby faded a bit in the company of a mom-turned-warrior. Suddenly I wasn't so self absorbed. I could see Taeya healing. I could see progress. I could see our Father's mercy for this mom from Pueblo, living in a Childrens hospital 2 hours from her little ones, up here caring for her eldest baby with an illness no one has yet figured out. I could see our Father's mercy for this mommy up here in Denver with my littlest while my others are down in Colorado Springs and somehow know that He is watching over me, as He's watching over her, as He's watching over you.
"He's got my little bitty baby, in His hands,
He's got her grown up little baby, in His hands,
He's got your little bity babies, in His hands,
He's got the whole world in His hands"
I hit my wall as He penetrated my heart. I am ever so thankful, as is that mom, that I have Someone to talk to, too.
I had thought Heather was staying until Sunday, but she told me she was leaving today. The fear of losing Taeya, being alone, the finances of all of this, etc., all hit. My comfort has been iced decaf coffee and the coffee place was closed. I pulled a muscle in my back sleeping on a pull out couch after nights of no sleep. There have been newborn little babies all around us crying, in I assume what is discomfort, and a little 5 year old heart patient in the same open bay as Taeya that had a rough day. (As I type, a four day old little girl with an AVSD repair and other very complicated issues is just miserable.)
There is no shortage of a need for prayer.
When I walked in on pre op day, I felt totally alone - like no one knew what this felt like. I looked up, just in front of the balloon boy in the entrance and a mom was walking around with a vacant look on her tear-stained face. I knew in that moment I was wrong. There are plenty moms here that know the fear and emptiness of the unknown, especially where your child is concerned.
All the emotion hit at one time and I completely broke down - Will Taeya be okay? Will she really heal? How will I ever leave her again? How can I not leave her with my situation the way it is? How can You trust me to face this, Lord? I am too weak, too poor, too ill equipped. Sick children are for your strongest parents. For those parents that pray great prayers and walk solid lives.
Wrong. Wrong thought pattern. Wrong assumption. Look at that mom. She doesn't know where to turn; wandering through the lobby alone. Such a familiar look on her face. And she stopped. She locked eyes with me and we exchanged pain, fear, loneliness through the open space between us.
Danny was saying something to Heather, but it all blotted out as she walked up to me.
Looking at Danny's computer bag with the Insight Schools insignia, she said, "Excuse me. Do you go to Insight? Have you ever done any of their field trips? I just wondered if you like it. We live in Pueblo and can't get up to Denver much".
"Yeah, I like it a lot. But we've never done a field trip", Danny said.
"I just wondered. We live in Pueblo and can't get up here often".
"We were going to go to the Denver zoo with the school, but didn't make it up here either. We're from the Springs. Did you go", I asked her.
"No, we live in Pueblo and we can't get up here."
Three times she said that, then her eyes erupted with tears long held back. "My daughter had surgery today. It didn't work. Her liver doesn't work. She's 17 and we live in Pueblo. We can't get up here. We've been here at Childrens for a week. We spent one week at the University hospital. I have 8 kids, and I've been here 2 weeks now."
By now she was broken. I sat her down and started praying. She mumbled something about attending a Mormon church. So what. I continued to pray. She started to calm down and wrote down her room number. She asked if I'd come see her. "Of course". She cried and hugged me saying she didn't know what she would do, but was thankful to have found someone to talk to.
My pastor from California used to say that paying tithe is good because it puts and drain hole on your greed. Prayer for others does the same thing. Suddenly my feelings of being alone with a sick baby faded a bit in the company of a mom-turned-warrior. Suddenly I wasn't so self absorbed. I could see Taeya healing. I could see progress. I could see our Father's mercy for this mom from Pueblo, living in a Childrens hospital 2 hours from her little ones, up here caring for her eldest baby with an illness no one has yet figured out. I could see our Father's mercy for this mommy up here in Denver with my littlest while my others are down in Colorado Springs and somehow know that He is watching over me, as He's watching over her, as He's watching over you.
"He's got my little bitty baby, in His hands,
He's got her grown up little baby, in His hands,
He's got your little bity babies, in His hands,
He's got the whole world in His hands"
I hit my wall as He penetrated my heart. I am ever so thankful, as is that mom, that I have Someone to talk to, too.
Day 2 After Surgery
I was able to hold my sweet girl again. I came up this morning to find they had removed the large line in her neck. The Cardiology team was on rounds shortly after and the nurse insisted they move close so I could hear their discussions.
Her drainage had dropped in her left lung and the cavity around her heart. They said they were going to pull drain tubes, but the right tube still has some excess fluid. They decided to pull the left lung tube and the central tube around her heart. They also saw no need to keep the wires in for the pace maker. At 11:30 a.m. or so the team came by and removed the tubes. All that remains is the tube in her right lung and an IV port on her right ankle. She looks more like herself. They even removed the cover over her incision. I'll put up pics today. She really looks terrific.
Taeya is getting some attitude now and when the nurse tried to feed her the nasty Enfaport after she refused it from me, she literally shook her head "no"! Too funny. But my little fighter needs to eat.
If you would, please pray she will start to take the Enfaport to keep her strength up. I have asked them to add some banana flavored protein flakes called Can O' Banana to the formula. That name is just to funny.
Thank you, again, for all your prayers.
Linda (and Taeya)
Her drainage had dropped in her left lung and the cavity around her heart. They said they were going to pull drain tubes, but the right tube still has some excess fluid. They decided to pull the left lung tube and the central tube around her heart. They also saw no need to keep the wires in for the pace maker. At 11:30 a.m. or so the team came by and removed the tubes. All that remains is the tube in her right lung and an IV port on her right ankle. She looks more like herself. They even removed the cover over her incision. I'll put up pics today. She really looks terrific.
Taeya is getting some attitude now and when the nurse tried to feed her the nasty Enfaport after she refused it from me, she literally shook her head "no"! Too funny. But my little fighter needs to eat.
If you would, please pray she will start to take the Enfaport to keep her strength up. I have asked them to add some banana flavored protein flakes called Can O' Banana to the formula. That name is just to funny.
Thank you, again, for all your prayers.
Linda (and Taeya)
Friday, October 22, 2010
Chip In
The Chip In is not to be offensive to anyone. We are trying to figure out how to make this work with all the added expenses. I pray we don't cause offense at all and hope you all know the heart of our need.
Bless you all and thank you for all your prayers and support.
Linda Taeya and family
Bless you all and thank you for all your prayers and support.
Linda Taeya and family
Morning of Surgery
 |
| Taeya's Pre Op Nurse |
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| Happy as a Clam |
 |
| The last pic of her chest prior to the surgery |
 |
| So adorable |
 |
| Trying to say goodbye |
Pre Op Day Photos
 |
| Taeya on the way to pre op day |
 |
| Arriving at hospital on pre op day |
 |
| Entrance of Hospital |
 |
| My sweet girl |
Update
Taeya just had her artery line removed. This is great as it's quite uncomfortable. We were hopeful that the chest tubes would come out later today, but that's not going to happen. Her feed earlier today has increased the fluid coming from her lungs and the area around her heart. They have to remove all fat from her diet now and put her on a specially made formula called Enfaport. It's made by Enfamil and not available in stores. It doesn't taste great, so if need be, they will add protein flakes that taste like banana to get her to eat it.
She's sound asleep now under the heart blanket Mommy Faith gave her. When we have the pleasure of helping the next Ds mommy with a baby going into heart surgery, we will pass "The Faith Blanket" on. If I had a create bone in my body, I would affix a little label with Faith and Taeya's name and their birth dates and hope it would be added to over time.
Linda
She's sound asleep now under the heart blanket Mommy Faith gave her. When we have the pleasure of helping the next Ds mommy with a baby going into heart surgery, we will pass "The Faith Blanket" on. If I had a create bone in my body, I would affix a little label with Faith and Taeya's name and their birth dates and hope it would be added to over time.
Linda
Taeya Updates
Dear Friends and Family,
It has been a very busy day for Taeya. Last night, around 11:00 or so, Taeya decided it was time to wake up. She would stir and try to focus on me and fall back to sleep. The evening shift nurse told me they had come up with a plan to wean Taeya off the ventilator so she would not become dependent on it. Every hour or so, they would step down the breaths they were giving her, making her work for her breaths all that much more.
They had told me last night that they would call me if they were going to remove her breathing tube, but she got so feisty that they ended up removing it quickly at 6:00 this morning. With that, they removed the NG tube.
About an hour later they removed the large butterfly clip attached to the large in the artery in her neck. I'm trying to use laymen's terms for those that want to follow that that don't speak medicalese!
I was so excited when I saw her at 9:00 this morning. They allowed me to feed her 2 oz of milk! That was the best feeling to cradle her in my arm (I still haven't been able to hold her) and feed her. About and hour and a half later I was able to feed her another 1 1/2 oz. Another great time.
I had to go get a cord for the computer so I can have contact with people outside the hospital and was gone less than an hour. I came back excited to feed Taeya, and she has his a little bump in the road. The fluid draining from her lungs is now a milky color, indicating that the fats from the milk she had are spilling into her lung cavity via the lymph, if I'm understanding correctly. This mean she will likely need to be moved to a fat free formula for 10 to 16 weeks. Very sad for this nursing mom, for sure, but whatever is best for her is what we are going to do.
Taeya has been awake for some time today. She can stay awake and make good eye contact for about 5 to 10 minutes at a time. It's really very reassuring to see her wake up and recognize me.
There are so many more things to share, along with lots of photos. I'll start to upload them now. We really appreciate all your prayers and ask that you please continue interceding for Taeya.
Every blessing,
Linda
It has been a very busy day for Taeya. Last night, around 11:00 or so, Taeya decided it was time to wake up. She would stir and try to focus on me and fall back to sleep. The evening shift nurse told me they had come up with a plan to wean Taeya off the ventilator so she would not become dependent on it. Every hour or so, they would step down the breaths they were giving her, making her work for her breaths all that much more.
They had told me last night that they would call me if they were going to remove her breathing tube, but she got so feisty that they ended up removing it quickly at 6:00 this morning. With that, they removed the NG tube.
About an hour later they removed the large butterfly clip attached to the large in the artery in her neck. I'm trying to use laymen's terms for those that want to follow that that don't speak medicalese!
I was so excited when I saw her at 9:00 this morning. They allowed me to feed her 2 oz of milk! That was the best feeling to cradle her in my arm (I still haven't been able to hold her) and feed her. About and hour and a half later I was able to feed her another 1 1/2 oz. Another great time.
I had to go get a cord for the computer so I can have contact with people outside the hospital and was gone less than an hour. I came back excited to feed Taeya, and she has his a little bump in the road. The fluid draining from her lungs is now a milky color, indicating that the fats from the milk she had are spilling into her lung cavity via the lymph, if I'm understanding correctly. This mean she will likely need to be moved to a fat free formula for 10 to 16 weeks. Very sad for this nursing mom, for sure, but whatever is best for her is what we are going to do.
Taeya has been awake for some time today. She can stay awake and make good eye contact for about 5 to 10 minutes at a time. It's really very reassuring to see her wake up and recognize me.
There are so many more things to share, along with lots of photos. I'll start to upload them now. We really appreciate all your prayers and ask that you please continue interceding for Taeya.
Every blessing,
Linda
Tuesday, October 19, 2010
Tick, tick, tick
We are sitting in Denver (well, Taeya is sound asleep) waiting for in inevitable, not wanting it to come. I vacillate between trusting God and a fear that grips my heart like none I've ever known. I so want to believe in something good... something great. But "what ifs" seem to consume every attempt to trust and play the doom and gloom of the very real reality of these days set before us.
I don't know how to get through this. I don't know what I'll do if I lose her. Taeya is oblivious. In many was I wish I were the same.
Please pray for us for tomorrow as Taeya has a sedated ECHO at 9:30 a.m.
I don't know how to get through this. I don't know what I'll do if I lose her. Taeya is oblivious. In many was I wish I were the same.
Please pray for us for tomorrow as Taeya has a sedated ECHO at 9:30 a.m.
Monday, October 18, 2010
So many thoughts...
I wish I had started this blog back in February so everything would be fresh in my mind. But as days pass by quickly in these times, I seem to go a little slower.
I have started this blog to keep a journal, of sorts, about my family, children and more specifically, my baby, Taeya Grace. Taeya had Down syndrome; an extra copy of the 21st chromosome. Developmentally, Taeya is close to the average 4 1/2 month old. She has other challenges that we face in the immediate future.
Taeya will have surgery this Thursday, October 20. While we have known this day would come, mentally and emotionally holding it at bay has been my survival instinct. The fear of losing this precious little gift is overwhelmed at best.
I will begin to download my heart into this blog as we prepare for surgery in 3 days. I hope you will find our blog and pray for Taeya for her coming surgery.
Linda
I have started this blog to keep a journal, of sorts, about my family, children and more specifically, my baby, Taeya Grace. Taeya had Down syndrome; an extra copy of the 21st chromosome. Developmentally, Taeya is close to the average 4 1/2 month old. She has other challenges that we face in the immediate future.
Taeya will have surgery this Thursday, October 20. While we have known this day would come, mentally and emotionally holding it at bay has been my survival instinct. The fear of losing this precious little gift is overwhelmed at best.
I will begin to download my heart into this blog as we prepare for surgery in 3 days. I hope you will find our blog and pray for Taeya for her coming surgery.
Linda
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