Happy Birthday Ivey Lou Who!
4.25.2013
4.19.2013
Home is home
We made it home tonight. Home sweet home. Coming home from a hospital stay is, unfortunately, nothing like coming home from a vacation. A continum of highs and lows, stress and trama. The days have been long, running into one another with no stop or start, just hours evolving into different dates.
Thank you to all of you who kept her in your cares. Thank you for keeping my boys safe. Thank you for all of the meals. Thank you to those who were my respite letting me take breaks.
Thank you to my friends for sharing your strength and singing my song.
Thank you to the staff and 4th floor nurses, our awesome physicians, Kim, and anyone else who laid hands on my daughter. X-ray, IR, vascular team, ER, family life, the cleaning staff. You are all priceless.
It is always the coming home that precedes the crash. The crash of the waves of humility in looking back and seeing all the true treasures, the people in our lives when we cannot stand alone.
Thank you to everyone.
As for Ivey she has been good this evening. Home is home. The witching hour hit around eight. Now she is sleeping snuggled next to her daddy.
All is well.
g.
....~***~....
Thank you to all of you who kept her in your cares. Thank you for keeping my boys safe. Thank you for all of the meals. Thank you to those who were my respite letting me take breaks.
Thank you to my friends for sharing your strength and singing my song.
Thank you to the staff and 4th floor nurses, our awesome physicians, Kim, and anyone else who laid hands on my daughter. X-ray, IR, vascular team, ER, family life, the cleaning staff. You are all priceless.
It is always the coming home that precedes the crash. The crash of the waves of humility in looking back and seeing all the true treasures, the people in our lives when we cannot stand alone.
Thank you to everyone.
As for Ivey she has been good this evening. Home is home. The witching hour hit around eight. Now she is sleeping snuggled next to her daddy.
All is well.
g.
....~***~....
4.18.2013
Thursday Update
Just a quick update:
Ivey had a x-ray this morning to check the location of the capsule. It is in one of the lower quadrants of the intestines. She cannot be discharged until the capsule is out of her....
She also went to IR to have her j-tube replaced. It was removed during the placement of the capsule.
The morning was a little rough with one seizure. However, this afternoon she is getting her groove back. Smiling. Playful. Terrorizing us by making the pulse-ox alarm every few seconds because she is kicking that leg of hers. This is the true sign that Ivey is almost back. She hates the pulse-ox on her toe.
The information from the capsule showed ... nothing. No lesions.
Still do not know the cause of the bleeding. But the lack of discovery has nothing to do with the effort that has gone into trying to find the cause.
As to going home, it should be soon. She must be rid of the capsule first. Her port also has to be checked because of it not functioning properly.
Tomorrow maybe, if, and only if, all of the stars align...
peace out... gwen * ivey
Ivey had a x-ray this morning to check the location of the capsule. It is in one of the lower quadrants of the intestines. She cannot be discharged until the capsule is out of her....
She also went to IR to have her j-tube replaced. It was removed during the placement of the capsule.
The morning was a little rough with one seizure. However, this afternoon she is getting her groove back. Smiling. Playful. Terrorizing us by making the pulse-ox alarm every few seconds because she is kicking that leg of hers. This is the true sign that Ivey is almost back. She hates the pulse-ox on her toe.
The information from the capsule showed ... nothing. No lesions.
Still do not know the cause of the bleeding. But the lack of discovery has nothing to do with the effort that has gone into trying to find the cause.
As to going home, it should be soon. She must be rid of the capsule first. Her port also has to be checked because of it not functioning properly.
Tomorrow maybe, if, and only if, all of the stars align...
peace out... gwen * ivey
4.16.2013
All the Same Day
Today was a lull day. These days are always the hardest in hospital stays. We are here. People float in and out of the room but overall we are at a lull in the waiting game. The waiting for something to happen. To avoid the hurt, we get up, get dressed and we walk the grounds of the hospital.
It is these times that I see what surrounds us here in this hospital. One, I am reminded that each floor, each room holds a child. This is a children's hospital. And in this place sits families temporarily split apart just like my family. It is a hard road somedays. Two, I always meet someone who makes me really think about, quite frankly, Life, and how fragile it really is.
It is this place and time in my life that makes my other life so difficult sometimes. I see the tragedy of this world play out in miraculous ways. Stunningly real life. It makes going back to the other life seem like shades of beige sometimes. Petty talk, meaningless worry, obsessing over the unimportant.
Here I am constantly reminded how fragile life is and at the same time when I look at my daughter I am reminded at how hard the human soul is willing to fight for that life.
Today Ivey and I went to the cafeteria to have lunch. While standing in line a little girl stood and pointed while asking her mom questions that I could not quite hear. The mom kneeled down and started pointing at Ivey too and talking to the little girl. I understood what was happening with no explanation.
I collected my food and rolled Ivey up to the little girl and asked if she would like to meet Ivey. She shook her head "no".
The mom went on the explain that the little girl had a sibling in the NICU, 1 month old, facial deformities, brain abnormalities. For a few moments, Ivey represented the tragedy of their moment... keep in mind we are dragging a pole loaded down with various pumps and machines all of which are attached to Ivey. The little girl was three. She was the same age as Knox when Ivey was born. I flashed to Knox, 3 years old, holding Ivey in the NICU singing "You've Got a Friend in Me".
Soon the dad joined us, kneeling in front of Ivey, asking me questions. Both parents had eyes glazed with tears and fear. Ivey and I represented their unimaginable. I pray, and ask you to pray, that their child lives to go home. That is their prayer.
With the lull in the medical mayhem I went down to do some laundry tonight. The laundry room takes courage to enter. By using the washer and dryer here you succumb to the normalcy of a prolonged stay. I always just want to go home in those minutes. Being there tells you there is no control. Life here is beyond control. Most of my tears shed in this hospital have always been in the laundry room.
Tonight I met a husband and wife with a 7 year old daughter just diagnosed with cancer. The dad asked me about the long stays. And then we spoke for a moment. But here, the fine details of life are often the only things discussed. He said, "When we heard the diagnosis, we thought it was the worst day of our lives. But now, it was one of our greatest days. We have seen amazing things in such a short amount of time." Ditto.
Here normal conversations aren't so normal.
But what is here is amazing. It is real living. Our children are teaching us. Each person and family has this amazing story. Each one has some heart break, but that is merely the start. Here we learn to be strong when there is no energy left. We learn to rise up when so many things say to stay down. We find our courage, it is courage we didn't even know we had. Here we are taught to see the beauty in the toughest of situations. I wonder what those two families, and those we have met along the way while here, have seen in Ivey?
Strength in adversity?
Finding a way to be all you can be despite the odds?
A miracle?
Or is it something ... heartbreaking
I don't know. Here you see so much in one small space. There sometimes are really no words.
To watch and be a part of Ivey's tough days is a lot to shoulder. Some days that cross gets awfully heavy. Backbreaking. Despite that, it is humbling and inspiring to know that there are others walking this road, different cause, same road, yet we share a journey, this journey, with them. It really makes this easier. I honestly believe that God aligns those stars. God puts in our paths the people we need. The family in the cafeteria, they are beginning a journey that is so similar to one we started almost seven years ago. Today, she needed to see that she would survive, her family would survive - they are more than one tragic diagnosis.
I needed to see just how far I have come.
I needed to that today.
When the mom looked at me and whispered her child may not go home, my heart broke remembering that untapped fear. It is primal fear. It is a fear that Never stops pumping in your veins once it enters. Ever. I have merely learned to control it. On occasion.
Sometimes, on most days.
As she said those words she looked down to her little 3 year old and looked back at me. I know that searing pain too well. The inability to fix things for our children. Make it all better. It's a mother's fear to not be able to protect our children from the worst of pains. Back in our life outside of this hospital moms are battling for their children to be the best, but I don't understand why they aren't fighting as hard for them to be resilient. Siblings here learn that lesson the hard way, it is instilled in their souls.
Today the mom saw Ivey, playing, smiling and she saw me thriving in a world that is now her new normal.
I hope she took that vision with her.
Here we know when we talk about our children there will be no sad faces, only looks of understanding. Here there are only words of encouragement. Battles cries to one another if you will. It all happens all in one blink, all the same day.
And our lesson.
We learn that sometimes our worst day and our greatest day are all the same day.
+
It is these times that I see what surrounds us here in this hospital. One, I am reminded that each floor, each room holds a child. This is a children's hospital. And in this place sits families temporarily split apart just like my family. It is a hard road somedays. Two, I always meet someone who makes me really think about, quite frankly, Life, and how fragile it really is.
It is this place and time in my life that makes my other life so difficult sometimes. I see the tragedy of this world play out in miraculous ways. Stunningly real life. It makes going back to the other life seem like shades of beige sometimes. Petty talk, meaningless worry, obsessing over the unimportant.
Here I am constantly reminded how fragile life is and at the same time when I look at my daughter I am reminded at how hard the human soul is willing to fight for that life.
Today Ivey and I went to the cafeteria to have lunch. While standing in line a little girl stood and pointed while asking her mom questions that I could not quite hear. The mom kneeled down and started pointing at Ivey too and talking to the little girl. I understood what was happening with no explanation.
I collected my food and rolled Ivey up to the little girl and asked if she would like to meet Ivey. She shook her head "no".
The mom went on the explain that the little girl had a sibling in the NICU, 1 month old, facial deformities, brain abnormalities. For a few moments, Ivey represented the tragedy of their moment... keep in mind we are dragging a pole loaded down with various pumps and machines all of which are attached to Ivey. The little girl was three. She was the same age as Knox when Ivey was born. I flashed to Knox, 3 years old, holding Ivey in the NICU singing "You've Got a Friend in Me".
Soon the dad joined us, kneeling in front of Ivey, asking me questions. Both parents had eyes glazed with tears and fear. Ivey and I represented their unimaginable. I pray, and ask you to pray, that their child lives to go home. That is their prayer.
With the lull in the medical mayhem I went down to do some laundry tonight. The laundry room takes courage to enter. By using the washer and dryer here you succumb to the normalcy of a prolonged stay. I always just want to go home in those minutes. Being there tells you there is no control. Life here is beyond control. Most of my tears shed in this hospital have always been in the laundry room.
Tonight I met a husband and wife with a 7 year old daughter just diagnosed with cancer. The dad asked me about the long stays. And then we spoke for a moment. But here, the fine details of life are often the only things discussed. He said, "When we heard the diagnosis, we thought it was the worst day of our lives. But now, it was one of our greatest days. We have seen amazing things in such a short amount of time." Ditto.
Here normal conversations aren't so normal.
But what is here is amazing. It is real living. Our children are teaching us. Each person and family has this amazing story. Each one has some heart break, but that is merely the start. Here we learn to be strong when there is no energy left. We learn to rise up when so many things say to stay down. We find our courage, it is courage we didn't even know we had. Here we are taught to see the beauty in the toughest of situations. I wonder what those two families, and those we have met along the way while here, have seen in Ivey?
Strength in adversity?
Finding a way to be all you can be despite the odds?
A miracle?
Or is it something ... heartbreaking
I don't know. Here you see so much in one small space. There sometimes are really no words.
To watch and be a part of Ivey's tough days is a lot to shoulder. Some days that cross gets awfully heavy. Backbreaking. Despite that, it is humbling and inspiring to know that there are others walking this road, different cause, same road, yet we share a journey, this journey, with them. It really makes this easier. I honestly believe that God aligns those stars. God puts in our paths the people we need. The family in the cafeteria, they are beginning a journey that is so similar to one we started almost seven years ago. Today, she needed to see that she would survive, her family would survive - they are more than one tragic diagnosis.
I needed to see just how far I have come.
I needed to that today.
When the mom looked at me and whispered her child may not go home, my heart broke remembering that untapped fear. It is primal fear. It is a fear that Never stops pumping in your veins once it enters. Ever. I have merely learned to control it. On occasion.
Sometimes, on most days.
As she said those words she looked down to her little 3 year old and looked back at me. I know that searing pain too well. The inability to fix things for our children. Make it all better. It's a mother's fear to not be able to protect our children from the worst of pains. Back in our life outside of this hospital moms are battling for their children to be the best, but I don't understand why they aren't fighting as hard for them to be resilient. Siblings here learn that lesson the hard way, it is instilled in their souls.
Today the mom saw Ivey, playing, smiling and she saw me thriving in a world that is now her new normal.
I hope she took that vision with her.
Here we know when we talk about our children there will be no sad faces, only looks of understanding. Here there are only words of encouragement. Battles cries to one another if you will. It all happens all in one blink, all the same day.
And our lesson.
We learn that sometimes our worst day and our greatest day are all the same day.
+
4.15.2013
Monday
Moving Ivey around is painful for her. However, she has to move. Being too still makes her stiff and seems to hurt around her incision more. She is still on morphine every few hours to help control the pain.
Yesterday we started Ivey back on her feeds. She has not had a feeding via j-tube since last Wednesday, so this is a test to see how she handles it. She has been on a continual feed on half-strength formula with us titrating the volume up over the hours. At nine o'clock tonight she switched to full strength formula.
I think everyone is holding their breath to see if this triggers her intestines to bleed again.
It looks like Ivey will be here several more days. No definite exit date has been established at this point. This is inspite of my constant, incessant, pestering to try to convince Dr. Meyers to pin-point a exit strategy and date. So to appease me, he said to plan through the weekend.
It look like Ivey will have a capsule placed in her GI tract on Wednesday in hopes to locate the source and cause of the bleed.
And for those who know and those who may not know... Matt also had surgery this past Friday. He is doing okay. He is in ALOT of pain. He had surgery to straighten out his deviated septum. For the record, his pain medicine has made him completely loopy. Not one conversation with him is coherent. I hate that I am here and not able to take care of him when he is in so much pain. I also hate that I am here and missing out of some great blackmail opportunities on my husband while he is taking pain medication for that deviated septum surgery. Fortunately, his parents have been helping him on the home front. And some awesomely great friends and family have taken the boys under their wings. And as always, the Godparents have stepped up and loved on the boys while we are away.
Thank you to everyone who is preparing meals for my boys at home. Thank you for all the well-wishes and prayers. We are all very grateful. Being away from home is never easy.
Until tomorrow..... +
4.14.2013
Saturday night update
There is nothing to tell. Ivey slept well. She had a rockstar nurse. The real kind who floats in, gives meds, checks vitals, changes diapers, fluffs pillows, rotates Ivey and never disturbed her. Salt of the earth. I didn't have to do anything. So Ivey and I both slept. I have a feeling this is going to be a great day!
4.13.2013
Med Update from Scottish Rite
Ivey was admitted into Scottish Rite on Wednesday afternoon. She started having bloody stools in the 24 hours prior to her admission. Ivey saw her GI physician on Wednesday morning, after leaving his office he called us at home and requested we take her straight back to the ER at Scottish Rite. So here we are.
After Ivey's admittance on Wednesday her stools had an increase in blood. Several tests were performed to try and determine where the bleeding was coming from in her intestines. At first the physicians thought she might have something called Meckel's diverticulum. Meckel's is present at birth, so to have it, you must be born with it. After much searching, it has been ruled out. Ivey does not have Meckel's. No one is certain what is causing the bleeding. The most likely causes have been ruled out. The other causes that remain have to be narrowed down and pin-pointed.
Due to the amount of blood being lost, Ivey's hemoglobin levels dropped. Ivey has had two blood transfusions thus far. Ivey had a blood transfusion on Thursday and again on Friday. We are watching the hemoglobin levels closely.
Friday night Ivey was taken back for surgery to find the source of the bleed in the intestines. Originally the surgeon tried to find the source by going through laproscopically through her belly button. He could not find the source and had to open her up. She has an incision from her mic-key button down to right above her pubic bone. The surgeon went over her intestines 7 or 8 times but could not find the source of the bleed. During that time the bleeding stopped. So he could not clamp off the intestines to see where blood would pool in the intestine. So he closed her up.
Now we wait for the bleed to begin again. Ivey's GI doc is trying to figure this out and determine which test will be the optimal to run next that will best locate the source of the bleeding. Its a needle in a haystack.
She is pretty banged up and really sore. She is on Morphine and Ativan. Her port access had to be disconnected last night. It would flush but would not get a blood return. The port has been accessed for the transfusions so that she did not have to be stuck every time they needed blood to check her blood count. Without the port her little arms are bruised from all the sticks. They look like a pin cushion. Fortunately the phlebotomists are great - one stick each time and they get blood. She also had two lines, one in each arm, for the surgery last night. One finally blew, so its a pretty bruise. The other is holding and being used for her fluids.
We are always fortunate with Ivey's physicians. Her GI doctor has been with her since the very beginning, literally day one. So he knows her well, better than anyone. He has been a part of every surgery, hospital stay and all the days in between. All of which makes us feel safe. He knows her history. She is in good hands, excellent hands.
But in true Ivey fashion - she has thrown a curve ball.
After Ivey's admittance on Wednesday her stools had an increase in blood. Several tests were performed to try and determine where the bleeding was coming from in her intestines. At first the physicians thought she might have something called Meckel's diverticulum. Meckel's is present at birth, so to have it, you must be born with it. After much searching, it has been ruled out. Ivey does not have Meckel's. No one is certain what is causing the bleeding. The most likely causes have been ruled out. The other causes that remain have to be narrowed down and pin-pointed.
Due to the amount of blood being lost, Ivey's hemoglobin levels dropped. Ivey has had two blood transfusions thus far. Ivey had a blood transfusion on Thursday and again on Friday. We are watching the hemoglobin levels closely.
Friday night Ivey was taken back for surgery to find the source of the bleed in the intestines. Originally the surgeon tried to find the source by going through laproscopically through her belly button. He could not find the source and had to open her up. She has an incision from her mic-key button down to right above her pubic bone. The surgeon went over her intestines 7 or 8 times but could not find the source of the bleed. During that time the bleeding stopped. So he could not clamp off the intestines to see where blood would pool in the intestine. So he closed her up.
Now we wait for the bleed to begin again. Ivey's GI doc is trying to figure this out and determine which test will be the optimal to run next that will best locate the source of the bleeding. Its a needle in a haystack.
She is pretty banged up and really sore. She is on Morphine and Ativan. Her port access had to be disconnected last night. It would flush but would not get a blood return. The port has been accessed for the transfusions so that she did not have to be stuck every time they needed blood to check her blood count. Without the port her little arms are bruised from all the sticks. They look like a pin cushion. Fortunately the phlebotomists are great - one stick each time and they get blood. She also had two lines, one in each arm, for the surgery last night. One finally blew, so its a pretty bruise. The other is holding and being used for her fluids.
We are always fortunate with Ivey's physicians. Her GI doctor has been with her since the very beginning, literally day one. So he knows her well, better than anyone. He has been a part of every surgery, hospital stay and all the days in between. All of which makes us feel safe. He knows her history. She is in good hands, excellent hands.
But in true Ivey fashion - she has thrown a curve ball.
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