One of the many pleasures of parenting is the music. This morning, I woke up humming. "This little light of mine, I'm gonna let it shine!"
It is a long weekend. No one is here. The hospital is mostly empty. The cafe is closed. My doctors are not here. My nurses are not here. So far, the only familiar faces are the resident (God bless the medical residents. They never go home!) and the front desk staff. This depleted staff will not send my baby home.
"Won't let Satan 'poof' it out, I'm gonna let it shine!"
It is easy to slip into self-pity. That is not from God. God has blessed me enormously, and I will not let Satan's whispers muffle God's voice.
It is harder to be patient, as homecoming feels more imminent. Sarah looks well and seems happy. I will spend a few hours with my family having a Thanksgiving feast today. Soon we will be going home. Not today, and not as soon as I had hoped, but soon.
It is a beautiful day. Lily is singing. Sarah slept all night again, so I slept all night again. The sun is shining. The Son is my light, and He fills my life with joy.
"Let it shine, let it shine, let it shine!"
Thursday, November 24, 2011
Wednesday, November 23, 2011
Well, it is the eve of Thanksgiving. I am still typing on a fussy wireless keyboard in the NICU, hoping I don't make too many egregious mistakes.
Sarah's g-tube was placed on wednesday a week ago. Last week I was discouraged when Sarah threw up, just after surgery. It set back feeding by two days. Two days is forever when you are counting down days to go home. Yesterday I was discouraged when, at the end of the day, I got sick. I do not know whether it was the republican debate or the hospital cafeteria salad that did it, but it was awful. I left without even kissing my baby goodbye. Today, I am determined to stay encouraged. It is Thanksgiving, after all. Here is what I am thankful for this year:
I have two beautiful daugters. They delight and amaze me every day.
My husband. He has kept this family focused on Christ, even, maybe especially, when things seem hardest. Sometimes when it has been a few nights since we have seen each other, I miss him awfully. I have to remember what a blessing that ache is. I love and am loved by a wonderful man.
My parents have provided food, rides, support and love. Mom put up, and kept up to date, the caring bridge page. They kept Lily singing and praying. Importantly, they provided consistency through the chaos for Lily.
Which leads me to Aunt Kathie, who came into town expecting to help me at home with a baby but instead was a full time caregiver for a three year old. Sarah and Lily's (truly) Great Aunt made the impossible possible. Figuring out DC traffic so that Lily could come in and out of the city.
Martha, Ann, Denise, Michelle, Jackie-- above and beyond.
Sarah has the best possible care. She is doing better than anyone who met her in her first week imagined. This hospital is amazing, but even before she was born she was cared for by a whole slew of caring, intelligent, amazing doctors.
We have health insurance. Really good health insurance. The tests, the surgeries, the consults, the ICU- It is a blessing to be able to consider what Sarah needs without worrying about money.
Friends. We have made new friends here. Our old friends have been amazingly supportive. We are blessed to have the company of such wonderful people.
Community. St. Paul's community embraced us with prayer and support. St. Paul's Church has had us, at times, wondering why we left Maryland. St. John's, thankfully, reminds us that there is a vibrant and warm community in VA as well. They, who do not know us yet, have reached out as well. We have felt the warmth of being wrapped and raised up in prayer.
Our neighbors are awesome.
Our faith. It is easy to forget that Faith is a gift. Ours has sustained us this year. This year, God told us, very clearly, that going through the motions is not and never was enough. He used difficulty to direct us toward Him.
Music. Lily sings and our hearts are lifted. The radio plays a song with just the message I needed in that moment. I leave Church humming. Pandora makes the hospital room a little less hospital-like. I am thankful for music.
We have our own home.
We have food.
We even have coffee.
With all of these blessings, I refuse to be discourged that the doctor cannot tell me when we can go home. We have to get the sign off from so many teams- it will not happen tomorrow. But, tomorrow is Thanksgiving, and on Thanksgiving, Sarah will be eating more than she ever has- just like the rest of us. She will be getting full amount of food the needs by tomorrow. That has been what we have been told was the final benchmark for her to go home. So, benchmarks accomplished, we go home soon. Just as soon as neurosurgery, plasic surgery, ENT, nefrology, pulmonary, general surgery and (of course) our own NICU team say she can go. Maybe cardiology too. But they will because, as Lily told me, "Sarah is fine now. So we should all go home to sleep."
Sarah's g-tube was placed on wednesday a week ago. Last week I was discouraged when Sarah threw up, just after surgery. It set back feeding by two days. Two days is forever when you are counting down days to go home. Yesterday I was discouraged when, at the end of the day, I got sick. I do not know whether it was the republican debate or the hospital cafeteria salad that did it, but it was awful. I left without even kissing my baby goodbye. Today, I am determined to stay encouraged. It is Thanksgiving, after all. Here is what I am thankful for this year:
I have two beautiful daugters. They delight and amaze me every day.
My husband. He has kept this family focused on Christ, even, maybe especially, when things seem hardest. Sometimes when it has been a few nights since we have seen each other, I miss him awfully. I have to remember what a blessing that ache is. I love and am loved by a wonderful man.
My parents have provided food, rides, support and love. Mom put up, and kept up to date, the caring bridge page. They kept Lily singing and praying. Importantly, they provided consistency through the chaos for Lily.
Which leads me to Aunt Kathie, who came into town expecting to help me at home with a baby but instead was a full time caregiver for a three year old. Sarah and Lily's (truly) Great Aunt made the impossible possible. Figuring out DC traffic so that Lily could come in and out of the city.
Martha, Ann, Denise, Michelle, Jackie-- above and beyond.
Sarah has the best possible care. She is doing better than anyone who met her in her first week imagined. This hospital is amazing, but even before she was born she was cared for by a whole slew of caring, intelligent, amazing doctors.
We have health insurance. Really good health insurance. The tests, the surgeries, the consults, the ICU- It is a blessing to be able to consider what Sarah needs without worrying about money.
Friends. We have made new friends here. Our old friends have been amazingly supportive. We are blessed to have the company of such wonderful people.
Community. St. Paul's community embraced us with prayer and support. St. Paul's Church has had us, at times, wondering why we left Maryland. St. John's, thankfully, reminds us that there is a vibrant and warm community in VA as well. They, who do not know us yet, have reached out as well. We have felt the warmth of being wrapped and raised up in prayer.
Our neighbors are awesome.
Our faith. It is easy to forget that Faith is a gift. Ours has sustained us this year. This year, God told us, very clearly, that going through the motions is not and never was enough. He used difficulty to direct us toward Him.
Music. Lily sings and our hearts are lifted. The radio plays a song with just the message I needed in that moment. I leave Church humming. Pandora makes the hospital room a little less hospital-like. I am thankful for music.
We have our own home.
We have food.
We even have coffee.
With all of these blessings, I refuse to be discourged that the doctor cannot tell me when we can go home. We have to get the sign off from so many teams- it will not happen tomorrow. But, tomorrow is Thanksgiving, and on Thanksgiving, Sarah will be eating more than she ever has- just like the rest of us. She will be getting full amount of food the needs by tomorrow. That has been what we have been told was the final benchmark for her to go home. So, benchmarks accomplished, we go home soon. Just as soon as neurosurgery, plasic surgery, ENT, nefrology, pulmonary, general surgery and (of course) our own NICU team say she can go. Maybe cardiology too. But they will because, as Lily told me, "Sarah is fine now. So we should all go home to sleep."
Saturday, November 12, 2011
silos
When Lily was learning to count, among the first things she counted were the silos on the farm. There were three; three is easy. She would count them every time we went for a walk, which was most days in good weather. As she got better at counting, she still counted the three silos every time we walked by them.
Around that time, we took Lily to a city where she encountered towering buildings of many denominations. "Silos!"
We tried to explain what a silo is, and that those buildings were not silos but we stumbled a bit because the silos on the farm are not in use. They are not full of food for animals, or anything else. They are just impressively tall buildings.
Lily did learn, somehow, in spite of her parents' stumbling, what a silo is.
Shortly after Sarah was born, and immediately hospitalized, Lily did not want to go for walks on the farm anymore. She had always loved her walks, so we pressed a little. Lily was afraid of the silos. Startled, and worried, we wondered why. "They are going to fall down."
The world had been rocked and things seem to be falling apart. What do we tell her? Is it reading too much into her brilliant little mind to have heard a terrible fear of instability?
It was only a week ago when I admitted to myself that my daughter was living out of a suitcase- and so I bought a suitcase. That may well have been the most emotional purchase I have ever made. I found a leaflet in the NICU which discussed what to expect out of siblings of NICU babies. Potty training regression. (check.) Temper tantrums. (check.) More clingy and sensitive than normal. (check.) On and on the list went with predictable familiarity. Then I read the list of feelings which the sibling might be experiencing: they do not understand; they blame themselves; they are afraid they will get sick and get stuck in the NICU; they are jealous.
What could I say to alleviate her fear? I wanted to gather her up and tell her that everything would be fine. Soon, life would go back to normal.
Sometimes silos fall.
On Halloween Lily wanted to be a butterfly fairy. Or a princess. Or a butterfly princess. Or a fairy princess. let there be pink! Let it sparkle! Let there be magic and flying! Let it be beautiful, light and happy!
I was not going to be around to go trick-or-treating, so I took Lily for a walk in her costume. Skipping down the road, she used her magic wand to turn the cows into frogs. She turned a puddle into a mirror. She turned me into a pirate. Uncle Chuck and his dog, Jethro, were threatened.
Then we arrived at the silos.
A meltdown? Would I have to carry her home?
Lily lifted her wand and waving it around proclaimed that the silos were beautiful towers! One purple, one pink and one blue!
We had a family meeting on Thursday to talk about Sarah. We have not had these meetings as often as one might like or expect; this in only the second. At the first, two month ago, our doctors looked at serious problems with five major organs and told us to say goodbye to our precious child. Now, the kidneys are fine; they cannot find evidence of the earlier finding. The liver is fine; despite all evidence, she never had biliary atresia. Her heart is fine. Her lungs are fine. Her brain is fine. Our baby is going home! One serious concern after another melted away.
Next week, Sarah will have a surgery to place a tube in her belly. She cannot coordinate sucking and swallowing yet, and this tube is a better option than the tube she currently has which goes through her mouth. (no danger of aspiration, and no gagging.) When she heals, we go home. It could be a few days, it could be as long as a few weeks. But we are going home soon. Miracles abound!
Through everything, we have depended on our family, our friends and our faith. Our relationships are stronger. Our faith is deeper. Our marriage is better.
We will have to create a new "normal." But I think Lily is right. Our silos are beautiful towers.
Around that time, we took Lily to a city where she encountered towering buildings of many denominations. "Silos!"
We tried to explain what a silo is, and that those buildings were not silos but we stumbled a bit because the silos on the farm are not in use. They are not full of food for animals, or anything else. They are just impressively tall buildings.
Lily did learn, somehow, in spite of her parents' stumbling, what a silo is.
Shortly after Sarah was born, and immediately hospitalized, Lily did not want to go for walks on the farm anymore. She had always loved her walks, so we pressed a little. Lily was afraid of the silos. Startled, and worried, we wondered why. "They are going to fall down."
The world had been rocked and things seem to be falling apart. What do we tell her? Is it reading too much into her brilliant little mind to have heard a terrible fear of instability?
It was only a week ago when I admitted to myself that my daughter was living out of a suitcase- and so I bought a suitcase. That may well have been the most emotional purchase I have ever made. I found a leaflet in the NICU which discussed what to expect out of siblings of NICU babies. Potty training regression. (check.) Temper tantrums. (check.) More clingy and sensitive than normal. (check.) On and on the list went with predictable familiarity. Then I read the list of feelings which the sibling might be experiencing: they do not understand; they blame themselves; they are afraid they will get sick and get stuck in the NICU; they are jealous.
What could I say to alleviate her fear? I wanted to gather her up and tell her that everything would be fine. Soon, life would go back to normal.
Sometimes silos fall.
On Halloween Lily wanted to be a butterfly fairy. Or a princess. Or a butterfly princess. Or a fairy princess. let there be pink! Let it sparkle! Let there be magic and flying! Let it be beautiful, light and happy!
I was not going to be around to go trick-or-treating, so I took Lily for a walk in her costume. Skipping down the road, she used her magic wand to turn the cows into frogs. She turned a puddle into a mirror. She turned me into a pirate. Uncle Chuck and his dog, Jethro, were threatened.
Then we arrived at the silos.
A meltdown? Would I have to carry her home?
Lily lifted her wand and waving it around proclaimed that the silos were beautiful towers! One purple, one pink and one blue!
We had a family meeting on Thursday to talk about Sarah. We have not had these meetings as often as one might like or expect; this in only the second. At the first, two month ago, our doctors looked at serious problems with five major organs and told us to say goodbye to our precious child. Now, the kidneys are fine; they cannot find evidence of the earlier finding. The liver is fine; despite all evidence, she never had biliary atresia. Her heart is fine. Her lungs are fine. Her brain is fine. Our baby is going home! One serious concern after another melted away.
Next week, Sarah will have a surgery to place a tube in her belly. She cannot coordinate sucking and swallowing yet, and this tube is a better option than the tube she currently has which goes through her mouth. (no danger of aspiration, and no gagging.) When she heals, we go home. It could be a few days, it could be as long as a few weeks. But we are going home soon. Miracles abound!
Through everything, we have depended on our family, our friends and our faith. Our relationships are stronger. Our faith is deeper. Our marriage is better.
We will have to create a new "normal." But I think Lily is right. Our silos are beautiful towers.
Thursday, October 13, 2011
The baby is crying1
Lily told Sarah, "you need to get rid of that tube, so we can all go home." Sarah is breathing, on her own. We are not ready to go home, but Sarah is breathing. I have never been so thrilled to hear a baby cry!
Monday, October 10, 2011
Wonders and signs
I cannot believe how long it has been since I have posted here! Time flies in the hospital, believe it or not. I kind of feel like the rest of the world should be pause, since I am not there. Weeks fly by, and my newborn celebrated one month since her birthday on the feast of our Lady of the Rosary.
A bit of business before I forget: My mother has been keeping a caring bridge website up to date with information about little Sarah.
It amazes me how well God knows me. It amazes me every time He gives me a boost every time I need one, and often before I have thought to ask.
When Josh and I drove away from the doctor where we first learned that there was something wrong with the pregnancy, we were silent. We were afraid. I did not know how to process the information, and certainly I did not know how to handle it. We had the radio on, as always in the car, to Lily's favorite radio station which plays contemporary Christian music. The song came on I will walk by Faith, whose lyrics include the lines,
As we wondered about our peanut sized child, we worried. We worried about problems we could not see which would inevitably put us on a path we could not predict. Would we hear His voice? Would we listen? It is hard to walk in faith when you really cannot see- but I guess that's what faith is. I cried as I listened, and I knew that Josh and I would do the best we could to listen to God's voice, and to simply trust that He listens to us.
Later, when Sarah was born, the prognosis was worse than we expected- though certainly not out of the realm of what we spoken to our doctors about. We were "prepared." Nothing can prepare you to to hear that your child is not expected to live. When wecame out of the meeting with the doctors, our older daughter Lily, gave us the pictures she had been working- pictures of Sarah under a rainbow. God is in control. We are not, but He loves us and whatever happens, He will take care of our baby.
Another time, when I had just said goodbye, again, to Lily and climbed in the car to drive away I felt that now familiar tear. Lily ask questions. Where are you going? When will you be back? Can you just bring Sarah home now? I began to cry and for the first time wonder if I could do this. I was tired, and getting more tired. Lily missed home. Sarah's emotional needs, slip down on the priority list. How long had it been since I slept in the same house as my husband? Can I do this? Again, it was the radio delivering the message: a song I did not know came on and the line I heard was, "I can do all things, through Christ who gives me strength." Chin up. God will not give me more than I can handle.
My brother, Mark, forbid me to try and think about everything at the same time. Just deal with one thing at a time. I try. Just take one step, and then another. And when there are setbacks, try not to dwell on the regression. Just keep taking steps forward.
Magnificat magazine quoted St. John Chysostom:
"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men. For, if we ourselves do not succomb unrestrainedly to grief, he will qickly take away the portion of grief we feel; whereas. if we give way to excessive grief, he will permit us to become entirely possessed by it. If we give thanks for it, we shall not be disheartened."
I thought the quote applied well to fear and I have thought of it often since I read it. Mark's and St. John's advice, sound similar to me and I try to keep them both in mind.
Sunday morning was particularly difficult. We had been discussing taking the tube out and letting Sarah breathe on her own. We were thrilled that she seemed to be making progress. Then she ad a particularly bad day which culminated in self-extubation (she took the tube out witout the doctor's permission!)- twice! Twice in six hours. It was a pretty major setback. The more than doubled her sedation to be sure it did not happen again, and we stopped talking about getting he ff the vent. Suddenly, we were talking about a Trache.
As things started to settle, in an artficially induced calm, I realized that the peace Josh and I had been experiencing was missing. I was not just fearful, I did not know how to hold my head up. I realized that just in those few days of relative calm I had settled into old habits- forgetting to pray or praying short memorized and unfelt prayers. I do not blame myself for her episode of agitation, but my lapse in faith was certainly why I had been unable to face these problems. I told myself that I did not have to go to Church that day- my daughter's health was a valid excuse. I am still pretty sure that I could convince most people that it was a valid excuse. God knew, better than I, that I just did not want to face Him. I was feeling sorry for myself and pleased to immerse myself in my problems.
I went to the hospital chapel, where there was supposed to be mass. I knew I was too late, and I knew it. But it soothed my conscience to make an active effort to get to Church. The chapel was empty. There on the table, someone had left a pile of prayer cards with the following prayer:
I went to Chuch, and the priest preached about missing Mass. The Psalm was psalm 23: The Lord is my shepherd! Again and again, just when I need to hear God's voice, He speaks. These days, the message is not subtle. God's grace is all I need. His strength, not mine, will carry me. His wisdom, not mine, must lead.
A bit of business before I forget: My mother has been keeping a caring bridge website up to date with information about little Sarah.
It amazes me how well God knows me. It amazes me every time He gives me a boost every time I need one, and often before I have thought to ask.
When Josh and I drove away from the doctor where we first learned that there was something wrong with the pregnancy, we were silent. We were afraid. I did not know how to process the information, and certainly I did not know how to handle it. We had the radio on, as always in the car, to Lily's favorite radio station which plays contemporary Christian music. The song came on I will walk by Faith, whose lyrics include the lines,
Would I believe you when you would say
Your hand will guide my every way?
Will I receive the words You say
Every moment of every day?
Well, I will walk by faith
Even when I cannot see.
As we wondered about our peanut sized child, we worried. We worried about problems we could not see which would inevitably put us on a path we could not predict. Would we hear His voice? Would we listen? It is hard to walk in faith when you really cannot see- but I guess that's what faith is. I cried as I listened, and I knew that Josh and I would do the best we could to listen to God's voice, and to simply trust that He listens to us.
Later, when Sarah was born, the prognosis was worse than we expected- though certainly not out of the realm of what we spoken to our doctors about. We were "prepared." Nothing can prepare you to to hear that your child is not expected to live. When wecame out of the meeting with the doctors, our older daughter Lily, gave us the pictures she had been working- pictures of Sarah under a rainbow. God is in control. We are not, but He loves us and whatever happens, He will take care of our baby.
Another time, when I had just said goodbye, again, to Lily and climbed in the car to drive away I felt that now familiar tear. Lily ask questions. Where are you going? When will you be back? Can you just bring Sarah home now? I began to cry and for the first time wonder if I could do this. I was tired, and getting more tired. Lily missed home. Sarah's emotional needs, slip down on the priority list. How long had it been since I slept in the same house as my husband? Can I do this? Again, it was the radio delivering the message: a song I did not know came on and the line I heard was, "I can do all things, through Christ who gives me strength." Chin up. God will not give me more than I can handle.
My brother, Mark, forbid me to try and think about everything at the same time. Just deal with one thing at a time. I try. Just take one step, and then another. And when there are setbacks, try not to dwell on the regression. Just keep taking steps forward.
Magnificat magazine quoted St. John Chysostom:
"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men. For, if we ourselves do not succomb unrestrainedly to grief, he will qickly take away the portion of grief we feel; whereas. if we give way to excessive grief, he will permit us to become entirely possessed by it. If we give thanks for it, we shall not be disheartened."
I thought the quote applied well to fear and I have thought of it often since I read it. Mark's and St. John's advice, sound similar to me and I try to keep them both in mind.
Sunday morning was particularly difficult. We had been discussing taking the tube out and letting Sarah breathe on her own. We were thrilled that she seemed to be making progress. Then she ad a particularly bad day which culminated in self-extubation (she took the tube out witout the doctor's permission!)- twice! Twice in six hours. It was a pretty major setback. The more than doubled her sedation to be sure it did not happen again, and we stopped talking about getting he ff the vent. Suddenly, we were talking about a Trache.
As things started to settle, in an artficially induced calm, I realized that the peace Josh and I had been experiencing was missing. I was not just fearful, I did not know how to hold my head up. I realized that just in those few days of relative calm I had settled into old habits- forgetting to pray or praying short memorized and unfelt prayers. I do not blame myself for her episode of agitation, but my lapse in faith was certainly why I had been unable to face these problems. I told myself that I did not have to go to Church that day- my daughter's health was a valid excuse. I am still pretty sure that I could convince most people that it was a valid excuse. God knew, better than I, that I just did not want to face Him. I was feeling sorry for myself and pleased to immerse myself in my problems.
I went to the hospital chapel, where there was supposed to be mass. I knew I was too late, and I knew it. But it soothed my conscience to make an active effort to get to Church. The chapel was empty. There on the table, someone had left a pile of prayer cards with the following prayer:
Nade te turbe,Nade te espante,
Todo se pasa,
Dios no se muda,
la patiencia
todo la alcanza.
Quien a Dios tienenada le falta,
solo dios basta.
Let nothing disturb thee;
Let nothing dismay thee;
All things pass: God never changes.
Patience attains
all that it strives for.
He who has God
lacks for nothing:
God alone suffices.
St. Therea of Avila
I went to Chuch, and the priest preached about missing Mass. The Psalm was psalm 23: The Lord is my shepherd! Again and again, just when I need to hear God's voice, He speaks. These days, the message is not subtle. God's grace is all I need. His strength, not mine, will carry me. His wisdom, not mine, must lead.
Saturday, September 24, 2011
How do you choose between your children when they both have needs, but their needs are mutually exculsive? I only have two kids, and my second is only two weeks old. This is a new question for me.
Sarah is in the hospital. She is in good hands, between the many doctors, nurses and therapists who visit her every day. But she is recovering from major surgery, and facing still more. It feels wrong to leave her side.
Lily too is in good hands. She is staying at my parents' house, and my aunt with her every day. But, she is used to having Mommy with her most of the time, and I am not. She is used to being the center of my attention, and now she is not. It can be hard when a new sibling comes along, under any circumstance. Here, the new sibling came, and forced Mommy and Daddy to stay away for days at a time. It is hard for Lily, and though I think she is bearing it well, she is certainly showing signs that she is struggling. She has more temper tantrums and she wants to snuggle more. She makes more demands, and her manners have deteriorated. The heart ache, however, comes from her quickness to fall into tears. She rarely cried before. It is awful. I do not want to leave her, even in the capable and loving hands of my family.
Maybe I will take the nurses up on their many offers to put me in touch with an organization that is set up to help parents wade throught these questions with thteir children. I have resisted it thus far. I don't know why.
Part of me wants to shower them both with gifts, I guess because I feel like they are getting inadequate Mommy time. I have mostly resisted the impulse; I know it is not the right thing to do. But Lily did get a little set of Hello Kitty chapsticks.
I took Lily tot he gift shop yesterday to pick out a present for Sarah. (If it is from Lly, it is a lesson, not an unnecessary gift, right?) She chose a little, blue teddy bear. She gave it toSarah, and has, since then, every time she comes in the room, checked to make sure that Sarah can reach her teddy bear. The nurses know it is a gift from Lily, so they tuck it in with Sarah.
I tell myself that I should be counting my blessings. I have been considering how long we will be in the hospital. How long can we sustain this? I should focus on the miracle: I am indeed planning to have both of my girls home together. I do not know when, but I do expect it to happen.
Sarah is in the hospital. She is in good hands, between the many doctors, nurses and therapists who visit her every day. But she is recovering from major surgery, and facing still more. It feels wrong to leave her side.
Lily too is in good hands. She is staying at my parents' house, and my aunt with her every day. But, she is used to having Mommy with her most of the time, and I am not. She is used to being the center of my attention, and now she is not. It can be hard when a new sibling comes along, under any circumstance. Here, the new sibling came, and forced Mommy and Daddy to stay away for days at a time. It is hard for Lily, and though I think she is bearing it well, she is certainly showing signs that she is struggling. She has more temper tantrums and she wants to snuggle more. She makes more demands, and her manners have deteriorated. The heart ache, however, comes from her quickness to fall into tears. She rarely cried before. It is awful. I do not want to leave her, even in the capable and loving hands of my family.
Maybe I will take the nurses up on their many offers to put me in touch with an organization that is set up to help parents wade throught these questions with thteir children. I have resisted it thus far. I don't know why.
Part of me wants to shower them both with gifts, I guess because I feel like they are getting inadequate Mommy time. I have mostly resisted the impulse; I know it is not the right thing to do. But Lily did get a little set of Hello Kitty chapsticks.
I took Lily tot he gift shop yesterday to pick out a present for Sarah. (If it is from Lly, it is a lesson, not an unnecessary gift, right?) She chose a little, blue teddy bear. She gave it toSarah, and has, since then, every time she comes in the room, checked to make sure that Sarah can reach her teddy bear. The nurses know it is a gift from Lily, so they tuck it in with Sarah.
I tell myself that I should be counting my blessings. I have been considering how long we will be in the hospital. How long can we sustain this? I should focus on the miracle: I am indeed planning to have both of my girls home together. I do not know when, but I do expect it to happen.
Thursday, September 22, 2011
Sarah's surgery went well. She is in recovery now, and we are incredibly proud of her.
Her doctors are amazing. We are very blessed to live close enough to this incredible hospital.
We believe that she is a miracle, a gift and a blessing. She is an amazing tiny little person.
I spent my morning yesterday confused. What kind of a mother does not feel anxiety while their two week old child goes in for a serious surgery? I was not anxious. I was not worried. It was not that I was unaware of the risks of the surgery. It was not that I did not care about the outcome. I did trust the surgeon and his team, but I did not have an inflated confidence. I knew she was likely to lose half, or more, of her blood. I knew that removing pieces of bone from around her brain would be frightening under normal circumstances, and hers was complicated. I felt no anxiety; no fear. What kind of a mother does not experience fear?
I have asked for prayers for peace. I can only say that, against the odds, those prayers were heard.
The surgery went well, although she did lose a lot of blood. The pressure was relieved, and even without any attempts at reconstruuction, she looks better. Her forehead looks less painfully protruded and tight. Where the fusing was most pronounced, her head has rounded out. Her color is finally returning now- she is a pretty pink baby again! Yesterday, after surgery, the only color I saw was in her angry little face. I was sorry to see her so upset, but it was good to see she is still my strong fighter. Her body was pale white- but as she demanded that someone address her headache, she kicked both legs, waved both arms, opened both eyes and yelled. Her face turned temper tantrum red. I tried not to laugh when she removed her turban style head covering, which protected her stiches. I tried not to laugh, when she tried fought the wonderful nurses caring for her. I was delighted to see my strong little fighter fighting. Not so delighted, however, that I would resist the nurses who upped the pain meds. She needed to rest and recover.
Thank you for your continued prayers.
Her doctors are amazing. We are very blessed to live close enough to this incredible hospital.
We believe that she is a miracle, a gift and a blessing. She is an amazing tiny little person.
I spent my morning yesterday confused. What kind of a mother does not feel anxiety while their two week old child goes in for a serious surgery? I was not anxious. I was not worried. It was not that I was unaware of the risks of the surgery. It was not that I did not care about the outcome. I did trust the surgeon and his team, but I did not have an inflated confidence. I knew she was likely to lose half, or more, of her blood. I knew that removing pieces of bone from around her brain would be frightening under normal circumstances, and hers was complicated. I felt no anxiety; no fear. What kind of a mother does not experience fear?
I have asked for prayers for peace. I can only say that, against the odds, those prayers were heard.
The surgery went well, although she did lose a lot of blood. The pressure was relieved, and even without any attempts at reconstruuction, she looks better. Her forehead looks less painfully protruded and tight. Where the fusing was most pronounced, her head has rounded out. Her color is finally returning now- she is a pretty pink baby again! Yesterday, after surgery, the only color I saw was in her angry little face. I was sorry to see her so upset, but it was good to see she is still my strong fighter. Her body was pale white- but as she demanded that someone address her headache, she kicked both legs, waved both arms, opened both eyes and yelled. Her face turned temper tantrum red. I tried not to laugh when she removed her turban style head covering, which protected her stiches. I tried not to laugh, when she tried fought the wonderful nurses caring for her. I was delighted to see my strong little fighter fighting. Not so delighted, however, that I would resist the nurses who upped the pain meds. She needed to rest and recover.
Thank you for your continued prayers.
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