Almost every day I have to fight this urge to tell people they have no idea what I am going through. I feel like I have to go through so much more than them every day and they just cannot compare to my life at all. And I know this is a true statement. Not even my WHS friends go through exactly what I do. But this does not give me a right to think of myself more highly than I ought to.
I usually have to work really hard to not feel something like superiority over the people who complain about their children. Because even when their kids are throwing up or misbehaving or just not sleeping, they will never have to go through what we do. I feel like that makes me some kind of "special" as well. And that is just not true. I am just like anyone, I have no idea what it is like to be them or what they do day to day.
When someone tells me they remember having to wake up every three hours, I think, not for five months. Not when you have to spend a few minutes putting the nipple on and in and around your babies mouth to "desensitize" so she wont gag repeatedly. Not when you have to pay attention for every second you are squeezing the bottle so she doesn't aspirate. Not when you have to hold her until she burps so she doesn't just throw it all right back up. And sometimes, even when she burps and you aren't jostling her, she still throws it all up and you have to start all over. Not when on top of all this, you have to clean out bottles and pumping supplies and pump every three hours.
Its not just like my other two. I am exhasted, mentally and physically. I am usually drained emotionally also. It is so hard to not be able to just enjoy feeding my baby. There is no bonding time, no loving stares, just hard hard work. Most of the time she refuses my feeding her after a few minutes. And when she starts fighting me, she throws up. Luckily she eats very well for Mark. But it is still frustrating and hard to accept that I can't make her do what she needs.
Every doctors appointment we go to its there in big black letters "FAILURE TO THRIVE" And that feels terrible. I feel like we aren't able to do anything for her, especially that I can't do anything right. And the doctor says, I bet you will be happy to get that cleft fixed so people will stop asking questions. No, not really, she is still tiny. They will still ask. And I don't even have a problem with that. Mostly I love to talk about how much she is "missing" and how well she is doing. Its the look after I start talking I can't stand. Either pity or something like horror. And sometimes even "You didnt catch it in time?"
Its hard to see regular babies. I don't envy others, but when I see them, it reminds me that she won't be like them. I can accept this in my head, but my heart doesn't always follow. Truly, I feel like she is just another baby until I see a four month old holding their body upright staring lovingly at their daddy and giggling. She can do none of those things.
My mom will tell me that I am doing so much work for her. That there aren't a lot of mom's who would spend that time pumping like I do. That there aren't a lot of couples who would even still be together. That there aren't a lot of people who would choose life for her over an abortion of convenience. But I told her this: I don't work harder for her than the other two. I just provide what she needs. Isn't the saying find something you love to do and you will never work another day in your life. We love our babies. I would think it would be harder to be a mother of a person who grows up to be a murderer than for our baby Mercy. And this tiring thing we have to do, it isn't work. Its just like doing homework with Melodee or kicking a ball with Malachi. Its just what needs to be done so we do it.
Of course I am tired. But I was tired before. When I had my two kids who are "regular" We chose this life of parenting and we are sticking to it. It totally makes me crazy when people who have children want that life they had before. The "fun" of partying and drinking, going out, having fun and who knows what else. How is that more fun that snuggling at bedtime making up stories? When did your children become something to tolerate until you can do something more "fun." Of course, I love to go out with just Mark every now and then, but isn't the point of having a family, being a family? It seems to me like most people just want kids because they "need" them and just put them up in daycare until the weekend or parties where they can dress them up. Parenting isn't glamorous or even fun most of the time. Its hard work. Loving your children means teaching them right from wrong and having to work consistantly to bring them up. If raising your kids is just trying to grow them up and get them out, just to say you had them, you are sorely missing out.
Most days I am so drained I feel like a failure. The house is never cleaned properly, there is always laundry to be done, and most of the time I am even very grouchy. I feel like I can't parent my kids. I lost my temper so easily. I get depressed and wish I could stay in bed all day. I am trying to be better, trying to do more things that are fun. Now that it is warmer we can play outside, which is good for everyone. I always start to get wary because sometimes I feel like I just want to get to the end of the day, which is so not what being a family is about. It is not just tolerating life until Mark gets home. So I am trying to enjoy what I have. Trying to help my kids have more fun and not be so worried about the things that don't really matter. Luckily, I know that I don't have to fix this all tomorrow, just so long as I am trying to day by day. Because being messed up isn't bad as long as you are working on getting better. Right?
Wednesday, April 13, 2011
Monday, April 4, 2011
Love
Being a woman is tough. However, I would think that being married to a woman is even harder. I know that I ask questions that have no right answers. I can be unreasonably moody and just plain unreasonable. But something that I have started to think about it why I demand to know why my husband loves me. I don't know if you ask this question, even if it is not out loud, but it is something I did not know I struggled with until I watched MercyMe in concert. The lead singer asked a question that totally changed my perspective. He asked "Why do you love God" He said that most people would say "Because he saved me" "Salvation" It is something like what came to my mind right away. Then he gave an example:
I ask my five year old son, "why do you love your mom" He says things like, because she makes me peanut butter sandwiches and tucks me in at night. That is an immature kind of love. That is love that depends on actions. What I hope for my son when he is 25, is that when he is asked that question his answer is "because shes my mom" (here is added that he hoped she still wasn't making his sandwiches and tucking him in) The correct response to why we love God should be, because he is God! Yes, the things He has done is awesome, but we should love Him for who He is. Worshipping the gifts from the Creator instead of the Creator is a sin.
This goes along with something my friend just posted.
"Reading the Bible to extract it's "life lessons" puts much of the focus on the reader...but the real story...is about the Author"
Sometimes we forget that what the Bible is, is a glimpse of who God is. And He is amazing. Sometimes we set up a lesson and search the Bible to confirm what we want to learn about. But He just wants us to get to know Him. Even the creation shows who He is.
Having a baby like Mercy shows me this in a new way. Of course I love my children, but sometimes I wish that they would just be perfect and not drive me crazy. AS if they are purposely trying to ruin my day by misbehaving. When I think about Mercy, I know she will never be able to do anything to "make" me love her. She isn't going to get perfect grades, or a good job, or have children. She isn't going to write poetry or keep her room clean (if she can, I assure you I will make her though) I love her for her. I love her for who she is going to be, even though the world says it is not "quality" life.
I am trying to just love my children, even though sometimes they make me crazy. I am trying to speak love to my children, even when they break my favorite knick knack. I am trying to show love to my children, even when I have too many other things to do, because I do love them. The good things that they do are just a bonus and a blessing instead of some kind of marker for how much I love them that day. I am trying to not demand to know why my husband loves me. It is enough when he says "because you are you" I don't need to be loved because I keep the house clean (which I don't do so well anyway) or because I cook for him or even because I stay home with the kids. He loves me because I am McKenzie, I am his wife. Just I love him because he is Mark. Everything he does is just icing on the cake. I am making sure that is enough for me.
I ask my five year old son, "why do you love your mom" He says things like, because she makes me peanut butter sandwiches and tucks me in at night. That is an immature kind of love. That is love that depends on actions. What I hope for my son when he is 25, is that when he is asked that question his answer is "because shes my mom" (here is added that he hoped she still wasn't making his sandwiches and tucking him in) The correct response to why we love God should be, because he is God! Yes, the things He has done is awesome, but we should love Him for who He is. Worshipping the gifts from the Creator instead of the Creator is a sin.
This goes along with something my friend just posted.
"Reading the Bible to extract it's "life lessons" puts much of the focus on the reader...but the real story...is about the Author"
Sometimes we forget that what the Bible is, is a glimpse of who God is. And He is amazing. Sometimes we set up a lesson and search the Bible to confirm what we want to learn about. But He just wants us to get to know Him. Even the creation shows who He is.
Having a baby like Mercy shows me this in a new way. Of course I love my children, but sometimes I wish that they would just be perfect and not drive me crazy. AS if they are purposely trying to ruin my day by misbehaving. When I think about Mercy, I know she will never be able to do anything to "make" me love her. She isn't going to get perfect grades, or a good job, or have children. She isn't going to write poetry or keep her room clean (if she can, I assure you I will make her though) I love her for her. I love her for who she is going to be, even though the world says it is not "quality" life.
I am trying to just love my children, even though sometimes they make me crazy. I am trying to speak love to my children, even when they break my favorite knick knack. I am trying to show love to my children, even when I have too many other things to do, because I do love them. The good things that they do are just a bonus and a blessing instead of some kind of marker for how much I love them that day. I am trying to not demand to know why my husband loves me. It is enough when he says "because you are you" I don't need to be loved because I keep the house clean (which I don't do so well anyway) or because I cook for him or even because I stay home with the kids. He loves me because I am McKenzie, I am his wife. Just I love him because he is Mark. Everything he does is just icing on the cake. I am making sure that is enough for me.
Death and Life
When I was with my husband in the hospital when his grandpa was dying, I guess it did not occur to me that I would be seeing death itself. Death is something that no one ever wants to talk about. I had struggled with it when I would think about it before. But I learned something that night.
It wasn't this awful scary thing. It was actually something quite beautiful. Surrounded by his loving family, whispering love and acceptance and telling stories of all of the good memories as the time crept closer and closer. When they "pulled the plug" it was just like a very tired machine slowly stopping. I thought this was going to give me nightmares. But it did not. I thought it was going to break my emotions and leave me a mess. It did not. It was sad, yes. But it was also amazing to see what death looks like. Its a legacy. Its knowing what you leave behind matters and love is there for you until the end. When I think about dying now, its not as scary. Because I have seen it.
We thought that Mercy was not going to make it when I went in to surgery to pull her out. Honestly, we thought that her body was going to be so messed up inside she would not function and we would have had to watch her take her last breaths. This is what was presented to us when they told us of her deletion. Constant suffering and pain and her body would never work correctly. Of course, my little miss came out wailing and fighting those doctors. Nevermind that she was just under five pounds, she was letting us no she did not like what was happening. I thought that we had prepared for that outcome. And some part of me even thought that she would not have to suffer in this life, and if she had to go, it would be best to go right away. Thinking about a loved one dying is never something that you want to even think about thinking.
Thinking back now, you could never be ready for that. A life not even begun cannot end. But a good life, full of love and laughter and of course mistakes, feels just as painful to lose. But watching grandpa slip from life into death did not destroy me like I thought it ought to. It did make me feel sorrowful. But I know he doesnt suffer now. I know he can walk and run and do all of the things that frustrated him here on earth. And I have a new great respect for life now that I have personally seen the end of it.
It makes me want to live mine own to the best it can be, to create that legacy that leaves behind sorrowful family, but also so blessed and happy to have been part of this life. It makes me treasure the lives I have been given in my children. Even when the world (doctors mostly) would have me to kill Mercy, we chose for her to have this life. And if she does suffer something that is painful or even results in her death, I know that we gave her the opportunity to show her love and to become part of our legacy. Mercy and Melodee and Malachi (and whoever else may come along) will be loved. And they love each other. Nothing means more than that. And when my life is done I know I will be leaving behind children (grandchildren maybe) who love people for who they are and not for what they can give. Death does not scare me at all anymore.
It wasn't this awful scary thing. It was actually something quite beautiful. Surrounded by his loving family, whispering love and acceptance and telling stories of all of the good memories as the time crept closer and closer. When they "pulled the plug" it was just like a very tired machine slowly stopping. I thought this was going to give me nightmares. But it did not. I thought it was going to break my emotions and leave me a mess. It did not. It was sad, yes. But it was also amazing to see what death looks like. Its a legacy. Its knowing what you leave behind matters and love is there for you until the end. When I think about dying now, its not as scary. Because I have seen it.
We thought that Mercy was not going to make it when I went in to surgery to pull her out. Honestly, we thought that her body was going to be so messed up inside she would not function and we would have had to watch her take her last breaths. This is what was presented to us when they told us of her deletion. Constant suffering and pain and her body would never work correctly. Of course, my little miss came out wailing and fighting those doctors. Nevermind that she was just under five pounds, she was letting us no she did not like what was happening. I thought that we had prepared for that outcome. And some part of me even thought that she would not have to suffer in this life, and if she had to go, it would be best to go right away. Thinking about a loved one dying is never something that you want to even think about thinking.
Thinking back now, you could never be ready for that. A life not even begun cannot end. But a good life, full of love and laughter and of course mistakes, feels just as painful to lose. But watching grandpa slip from life into death did not destroy me like I thought it ought to. It did make me feel sorrowful. But I know he doesnt suffer now. I know he can walk and run and do all of the things that frustrated him here on earth. And I have a new great respect for life now that I have personally seen the end of it.
It makes me want to live mine own to the best it can be, to create that legacy that leaves behind sorrowful family, but also so blessed and happy to have been part of this life. It makes me treasure the lives I have been given in my children. Even when the world (doctors mostly) would have me to kill Mercy, we chose for her to have this life. And if she does suffer something that is painful or even results in her death, I know that we gave her the opportunity to show her love and to become part of our legacy. Mercy and Melodee and Malachi (and whoever else may come along) will be loved. And they love each other. Nothing means more than that. And when my life is done I know I will be leaving behind children (grandchildren maybe) who love people for who they are and not for what they can give. Death does not scare me at all anymore.
Friday, March 25, 2011
Yellow Light
Have you ever been at a stoplight when it turned yellow? I sometimes wonder if people have forgotten what yellow means. I distinctly remember playing red light green light. Red means stop and green means go and yellow...that means slow down. I wonder what people think now. Yellow means punch it or you will have to wait a few minutes. Yellow means I hope I make it at least half way through before the oncoming traffic turns green. Or, I am going too fast, can't stop now.
I think yellow means please slow down, be careful and be patient.
I think people approach yellow lights in their life the same way. God puts a big yellow light, wanting us to slow down, think and be very careful. We however, don't see it as a warning for caution, but as a big fat excuse to shove down on the accelerator. I think we are a generation who wants everything now. Get rich quick, lose weight fast, download a movie in 10 seconds. But the thing is, going fast all of the time is not good for you. Decisions don't have to happen right away.
I find that when I feel the most rushed is when I should slow the most.
But the world keeps going right on by when I stop. Sometimes it takes everything I have to not holler wait and race back to it. But when I stop, ignore the rest and enjoy myself it is the best.
Although I do have great hopes and dreams for Mercy, I know that I have to enjoy her right now. Even if she is already way behind in development this is as close to "regular" as she will be. Right now she is just another helpless newborn. And even if there is a big green light telling me to speed through this intersection, I think its time for all my kiddos to take a walk with me instead. So we can enjoy the scenery together.
I think yellow means please slow down, be careful and be patient.
I think people approach yellow lights in their life the same way. God puts a big yellow light, wanting us to slow down, think and be very careful. We however, don't see it as a warning for caution, but as a big fat excuse to shove down on the accelerator. I think we are a generation who wants everything now. Get rich quick, lose weight fast, download a movie in 10 seconds. But the thing is, going fast all of the time is not good for you. Decisions don't have to happen right away.
I find that when I feel the most rushed is when I should slow the most.
But the world keeps going right on by when I stop. Sometimes it takes everything I have to not holler wait and race back to it. But when I stop, ignore the rest and enjoy myself it is the best.
Although I do have great hopes and dreams for Mercy, I know that I have to enjoy her right now. Even if she is already way behind in development this is as close to "regular" as she will be. Right now she is just another helpless newborn. And even if there is a big green light telling me to speed through this intersection, I think its time for all my kiddos to take a walk with me instead. So we can enjoy the scenery together.
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Wednesday, February 9, 2011
To whom it may concern:
So I have this problem. I don't know what to say when people ask if I got my tubes tied. For one thing, I cannot imagine why my reproductive system is anyone else's business. And secondly, why would anyone even ask that? It has to be for two reasons. A, that I have too many children already and I could not possibly afford more. Three is considered a lot I guess, but Melodee just informed me that she would like two more sisters and maybe one more brother. Or it is B, people cannot imagine how I could chance having another baby that is like Mercy. I can't think of any other options. We aren't "too old." It isn't against the law.
So if it is A. Its none of your business! I think that children are a very special gift from God (that even I don't always appreciate and treasure like I should) and they are not a burden or some kind of problem you have to work through. They are blessings and on loan to us from their Father who loves them. I trust that God doesn't give us more than we can handle. So if the number is what is making you ask me, it is not your problem. If we have to take out loans to take care of our baby that is what we will do. Having them is much much more important that the big house, the car and money. Showing them love and raising them to be productive selfless people will be not only a challenge, but a huge blessing!
And if it is B, then that is also very sad for you. Because I was in this camp before I had Mercy, I realize that it is ignorance that makes people feel this way. I would think, why would you keep having kids when you had one with down syndrome, you must be crazy. But now that we have our "special" baby, there is no way that would ever stop us from having another baby just because they might turn out like her! She amazes us everyday. To say that we wouldnt want another baby like her is to say that there is something wrong with her. As our child, there is nothing, absolutely nothing wrong with her. She is my baby. Sure, there are some phyiscal and probably some mental things we have to work on and work through, but she is a child just like you and me. And though it is hard, and I wouldnt want to have the stress of this on anyone, I trust that God would provide us with the child He picked for us if we decided to get pregnant again. Besides, we already have the experience! I feel like we could take on anything!!!
Below is some pictures I took of her holding herself up. She is 2 and a half months old here. We thought she was going to be just a shell of a baby, if she even lived. The doctors said she would not be able to do anything. And she is trying to scoot herself all over the place. Such a small thing, I know. But we were really happy to see her do this! And although it is going to take more time we truly believe she will be able to do all of the things they said she could not. She is still eating very well. Especially for her Dad. She is way more picky when I give her the bottle. She even almost latched on to my breast for some recreational sucking, because giving her breastmilk from there and not the bottle would make everyone much more happy. It seems like God is giving us good news every time we take a test or meet with a doctor. He is the only one with all of the final answers for who she is going to be. We are going to let Him work it out and just love on our little family.
So if it is A. Its none of your business! I think that children are a very special gift from God (that even I don't always appreciate and treasure like I should) and they are not a burden or some kind of problem you have to work through. They are blessings and on loan to us from their Father who loves them. I trust that God doesn't give us more than we can handle. So if the number is what is making you ask me, it is not your problem. If we have to take out loans to take care of our baby that is what we will do. Having them is much much more important that the big house, the car and money. Showing them love and raising them to be productive selfless people will be not only a challenge, but a huge blessing!
And if it is B, then that is also very sad for you. Because I was in this camp before I had Mercy, I realize that it is ignorance that makes people feel this way. I would think, why would you keep having kids when you had one with down syndrome, you must be crazy. But now that we have our "special" baby, there is no way that would ever stop us from having another baby just because they might turn out like her! She amazes us everyday. To say that we wouldnt want another baby like her is to say that there is something wrong with her. As our child, there is nothing, absolutely nothing wrong with her. She is my baby. Sure, there are some phyiscal and probably some mental things we have to work on and work through, but she is a child just like you and me. And though it is hard, and I wouldnt want to have the stress of this on anyone, I trust that God would provide us with the child He picked for us if we decided to get pregnant again. Besides, we already have the experience! I feel like we could take on anything!!!
Below is some pictures I took of her holding herself up. She is 2 and a half months old here. We thought she was going to be just a shell of a baby, if she even lived. The doctors said she would not be able to do anything. And she is trying to scoot herself all over the place. Such a small thing, I know. But we were really happy to see her do this! And although it is going to take more time we truly believe she will be able to do all of the things they said she could not. She is still eating very well. Especially for her Dad. She is way more picky when I give her the bottle. She even almost latched on to my breast for some recreational sucking, because giving her breastmilk from there and not the bottle would make everyone much more happy. It seems like God is giving us good news every time we take a test or meet with a doctor. He is the only one with all of the final answers for who she is going to be. We are going to let Him work it out and just love on our little family.
Thursday, February 3, 2011
The baby Doc
When we couldn't find a pediatrician for Mercy I was a little worried. As you would expect, there were not a lot of doctors who were willing to try to take her on as a patient. Which was disappointing at first because we thought they really only needed to do physicals and well baby stuff like shots, ect. because she see's so many other specialists. However, now that we have a great doctor, I see why no one else wanted to do it.
I loved our doctor from the first time we went to see him. The day after we got home from the NICU we had an appointment. We got to go back right away to keep her from the icky other kiddos. It wasnt a long wait and the nurse's were very sweet and amazed at how tiny she was. The doctor came in to talk to us and told about the clinic and his background. He worked in the NICU at a San Diego hospital and we could tell that he was really about patient care. He and his wife found this place because they were tired of all of the politics that went on at the bigger hospitals. He told us he had looked into all the info he could find about this syndrome. And that we were going to expect the best and be prepared for the worst.
He told us we were going to treat Mercy just like any other little baby until she gave us a reason not to. He said we could talk about options for what to do if she has a seizure, ect. But that we not no reason to assume that her life was going to be awful and were going to treat her just like our other kids. I didnt realize how worried I was about that until I heard him say that. I thought the doctors would either, not care to look up anything about her, or assume she was just "damaged goods" So it was such a great day!
Not only that but he knew most of the other doctors we had to follow up with and suggested other, closer options. It was very nice because the Children's hospital is an hour away and in our big car, at least 25 dollars in gas. His staff has been amazing at getting us appointments (and cancelling some we did not need.) He introduced us to the other doctors in the practice in case we needed help on days he was not there. All in all it was a great experience and if he had his own private practice, I would take my other children to him too. He helped us realize that we dont need to go to every referral that we get or do every test. Some stuff can wait and some can't.
He had faith in her and her kidney's ability. When we left the hospital they had put her on a special formula, but when we explained the situation, he thought it had more to do with the additive they added to my breastmilk than her kidneys failing. To give high doses of the electrolytes to a kid with itty bitty kidneys was sure to make her numbers go up. Especially since, the actual kidney tests werent too elevated, just the calcium and potassium. He made sure with some follow up tests and we were back on track for giving her breastmilk, something that I really wanted to do.
He said that we would be able to remove the NG tube when we were confident that she was ready to have it out! The Home supply company reprimanded for not getting more for her. They said that I should have a doctor check her out before I did anything. It was nice that someone had some confidence in her and us as her parents. :) All in all we are so pleased with the doctor that we have found, and we wish that ALL doctors had his sense of patient care (even those who are administrators!) Of course we needed a special doc for a very special baby!
I loved our doctor from the first time we went to see him. The day after we got home from the NICU we had an appointment. We got to go back right away to keep her from the icky other kiddos. It wasnt a long wait and the nurse's were very sweet and amazed at how tiny she was. The doctor came in to talk to us and told about the clinic and his background. He worked in the NICU at a San Diego hospital and we could tell that he was really about patient care. He and his wife found this place because they were tired of all of the politics that went on at the bigger hospitals. He told us he had looked into all the info he could find about this syndrome. And that we were going to expect the best and be prepared for the worst.
He told us we were going to treat Mercy just like any other little baby until she gave us a reason not to. He said we could talk about options for what to do if she has a seizure, ect. But that we not no reason to assume that her life was going to be awful and were going to treat her just like our other kids. I didnt realize how worried I was about that until I heard him say that. I thought the doctors would either, not care to look up anything about her, or assume she was just "damaged goods" So it was such a great day!
Not only that but he knew most of the other doctors we had to follow up with and suggested other, closer options. It was very nice because the Children's hospital is an hour away and in our big car, at least 25 dollars in gas. His staff has been amazing at getting us appointments (and cancelling some we did not need.) He introduced us to the other doctors in the practice in case we needed help on days he was not there. All in all it was a great experience and if he had his own private practice, I would take my other children to him too. He helped us realize that we dont need to go to every referral that we get or do every test. Some stuff can wait and some can't.
He had faith in her and her kidney's ability. When we left the hospital they had put her on a special formula, but when we explained the situation, he thought it had more to do with the additive they added to my breastmilk than her kidneys failing. To give high doses of the electrolytes to a kid with itty bitty kidneys was sure to make her numbers go up. Especially since, the actual kidney tests werent too elevated, just the calcium and potassium. He made sure with some follow up tests and we were back on track for giving her breastmilk, something that I really wanted to do.
He said that we would be able to remove the NG tube when we were confident that she was ready to have it out! The Home supply company reprimanded for not getting more for her. They said that I should have a doctor check her out before I did anything. It was nice that someone had some confidence in her and us as her parents. :) All in all we are so pleased with the doctor that we have found, and we wish that ALL doctors had his sense of patient care (even those who are administrators!) Of course we needed a special doc for a very special baby!
Monday, January 31, 2011
Those doctors!
We were only in the NICU for about three weeks. It felt like forever, as we had to stay overnight because it was an hour's drive to the hospital. We got to where we were feeding her every 3 hours (the doctors were so hesitant in upping her feeding, although she did really well) And although she still had the NG tube, we were going to go home very soon. We took the CPR class, the discharge class (which was like taking a temp and bathing your baby....come on, really?) and we bought the car seat and were ready to go. We were all packed up and the nurse came in to give me all of my left over breast milk.
But then, as we were celebrating how lucky we were that she was eating and going home healthy with no scares, the doctor came in and said that we couldn't go home because she needed more tests. She had some high numbers come back from some blood work and the kidney specialist wanted to check her out some more. So we thought, ok a few extra hours and then we can go home. However, this was not the case.
The doctor came in and told us that her numbers were reading high levels of potassium and calcium. So they did a test to see if she had reflux in her kidneys, which she did. The doctor said that her kidneys were failing and the we had to think about maybe dialysis or a kidney transplant. This was a huge shock to us. We went from being happy to go home to our daughter is dying. We could no longer give her my breast milk, but a special, very expensive formula for babies with kidney failure. It was an awful day for me. I felt like the one thing I could do, give her breastmilk, was killing her. I couldn't even breastfeed to comfort her or walk around and hold her. We had to sleep another night in the rooms that they had given us. The nurse that night was pretty mad because they waiting until we were about to be discharged to do anything about the numbers that were sitting there for a week. What a way to take a great day and smash it all to pieces!
We went home the next day, but we were feeling pretty low. The good news was that we got to meet our pediatrician that day. He was pretty awesome. When he looked at the numbers, he was almost sure that her numbers were high because of the additive they were adding into the milk in the hospital. He put her back on breast milk, much to my liking and ordered tests. The next few weeks we had test that came back more and more regular. However when we went to the kidney doctor again she freaked out on us. It wasnt until she saw the tests herself that she agreed to keep her on the breastmilk, as if she was the final choice on that!
Another of the things we were shocked in a bad way about was her heart. She was born with the bypass coming out of her heart in the wrong place. The fetal echocardiogram saw this, along with leaky valves and the usual openings in her heart. The doctors, both the cardiologist and the paranatal doctors said this was totally ok and did not mess with the function of her heart. When we saw the cardiologist, she said she wasnt worried about the valves or the openings, these would resolve for themselves, but the bypass came out of her left cusp instead of the right and was in the heart muscle and between the valves. So in the event of very elevated prolonged heart rate, the valves would be open and essentially cut off supply from the bypass and cause an infarction.
Or in other words, a heart attack. In a normal baby this would be silly to even think about because the most they do is be pissed off because they are hungry. However with this syndrome, seizures are a big possibility and that would do enough to give my little baby a heart attack. This was also something that felt like a sucker punch. We cannot do further testing because of her small, low functioning kidneys. The doc said this problem is 50/50 among doctors at doing a surgery because of the dangers of going into the heart, they don't necessarily outweigh the threat of a heart attack. So we wait for something to develop in that area. Obviously the bypass is not "ok" and we have to worry about that. Whenever we take her to the hospital for something big, we will have to have them test for a heart attack. It just doesnt seem fair!
I am sure this is just the beginning of my woe's with doctors and getting it wrong. We are trying to keep in mind all of the great things that she can do. She can eat all on her own, no tube. She can pick up her little head to look around. She can hear really loud noises, but we are not really sure how good she hears. She thinks it is funny to look at the fan. She is almost closing her eye all the way now! And she is still here giving us a blessed life. It just would be more convenient if we knew everything right now and there were not any more surprises. I used to love them, but now, not so much!
But then, as we were celebrating how lucky we were that she was eating and going home healthy with no scares, the doctor came in and said that we couldn't go home because she needed more tests. She had some high numbers come back from some blood work and the kidney specialist wanted to check her out some more. So we thought, ok a few extra hours and then we can go home. However, this was not the case.
The doctor came in and told us that her numbers were reading high levels of potassium and calcium. So they did a test to see if she had reflux in her kidneys, which she did. The doctor said that her kidneys were failing and the we had to think about maybe dialysis or a kidney transplant. This was a huge shock to us. We went from being happy to go home to our daughter is dying. We could no longer give her my breast milk, but a special, very expensive formula for babies with kidney failure. It was an awful day for me. I felt like the one thing I could do, give her breastmilk, was killing her. I couldn't even breastfeed to comfort her or walk around and hold her. We had to sleep another night in the rooms that they had given us. The nurse that night was pretty mad because they waiting until we were about to be discharged to do anything about the numbers that were sitting there for a week. What a way to take a great day and smash it all to pieces!
We went home the next day, but we were feeling pretty low. The good news was that we got to meet our pediatrician that day. He was pretty awesome. When he looked at the numbers, he was almost sure that her numbers were high because of the additive they were adding into the milk in the hospital. He put her back on breast milk, much to my liking and ordered tests. The next few weeks we had test that came back more and more regular. However when we went to the kidney doctor again she freaked out on us. It wasnt until she saw the tests herself that she agreed to keep her on the breastmilk, as if she was the final choice on that!
Another of the things we were shocked in a bad way about was her heart. She was born with the bypass coming out of her heart in the wrong place. The fetal echocardiogram saw this, along with leaky valves and the usual openings in her heart. The doctors, both the cardiologist and the paranatal doctors said this was totally ok and did not mess with the function of her heart. When we saw the cardiologist, she said she wasnt worried about the valves or the openings, these would resolve for themselves, but the bypass came out of her left cusp instead of the right and was in the heart muscle and between the valves. So in the event of very elevated prolonged heart rate, the valves would be open and essentially cut off supply from the bypass and cause an infarction.
Or in other words, a heart attack. In a normal baby this would be silly to even think about because the most they do is be pissed off because they are hungry. However with this syndrome, seizures are a big possibility and that would do enough to give my little baby a heart attack. This was also something that felt like a sucker punch. We cannot do further testing because of her small, low functioning kidneys. The doc said this problem is 50/50 among doctors at doing a surgery because of the dangers of going into the heart, they don't necessarily outweigh the threat of a heart attack. So we wait for something to develop in that area. Obviously the bypass is not "ok" and we have to worry about that. Whenever we take her to the hospital for something big, we will have to have them test for a heart attack. It just doesnt seem fair!
I am sure this is just the beginning of my woe's with doctors and getting it wrong. We are trying to keep in mind all of the great things that she can do. She can eat all on her own, no tube. She can pick up her little head to look around. She can hear really loud noises, but we are not really sure how good she hears. She thinks it is funny to look at the fan. She is almost closing her eye all the way now! And she is still here giving us a blessed life. It just would be more convenient if we knew everything right now and there were not any more surprises. I used to love them, but now, not so much!
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