I shouldn't be sitting on the front porch writing and listening to rain. I should be at church with my family. I wish I could have a do over of this morning but since I can't I will pray for healing, forgiveness and the strength to do better next time.
This week started with the birth of our nephew, Parker. Precious and perfect in every way. A very joyous occassion!! Then there was the amazing moment of seeing my belly move as Charlotte kicked and played. Since Jared was at work and it was after 10 I turned to the world of Facebook to share my happy news. I assume the 60+ "likes" means a few others could relate to my joy :)
The week ended Friday with devasting although somewhat expected news. It seems Charlotte's kidney is no longer working. There is essentially no amniotic fluid left. Although I will pray for a miracle it is very unlikely she will survive. If we have even a few precious minutes or hours with her I will be forever grateful.
We have done all we can do at this point to prepare for her arrival. There is a team of neonatalogist that meet weekly to discuss patients and we are on that list. It gives me comfort to know that in case of a miracle they will be able to provide her all the support and care she will need. I will see my OB once a week for now. Mostly just for my peace of mind.
Jared and I plan on spending a short time in the coming weeks preparing for her passing. We have a list of questions and requests from certain family and friends we plan to address.
And then I will do my best to let it all go and enjoy each moment with her and the holidays with my family.
The above are my plans and prayers but I know it won't be easy. I am not strong as many have said. I am just a broken and hurting Mom trying to do the very best I can but often falling short. And I am angry at God and sometimes at whatever poor soul crosses my path. I have faith that He is carrying me and my family but I just can't always see or feel it. I currently don't like His ways and think mine would be much better ;)
I've been told that every emotion and feeling is important to experience. It is just when we dwell too long on one that we tend to struggle. I think that makes sense. I have decided life is just a balancing act and it is definitely easier to balance on the fairly steady ground I have lived most of my life rather than the current roller coaster that has become our life.
Much love to each of you! And a very special hug and prayer to those also traveling a tough journey.
Sunday, September 30, 2012
Wednesday, September 19, 2012
The "Mom" of the NICU
Today we had an appointment with the neonatologist. I wasn't aware of this appointment until my new OB's office called last week to say they had scheduled it. The mother of one of my closest friends told me earlier in the week to get an appointment with this neonatologist, Dr. Weinman. She said she was the "Mom" of the NICU :) So as much as I dreaded meeting a new doctor it seemed like if two people had encouraged an appointment with her then it was a good idea.
She met us at the elevator and we went to the parent consultation room. A few bottles of water and a big box of tissues were on the table in front of us :)
She started having us recap in our own words what we understood (although it was clear she was completely up to date on our situation.) Shortly into our conversation she asked if we had named the baby, afterwards she always referred to her as Charlotte. She was the very first doctor/nurse to do so. A wide range of topics were discussed. We went through what would happen if she is stillborn or passes shortly after birth. I will spare you the details because I believe this is only information you need to hear if you are facing these possibilities. Just understand that knowing there are teams of people to support us was comforting.
Next we discussed what to expect if she survives and is being cared for in the NICU. She made sure we understood that we were in charge of the decisions for Charlotte's care. The neonatologist team will be the ones making sure this happens while overseeing all the specialists that will be around Charlotte. She requested only one decision be made today. When Charlotte is born, if she is struggling to breathe, will we allow her to be put on a ventilator or CPAP in order to assist her until we can determine the strength of her lungs, kidneys etc.? Jared and I both agreed we should give her a chance until we know as much as possible about her condition once she is born. They even gave us a notecard to give to the hospital to make sure they know we have a plan on file. They call it the Wee Care program :) She spoke a lot about Andrew and Mckinley. Dr. Weinman explained how they will make sure to include especially Andrew in meeting and holding his new sister. And how if Charlotte doesn't survive they have many free resources to help children grieve and cope. It seemed like this was very encouraging to Jared who lost his Mother when he was 5 and still has very vivid memories of her death.
We took a tour of Labor and Delivery and the NICU. We saw precious babies being carried for by loving nurses. I would have expected that seeing a 2.5 lb baby on a ventilator would be upsetting but truthfully I saw a beautiful precious miracle. It was a comfort knowing we were in the right place with the right people to care for our daughter.
Even though much of the content of this dreaded meeting was beyond upsetting and I am completely drained, it was delivered in a kind and personal way which made it, in a very strange way, a blessing.
I don't have any inspiring bible verses or words of wisdom tonight so feel free to comment with yours :) I do want to thank Gigi (my mom) for coming to stay with the kids this afternoon, Jennifer for picking them both up from school and Miss Dawn for keeping Mckinley last week. Knowing that they were so well cared for made it easy for me to focus on Charlotte. I am also grateful to my old OB, Dr. Lungren and her nurses/office staff, who graciously took me into their office this morning without an appointment to talk me through a few things, offer some hugs and a much needed prescription. And last but not least I am thankful to Jared. Although we handle our grief and stress in very different ways...think Mars and Venus ;) I know I am not alone on this journey and that means everything.
Oh and one more VERY important item. If you ever end up at Harris Methodist make sure and stop by the popcorn guy. Yummy! Best $1 I have spent in a while :)
She met us at the elevator and we went to the parent consultation room. A few bottles of water and a big box of tissues were on the table in front of us :)
She started having us recap in our own words what we understood (although it was clear she was completely up to date on our situation.) Shortly into our conversation she asked if we had named the baby, afterwards she always referred to her as Charlotte. She was the very first doctor/nurse to do so. A wide range of topics were discussed. We went through what would happen if she is stillborn or passes shortly after birth. I will spare you the details because I believe this is only information you need to hear if you are facing these possibilities. Just understand that knowing there are teams of people to support us was comforting.
Next we discussed what to expect if she survives and is being cared for in the NICU. She made sure we understood that we were in charge of the decisions for Charlotte's care. The neonatologist team will be the ones making sure this happens while overseeing all the specialists that will be around Charlotte. She requested only one decision be made today. When Charlotte is born, if she is struggling to breathe, will we allow her to be put on a ventilator or CPAP in order to assist her until we can determine the strength of her lungs, kidneys etc.? Jared and I both agreed we should give her a chance until we know as much as possible about her condition once she is born. They even gave us a notecard to give to the hospital to make sure they know we have a plan on file. They call it the Wee Care program :) She spoke a lot about Andrew and Mckinley. Dr. Weinman explained how they will make sure to include especially Andrew in meeting and holding his new sister. And how if Charlotte doesn't survive they have many free resources to help children grieve and cope. It seemed like this was very encouraging to Jared who lost his Mother when he was 5 and still has very vivid memories of her death.
We took a tour of Labor and Delivery and the NICU. We saw precious babies being carried for by loving nurses. I would have expected that seeing a 2.5 lb baby on a ventilator would be upsetting but truthfully I saw a beautiful precious miracle. It was a comfort knowing we were in the right place with the right people to care for our daughter.
Even though much of the content of this dreaded meeting was beyond upsetting and I am completely drained, it was delivered in a kind and personal way which made it, in a very strange way, a blessing.
I don't have any inspiring bible verses or words of wisdom tonight so feel free to comment with yours :) I do want to thank Gigi (my mom) for coming to stay with the kids this afternoon, Jennifer for picking them both up from school and Miss Dawn for keeping Mckinley last week. Knowing that they were so well cared for made it easy for me to focus on Charlotte. I am also grateful to my old OB, Dr. Lungren and her nurses/office staff, who graciously took me into their office this morning without an appointment to talk me through a few things, offer some hugs and a much needed prescription. And last but not least I am thankful to Jared. Although we handle our grief and stress in very different ways...think Mars and Venus ;) I know I am not alone on this journey and that means everything.
Oh and one more VERY important item. If you ever end up at Harris Methodist make sure and stop by the popcorn guy. Yummy! Best $1 I have spent in a while :)
Tuesday, September 11, 2012
9/11
Yesterday's much anticipated appointment came and went. I can't say that I learned a lot of useful information or that I loved the doctor. She is back to being concerned about her kidneys because there is very little amniotic fluid. Her plan is to take a look again in 2 weeks before we move forward with visiting any other specialists. Charlotte measures small which is typical of a baby with so many anomalies. The definition of anomaly is a deviation from the common rule, type, arrangement, or form. I decided I like this word better than defect ;) But she was in there kicking away with her sweet face all squished up. I just pray Charlotte doesn't feel any pain as she struggles.
I doubt any doctor's office could do exactly the right thing to keep a patient in my situation from getting upset. However, bringing up the subject of terminating the pregnancy for the thousandth time, and trying to give me samples of formula and a new mom present after telling me how concerned they are didn't help my mental state.
As the feelings of frustration and anger from yesterday's appointment give way to sadness and confusion, I am reminded of how I felt 11 years ago. Now please don't misunderstand me as I am in no way comparing this journey to the tragedy of 9/11 just simply stating I have some of the same feelings. I remember feeling confused and scared. Family and friends that typically gave me strength were struggling as much as I was. Ironically it was Peter Jennings who reached out from the television telling me that as awful as the day was our country would be okay. A blessing maybe? I wish he was here today to tell me I would be ok :)
As Charlotte's mom there is no reason for me that will ever be good enough for her to be so sick. I know God does have a reason but because we don't think the same I will never understand. Maybe our journey will help another family in the future or maybe it is preparation for my family's life work. But I would trade it all in a heartbeat if I could make my sweet baby girl healthy.
Today I will mourn for all that our country lost 11 years ago. I will remember that I am not the only one in the world struggling. I will pray for all those who lost loved ones that day and after. I will pray for all our military and first responders. Especially the sailors and firefighters who are near and dear to my heart :) I will feel a little sorry for myself and my family but not so much that I lose sight of others. I will be a little angry at God but not enough to cause my faith to waiver.
I doubt any doctor's office could do exactly the right thing to keep a patient in my situation from getting upset. However, bringing up the subject of terminating the pregnancy for the thousandth time, and trying to give me samples of formula and a new mom present after telling me how concerned they are didn't help my mental state.
As the feelings of frustration and anger from yesterday's appointment give way to sadness and confusion, I am reminded of how I felt 11 years ago. Now please don't misunderstand me as I am in no way comparing this journey to the tragedy of 9/11 just simply stating I have some of the same feelings. I remember feeling confused and scared. Family and friends that typically gave me strength were struggling as much as I was. Ironically it was Peter Jennings who reached out from the television telling me that as awful as the day was our country would be okay. A blessing maybe? I wish he was here today to tell me I would be ok :)
As Charlotte's mom there is no reason for me that will ever be good enough for her to be so sick. I know God does have a reason but because we don't think the same I will never understand. Maybe our journey will help another family in the future or maybe it is preparation for my family's life work. But I would trade it all in a heartbeat if I could make my sweet baby girl healthy.
Today I will mourn for all that our country lost 11 years ago. I will remember that I am not the only one in the world struggling. I will pray for all those who lost loved ones that day and after. I will pray for all our military and first responders. Especially the sailors and firefighters who are near and dear to my heart :) I will feel a little sorry for myself and my family but not so much that I lose sight of others. I will be a little angry at God but not enough to cause my faith to waiver.
Isaiah 55:8-9
8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the Lord.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
neither are your ways my ways,”
declares the Lord.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
http://www.youtube.com/watch?v=4mmgV6mPvb0
Friday, September 7, 2012
New Doctors
Wow it's been a week already?! Turns out is wasn't as easy as I thought to find a new OB half way through a high risk pregnancy with a sick baby. But after a few breakdowns, a lot of phone calls and one personal visit, I have an appointment Monday with a new OB. Dr. Bleich is not only an OB but also a maternal fetal medicine doctor so it is nice that I am combining two doctors. She delivers at Harris Methodist which is connected to Cook's by a skybridge. I was slightly confused when I said I would deliver at Cook's...since they don't deliver babies ;)
Dr. Aimee, our pediatrician, has us set up with the neurology team and I am waiting on a call back from Dr. Roberts office for an appointment time.
So that's where we are. If anyone reading this knows good stuff about any of these doctors, please let me know! So far I just know they come highly recommended and when I "googled" them they have kind faces :)
On a personal note, I have learned a lot over the last few weeks. Not just about medicine, birth defects, hospitals, doctors etc. But also about people. I know that next time I know someone in a tight spot and I don't know what to say, I will say something. Is it awkward? Yes! But saying something "wrong" is always better than saying nothing at all. At least in my opinion. I have also learned how important it is to step outside of yourself and family and notice what is happening around you. It gives you so much more perspective on your own situation.
I say this not as a lecture to anyone reading but to myself. I have never been in a situation where anonymous cards came in the mail or meals were delivered or all my long time friends were there to lend a helping hand or ear. Sometimes I think "Wow, my situation must really stink!" but mostly I am just thankful. So even now in the middle of this chaos I am trying to notice others around me struggling so maybe I can send a card or lend a hand.
The quote "Be kinder than necessary, for everyone you meet is fighting some kind of battle" has a whole new meaning. I would rather give everyone the benefit of the doubt. Even the crazy Dad at carpool that parks in the line and gets out ;)
“Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave.” (Ephesians 4:32)
Dr. Aimee, our pediatrician, has us set up with the neurology team and I am waiting on a call back from Dr. Roberts office for an appointment time.
So that's where we are. If anyone reading this knows good stuff about any of these doctors, please let me know! So far I just know they come highly recommended and when I "googled" them they have kind faces :)
On a personal note, I have learned a lot over the last few weeks. Not just about medicine, birth defects, hospitals, doctors etc. But also about people. I know that next time I know someone in a tight spot and I don't know what to say, I will say something. Is it awkward? Yes! But saying something "wrong" is always better than saying nothing at all. At least in my opinion. I have also learned how important it is to step outside of yourself and family and notice what is happening around you. It gives you so much more perspective on your own situation.
I say this not as a lecture to anyone reading but to myself. I have never been in a situation where anonymous cards came in the mail or meals were delivered or all my long time friends were there to lend a helping hand or ear. Sometimes I think "Wow, my situation must really stink!" but mostly I am just thankful. So even now in the middle of this chaos I am trying to notice others around me struggling so maybe I can send a card or lend a hand.
The quote "Be kinder than necessary, for everyone you meet is fighting some kind of battle" has a whole new meaning. I would rather give everyone the benefit of the doubt. Even the crazy Dad at carpool that parks in the line and gets out ;)
“Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave.” (Ephesians 4:32)
Friday, August 31, 2012
A strong girl despite a weak heart
Quick update from my phone as we head out of town for the holiday. Wishing I could say she has a perfect heart but that's not the case. It's pretty hard to sum up a 3 hour appointment in a few sentences but here goes. Charlotte has an AV canal defect and possibly total anomalous pulmonary venous connection. Basically a big hole in the center of her heart and the veins leading back to the heart from the lungs aren't connected to the left atrium like they should be. In an ideal situation, she will have surgery at 4 months to fix the defects. However a number of complications could cause too much stress on her heart prior to Jan or when she is born and she would not survive. There is also a possibility that the complications we learned about will cause her heart to take priority and the surgeons would have to figure out how to perform the surgery before the opening in her back is closed. Clearly an issue since heart surgery requires her to lay on her back.
I am trying my best to plan ahead and gain knowledge but take one day at a time. Much easier said than done. Definitely not the outcome I was praying for but I can't let something in the past cause me to stumble. A very long road is ahead.
Thanks for all the prayers. He is certainly the reason I am not curled up in the fetal position...at least for now ;)
Thursday, August 30, 2012
Rockstar Pediatrician
Dr. Aimee is exactly what we needed. An advocate, who is kind, thoughtful, very smart and on top of things and who is willing to help even though Charlotte won't technically be her patient for months. After I left her a message she called me from home on Tuesday and took over. She consulted with the maternal fetal medicine Dr. and got all the information. Turns out there is some debate on whether Charlotte truly has a heart defect and that is why they want us to see a cardiologist first. If it turns out her heart is fine, they want to try and get us into a program that would do the in utero surgery. Just the thought of this surgery sends me over the edge and into heart palpitations so I am not letting my mind go there yet.
Dr. Aimee called the cardiologist at Cook's but they didn't have appointments until October. Evidently she didn't let that stop her and after two days of begging and pleading they found an appointment for us tomorrow!
To sum it up it looks like we are going to deliver at Cook Children's Hospital in Fort Worth. We have an appointment with a pediatric cardiologist there and I am still working on getting set up with a new OB.
This week has been amazing and completely overwhelming. Charlotte's big brother started kindergarten which is a Spanish immersion program so every other day he has no idea what his teacher is saying! Her sister met her new preschool teacher and will start there next week. And to top it off the downstairs AC broke. Lucky for me both the kids seem to love school and are adjusting well. Plus, Jared is incredibly handy and with the help of google replaced the blower saving us more than I care to think about.
There have been multiple times I feel like I am making a mistake or choosing the wrong path and I start to panic. But I am going to try and remember this piece of advice from my amazing sister-in-law, Holly. She said, "You just jump in with both feet and pray for strength to overcome what comes your way!"
I once heard my friend Rebecca pray, "God I am asking for the big one, the miracle that only you can deliver." So my prayer today is God let Charlotte's heart be healthy. If his will supersedes mine then so be it, but I won't be afraid to ask :)
Dr. Aimee called the cardiologist at Cook's but they didn't have appointments until October. Evidently she didn't let that stop her and after two days of begging and pleading they found an appointment for us tomorrow!
To sum it up it looks like we are going to deliver at Cook Children's Hospital in Fort Worth. We have an appointment with a pediatric cardiologist there and I am still working on getting set up with a new OB.
This week has been amazing and completely overwhelming. Charlotte's big brother started kindergarten which is a Spanish immersion program so every other day he has no idea what his teacher is saying! Her sister met her new preschool teacher and will start there next week. And to top it off the downstairs AC broke. Lucky for me both the kids seem to love school and are adjusting well. Plus, Jared is incredibly handy and with the help of google replaced the blower saving us more than I care to think about.
There have been multiple times I feel like I am making a mistake or choosing the wrong path and I start to panic. But I am going to try and remember this piece of advice from my amazing sister-in-law, Holly. She said, "You just jump in with both feet and pray for strength to overcome what comes your way!"
I once heard my friend Rebecca pray, "God I am asking for the big one, the miracle that only you can deliver." So my prayer today is God let Charlotte's heart be healthy. If his will supersedes mine then so be it, but I won't be afraid to ask :)
Matthew 18:19-20
19 “Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. 20 For where two or three gather in my name, there am I with them.”
Monday, August 27, 2012
Microarray Results
The microarray came back normal. What does this mean? Um, well, you see...I'm not really sure! The Dr.'s statement was that as far as our current technology goes (which is pretty great, by the way) Charlotte is a chromosomally normal child. That is good I guess. It does leave us with the question of how could so much have gone wrong? And as her mother I think, what the heck did I eat, drink or do that would cause this. But, in the end there are never answers to the why's and that leads us back to trusting in God.
The next step is to decide where we will deliver. There are 3 hospitals in the DFW area that can do the surgery for Spina Bifida. Our current pediatrician, who we LOVE, is a part of Cook's Children so we are leaning towards that hospital. Several people have mentioned the in utero procedure for SB. It started as a trial at CHOP (Children's Hospital of Philadelphia) and is now out of trial and at several hospitals in other states. There is some conflicting data on the risks and benefits and on top of that several doctors have told us that Charlotte is not a good candidate for this surgery. After some prayer, I agree. I wish I could fix her now but I believe her heart needs more time to develop and possibly correct itself so she will be strong enough to endure the SB surgery.
Next we will see the pediatric cardiologist for our hospital to confirm the heart defect and find out more details. Then we will meet with the neurological team that will perform the SB surgery. We know that the opening is in the lumbar sacral region but they will provide more specifics. FYI The lower on the spine the less neurological damage. Plus, I will need a new OB because mine delivers only at Lewisville and Flower Mound.
Whew! We ask that you pray that we are led to the right doctors and hospital for Charlotte and for continued strength and endurance as new struggles arise. And on a side note pray for one of our doctors and her family as her father passed away last week.
The next step is to decide where we will deliver. There are 3 hospitals in the DFW area that can do the surgery for Spina Bifida. Our current pediatrician, who we LOVE, is a part of Cook's Children so we are leaning towards that hospital. Several people have mentioned the in utero procedure for SB. It started as a trial at CHOP (Children's Hospital of Philadelphia) and is now out of trial and at several hospitals in other states. There is some conflicting data on the risks and benefits and on top of that several doctors have told us that Charlotte is not a good candidate for this surgery. After some prayer, I agree. I wish I could fix her now but I believe her heart needs more time to develop and possibly correct itself so she will be strong enough to endure the SB surgery.
Next we will see the pediatric cardiologist for our hospital to confirm the heart defect and find out more details. Then we will meet with the neurological team that will perform the SB surgery. We know that the opening is in the lumbar sacral region but they will provide more specifics. FYI The lower on the spine the less neurological damage. Plus, I will need a new OB because mine delivers only at Lewisville and Flower Mound.
Whew! We ask that you pray that we are led to the right doctors and hospital for Charlotte and for continued strength and endurance as new struggles arise. And on a side note pray for one of our doctors and her family as her father passed away last week.
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