I appologize to those of you that have been following Millie's journey exclusively on the blog. Since I have been forced to rely on mobile technology it has been too hard to access both formats. The caring bridge site is much more mobile friendly so that is what I will be relying on for the time being. Please add our caring bridge website to your favorites or download the app and you can receive alerts as soon as I update on that site. Thanks xoxoxo
Friday, January 30, 2015
Sunday, January 25, 2015
Delivery Status: Within Hours
Countdown to Delivery
Friday morning Heath and I left for our cardiology appointment with my hospital bags packed ready for the hospital. The cardiology visit was supposed to determine the decision between delivering Friday night or admitting to the hospital for regular monitoring until delivery was appropriate (hence the packed bags). Luckily, our baby girl's heart had not changed over the course of the week, the doctor even thought her ventricular squeeze was more vibrant than the previous week! The cardiologist called our high risk doctor while we waited to learn our instructions for admittance to the hospital. Surprisingly, the cardiologist came back to report that our high doctor felt we could remain outpatient until our visit with him on Monday. This was extremely exciting news as we got to spend our last few days before baby arrived in the comfort of our home.
My parents had driven through the night Thursday night to get to Atlanta by Friday morning in case the doctors had decided to deliver us on Friday. It turns out that we feel very blessed to have avoided delivery on Friday. We would have ended up having surgery around 5 or 6 pm when shift change would have been occurring, when weekend staff would have been moving in, the transport team would have been less readily available, traffic would have been in rush-hour and specialists would not have been as easily available. Furthermore, my OB was up all night Thursday night performing 3 emergency surgeries in the ER, followed by 4 scheduled surgeries one natural delivery on Friday. Needless to say my OB was exhausted by the time I spoke to her around 5pm on Friday and she was just as grateful as we were to be holding off at least a few more days.
Getting to stay outpatient also meant that Heath and I would get to attend the 'Baby, Bourbon and BBQ' baby
shower that our friends were throwing for us Saturday evening!! First, I had to go into the hospital for an outpatient Non-Stress Test Saturday afternoon. Mom joined me and we passed the time playing cribbage until we got the word that baby girl was doing just fine. Our friends threw us the sweetest, most generous party with delicious homemade smoked BBQ! My parents got to join us at the party and we all just had the most wonderful time celebrating our baby girl and the fact that we are about to be parents in a few short days!!!
We feel beyond grateful to have such wonderful friends and family spoiling us and providing us with so much support when we have really needed it the most! As we plan for delivery in the next few days it is a very surreal feeling to know exactly when life is about to change. Of course we feel the normal anxieties and excitements about becoming new parents but there is the hint of general underlying anxiety about her condition and how she will do once delivered. We are beyond hopeful and feeling positive that she will be a tremendous fighter. All of your prayers and love help us to feel so hopeful as we wind down to delivery 7 weeks later than we could have expected when we first learned about her conditions. It is strange to look in the mirror at my belly and know that it will be so different in a few days. It's exciting to know that we will finally get to see those squirmy little limbs that we feel moving around in my belly but it's also tough not knowing if we'll get to hold her right away or when we will get to bring her home. Overall, we are very blessed to have our parents here with us and friends and family on standby to come shower us with love once baby girl arrives.
So in the meantime we ask that you all continue your prayers, love and positive thoughts as we prepare for delivery at the start of week 37. We ask that you especially keep us in your thoughts Tuesday morning at 9 am when baby girl is scheduled to arrive!
Thursday, January 22, 2015
Delivery Status: Pending
Delivery Status: Pending
We have met with our high risk doctor's colleague and he decided that things have progressed to the state where we need to consider if the baby is safer in or out. Luckily we have made it to 36 weeks (YAY!!!). Delivery in week 36 is considered preterm while week 37 is only considered early term. Therefore, our delivery date has tentatively been scheduled for the start of week 37. The doctors felt that admission until delivery was not necessary given the type of monitoring that our baby needs (just one 30-60 minute biophysical ultrasound per day), therefore we will now be seeing the doctors outpatient every single day until our daughter comes at week 37 or until her condition shows signs of the need to deliver now. Heath and I are again meeting with my high risk doctor today and want to confirm that these next 5-6 days are worth the wait for our daughter's best overall well-being. We are feeling anxious and ready to meet our little girl. We also feel so positive about her potential as she transitions from my body to the challenges of managing on her own. We know she is going to be surrounded by great medical staff and precise medical care so we trust that she will be taken very well care of from the moment she arrives. My parents are going to be heading down in the next day or two and my in-laws will head over as soon as we give them the nod.
Monday, January 19, 2015
Update from High Risk Doctor
Update Jan 19
I apologize for the delayed update as I know many of you are curious as to how our visit with the high risk doctor went today. Overall, our high risk doctor feels that the baby is doing really well in all aspects other than the progressing heart failure. He feels that the progression is not unexpected and at this time is not causing any other symptoms of concern (like hydrops). But to be safe he is having us follow-up with his colleague, Dr. Gomez, on Wednesday. Dr. Gomez is the colleague we saw way back in week 29 who had recommended my initial admission to the hospital. My high risk doctor feels that from this consultation one of three things will be recommended: immediate delivery Wednesday or Thursday, admission to hospital for continued monitoring of baby's condition attempting to reach week 37 or beyond, or we continue on outpatient basis checking in every other day until delivery is appropriate. So once again the possibilities are of a wide range and we don't really know what to expect. I have gone ahead and cleared the rest of my work week in case I do get admitted to the hospital for delivery or monitoring. Overall, we are very pleased to hear that our baby girl is remaining strong and meeting all other markers like a healthy baby would. Heath and I were also able to meet with the Neonatologist (NICU doctor) today to get a better understanding of how our daughter will be cared for immediately after delivery and thereafter.
Since our lives are potentially changing very soon, Heath and I decided on one last date night tonight so we went to the movies to see American Sniper. It was a very powerful movie and was interesting to watch when an adverse situation is impacting your own life. It gives you a whole different viewpoint on situations like that.
Thank you again for all of the love and support that has been continuously showered upon us. We ask that you continue to keep all three of us in your prayers as we get closer to welcoming our baby girl into this world. We pray for her strength and overall health. We pray for the doctors and healthcare providers that will care for her and I in the upcoming days/weeks/months.
Saturday, January 17, 2015
Week 35
week 35
So far week 35 has proven to be yet another emotional roller-coaster like other weeks.
This week was yet another week of many, many doctor's visits. We had our regular check-ins on Monday and Wednesday with our high risk doctor. On Monday, he spoke with our neuroradiologist and confirmed that we could reasonably carry the baby until 39 weeks and that we are safe to deliver at our hospital Kennestone. Therefore, on Wednesday when I went to see my OB she was already working on booking our C-section for a week 39 mid-morning slot. Mid-morning is chosen to avoid shift change and so the horrible Atlanta traffic can be reasonable in case baby girl needs transfer to the downtown Children's. Our doctors did agree that our daughter could possibly be born at 39 weeks with minimal complications and/or minimal heart issues that would be easy to manage with a short stay at the NICU at Kennestone and then potentially discharge to home within a few days. This was a really exciting potential and made us feel really hopeful for the chance of starting out our days as a "normal" family with a lot less medical involvement from the onset! I am also really encouraged to be able to have my OB deliver our baby because she has been such a tremendous advocate for us and is working so hard to make sure all the right people are in place when we go to have the baby.
Tuesday we were able to meet with a pediatric neurologist, Dr. Berenson. He apparently has tremendous experience treating neonates with brain issues. He was very frank with us and expressed that the damage is extensive throughout the left side of the brain. Therefore, our baby girl is very likely to experience motor weaknesses and/or paralysis on the right side of her body. He also expects a high likelihood for seizures. He assured us that we will start therapeutic interventions proactively within the first month of her life. He also expressed that seizures can often be controlled with medicine or surgical intervention. He did express tremendous hope in the fact that the right side of her brain looks completely intact. He feels that the healthy right side of the brain is already trying to do rerouting and help improve her intellect by making up for the left sided loss with the healthy tissue on the right side. Overall, this information was not surprising but of course it is terribly hard to hear. We keep wanting to hear "that everything will be fine" so anything other than those words still sting even though we KNOW everything won't be fine. To stay positive from what Dr. Berenson said we are very hopeful that she will have minimal problems with intellect and speech. This would be amazing since we just want her to have a good quality of life and a chance at an independent adult life.
Wednesday when I saw my OB, I was experiencing considerable swelling of my right lower leg and right hand which I had not experienced previously so my doctor was worried about the unilateral swelling and felt best that I get it checked out. Luckily Heath has an "in" with the vascular doctors since those are the guys he works with everyday. They snuck us in quick and scanned my arm and leg for blood clots. The test took only about 10 minutes since we were doing it off the books and luckily it came up clear! So I just got to go home and prop my feet up!
Friday was our regular follow-up with the pediatric cardiologist. If you remember from a previous post, the cardiologist had pushed our appointment out by 2 weeks because baby girl had been remaining so stable. This day he spent a lot longer looking at images and then spent a lot of time doing measurements prior to consulting on the results with us. We learned that he had actually called another pediatric cardiologist down at the downtown Children's hospital to consult on our daughter's findings. He felt that the heart had definitely enlarged, the right sided heart failure had gone from mild to a definite moderate state and that her tricuspid valve was experiencing increased regurgitation. Based on these findings he made it clear that she will not be able to stay in utero until 39 weeks. He feels that 37 weeks would be good because that would be considered term but I got the feeling that she might need to come even earlier than that. He expressed that she will be sick when she is born and gave me the feeling that she will definitely need to transfer to the Children's hospital downtown. He was going to put in a call to our high risk doctor and asked us to come back in 1 week. We see my high risk doctor again on Monday and I suspect we will have a much sooner delivery date to discuss at that appointment. Based on the current condition of her heart, the doctors need to start deciding whether she is safer in or out at this point. As you can imagine, this is certainly not the news we wanted to hear. Again it is not at all unexpected and the doctors had warned us of this but it is the kind of news that keeps knocking us down from that pedestal of high hope that we keep striving for, the one where we hope for the best possible health for our daughter. Overall, we still feel relieved that the doctors are monitoring her condition and making the best medical decision for her overall well being. We know that even if she has to come in January that she is going to be surrounded by the best possible doctors to give her the best possible outcomes.
I think she just wants to get here in time to cheer on the Packers in the Super Bowl!! She sure was cheering a lot against the cowboys! She'll hopefully be cheering hard again against the Seahawks tomorrow!
I think she just wants to get here in time to cheer on the Packers in the Super Bowl!! She sure was cheering a lot against the cowboys! She'll hopefully be cheering hard again against the Seahawks tomorrow!
In other news we have gotten a lot closer to getting her room ready. She now has a crib, mattress and all clean clothes ready to go! Her dresser and book case were custom made this week and we will be picking them up this weekend!
Friday, January 9, 2015
Neurosurgeon Meeting
Jan 8, 2015--Today we met with the Neurosurgeon, Dr. Wrubel to determine his roll in our daughter's care. Ultimately he will be the back up plan should the interventional surgery performed by Dr. Dion become complicated or unable to complete. Hopefully, he will not need to perform an open brain operation on our daughter at any time but he is still very important to have on our team. He also reassured us that the vascular surgeries will eventually cure her vascular malformation with no risk of occurrence.
He did confirm for us that the baby will need to be transferred to the downtown Children's Hospital at Egleston on either the day she is born or the very next morning. The need for this is based on the current condition of her heart and the skilled team available at Egleston that will be able to stabilize her heart. This is important in order to allow her body to mature until she is at least 6 months of age when she will need her first vascular surgery. Dr. Wrubel will round on our daughter in the hospital and likely order an MRI of her brain before she is discharged home. He and the team of physicians will then decide her future plan of care with the information provided in that MRI. Because the baby will need to be transferred to the Children's hospital downtown and there is no where close for me to deliver near that hospital, Dr. Wrubel suggested I deliver where my OB is because my existing relationship with her is important. He felt confident in the capabilities of our hospital's neonatal team to be able to prep the baby for transfer.
He again reiterated that it is impossible to determine what limitations the baby will have based on the MRI alone but he did feel confident about the fact that her images show no other signs of concern (other concerns could be enlarged head, enlarged ventricles, hydrocephalus or hydrops for examples). He said that yes she is likely to have some deficits but what kind and extent will not be known until she is here, until another MRI can be performed and until she grows and develops. He expressed that she will begin receiving therapeutic care very early on to help combat these issues and described how plastic a baby's brain is. So for example, say the area of the brain that is designed for fine motor skills of the right hand was damaged then the brain can't send the signals to that damaged area of the brain. Plasticity means the baby's brain might start creating whole new pathways to a healthy part of the brain that will be able to control the fine motor skills of the right hand. Therapy will then enhance the development of those new pathways. Finally, he did agree that she is predisposed to a higher risk for seizures based on her confirmed brain damage but he felt that her risk was not considerably higher than that of the general population. So while he couldn't guarantee what condition she'll be in he gave us the sense that she just might come out of this with manageable conditions.
Jan 9, 2015--Today we had a regular follow-up with our high risk doctor and he was pleased with the decision to deliver the baby at our original hospital (the same hospital where I was admitted and Heath works at). He will talk with the other doctors to finalize some delivery details but he would like to aim for week 39 for delivery with continued regular visits to monitor for signs of distress. He will have us meet with the Neonatologist (NICU doctor) to discuss the plan for our baby's arrival and transfer. We were also given the name of the Care Coordinator that will help us start to set our daughter up with therapeutic services and other needed aid. Finally, our regular ultrasound was performed and the doctor noted that the vessels in the brain looked a bit better. That the flow did not seem as high as it had in previous sessions. He warned us that position could be playing a roll in the changes seen today and ultrasounds are not nearly as specific as the MRI but again it was nice to hear the word "better"!!
Finally, we learned another great piece of news today. Because of our daughter's current diagnoses she has qualified for free collection of her cord blood and cord tissue at delivery with 5 free years of storage in the cord and tissue bank at Cord Blood Registry (http://www.cordblood.com/). This extremely valuable resource is worth over $3500. We are so thrilled by this opportunity because the umbilical cord blood and tissue contains our daughter's stem cells that doctors may be able to use to treat her heart and brain in the future. This is up and coming science with no direct treatments available for her type of conditions at this exact time but the company will work with our daughter and research scientists to attempt to find her cures should we need them. If we do not end up needing to utilize her tissue in the first 5 years then we can decide to start paying an annual fee to continue to bank her tissue. We view this opportunity as a little extra "insurance plan" for her future health and capabilities.
So needless to say Heath and I are in higher spirits this week and chalk a lot of this good news up to the constant prayers and love coming from our support team! We love you all!!! Keep the prayers, love and positive thoughts coming our way!
He did confirm for us that the baby will need to be transferred to the downtown Children's Hospital at Egleston on either the day she is born or the very next morning. The need for this is based on the current condition of her heart and the skilled team available at Egleston that will be able to stabilize her heart. This is important in order to allow her body to mature until she is at least 6 months of age when she will need her first vascular surgery. Dr. Wrubel will round on our daughter in the hospital and likely order an MRI of her brain before she is discharged home. He and the team of physicians will then decide her future plan of care with the information provided in that MRI. Because the baby will need to be transferred to the Children's hospital downtown and there is no where close for me to deliver near that hospital, Dr. Wrubel suggested I deliver where my OB is because my existing relationship with her is important. He felt confident in the capabilities of our hospital's neonatal team to be able to prep the baby for transfer.
He again reiterated that it is impossible to determine what limitations the baby will have based on the MRI alone but he did feel confident about the fact that her images show no other signs of concern (other concerns could be enlarged head, enlarged ventricles, hydrocephalus or hydrops for examples). He said that yes she is likely to have some deficits but what kind and extent will not be known until she is here, until another MRI can be performed and until she grows and develops. He expressed that she will begin receiving therapeutic care very early on to help combat these issues and described how plastic a baby's brain is. So for example, say the area of the brain that is designed for fine motor skills of the right hand was damaged then the brain can't send the signals to that damaged area of the brain. Plasticity means the baby's brain might start creating whole new pathways to a healthy part of the brain that will be able to control the fine motor skills of the right hand. Therapy will then enhance the development of those new pathways. Finally, he did agree that she is predisposed to a higher risk for seizures based on her confirmed brain damage but he felt that her risk was not considerably higher than that of the general population. So while he couldn't guarantee what condition she'll be in he gave us the sense that she just might come out of this with manageable conditions.
Jan 9, 2015--Today we had a regular follow-up with our high risk doctor and he was pleased with the decision to deliver the baby at our original hospital (the same hospital where I was admitted and Heath works at). He will talk with the other doctors to finalize some delivery details but he would like to aim for week 39 for delivery with continued regular visits to monitor for signs of distress. He will have us meet with the Neonatologist (NICU doctor) to discuss the plan for our baby's arrival and transfer. We were also given the name of the Care Coordinator that will help us start to set our daughter up with therapeutic services and other needed aid. Finally, our regular ultrasound was performed and the doctor noted that the vessels in the brain looked a bit better. That the flow did not seem as high as it had in previous sessions. He warned us that position could be playing a roll in the changes seen today and ultrasounds are not nearly as specific as the MRI but again it was nice to hear the word "better"!!
 | |||||
| Most recent 3D picture of our sweet girl (that's her foot right in front of her chin) |
So needless to say Heath and I are in higher spirits this week and chalk a lot of this good news up to the constant prayers and love coming from our support team! We love you all!!! Keep the prayers, love and positive thoughts coming our way!
Tuesday, January 6, 2015
34 Weeks
34 WEEKS
I am 34 weeks pregnant today! Our baby girl is still growing and getting stronger inside of me instead of inside of a warming bed in a NICU! It's hard to believe that it has already been 4 weeks since we were sent to the hospital with the expectation of delivering a baby by week's end. While being inside of me isn't necessarily protecting our little girl's brain, at least we know she is in the best place possible to keep developing the rest of her organs and she is continuing to put on fat, fat that will nourish her nerves and hopefully strengthen her brain too. She continues to show good stability and that is what we continue to hold onto for hope. While 34 weeks was our first benchmark we wanted to meet for her safety in delivery, we are now hoping for 36 weeks and even 38 weeks!
I just wanted to take a moment to thank each of you for following along in our journey towards becoming new parents. I want those of you that have reached out to me to know how much your words of encouragement and hope have helped me along the way. In trying to process our situation, I can quickly become overwhelmed by all of the unknowns. Your encouragement, prayers and belief in our abilities as new parents have all helped me tremendously to remember to hold onto hope for our little girl to be able to heal and get better despite the current diagnoses. Many of you have said to me that you feel helpless and wish you could do more for us but truly your words of love and encouragement are worth more than you could possibly know. Knowing that you are sending prayers up on our behalf help me to keep having faith. You all help to lift my spirits and help me to focus on cherishing this time that I have with our little girl kicking around in my belly.
Thank you to all of our family and friends :)
Sunday, January 4, 2015
Emotional Rollarcoaster
Jan 3, 2015--Yesterday (the 3rd) was quite possibly one of the biggest emotionally challenging days for me thus far.
The morning began with a breastfeeding class. I was really glad to take this class because I learned a ton of information. The instructor was also nice enough to highlight the differences for a mother of a premie/NICU baby as I will likely have. One thing I pray and hope for is the ability to breastfeed my baby girl. I know that with her conditions she may have difficulty with suck-swallow so I am nervous but at the bare minimum hope that I can at least provide her with my milk. Receiving a mother's milk is so good for a baby's brain development so I don't want to deprive her of that unless it is absolutely medically necessary to feed her with formula.
After the class I came home to two pieces of mail. The first was our itemized statement from the hospital for my 5 day stay totally a little over $12000. That's a crazy outrageous amount of money but pretty much what I was expecting. What I wasn't expecting was the second piece of mail from my insurance company stating that in their retrospective authorization of my hospital stay they decided that the treatments provided were not necessary of an acute inpatient hospital stay so they were denying my entire claim. I have worked really hard to prevent anger from being one of the emotions I feel about our baby's condition, so therefore my anger has been diverted to absolute frustration and disgust towards the insurance company. I will of course talk to my admitting doctors and request their assistance in getting this appealed but in the mean time I am quickly learning that the insurance company is not there to be your safety net in the time of absolute need but there to find any way to avoid having to pay the high dollar amounts that are associated with major medical problems. It is exhausting, mentally and emotionally, to have to manage these insurance problems when there are so many other major decisions to be handled right now.
I spent part of the afternoon taking down Christmas decorations which made me sad because I love how pretty they make the house but it is time for nesting and prepping for the arrival of our little girl.
I then got online and tried to learn more about the Polymicrogyria (PMG) that our daughter has been diagnosed with. Overall, my web searches have been futile and frustrating because PMG is the name for what is happening to her brain but there are many sub-diagnoses that provide a more specific picture of what symptoms that person might have. As of right now our daughter has not received that sub-diagnosis and probably won't until she has an MRI after birth. The other frustrating part was that I could not find much data about outcomes of children diagnosed in utero because primarily children are not diagnosed until they experience a catastrophic event during their developmental years and many more go misdiagnosed for long periods of time. What I really needed to know is what type of symptoms we can expect for our little girl so I found a support group on facebook and joined it.
In initially reading through the support group I became very overwhelmed and thought I had made a mistake because so many of the children on there had considerable disabilities and there were a ton of discussions about the challenges their children face. I initially felt severe denial as I could not accept that this is what our daughter will be facing. I then began to feel very depressed as I was looking at the reality of a very challenging future for our little girl and us. I decided, however, to introduce myself to the group and explain our unique situation of the diagnosis in utero and asked for general advice. I received over 25 responses, mostly of people introducing themselves and their children to me. Every single child presented to me was completely differently from the next child and with all entirely different levels of involvement. Several people that reached out to me are in the Atlanta area and were able to give me advice about neurologists that have experience with this diagnosis.
One very sweet woman in Kentucky reached out to me and actually talked to me on the phone to help explain many of the government services available to children with PMG. While the services are probably called something different in GA she mentioned that the baby will qualify for Medicaid that is not based on our salary but based on her diagnosis in order to help pay for her childcare needs. She will qualify for WIC which can help pay for some of her needed supplies like special formulas. She will qualify for early intervention programs that will provide OT, PT and speech. In Kentucky, there is even a program to help pay for the medical insurance premiums and she believes there should be something similar in GA. While it was sad to hear that the diagnosis of PMG is an automatic qualifier for many of these services, it was really encouraging to learn about all of these possibilities available to our girl and us. This woman offered a lot of genuine encouragement.
I also chatted online with another woman who's child was diagnosed in utero around the same week as us. Her son seems to have different complications of PMG than what our girl does (from my ability to understand the MRI) but she was able to give me a lot of good advice about the decisions she and her husband made about where to deliver their child and how to initiate services for their child immediately after birth. It was just so helpful to hear from someone who had experience with dealing with this diagnosis so early on in the baby's life. She also helped to validate a lot of the feelings I am having about learning all these scary things about our daughter. She made me very much aware of the fact that we need a neurologist on our team right now so I will be asking our doctors for a referral.
Some of the consistent things I have learned about this diagnosis are:
Finally, the day ended with me skyping with my family as they celebrated our immediate family Christmas. It was so fun to watch them open all of their presents and feel like I was a part of it even though I was 800 miles away.
Overall, I have been able to accept the vascular and cardiac conditions that our daughter will face because there is a definitive plan with definitive risks and benefits. I have mostly been in denial about the brain damage because there is nothing definitive about it now or ever. It scares the crap out of me and I am not entirely ready to accept how much it will change our lives and the plans we had in how we were going to raise our child. Anyways, thanks for letting me vent and express some of the emotions that I am dealing with.
The morning began with a breastfeeding class. I was really glad to take this class because I learned a ton of information. The instructor was also nice enough to highlight the differences for a mother of a premie/NICU baby as I will likely have. One thing I pray and hope for is the ability to breastfeed my baby girl. I know that with her conditions she may have difficulty with suck-swallow so I am nervous but at the bare minimum hope that I can at least provide her with my milk. Receiving a mother's milk is so good for a baby's brain development so I don't want to deprive her of that unless it is absolutely medically necessary to feed her with formula.
After the class I came home to two pieces of mail. The first was our itemized statement from the hospital for my 5 day stay totally a little over $12000. That's a crazy outrageous amount of money but pretty much what I was expecting. What I wasn't expecting was the second piece of mail from my insurance company stating that in their retrospective authorization of my hospital stay they decided that the treatments provided were not necessary of an acute inpatient hospital stay so they were denying my entire claim. I have worked really hard to prevent anger from being one of the emotions I feel about our baby's condition, so therefore my anger has been diverted to absolute frustration and disgust towards the insurance company. I will of course talk to my admitting doctors and request their assistance in getting this appealed but in the mean time I am quickly learning that the insurance company is not there to be your safety net in the time of absolute need but there to find any way to avoid having to pay the high dollar amounts that are associated with major medical problems. It is exhausting, mentally and emotionally, to have to manage these insurance problems when there are so many other major decisions to be handled right now.
I spent part of the afternoon taking down Christmas decorations which made me sad because I love how pretty they make the house but it is time for nesting and prepping for the arrival of our little girl.
I then got online and tried to learn more about the Polymicrogyria (PMG) that our daughter has been diagnosed with. Overall, my web searches have been futile and frustrating because PMG is the name for what is happening to her brain but there are many sub-diagnoses that provide a more specific picture of what symptoms that person might have. As of right now our daughter has not received that sub-diagnosis and probably won't until she has an MRI after birth. The other frustrating part was that I could not find much data about outcomes of children diagnosed in utero because primarily children are not diagnosed until they experience a catastrophic event during their developmental years and many more go misdiagnosed for long periods of time. What I really needed to know is what type of symptoms we can expect for our little girl so I found a support group on facebook and joined it.
In initially reading through the support group I became very overwhelmed and thought I had made a mistake because so many of the children on there had considerable disabilities and there were a ton of discussions about the challenges their children face. I initially felt severe denial as I could not accept that this is what our daughter will be facing. I then began to feel very depressed as I was looking at the reality of a very challenging future for our little girl and us. I decided, however, to introduce myself to the group and explain our unique situation of the diagnosis in utero and asked for general advice. I received over 25 responses, mostly of people introducing themselves and their children to me. Every single child presented to me was completely differently from the next child and with all entirely different levels of involvement. Several people that reached out to me are in the Atlanta area and were able to give me advice about neurologists that have experience with this diagnosis.
One very sweet woman in Kentucky reached out to me and actually talked to me on the phone to help explain many of the government services available to children with PMG. While the services are probably called something different in GA she mentioned that the baby will qualify for Medicaid that is not based on our salary but based on her diagnosis in order to help pay for her childcare needs. She will qualify for WIC which can help pay for some of her needed supplies like special formulas. She will qualify for early intervention programs that will provide OT, PT and speech. In Kentucky, there is even a program to help pay for the medical insurance premiums and she believes there should be something similar in GA. While it was sad to hear that the diagnosis of PMG is an automatic qualifier for many of these services, it was really encouraging to learn about all of these possibilities available to our girl and us. This woman offered a lot of genuine encouragement.
I also chatted online with another woman who's child was diagnosed in utero around the same week as us. Her son seems to have different complications of PMG than what our girl does (from my ability to understand the MRI) but she was able to give me a lot of good advice about the decisions she and her husband made about where to deliver their child and how to initiate services for their child immediately after birth. It was just so helpful to hear from someone who had experience with dealing with this diagnosis so early on in the baby's life. She also helped to validate a lot of the feelings I am having about learning all these scary things about our daughter. She made me very much aware of the fact that we need a neurologist on our team right now so I will be asking our doctors for a referral.
Some of the consistent things I have learned about this diagnosis are:
- that PMG is extremely rare and subdiagnosis are even more rare, therefore it is really hard to find information about what to expect for your children's growth and development
- there is a guru neurologist and geneticist physician located in Seattle who is doing the most specific research on PMG and may be a good resource for us in the future.
- almost all forms of PMG have associated seizures and epilepsy. This is of course frightening because recurrent seizures can be extremely difficulty to control and can contribute to developmental delays
- most children with PMG have low muscle tone which can cause some delays in their development to severe limitations and disabilities with reliance on assistive devices.
- the speech region of the brain is typically impacted to some degree as well. This can mean difficulty with expressive speech, understanding speech, developing conversation skills, swallowing and eating.
- overall, the severity of each symptom in each individual can range from mild to very severe
- this is absolutely a day-by-day diagnosis and probably always will be.
- there will rarely be concrete answers or predictions for our baby's situation
Finally, the day ended with me skyping with my family as they celebrated our immediate family Christmas. It was so fun to watch them open all of their presents and feel like I was a part of it even though I was 800 miles away.
Overall, I have been able to accept the vascular and cardiac conditions that our daughter will face because there is a definitive plan with definitive risks and benefits. I have mostly been in denial about the brain damage because there is nothing definitive about it now or ever. It scares the crap out of me and I am not entirely ready to accept how much it will change our lives and the plans we had in how we were going to raise our child. Anyways, thanks for letting me vent and express some of the emotions that I am dealing with.
Saturday, January 3, 2015
Pedicatric Cardiology Visit
Jan 2, 2015--Today was our weekly pedicatric cardiology visit for the Echo ultrasound of the baby's heart. The doctor told us that the heart is looking unchanged over the past 2 weeks. If anything he thought some of the doppler readings might have even looked better. The doppler readings look at the blood flow in various vessels. Some vessels have always looked normal (like the umbilical cord) and some are abnormal which they are always monitoring. While the doppler readings are still not NORMAL he did use the word "BETTER" and that was really encouraging to hear since we haven't heard that word yet! "Stable" and "Better" are two words we love to hear right now because that means our baby girl is staying put and continuing to be a fighter!!
Baby is just days away from being at 34 weeks which is when we can start to feel more confident about her well-being should she have to come early.
Thursday, January 1, 2015
Meeting with the Interventional Neuroradiologist
Dec 31, 2014 --Today we got to spend the last day of a tough 2014 learning more about our baby girl's future. First the day started with another standard visit to the high risk doctors for an ultrasound check-up. Because of the holiday we saw yet another new doctor but this doctor went on to exclaim how happy our little girl looked in the womb because of how much she is practice breathing and moving around.
We then traveled to Emory to meet with Dr. Jacques Dion. He comes highly regarded as having the most experience in the Atlanta area with working with these types of issues in babies. He has treated 50-60 babies in his career. This number seems low but that is because these types of conditions are so very rare in babies. The doctors that Heath works with know Dr. Dion personally and also have nothing but wonderful things to say about how skilled he is as a surgeon and how down-to-earth he is as a person. Heath and I did feel that he was very caring and very willing to spend as much time as we needed with him.
He told us that based on the MRI the baby does not appear to have a Vein of Galen malformation. This is a condition he has the most experience treating but he reassured us that our baby's vascular issues are much more manageable than a Vein of Galen. He explain that the Pial fistual should be relatively easy to repair from his surgical stand-point and could likely be fixed with 1-2 operations only. His surgical techniques include using wires and catheters that enter the baby in the femoral arteries (groin) and then travel to the brain where the problem can be treated with coils and/or glue. This operation has some inherent risks for a baby and in general. The risks include:
Overall, Dr. Dion would like the baby to be at least 6 months old before he would need to operate. The reason for this is primarily size and maturation reasons. The earlier intervention would need to be performed the smaller the blood vessels are and the less muscular thickness of the vessels (therefore easier to perforate). Also the smaller the baby is the harder it will be for her to manage the fluids used in the procedure and the less radiology they can use to complete the procedure. The younger the baby is the higher the risks for morbidity and mortality are (from 20-50% risks). Dr. Dion noted that our daughter could be born at full-term with manageable heart issues but during the first few months of her life her condition could worsen to force the surgery prior to 6 months of age. These complications include:
While Heath and I were able to walk away from this meeting feeling confident in Dr. Dion's abilities and plan of care we still have a ton of what-if's to be determined that will play a huge factor in how well our daughter does. So it continues to be a waiting game to see how strong our girl can be and how damaged her brain actually is.
Going forward, Dr. Dion has no desire to deliver early and would like to see her go as close to full term as possible. Therefore, our Maternal Fetal Medicine Doctor and my OB will continue to determine how well our girl is doing in-utero and decide if her condition worsens and needs to be delivered prematurely. If she is delivered early it will be imperative that the neonatal team is able to stabilize her condition, particularly if she is in heart failure at time of birth. If the team is unable to control or stabilize her heart failure then the surgical intervention by Dr. Dion will need to occur immediately for her survival. There is the risk that our girl could go to full term without any concerns prior to delivery but once she has to start functioning on her own, her heart could go into unmanageable heart failure. This is because the placenta is currently helping her to manage the excessive blood flow and prevent all of the pressure from overwhelming her heart. Dr. Dion feels that of all of the types of malformations possible in the brain, her type is the least likely to cause her to go into heart failure at birth. Dr. Dion felt that it was important for the baby girl to be delivered at and treated by the NICU team at Egleston (our children's hospital in the heart of downtown Atlanta, next to Emory). What Dr. Dion didn't realize though is that there is no delivering capabilities at the children's hospital or Emory. Therefore, there is no close hospital to deliver at and transfer would be required. Dr. Dion implied that having to transfer the baby from any location, albeit necessary, would not be ideal for the baby's potential outcome because of the stress on the baby. This has caused much angst for us as we do not know where to deliver the baby then. We want to feel that the NICU team is highly capable of managing a unique situation like ours correctly and quickly, therefore eliminating the need for an emergent transfer. We still need to consult with most of our doctors to figure out what hospital and NICU center is the best option for us. This is a scary decision with a lot of responsibility placed on our shoulders.
Heath and I also learned more about the Polymicrogyria that our daughter has been diagnosed with per MRI. We were under the impression that the vessel issue had caused this damage to the brain and was potentially worsening with time. Dr. Dion informed us that the polymicrogyria is actually a completely separate issue from the Pial AV Fistula. This has frightened the hell out of us because while the vascular issues can be managed relatively well, this condition is going to be more telling about her overall quality of life. Unfortunately, Dr. Dion was not able to elaborate on that condition as it is not vascular in nature and therefore not his area of expertise. We meet with a Pediatric Neurosurgeon on Jan 8th and are very hopeful that this physician will be able to shed more light on the polymicrogyria condition for us. Since we don't know much about it from our physicians I have of course started googling it and am very overwhelmed by the findings.
The general outcomes I have found sound like this:
"There are several different forms of PMG. Common problems associated with PMG in general are: swallowing and speech difficulties, reflux, seizures of varying degrees (about 90% are affected with seizures), developmental delays, lack of muscle coordination, impaired mental cognition of varying degrees, and cerebral palsy-but there can be many others. These impairments can range from very mild to very severe dependent on how much area and what area of the brain are involved"
As you can imagine that broad definition and broad spectrum leaves us feeling very frightened for what is to come and I believe we will never know the true extent until she is growing and developing and her limitations present themselves. What I cannot wrap my brain around is the fact that she will very likely require many interventions including a lot of medication (for heart and/or brain), physical therapy, occupational therapy, speech therapy, specialty devices and orthotics in any or all capacities. We are likely looking at requiring early intervention through the school program with IEPs and such in the future. While I am a physical therapist and have some awareness of this type of lifestyle, it is not something I imagined having to go through myself and still cannot accept the reality of it all. Of course, Heath and I will take on all challenges and provide the very best medical services we can for our baby girl, I just don't think either of us have really, truly been able to picture our future with our daughter going through all of that. We still hold onto the hope and desire of bringing home a stable and relatively healthy little girl that is a tremendous fighter and proves to have very few symptoms at all. We can mentally prepare for the need for surgical intervention around 6 months of age to completely resolves her vascular issues. But what we can't yet wrap our brains around is all of the other interventions and challenges that are yet to present themselves. We are trying our best to accept this reality though so that we are better prepared for a completely different type of life-style in raising our daughter.
Heath and I go forward today to ring in the New Year with prayer and hope that our baby girl will overcome the diagnoses and prove to be a tremendous fighter. We pray that the new year will come with better news as we continue to meet with specialists and prepare for bringing our baby girl into this world.
We hope every one of you had a wonderful and fun New Year's Eve (at least those that could stay up that late...midnight is tough for a pregnant girl to achieve but I did it)!! Onto 2015 with high hopes and blankets of prayers.
We then traveled to Emory to meet with Dr. Jacques Dion. He comes highly regarded as having the most experience in the Atlanta area with working with these types of issues in babies. He has treated 50-60 babies in his career. This number seems low but that is because these types of conditions are so very rare in babies. The doctors that Heath works with know Dr. Dion personally and also have nothing but wonderful things to say about how skilled he is as a surgeon and how down-to-earth he is as a person. Heath and I did feel that he was very caring and very willing to spend as much time as we needed with him.
He told us that based on the MRI the baby does not appear to have a Vein of Galen malformation. This is a condition he has the most experience treating but he reassured us that our baby's vascular issues are much more manageable than a Vein of Galen. He explain that the Pial fistual should be relatively easy to repair from his surgical stand-point and could likely be fixed with 1-2 operations only. His surgical techniques include using wires and catheters that enter the baby in the femoral arteries (groin) and then travel to the brain where the problem can be treated with coils and/or glue. This operation has some inherent risks for a baby and in general. The risks include:
- perforation of the blood vessels by the wires anywhere from the groin to the brain with subsequent internal bleeding
- stunting of leg growth secondary to entering the vessels at that groin region
- blood clots forming from the intervention and traveling to areas of the body that would cause severe injury (stroke, heart attack, pulmonary embolism, etc)
- potential for hemorrhaging in the brain due to the change in pressures once the problem has been fixed (think of it like removing a dam from a river and the banks downstream cannot hold the new rush of water). This type of complication would then need to be surgically addressed by a pediatric neurosurgeon in order to preserve the brain.
- Overall, risk of morbidity and mortality of performing this procedure on a stable baby is 10-20%
Overall, Dr. Dion would like the baby to be at least 6 months old before he would need to operate. The reason for this is primarily size and maturation reasons. The earlier intervention would need to be performed the smaller the blood vessels are and the less muscular thickness of the vessels (therefore easier to perforate). Also the smaller the baby is the harder it will be for her to manage the fluids used in the procedure and the less radiology they can use to complete the procedure. The younger the baby is the higher the risks for morbidity and mortality are (from 20-50% risks). Dr. Dion noted that our daughter could be born at full-term with manageable heart issues but during the first few months of her life her condition could worsen to force the surgery prior to 6 months of age. These complications include:
- the inability to maintain stable heart conditions,
- inability to thrive
- severe developmental delays and/or
- calcification between the white and gray matter in the brain (which is a symptom of ongoing damage to the brain which would be detrimental to her development).
While Heath and I were able to walk away from this meeting feeling confident in Dr. Dion's abilities and plan of care we still have a ton of what-if's to be determined that will play a huge factor in how well our daughter does. So it continues to be a waiting game to see how strong our girl can be and how damaged her brain actually is.
Going forward, Dr. Dion has no desire to deliver early and would like to see her go as close to full term as possible. Therefore, our Maternal Fetal Medicine Doctor and my OB will continue to determine how well our girl is doing in-utero and decide if her condition worsens and needs to be delivered prematurely. If she is delivered early it will be imperative that the neonatal team is able to stabilize her condition, particularly if she is in heart failure at time of birth. If the team is unable to control or stabilize her heart failure then the surgical intervention by Dr. Dion will need to occur immediately for her survival. There is the risk that our girl could go to full term without any concerns prior to delivery but once she has to start functioning on her own, her heart could go into unmanageable heart failure. This is because the placenta is currently helping her to manage the excessive blood flow and prevent all of the pressure from overwhelming her heart. Dr. Dion feels that of all of the types of malformations possible in the brain, her type is the least likely to cause her to go into heart failure at birth. Dr. Dion felt that it was important for the baby girl to be delivered at and treated by the NICU team at Egleston (our children's hospital in the heart of downtown Atlanta, next to Emory). What Dr. Dion didn't realize though is that there is no delivering capabilities at the children's hospital or Emory. Therefore, there is no close hospital to deliver at and transfer would be required. Dr. Dion implied that having to transfer the baby from any location, albeit necessary, would not be ideal for the baby's potential outcome because of the stress on the baby. This has caused much angst for us as we do not know where to deliver the baby then. We want to feel that the NICU team is highly capable of managing a unique situation like ours correctly and quickly, therefore eliminating the need for an emergent transfer. We still need to consult with most of our doctors to figure out what hospital and NICU center is the best option for us. This is a scary decision with a lot of responsibility placed on our shoulders.
Heath and I also learned more about the Polymicrogyria that our daughter has been diagnosed with per MRI. We were under the impression that the vessel issue had caused this damage to the brain and was potentially worsening with time. Dr. Dion informed us that the polymicrogyria is actually a completely separate issue from the Pial AV Fistula. This has frightened the hell out of us because while the vascular issues can be managed relatively well, this condition is going to be more telling about her overall quality of life. Unfortunately, Dr. Dion was not able to elaborate on that condition as it is not vascular in nature and therefore not his area of expertise. We meet with a Pediatric Neurosurgeon on Jan 8th and are very hopeful that this physician will be able to shed more light on the polymicrogyria condition for us. Since we don't know much about it from our physicians I have of course started googling it and am very overwhelmed by the findings.
The general outcomes I have found sound like this:
"There are several different forms of PMG. Common problems associated with PMG in general are: swallowing and speech difficulties, reflux, seizures of varying degrees (about 90% are affected with seizures), developmental delays, lack of muscle coordination, impaired mental cognition of varying degrees, and cerebral palsy-but there can be many others. These impairments can range from very mild to very severe dependent on how much area and what area of the brain are involved"
As you can imagine that broad definition and broad spectrum leaves us feeling very frightened for what is to come and I believe we will never know the true extent until she is growing and developing and her limitations present themselves. What I cannot wrap my brain around is the fact that she will very likely require many interventions including a lot of medication (for heart and/or brain), physical therapy, occupational therapy, speech therapy, specialty devices and orthotics in any or all capacities. We are likely looking at requiring early intervention through the school program with IEPs and such in the future. While I am a physical therapist and have some awareness of this type of lifestyle, it is not something I imagined having to go through myself and still cannot accept the reality of it all. Of course, Heath and I will take on all challenges and provide the very best medical services we can for our baby girl, I just don't think either of us have really, truly been able to picture our future with our daughter going through all of that. We still hold onto the hope and desire of bringing home a stable and relatively healthy little girl that is a tremendous fighter and proves to have very few symptoms at all. We can mentally prepare for the need for surgical intervention around 6 months of age to completely resolves her vascular issues. But what we can't yet wrap our brains around is all of the other interventions and challenges that are yet to present themselves. We are trying our best to accept this reality though so that we are better prepared for a completely different type of life-style in raising our daughter.
Heath and I go forward today to ring in the New Year with prayer and hope that our baby girl will overcome the diagnoses and prove to be a tremendous fighter. We pray that the new year will come with better news as we continue to meet with specialists and prepare for bringing our baby girl into this world.
We hope every one of you had a wonderful and fun New Year's Eve (at least those that could stay up that late...midnight is tough for a pregnant girl to achieve but I did it)!! Onto 2015 with high hopes and blankets of prayers.
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