Where do I begin? I had two appointments scheduled today to deal with issues surrounding both of my children. The first was a prenatal appointment and while I was planning on discussing some pretty significant concerns surrounding my care, felt it would go relatively well. The second appointment was the annual IFSP for My Girl's Early Intervention Services. This meeting was slated to be a challenge as I was prepared to "fight" to keep her SLT and OT services on a weekly basis. My preparedness was all backwards and I am sitting here still recovering from the hearty cry my first appointment of the day caused.
What I am about to write is my interpretation and take-away from my appointment this morning with my local group. I realize every story has two sides, that each party has their own reality and views any particular situation through their own personal lens. My personal documentation of today's events is in no way intended to defame or smear.
I will admit there was no rehearsal on my part nor did I have a list of notes with me to keep me on track. This meeting was sincerely a "heart-to-heart" and those were the words I used with Dr. C when he entered the room. My agenda, so to speak, was strictly to convey my concerns, fears and wishes as a patient in a thoughtful and sincere manner.
My first point was that it would mean a great deal to me if Dr. C was the physician who delivered my baby. I should have known when I got a lecture about how over-worked he feels that I should have packed up my stuff and left. I mean, how professional is it to unload the burden of your hectic work schedule on your patient? I learned he is on-call 50% of the time. He is scheduled to work the weekend before Christmas (although he mentioned he was traveling with his family this weekend too), the weekend after Christmas, New Year's Eve and New Year's Day. The only time off he is getting this year is Christmas Eve and Christmas Day. The practice is responsible for six hospitals, dealing with high-risk calls coming from the home base of Lankenau, sister hospitals, Paoli, Bryn Mawr, Riddle and two others, Pottstown and Montgomery. He needs to be on-call for transports and in fact, has women right now on antepartum who could deliver at a moment's notice. He even told me he is considering not delivering any longer, it's just too much.
Okay, well, sorry I asked. So the bottom line is unless my c-section is scheduled, there is a 50/50 chance that Dr. C will be the one on-call to deliver me.
The conversation transitioned to my amniotic fluid level and the non-stress tests that Dr. Davis feels should be preformed weekly. I explained that while I expressed concerns about my contractions and uterine irritability to Dr. G, I was always brushed off, given the same canned answer about more than five contractions in an hour. I explained to Dr. C that while I've really tried to like Dr. G, realizing he is regarded as a fine doctor and that I need to put my personal differences and opinions aside, always feeling as if I am being talked down to with a condescending tone is hard to take week after week. Not to mention the fact that I felt like my concerns were never properly acknowledged and always minimized.
Because of this, I made an appointment to be evaluated by Dr. Davis. His team happened to, as part of the normal protocol, scan my baby (which my local group hadn't done since 20 weeks) and check my fluid level. I explained that since this discovery of borderline fluid last week, I have increased my fluids and started the Procardia around the clock. This combination has helped curb my uterine irritability.
Somehow, the conversation turned to the fact that I was not recommended by my local group for a Transabdominal Cerclage (TAC). That I was spearheading my care, which is unheard of and not a good way for anyone to seek medical care. The doctor is the doctor, not the patient. The literature does not support a woman like me to have a TAC. Dr. C then indicated that I should have tried a TVC and if that failed, then consider something more drastic. I was flabbergasted! I pushed him back asking him if what he was saying was that I needed to have another micro-preemie or worse yet, lose a baby due to a failed transvaginal cerclage?! I reminded him that I sought other opinions and that Dr. Davis was not the only physician to confirm my lack of "stitchable cervix". In fact, Hubby later reminded me that it was Dr. C who gave me the name of the doc downtown who was ready to perform a TAC on me as well.
I told Dr. C that not once did he check me to confirm that a TVC would be feasible. He then went on as usual, quoting literature stating that there is no way to confirm cervical competency in a non-pregnant woman. At this point I mentioned my instinct, that I knew in my heart the only way to carry a pregnancy to term (or closer to term than last time) was with a TAC. Dr. C informed me that my instinct was worthless and the only reason Dr. Davis placed my TAC was because I was dealing with Post Traumatic Stress.
Basically, something that women on Abbyloppers do all the time, consult an MFM along with a primary OB/Peri, was seen as a personal slight against my local group. Dr. C indicated that the relationship should be based on trust to which I responded that it's a little hard to trust someone who I sought help from on a Tuesday only to learn on a Friday that my membranes were bulging. I told him that pregnancy for me is HELL, that I trust no one and nothing and that my faith in the TAC has only truly become concrete as I've seen each passing week, beginning with the week I delivered my daughter.
It looks like my group never supported me, never valued me as an educated patient involved in my own care. They were offended that I would continue to see Dr. Davis, that I would put two doctors against each other. I defended that by explaining to Dr. C that he and his own colleague can't even agree, that their differing opinions are as good as being seen by two independent practices right there.
For some reason, stupid me allowed Dr. C to finish the exam. I allowed him to check my fluid level, to check my cervix. He wrote me orders for weekly AFIs and NSTs. I cried the whole time. Dr. C tried to scare me into thinking it was unrealistic to rely on Dr. Davis to be available to deliver me. How ridiculous for me to call him when it's time and expect him to meet me at the hospital and perform my c-section. How ridiculous.
So while I didn't officially blow up, didn't storm out with my chart in hand, didn't stop the Director of Development on my way out as we passed in the hall (thankfully he was distracted and didn't notice me) I left with tears streaming down my face, confused and torn yet knowing in my heart it's time to find a new group if I want to deliver in the system.
My emotional ties to delivering at Lankenau are many. The most important thing for me is the NICU team. This is where My Girl was born and while I could go to the other three hospitals in the system and end up with the same neonatologists, the nurses would all be different. I wanted the comfort of familiarity in the event we ended up with a significant NICU stay. Thankfully, with each passing week, the level of care is slowly (in theory) diminishing. Once I get to 32 weeks, I will no longer require a level 3 nursery.
Last week upon leaving my appointment I ran into a woman from the Development Office. She told me to call when I am ready to deliver, that she would hook me up with the brand new, top notch suite on the new L&D floor. Ironically, it sounds like the room that the part of the NICU where My Girl spent her first months of life, overlooking the seminary: a view that brought us great comfort.
And finally, coming full circle, I really wanted to breastfeed Baby Boy in the Lactation Room off the NICU that is named for and dedicated in honor of My Girl.
Lankenau Hospital has always held a special place in our hearts. It is the place where Our Girl was born far too early, the place where her life was stabilized and the place where she fought so hard to live. It is the place that we are forever indebted too, the place where our charitable hearts are. We take pride in knowing that our story has been instrumental in assisting the hospital secure $1,250,000 in donations for the NICU. It's hard to leave this behind and deliver elsewhere.
I called my support mom, Lori, the woman who helped me through My Girl's birth. Her son was born 12 years ago at 23 weeks. Lori and I talk several times a week and she was just the person I needed to help me through today. She had me pull over as I was driving in hysterics. She calmly helped me through and eventually I stopped sobbing.
Tomorrow, once my head is a little less foggy, I need to reassess and decide what course I am going to take. Do I deliver with Dr. Davis, all the way in New Jersey? Do I stick with the group that clearly doesn't value me as a patient? Or do I find a new group in the system?
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
Wednesday, December 17, 2008
Friday, December 5, 2008
My Definition of Success
At 27 weeks 1 day in my last pregnancy, the equivalent of 17 days old, I was finally able to hold my baby for the first time. This perfectly illustrates why my definition of success is much more than achieving 27 weeks gestation. Granted, it is better than the 24w 5d my daughter got but still a devastating gestation to have a baby come into this world.
I think the scary part is that one might assume since Our Girl did so well having been born at 24w 5d, that Our Boy, with more time in the womb, would do just as well if not better. This mirrors a conversation I had yesterday with Dr. G that I don't feel it's possible that our family would be as blessed twice. I expressed my concerns that we are expecting a boy and that statistically, boys don't do as well as girls. The whole race factor comes into play too with African American babies having better statistics than Caucasian babies, with the "wimpy, white boy" at the very bottom of the charts.
Dr. G told me to disregard the stats, that a baby does as well as their genetics. This Baby Boy is of the same make-up as our Miracle Girl and that counts for something, at least this is the doctor's opinion. I am not willing to test his theory.
Our First Family Photo August 11, 2006
I think the scary part is that one might assume since Our Girl did so well having been born at 24w 5d, that Our Boy, with more time in the womb, would do just as well if not better. This mirrors a conversation I had yesterday with Dr. G that I don't feel it's possible that our family would be as blessed twice. I expressed my concerns that we are expecting a boy and that statistically, boys don't do as well as girls. The whole race factor comes into play too with African American babies having better statistics than Caucasian babies, with the "wimpy, white boy" at the very bottom of the charts.
Dr. G told me to disregard the stats, that a baby does as well as their genetics. This Baby Boy is of the same make-up as our Miracle Girl and that counts for something, at least this is the doctor's opinion. I am not willing to test his theory.
Our First Family Photo August 11, 2006Wednesday, November 12, 2008
Prematurity Awareness Day 2008
November is Prematurity Awareness Month and today is Prematurity Awareness Day. One in eight babies is born premature (before 37 weeks gestation), that's 520,000 babies each year, or 1,400 babies and families affected by prematurity today alone.
To give an idea of just how much more awareness needs to be raised about prematurity, just think of all the breast cancer information out there. According to the National Government, in 2006, an estimated 213,000 women were diagnosed. Why is there such a disconnect? While I believe breast cancer awareness is just as important - I think most people know that October was Breast Cancer Awareness Month, why is prematurity still in the dark? These babies are our future!
With Precious Miracle always under foot, I never turn the news on, as I feel it's inappropriate to expose my child to adult topics. Although she is not really paying attention, I never know what day that will change. So today, while in the car alone, I listened to NPR and was just astounded by a report about premature birth. I have been waiting all day for there to be great recognition of the epidemic but it's not fair for me to really comment on the media's focus since I really haven't checked, read, listened to or watched any reliable news sources. That is with the exception of NPR. The report mentioned that my state, Pennsylvania, received a grade of "D" by the March of Dimes. This is the same grade as was given to the nation as a whole.
What infuriated me, was the "expert" from an insurance company who spoke of the ways women can reduce their risk of premature birth. The top of her list was dental care. For the average person listening to this report, the tone was that if you follow some very simple things, you will avoid preterm birth. It also insinuated that those who have experienced preterm birth didn't take care of themselves. WRONG, WRONG, WRONG! And right here, right now, I plan to argue her points as it is not a "catch-all".
First of all, I go for dental cleanings and exams every six months. In fact, my last cleaning was this past Monday morning. I have healthy teeth and gums, brush with a Sonicare toothbrush and floss as regularly as I can. I still had a micro-preemie.
Her second point was prenatal care, which begins before you get pregnant, a means of preparing your body for the upcoming job of carrying the pregnancy. Well, let me say that since before Hubby and I even met, I was taking the recommended daily dose of folic acid. Talk about prepared, I most certainly was. Prior to our planning on starting our family, I stopped all prescription medications over the period of several months, had a pre-conception visit with my current group, went for blood work to confirm that I was not at risk for having a child with Cystic Fibrosis, confirmed that I was not a carrier for Factor V Leiden, a blood clotting disorder my husband has, and other genetic concerns that my doctor suggested I check just to be safe. It was all pretty standard from what I was told, with the exception of the Factor V. As soon as I found out I was pregnant, I called to schedule my first prenatal appointment and never missed an office visit or scan. Still my daughter arrived at 24 weeks.
The next points were regarding smoking and drinking. First of all, I've never smoked. Second of all, Hubby and I are not big drinkers. I totally eliminated even the occasional glass of wine in the months before we conceived, and never took a sip of anything alcoholic during my six months of pregnancy. My Girl still came early.
The report made some additional points about making women aware of the signs of preterm labor. This I agree with. However, I think more listening needs to occur on behalf of the physicians and the literature for expectant parents needs to be very explicit in terms of what the signs are without the caveat that it's most likely "normal".
Moreover, I feel that the various causes beyond the points mentioned in the report, be better addressed and as a sufferer of cervical insufficiency, feel better screening tools should be implemented to potentially diagnose cervical issues in advance of the point of no return.
The March of Dimes has a "Petition for Preemies" and I am proud to say that I've electronically signed it. One of the key components of this Petition according to the March of Dimes website is the following:
Furthermore, Johnsons Baby Products will donate 10 cents to the March of Dimes for every product purchased during the months of November and December.
Finally, here is a video I made documenting our prematurity journey. It can provide a little insight as to what the NICU road looks like. And, if you watch it, I'm sure you can see why we are so anxious to carry this Baby Boy to term. Just click this link.
http://www.youtube.com/watch?v=oaGOkjGWBGw
To give an idea of just how much more awareness needs to be raised about prematurity, just think of all the breast cancer information out there. According to the National Government, in 2006, an estimated 213,000 women were diagnosed. Why is there such a disconnect? While I believe breast cancer awareness is just as important - I think most people know that October was Breast Cancer Awareness Month, why is prematurity still in the dark? These babies are our future!
With Precious Miracle always under foot, I never turn the news on, as I feel it's inappropriate to expose my child to adult topics. Although she is not really paying attention, I never know what day that will change. So today, while in the car alone, I listened to NPR and was just astounded by a report about premature birth. I have been waiting all day for there to be great recognition of the epidemic but it's not fair for me to really comment on the media's focus since I really haven't checked, read, listened to or watched any reliable news sources. That is with the exception of NPR. The report mentioned that my state, Pennsylvania, received a grade of "D" by the March of Dimes. This is the same grade as was given to the nation as a whole.
What infuriated me, was the "expert" from an insurance company who spoke of the ways women can reduce their risk of premature birth. The top of her list was dental care. For the average person listening to this report, the tone was that if you follow some very simple things, you will avoid preterm birth. It also insinuated that those who have experienced preterm birth didn't take care of themselves. WRONG, WRONG, WRONG! And right here, right now, I plan to argue her points as it is not a "catch-all".
First of all, I go for dental cleanings and exams every six months. In fact, my last cleaning was this past Monday morning. I have healthy teeth and gums, brush with a Sonicare toothbrush and floss as regularly as I can. I still had a micro-preemie.
Her second point was prenatal care, which begins before you get pregnant, a means of preparing your body for the upcoming job of carrying the pregnancy. Well, let me say that since before Hubby and I even met, I was taking the recommended daily dose of folic acid. Talk about prepared, I most certainly was. Prior to our planning on starting our family, I stopped all prescription medications over the period of several months, had a pre-conception visit with my current group, went for blood work to confirm that I was not at risk for having a child with Cystic Fibrosis, confirmed that I was not a carrier for Factor V Leiden, a blood clotting disorder my husband has, and other genetic concerns that my doctor suggested I check just to be safe. It was all pretty standard from what I was told, with the exception of the Factor V. As soon as I found out I was pregnant, I called to schedule my first prenatal appointment and never missed an office visit or scan. Still my daughter arrived at 24 weeks.
The next points were regarding smoking and drinking. First of all, I've never smoked. Second of all, Hubby and I are not big drinkers. I totally eliminated even the occasional glass of wine in the months before we conceived, and never took a sip of anything alcoholic during my six months of pregnancy. My Girl still came early.
The report made some additional points about making women aware of the signs of preterm labor. This I agree with. However, I think more listening needs to occur on behalf of the physicians and the literature for expectant parents needs to be very explicit in terms of what the signs are without the caveat that it's most likely "normal".
Moreover, I feel that the various causes beyond the points mentioned in the report, be better addressed and as a sufferer of cervical insufficiency, feel better screening tools should be implemented to potentially diagnose cervical issues in advance of the point of no return.
The March of Dimes has a "Petition for Preemies" and I am proud to say that I've electronically signed it. One of the key components of this Petition according to the March of Dimes website is the following:
"We urge the federal government to increase support for prematurity-related research and data collection as recommended by the Institute of Medicine and the Surgeon General’s Conference on the Prevention of Preterm Birth, to:
(a) identify the causes of premature birth;
(b) test strategies for prevention;
(c) improve the care, treatment and outcomes of preterm infants;
(d) and better define and track the problem of premature birth."
(a) identify the causes of premature birth;
(b) test strategies for prevention;
(c) improve the care, treatment and outcomes of preterm infants;
(d) and better define and track the problem of premature birth."
I am encouraging everyone to take a moment to support this very important cause. There was a widget I attempted to include below but after numerous attempts, kept getting an error message. So instead, please visit, http://www.marchofdimes.com/padpetition/index.aspx?a=1&z=1&c=1&l=en. It means a great deal not only to my family but to all the families affected by prematurity.
Furthermore, Johnsons Baby Products will donate 10 cents to the March of Dimes for every product purchased during the months of November and December.
Finally, here is a video I made documenting our prematurity journey. It can provide a little insight as to what the NICU road looks like. And, if you watch it, I'm sure you can see why we are so anxious to carry this Baby Boy to term. Just click this link.
http://www.youtube.com/watch?v=oaGOkjGWBGw
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