Wednesday, December 31, 2008
Anyway, for those preggos following my blog, today's conversation with J lead to my updating #22 on 'Questions for creating a birth plan'. I had no idea that doctors did this, often, even when the baby's death is due to a known chromosomal issue. Mostly, doctors do this because of their constant fear of being sued.
Friday, December 19, 2008
I've started donating Precious Impressions kits to a couple of local hospitals. One even asked me for my checklist of making memories in the hospital (which prompted this post). I also asked a new crafty friend of mine (who happens to have lots of crafty friends at her church) to make white gowns for one hospital... (BTW J - To finish the baby shoes that I started crocheting, I've got to wait for a yarn store to open (darn snow & ice!). I've started knitting a baby blanket with my own yarn & needles. I hope it doesn't turn out to be the ugliest thing that you've ever seen!)
I don't know where all of this leads, but I hope to round up some of these new friends (along with making some other new friends) and help get a perinatal hospice started somewhere in the Portland metropolitan area.
Tuesday, December 16, 2008
I bet you're now wondering, what is with the title of this post? Okay, so I don't talk about it a whole lot with anyone, but I have had dreams or a 'sense' (just ask my sister-in-law) that have ended up coming true or 'predicting' something. I think I am not as gifted as some (in the intuition area), but I have had some weird things happen in my life. Well, thanks to a dear woman that I used to work with (Darla B at Nike!), I've spoken with an 'intuitive consultant' one to three times each year for the last several years. Well, today, I went to see Suzanne for the first time since giving birth to our dear, sweet angel Owen. It was an interesting conversation (to say the least).
You see, the condolence cards, emails and calls stopped a couple weeks ago. Which leaves this big silence where the big black empty grief sets in. It starts a mind thinking about the whole (huge) list of things that my child will never do; that my friends and family will never ask about; and, gee, will everyone (but me) just forget about him and never mention his name or visit his grave again? Is it really SO painful for everyone else that they can't show a little compassion and help my heart leap for joy (at hearing his name)?
I'm sure that I'll still have this grief the rest of my life. Days where I feel so broken - with aching arms - just wondering when I will have completed His plan... Wondering what other loving, caring and compassionate things I need to accomplish to show other's just what God's goodness is all about- before I finally get to go home and dance again, with Owen. Although I know in my heart that Owen had his purpose here - the brokeness comes from the lost hopes and dreams - and the love that is diametrically opposed to any sort of distance.
So, back to Suzanne - in the midst of my deep dark grief, she reminded me of the beauty in Owen's purpose. There is a bigger picture - I had just briefly turned my back.
Monday, December 15, 2008
**some names have been changed to protect privacy**
Even though we had made a follow-up appointment at NW Perinatal - I really didn't want to go back there and see that doctor again. Granted, that one nurse seemed warm and understanding, but to pay that doctor for his professional services when he obviously had such a great disrespect for the sanctity of life. And trying to pressure us into an amnio and suggesting termination... No Way - I wasn't going back! Then again, my regular doctor's office had cast me away and told me that I couldn't go back because, now, I was 'high risk' and I couldn't deliver at the Legacy at Meridian Park (as I had wanted). I guess that means that I'd have to search for a new doctor and a new hospital.
I started by calling my friends Cindy and Ward for some ideas. Cindy (bless her sweet soul) is a dear friend that thinks/believes much the same as I do about most things. I like to say that she is an older version of me. I hope she doesn't kick me for that comment because she's not that much older. Ward is an old neighbor of ours (no, he's not actually 'old', he's just from when we lived in Beaumont-Wilshire in NE Portland) and a baby-delivering-family-practice-doctor to boot! He and his lovely wife Sharon are Catholic, so I knew they would understand my pro-life viewpoint.
Cindy suggested that I call the Pregnancy Resource Center (a Christian organization that gives women options other than abortion) to see if they could refer me to a pro-life doctor. I called and while they did have referrals to pro-life OBGYNs, they did not have any pro-life perinatologists (or maternal fetal medicine doctors) on their referral list.
Ward did not believe that he knew any truly pro-life perinatologists, but gave me three names. (The theory is that there aren't any that are pro-life due to the nature of their work. High risk doctors see really weird things that test the limits of what someone would define as 'life'. There are actually some that are pro-life, just not in this part of ultra-liberal Oregon.) Ward told me that these doctors would treat me how I wished to be treated. Dr. Frias and Dr. Pereira were in the high risk clinic connected with OHSU; and Dr. Winkler was at Legacy Emanuel.
(I had also read about the perinatal hospice concept in a couple different online communities, but found that none existed in the whole of the Portland, Oregon metropolitan area - yet)
Since two of the recommended doctors were at OHSU, I started there. I called and transferred to the nurse line. The woman I spoke with (I wish I had written down her name) listened patiently, while I explained that I was pregnant with a baby that most likely had Trisomy 18. I explained that I wanted to find a doctor that respected the pro-life viewpoint and had other patients whom had decided to carry-to-term. The nurse told me that they have had patients that have carried to term before and she asked how I knew that my child had Trisomy 18. I told her of the ultrasound findings and that I wanted to wait to do the amnio until after 28 weeks. I relayed that a friend of mine had referred me to either Dr. Frias or Dr. Pereira. I asked if either had availability (for a new patient) on their schedule. Then she asked (without my bringing up the subject) if I was expecting to get a c-section. I was taken back a bit and answered, "Well, if during delivery, the baby became distressed - then yes, I would want a c-section." She explained that they didn't really do that and it wasn't recommended and she went on and on. But I stopped listening because she helped me decide right then and there that I definitely wasn't going to make an appointment at that clinic. Even if either of these doctors was fabulous - no way was I going to encounter this kind of attitude from a nurse. If I carry this child alive and kicking for nine months - of course I was willing to have a c-section if it meant the difference between meeting my child alive or not!
Next, I called Emanuel and spoke to a nurse. I explained all the same things about: T18, pro-life, carrying to term, the amnio, the ultrasound findings and the friend referral to Dr. Winkler. Thank goodness she never brought up anything about a c-section! (I was feeling so frustrated that if she had - I might have started swearing like a sailor) She looked over the schedule and explained that Dr. Winkler was hardly ever at Emanuel and that he was mostly at the Legacy at Salmon Creek (in Vancouver, Washington and almost 23 miles from my house!). She suggested that I make an appointment with Dr. Robertson. So I did.
The next day I talked to Sharon (Ward's wife) and told her about the nurse at OHSU and my appointment with Dr. Robertson. Late that evening Ward called me and said that no way was I to see Dr. Robertson. He'd had other patients of his complain about Dr. Robertson's bedside manner and if I was going to see anyone at that clinic, then it had to be Dr. Winkler. Ward couldn't believe that the nurse at OHSU had asked me such a thing (about whether I was expecting to get a c-section). Ward explained that this wasn't any of that nurse's business or decision, that these types of decisions are only between the doctor and the patient. Ward told me to call Dr. Winkler's nurse, Trish, and make an appointment at the Salmon Creek clinic.
The next day, I called Trish. She is a lovely woman. I explained: T18, pro-life, carrying to term, the amnio, the ultrasound findings and the friend referral to Dr. Winkler (only this time I mentioned Ward's name). We made an appointment to see Dr. Winkler. I called and canceled the other appointments (Dr. Robertson and NW Perinatal).
A couple days later, Wendy Busch (a genetic counselor from NW Perinatal) called to give me the AFP results. 1:4,100 chance of trisomy 21 and a 1:4 chance of trisomy 18. She asked if this information changed my mind about doing the amnio. <<
About two weeks after my appointment at Northwest Perinatal my regular OBGYN called to see how everything went. I explained that in the future, folks at her clinic had better ask a patient if they are pro-life or not. Because if they were pro-life - she had better never send the patient to NW Perinatal. I gave the not-so-detailed explanation about my experience there and that I was set to see a different doctor at the clinic connected with Legacy Salmon Creek. She asked which doctor and when I told her, she said that she knew Dr. Winkler well and that I was in great hands!
Maybe all of this doctor drama / run around would save someone else from having to be subjected to the same treatment at NW Perinatal.
Oh, wow - that's the biggest tree I've ever had in a house! That big guy's 8.5 ft tall.Sorry the picture's soooo dark. Yep, you counted right - four stockings: one each for Daddy, Mommy, BigBro and (yes!) Owen. I couldn't possibly not hang a stocking on our first christmas without Owen.
Village on the credenza in our entryway. I've had this village (thanks grandma!) for a very long time. It hasn't seen the light of day for a few years.Wiry tree on our dining room table. Can you believe this was our christmas tree for a few years?Last, but not least - some images of the new ornaments on the tree this year.
BigBro & I picked up the wooden shapes and letters at Michael's. We painted and glued this cute airplane together!
Sunday, December 14, 2008
Saturday, December 13, 2008
We arranged to drop off BigBro at Grandpa Mel & Grandma Cathy's house. Hubby and I went to Northwest Perinatal (it's a clinic connected to Providence St. Vincent's - Portland, Oregon). I was sobbing in the waiting room, so they ushered us into a regular room to wait for the ultrasound. On our way back, I noticed that while our regular doctor's office had bulletin boards overflowing with baby pictures on the walls of the hallway - this doctor's office had a creepy absence of bulletin boards and baby pictures. I wondered - did any of these doctors deliver babies? We waited quite a while before being shown to the ultrasound room. The technician seemed to take forever taking pictures and measuring every part of our precious son. At least this technician talked to us and told us what she was seeing (at our regular doctor's the technician said nothing and wouldn't let us leave until we could get in to see a doctor - so that she could give us the news right away). After what must have been at least 45 minutes to an hour, the technician went to get the doctor. When he came in, he took over the ultrasound wand and started talking about everything we had discussed with the technician. In addition to what our regular doctor's office had found, they also thought that there might be a very small hole between the lower two chambers of his heart, called a ventricular septal defect (VSD); and that our son's eyes were slightly closer together than normal (hypotelorism). At this point, the doctor explains that each one of these soft markers are not really a major thing, if they were presenting by themselves. BUT, since there were all of these markers presenting together, there was an increased possibility that something was wrong chromosomally. He thought it could be Trisomy 18. Then, the doctor started puting on gloves while telling us that the only way to know for sure was to do an amniocentesis.
I piped up immediately (because of my earlier internet research) - I'm only 21 weeks, his lungs aren't developed enough AND there's a big risk that we could lose the baby from this procedure.
The doctor was obviously surprised that I brought up the risk and sat back and said - Well, yes, there is a risk with this procedure. We tell patients that there's a 1:300 chance - but this is based on old research - I really feel like the risk is more like 1:600 or 1:1,000. With an amnio, the bag of waters can rupture or infection can be introduced.
I asked why I should do the amnio now. Based on all of these markers it was likely that our child indeed had Trisomy 18 and we could just wait until it was safer for the baby.
The doctor told us that he thought there was a 5-30% chance that our son had Trisomy 18 and gee, let's just do the amnio to rule it out.
I pressed the doctor - how could he say only 5-30% chance?? Granted, I don't have a medical background, but based upon my cursory internet research, it looked like well over a 50% chance to me. The doctor then revised his estimate to 30-60% chance of Trisomy 18 and pressured us, yet again to do the amnio now. I asked why I needed to do the amnio now, when we already know (more likely than not) what we're dealing with and we can confirm when I'm further along and the baby's lungs are developed.
OKAY, here it is - are you ready for it? Then the doctor explains that while there is no law in Oregon, doctors here follow what is done in other states - that you can terminate a pregnancy up to 24 weeks. (Really - someone associated with a Catholic hospital is suggesting this to me?!?) To which, I immediately and emphatically responded - Well that's not an option, so why else would I need to do the amnio now? (It was at this point that he started to take his gloves off. Obviously, this lady had no intention of doing an amnio now) Over and over again, the doctor gave us 'well you would know for sure' and 'you would be able to prepare for his birth'. When I questioned if the doctor would treat us (follow-up visits) any differently if we knew for sure or not - NO, he wouldn't treat us any differently. Whether we knew the chromosomes for sure or not, he wanted us to come in every two weeks. I explained that I was well aware that even if we knew for sure - the prognosis wouldn't change (which, of course, he agreed with). He also asked if I had the AFP blood test done earlier in my pregnancy. He suggested that since I hadn't, that I should go ahead and do it. Plus we could also test to see if something called cytomegalovirus was causing some of these symptoms (bilateral ventriculomegaly). I agreed to the blood draw for the tests.
We were shown into a regular room. The nurse came in and drew my blood, then left. We waited and waited. When the doctor came in, we discussed each of the ultrasound findings in great detail. The only 'ify' things were: they weren't sure if the lung mass was BPS, bronchopulmonary sequestration, or CCAM, congenital cystic adenomatoid malformation); and whether there was a small VSD or not. The doctor wrote down each of the medical terms and had us make another appointment.
While we were making another appointment a really nice nurse told us that she'd had a brother with Trisomy 18. Although he only lived a short time, he was the light of their lives.
Wednesday, December 10, 2008
1. What is the baby's full name, as you want it to appear on the birth and/or death certificate?
2. What are the specific medical issues that we know our child will have?
3. What are the possible surgeries and treatments (and what would be their pain level and what
is the prognosis)?
4. What kind of birth do you want? (home, water, hospital, vaginal, c-section, etc.) Consider
that birth is stressful on both the baby and mother. If the baby has serious heart or organ
challenges, a regular birth could increase the likelihood that the baby will pass away during
birth. On the other hand, a c-section is a major abdominal surgery with many serious risks
and a long recovery period. You can refuse a c-section. Part of a baby's lung development
inutero is that they 'breathe' in amniotic fluid. During a regular birth, when the baby
squeezes through the birth canal - it helps get the amniotic fluid out of the lungs. Because the
squeezing doesn't happen with a c-section, it can make a baby less responsive and need a
little more assistance to get going. Whom will attend the birth?
5. Do you want both the mother and baby to be monitored? You can refuse monitoring for
both. If monitoring indicates that the baby is in distress, what do you want to happen?
Again, you can refuse a c-section.
6. Did you bring a music CD to be played during delivery?
7. If it's a regular delivery, do you want a mirror - so you can see the baby coming?
8. Do you want an IV, episiotomy, pitocin, forceps or vacuum extractor?
9. Do you want to be induced a little early (ie 37 weeks), or do you want to let nature take it's
course? Are there any risks (ie pre-eclampsia or placental abruption) to either you or the
baby if you are induced early or if you wait until later?
10. Do you want pain relief? (breathing exercises or medications like an epidural, demerol, etc)
11. Can the doctor cut the cord, or do you want someone else to cut the cord?
12. Do you want all possible medical interventions, or comfort care only, or somewhere in
between? Consider if s/he isn't breathing, doesn't have a heart beat or has a low heart beat.
13. Consider possible medical interventions: what exactly are they and how do they feel for an
adult (pain or discomfort level)?
- Blow-by or bag and mask (with or without oxygen)
- PPV or CPAP (with or without oxygen)
- Tracheal tube
- Mechanical ventilation
- CPR or chest compressions
- Umbilical catheter or IV
- Regular IV
- Medications (Epinephrine, Morphine, etc.)
- Other Fluids (formula, IV fluids - what if their blood sugar level is too low, or you aren't producing enough colostrum/breast milk)
- Oxygen (usually given by nasal cannula)
- Feeding Tube
15. Do you want pictures and/or video taken? If yes, when and by whom? Consider that you
should discuss this with the doctors involved & make sure it's okay with them. For many
hospitals, the anesthesiologist has the final say in the Operating Room.
16. If this is a teaching hospital, is it okay if interns, students, residents, etc. are involved with
your family's care (including exams)?
17. Do you want the baby to have inoculations/vaccinations, a vitamin K shot, eye ointment,
tests, etc? If yes, when?
18. At what point do you want the doctors to stop the medical interventions? Are you willing to
put a Do Not Intubate (DNI) or Do Not Resuscitate (DNR) in writing?
19. At what point do you want to hold the baby?
20. At what point do you want s/he to have footprints, weight and measurements taken?
21. If you're having a boy, do you want him circumcised?
22. Many states have mandatory (without informed consent) newborn screening programs.
These screen for rare metabolic disorders that are lethal if not detected early enough. Do
you want to refuse participation in this program? It is common practice that whenever a baby dies before being born or within a short time after being born that the placenta be sent to a lab to be analyzed. Analysis can include many different things, including obtaining genetic information. If you are a privacy advocate, you may want to specify that the placenta must be incinerated (which is what they normally do with a 'normal' placenta/after-birth) and that you do not wish for any testing to be performed.
23. Should at least one parent be present at all times? Only when procedures are done?
24. With your desired level of interventions, can these be done by the hospital you're delivering
at? Some smaller hospitals require that you go to a larger hospital (with a NICU). Which
interventions can be done while the baby is 'rooming-in' with you? For some hospitals, even
for the baby to be on oxygen or IV fluids, hospital policy requires that the baby be in the
NICU. If your baby has to be in the NICU for an extended period of time, what does the
NICU look like and what kind of privacy is there (ask to go on a tour)? In most hospitals the
NICU is one big room with rows of babies in isolettes (very little privacy)... In some newer
hospitals, each baby's isolette is in their own room (lots more privacy).
25. Do you want to bathe, diaper and clothe the baby yourselves? Or at least offered the
opportunity to do it yourselves?
26. Do you want friends or family members to be allowed in your room? If yes, when?
27. Do you want to try to nurse the baby? If yes, do you want a lactation consultant to help?
Do you want to use a breast pump?
28. At what point do you want to take him/her home?
29. If the baby dies, do you want friends or family members to be allowed in your room?
30. Would you want an autopsy?
31. Do you wish to donate his/her body or organs to another family or for medical research?
You may want to keep a separate checklist of things you want to happen to make lasting memories in the hospital (see THIS POST).
Although this isn't part of creating a birth plan - in case your child doesn't come home from the hospital, please consider: (I, personally, was thankful that we planned for the worst, while holding out hope for the best. It made for fewer decisions while we were in the moment of losing our child.)
Do you wish to be buried or cremated?
Do you want your child to be buried or cremated? Think about if you move quite often, being buried means that you will not be able to visit your child's grave often.
If you want your child to be cremated, what do you think you will do with the ashes? Spread them, wear some in a keepsake necklace and keep some in a figurine/urn in your home, or utilize one of many options at a cemetery?
If you want your child to be buried, where will you bury them? Do you want him/her in the children's section, or will you purchase additional spaces, so that you can all be together? Will you have a viewing (if yes, do you want the funeral home to use makeup)? Will you have a funeral service (if yes, where & whom will perform the service)? Will you have a graveside service (if yes, where & whom will perform the service)?
Do you want an obituary?
We made the decisions about the poem for the folders for Owen's funeral service and which casket after we had gotten out of the hospital.
Tuesday, December 9, 2008
Before the hospital we:
* started a baby book
* started writing in a journal
* gathered some ultrasound pictures
* had Owen's brother choose a stuffed animal that he would give to Owen in the hospital (I bought 2... one for big bro to 'give' to Owen & the other for inside Owen's casket). we also secretly got a different stuffed animal that we packed in our suitcase & gave this other animal to Owen's brother - from Owen - in the hospital.
* purchased two (identical) super soft blankets. one for owen in the hospital and one for in his casket.
* put together call lists & scripts for family members to make calls for us
* purchased grave spaces (so we will all be together)
* I put together a CD of music (this is what we played at Owen's funeral)
* maternity photos (hired a photographer through nilmdts)
* videotaped some ultrasounds. these are priceless to me - I love seeing Owen dancing around while in utero.
* received an approx quote on our custom birth announcements (we only had to send Owen's footprints in & modify some wording, but changed very little - see it HERE. This is the lady that did THEM. We slipped in a small paper we made ourselves that invited people to Owen's funeral service)
* printed out address labels for the birth announcements
We took a big bag to the hospital & gathered:
* pictures (nilmdts & personal)
* we brought an extra large ink pad & paper to get lots of foot prints and hand prints
* small seal-top bag for hair clippings
* small seal-top bag for nail clippings (+ put a nail clipper inside the bag)
* Precious Impressions (to make one foot and one hand mold)
(+measuring cups, spatula, disposable container for mixing)
* the newspaper from the day Owen was born
* Owen's comb, aspirator, information/isolette card
* hospital ID bracelets
* hats, blankets and clothes for Owen. these were all brought from home, not ones typically provided by the hospital. clothes were all 'premie' sized. (we also brought a couple baby toys and a picture of our family - for Owen's NICU room)
* umbilical cord clip
I ended up with a c-section & my husband also kept the disposable 'cover-all' clothes.
We also brought an extra copy of our birth plan to the hospital, which really came in handy (there was a small mix-up).
A very sweet nurse made a bracelet for owen. It turned out to be a great thing that we named him owen - a longer name might not have fit on the bracelet!
After the hospital, we kept the newspaper from Owen's death notice and his obituary. We also kept all cards (even the ones from flowers that were sent). We have several things from the funeral home (guest book, folders, clothes, etc).
I wanted to minimize any later regrets, so in the hospital I wanted either my husband or I to:
* caress his soft skin (I really had forgotten how soft a baby's skin and hair are!)
* rock owen
* kiss owen
* tell owen how much we love him
* sing to owen ('wheels on the bus' or 'twinkle, twinkle' anyone?)
* bathe owen (later smelling the soap really reminds me of him)
* put lotion on owen (later smelling the lotion really reminds me of him)
* diaper and dress owen
* carefully study all of his adorable baby parts
* comb owen's hair
* hold owen all night
* walk outside and feel the sun or rain or wind or warmth or cold
* read a book to owen (yes, I packed Green Eggs And Ham in our suitcase!)
* had owen been alive for longer, I would have really liked to try to nurse him
* if I'd had a girl, I would have also brought fingernail polish to the hospital & painted all ten toes!
Recently, I bought a necklace for both my husband and I from THIS local woman. They just arrived yesterday & are really great keepsakes!
Monday, December 8, 2008
Parent's wishes for the birth of Owen Thomas _
Owen is a miracle and gift from God. His birth is an occasion for rejoicing. Please treat it as such, even if he is still born or dies soon afterward. Please refer to him as Owen and share our joy and sorrow with us. Our wish is that if he dies, dad or mom are holding him. As a result, we ask that all possible procedures be done in our presence or delayed until his condition is assessed to see if he is stable. Our intent is to provide Owen an opportunity to ‘stay with us’ on primarily comfort care with minimal intervention. We truly appreciate your help and support, and ask that you understand if we seem indecisive at times. We also appreciate and find great comfort in your expressions of grief, be it through tears or humor.
Delivery (Possible vaginal birth or c-section):
Mom would like an epidural and pain relief. We also want the baby to be monitored as well as
We desire to have a third person (in addition to dad and mom) in the delivery room/OR to take photographs and/or video. We do not wish to have any unnecessary hospital staff in our room at any time (ie students, interns, etc). Only hospital staff that are performing medically necessary exams or procedures are to examine our son in life or death.
We desire no circumcision, inoculations/vaccinations, and no eye ointment at any time. Please delay vitamin K, footprints, weighing & measuring until after both parents have held Owen. Immediately after birth, perform standard suctioning, rubbing, and vigorous drying to aid in his respiratory and cardiac efforts. We desire that the following guidelines be observed:
1) Assess Owen's respiratory effort after drying, rubbing, and suctioning. Keep in mind that due to his lung mass, Owen may need oxygen.
a) If he breaths well and has a heart rate above 100 bpm, weigh & measure; then, give him to mom or dad.
b) You may follow standard newborn resuscitation procedures (up to and including PPV (either bag & mask and/or CPAP), chest compressions and administration of medications (ie epinephrine, morphine, etc.) and oxygen). An umbilical catheter or IV are okay. We probably do not desire for Owen to have a tracheal tube inserted, nor mechanical ventilation. If you come to this point in resuscitation efforts, please discuss with dad and/or mom. We will probably just want to hold, comfort and love him – but we want to be given the information in case we change our mind.
c) Any tests should be discussed with parents and done with parents’ permission only.
2) We do not wish to participate in the Washington or Oregon Newborn Screening Program and want no part in any testing, donation or research of any kind (genetic or otherwise, irregardless of whether it’s coded, anonymous, identified or de-identified).
3) We desire that mom or dad be holding him at all possible times.
4) We desire that no procedure be done without parents' presence. Dad is to be with Owen at all times. As soon as is practical, please have Owen join mom in the recovery room.
5) We desire full rooming in (no NICU, transition nursery) for at least first several hours. We understand that hospital policy may not allow for this with some of the minimal interventions/monitoring that we are requesting.
6) We desire that dad and mom bathe Owen themselves if possible. If not possible, please bathe him in the same room with the parents.
7) We desire that our child and other relatives be allowed in to see Owen ASAP for as long as we wish.
8) We desire that mom try to nurse Owen. Request that the lactation consultant visit as soon as possible for assistance (mom has nursed one previous child). If Owen is unable to nurse, mom will express breastmilk using a pump and this should be given to Owen via a feeding tube. If mom is not producing enough breastmilk/colostrom (or Owen’s blood sugar is too low), formula and/or IV fluids are okay. If Owen’s esophagus isn’t connected to his stomach, then no further attempts at introducing nutrition are to be made.
9) If Owen stabilizes, we desire to take him home ASAP on comfort care.
In case of death:
If Owen dies during our stay, please notify staff members as soon as appropriate. Mom will be recovering and will probably be best cared for on the maternity floor, but the staff should be sensitive to the situation when possible.
In Owen’s death, please respect our wishes in point 2) above. We do not wish to have an autopsy.
If he dies before being bathed, we desire to bathe and dress him ourselves.
After he dies, we desire that Owen be with us as long as we desire. We also desire that our child and relatives be allowed to be with us during that time. We request Owen stay with us until the funeral home arrives.
Owen's name, Owen Thomas _, must be on the death or still birth certificate.
Sunday, December 7, 2008
As an aside, everytime I go to this church (no not every Sunday, but a couple times a month anyway) - I just cry and cry. It's not sobbing, just tears streaming down my face. It's because everytime I go to church I'm hurting. The emptiness and pain are so deep and there I am - sitting and thinking 'I'm giving it to God'. How else do you deal with it?
Saturday, December 6, 2008
Friday, December 5, 2008
I enjoyed being pregnant and had a rather uneventful pregnancy with my first son, BigBro. I was working full-time at Nike and everything was 'normal':
- I did everything my doctors told me to do (ate nutritious organic foods, stopped drinking coffee, took prenatal vitamins, had all the prenatal visits, tests/ultrasounds, etc)
- Had morning sickness the first three months (it really annoys me that people call it morning sickness, because it's really an all day thing, not just in the mornings)
- Gained weight (too much really, but I really loved Burgerville's Chocolate Hazelnut milkshakes at the end of my pregnancy)
- Developed heartburn (which seemed to get increasingly worse as my tummy got bigger)
- Disagreed with my husband over the name
- Had a baby shower
- Argued with my husband over the name
- Bought everything else we needed for a baby
- Did I say we fought over his name?
- Decorated his room (of course we painted his walls orange!)
- Developed Sciatica (at the end, I couldn't sit for long periods - my leg would fall asleep)
- At the end, I was whale-like with very swollen feet and ankles
- I was almost two weeks overdue w/nothing going on (no dialation, no thinning) when I went in to be induced (Easter weekend 2005 at Providence St. Vincent's - Portland, Oregon)
- As far as pain goes, I thought I'd hold out as long as possible before asking for anything for pain... I ended up wanting the epidural by the time I was 3 cm dialated (does that make me a wimp?)
- I pushed for only 45 minutes, then my big (almost 9 lb) boy was here!
In between BigBro and Owen, we had a couple close family members get very sick and pass away. Needless to say, I have become somewhat skeptical of doctors. They call it practicing medicine for a reason! You need to research and get informed about your own health / health problems and be your own advocate with the doctors about what treatment(s) to try, what side-effects there are and what the likelihood of a positive outcome might be. I could go on and on about my political beliefs on health care costs / insurance, but I won't do it in My Story, please someone ask me about this later & I'll post my political beliefs.
We tried to get pregnant again for over a year, then in early February 2008 I became pregnant with Owen. I refused the AFP (or quad screen) and early ultrasound (nuchal translucency screening) because I believe this to be a waste of my health insurance company's money. No matter what the outcome, I wouldn't abort the baby anyway - so why do these tests? Also, I had a friend have a false positive, which literally stole the joy of being pregnant for the remainder of her pregnancy. In her case, nothing was wrong or went wrong - it was a needless stress/worry.
Early on, I sensed that something wasn't quite right, but had no idea what it could be. It seemed like this child moved less frequently, less vigorously and I didn't feel his movements until I was a few weeks further along than with BigBro. I told myself that every pregnancy is different, so there was nothing to worry about. I was seeing an OBGYN at a clinic connected to the Legacy at Meridian Park (in Tualatin, Oregon - which is the nearest hospital). Then on June 18, 2008 (a day I will never forget), we had our ultrasound at 21 weeks (we did this just to find out if we were having a boy or girl & for no other reason). That's where we found out that we were having another boy (yeah!). They explained that they had found some soft markers on the ultrasound for something called Trisomy 13 or Trisomy 18. The doctor told us she was very sorry (she said it like our child was going to die or something??!!) and that we would need to see a perinatologist for the remainder of my pregnancy. I felt castaway. The doctor called a clinic connected with Providence St. Vincent's and made an appointment that same afternoon for us. I had never heard of Trisomy 13 or Trisomy 18 and when we got home, I immediately got online to see what this was all about. We had about 2 to 2-1/2 hours to kill before leaving for our appointment at Northwest Perinatal. The ultrasound findings were: clenched fists, bilateral ventriculomegaly (slightly enlarged brain ventricles), choroid plexus cysts (fluid filled cysts in the brain), a lemon shaped head and a lung mass. All the websites that I looked at showed us how very devastating either of these diagnoses would be, yet offered hope that our child could live up to a few years. The statistics were startling! Trisomy 13 occurs 1:5,000 births. Trisomy 18 occurs 1:3,000 births. Only 50% of the time these babies make it to term and of those that make it to term - only 5-10% lived beyond one year old. I had seen that a firm diagnosis could only be made if we did an amniocentesis. So- I looked online at amnios; what exactly the procedure entailed and what the risks were (some sites quoted 1:200 and others 1:300 chance of losing the baby). I felt like the odds were stacked against us and wondered why we would have an amnio before 28 weeks, which is when his lungs are developed enough to possibly survive a rupture of the amniotic sac.
This is not a question, but a comment that does not need a response. As a Catholic institution, I am apalled that some of your providers encourage women to terminate a pregnancy. According to the Catholic tradition, it is morally wrong for a Doctor to ever suggest terminating a pregnancy. In my case, the doctor never suggested the 'choice' of carrying to term; nor did this person provide any resources for someone who wishes to carry a baby to term (when the diagnosis is one where the baby likely won't live long after birth). I was treated like it was a 'given' that I would terminate. Instead of continuing care with someone whom doesn't respect the 'pro-life' viewpoint, I sought out another doctor (at Legacy). Having a difficult diagnosis is gut-wrenching enough - I didn't need to fight the doctor every step of the way. I ended up delivering at a nearby Legacy Hospital. For my subsequent children, I will deliver there again. I will discourage everyone I can from delivering at St. Vincent's. I encouraged my husband to drop Providence as the health insurance provider to our small business. We will never support your organization again. Shame on you. Just look at the 'newsletter' this provider puts out: http://www.whallc.com/perinatal/Perinatal%20Progress.pdf
Reading this, I am reminded of 's comment about 'it depends on what your definition of 'is' is'... Disgusting how doctors use lawyer terms, definitions and 'intentions' to skirt the Catholic beliefs. It is so obvious that they are violating the spirit and true intent of the Catholic belief system -- to value all life. There is value to all life - even if it's a short life or a life of disability.
Their BIG, huge response:
Thank you for sharing your thoughts. We appreciate that you took the time to offer this feedback and will forward it to the appropriate leaders within Providence.
I'm also learning to crochet. I've started to make some baby shoes. I hope they'll be nice enough to donate.