On November 21st, Amy Swagman will join us to facilitate the creation of birth mandalas. BirthChat is still offered free of charge, but space is limited, so please reserve your spot!
Are you following the CO Midwifery DORA Sunset Review? Here’s a great birth story/article from Westword featuring a local homebirther and midwife.
I would have loved to know of a resource like this when I was timidly contemplating my first homebirth. Please share!
Are you looking for Christmas deals for your friends and family who love learning, talking and thinking about birth? Check out Hana Peace Works’ specials.
What Babies Want is a great film to introduce how profoundly birth impacts individuals.
The Business of Being Born is a Ricki Lake & Abby Epstein documentary that discusses birth in America. Great for getting one thinking about what is “normal” in our culture.
Birthday is a classic must-see birth film. Midwife Naoli Vinaver gives birth to her daughter among her loving family in their gorgeous blue tiled bathtub.
If you offer gifts for the birthy crowd, please tell us what you do, and share your link in the comments!
A PUSH ALERT from the Big Push For Midwives
NOV 15, 2010 — There is amazing pushing afoot! It is URGENT that we all push together to help Illinois fill the terrible shortage of home birth providers. Together, we can do it!!
The Home Birth Safety Act (SB 3712) to license CPMs in Illinois is being voted on in the House of Representatives this week, even as early as Wednesday, Nov. 16!
We need everyone in Illinois to call their Representatives and to forward this message to their family and friends in Illinois TODAY.
Here is the message that every Representative in Illinois needs to hear:
“I want to let the Representative know that Speaker Madigan has just reviewed the Home Birth Safety Act and improved the bill with an amendment. The bill is definitely going to be called this week. Will the Representative vote Yes for the bill on the House Floor?”
If anyone tells you “this is not the right act,” tell them the Home Birth text is in House amendment 001.
* Legislators can be looked up (Legislator Lookup) here: http://www.elections.il.gov/DistrictLocator/DistrictOfficialSearchByAddress.aspx
* If you can call Monday, please call the Representative’s district office, and if Tuesday is better, call his/her Springfield office.
The Illinois State Medical Society has been spreading misinformation saying the bill will not be voted on. NOT TRUE. House leadership has assured us a vote, but we need the grassroots to bring it home.
So make the call today and spread the word to everyone you know in Illinois!
After you make your calls, please send a text to report the results to me at the phone number below. Otherwise, please send an email to the email address.
Thank you from all of us Pushers in Illinois!
Rachel Dolan Wickersham, CD(DONA), LCCE
President, Coalition for Illinois Midwifery
Vice President, Illinois Council of Certified Professional Midwives
P.S. Again, please spread this far and wide – to your friends, family, and to all other lists! Even to folks outside of the birthing community. We look forward to keeping you informed of our progress thanks to your support!
The 2011 legislative session will have the opportunity to expand midwives’ responsibilities and further ensure they have adequate tools and permission to provide optimal care for their clients. See the DORA summary for details, then contact the CO state government with your support for broadening midwives’ scope of practice.
Here’s a great place to post your birth stories, and a great local resource for young families. Look at the NOCO Tots website.
Raeanne is putting together a team (Faith’s Place Walkers) for the March of Dimes’ March for Babies event on April 24th here in Fort Collins. I asked Raeanne to share her story, which she has generously agreed to – written full of emotion and detail. Her daughter Faith was born with a birth defect, which instantly changed Raeanne’s birth plan (not to mention, her life!).
See Raeanne’s MOD page here. You can participate in the walk, donate, and learn more about Faith’s story.
Here’s Raeanne’s experience:
Dave and I were so excited about having a baby. The pregnancy was going perfectly, other than some morning sickness and chronic pain, and we were happily planning our homebirth. Even before we were married (on our first date!) Dave had known that I wanted to have a homebirth, so he supported me in that wish from the beginning. We saw Kim and Lynnette from North Colorado Midwifery and I LOVED the difference in care between them and the OB’s and CNM’s I had seen when pregnant with Noah.
I had faith in my body, and I knew I could have a successful homebirth. But I also knew that I needed to work through my fears in order to make that happen, and the one fear I could not shake was that there might be something wrong with the baby.
I mulled over the idea of an ultrasound for weeks, discussing it with Kim and Lynnette, trying to make peace with myself and believe that everything was fine and there was no reason to have one. Dave and I joked that if we had an ultrasound, they might see extra fingers or toes (Dave had extra toes at birth) and “risk” us out of a homebirth.
An ultrasound just didn’t seem medically necessary. After all, it was a textbook pregnancy, not a single complication. Baby was growing well, moving well, had a strong heartbeat… still the fear lingered, and I knew that ultimately it would interfere with the success of my homebirth. Finally at 28 weeks, we went in for an ultrasound, just to make sure everything with the baby was ok.
The ultrasound was strange. I’d had ultrasounds when I was pregnant with Noah, so I knew what to expect… and they had told us to expect it to last about an hour, but it only lasted about 20 minutes. The tech never stayed in one place very long, and pretty much kept the screen frozen, so we didn’t get to see any movement. We got four pictures of our baby’s head, and no full body profile pictures. When the tech was done, they told us to wait a few minutes while she went to talk to the radiologist, then they let us go and told us they’d contact our midwives to discuss the results.
We waited, and waited… I called Kim and Lynnette, and apparently the clinic had called them a few times. Kim seemed concerned, but not overly worried, and we dismissed the strangeness of everything, attributing it to the fact that they didn’t deal with homebirth midwives very often. The longer we waited, the more worried I got. I didn’t sleep much that night. I tried to convince myself that everything was ok, but I knew that normal ultrasound results would have already been discussed with the midwives…
The next day (September 11, 2008), I had an appointment with my family doctor to go over some bloodwork she had done in relation to my chronic pain. She told me that one of my blood tests came back positive for lupus. I asked if that meant I couldn’t have a homebirth, she said she wasn’t sure, and that she’d have to leave it up to the rheumatologist. My mom was with me, and we mentioned the strangeness of the ultrasound, and the fact that we STILL hadn’t heard anything. She decided to call over to the clinic and have them fax her the report. My mom and I went back out to the waiting room with the boys.
A few minutes later, a nurse came out and said that she’d sit in the waiting room with the boys, and that the doctor wanted my mom and I to go back to the exam room. We KNEW definitively at that point that something was very wrong. The doctor told us that the baby hadn’t developed properly; that there was a hole in the abdominal wall, and the intestines were on the outside. The ultrasound report also said that it didn’t look like the brain was developing quite right…
My world came crashing down. Dave was at work, I called him and told him that we were coming up to see him, and that I had to tell him about the ultrasound. We got to his office, he came out, and we stood and held each other, crying in the parking lot. I called Kim and told her the ultrasound results, and that we wouldn’t be able to have a homebirth. Our family doctor had said that we wouldn’t even really be able to have a local birth, because the baby would need the immediate services of a pediatric surgeon, and there are no pediatric surgeons in Northern Colorado. She said I would need to see a perinatologist, and she thought I would probably need to have a c-section.
My mom took me home, and I immediately got on the computer and started googling. I wanted to know everything there was to know about this birth defect, what it would mean for the birth, and what it would mean for post-birth bonding, breastfeeding, etc. What I found was all at once reassuring, and all the more devastating. I found that the survival rate with this birth defect is better than 90%, but that the average length of time in the hospital after birth is 6-12 weeks. I found that it was possible to have a vaginal birth, but that most doctors prefer to induce labor between 36 and 38 weeks, to keep the intestines from suffering more damage due to exposure to the amniotic fluid. I found that a similar birth defect occurs with other defects present as well, and found myself worrying that maybe our baby had that defect instead, since the ultrasound report had mentioned the discrepancy with brain development… I cried almost constantly, didn’t sleep, and couldn’t eat. I began feeling paranoid that my baby would die in utero, and worried every time the baby had hiccups that it was instead having seizures… I started to worry about preterm labor, especially because I knew if the baby was born in Loveland or Ft. Collins, they would take it away immediately to send to Denver, and I wouldn’t be able to go along.
I began researching my options for care providers, and found a great program offered by University and Children’s Hospitals for high-risk mothers whose babies are known to need specialized care after birth. I contacted the program, and they helped me get into the Maternal-Fetal Medicine clinic at University Hospital, and even arranged for me to see a rheumatologist there to further explore the lupus concerns. I fought with the perinatologists every step of the way. They made me feel stupid for having planned a homebirth, and acted as though I had no right to WANT anything to go a certain way in terms of the actual birth. I actually wrote a letter for them to put in my chart, explaining that I was not some stupid pregnant mom who didn’t know anything, that I was educating myself to become a doula, that I had a good understanding of the birth process and any and all interventions that may come along, that I had made an educated decision to have a homebirth, but that obviously that wouldn’t be possible, so instead I had made the educated decision to use their practice for the remainder of my prenatal care and my birth, and that I knew what Informed Consent was, and I expected them to follow it. They LOVED me
I went from not really wanting an ultrasound at all, to having at least 2-3 per week for the remainder of my pregnancy. The ultrasounds we had at University were reassuring, they showed that there was nothing wrong with our baby’s brain, heart, or any other organs, the only problem was that the intestines were floating in the fluid, rather than being neatly packaged up in the belly… We decided that we’d already had enough of a surprise, and we found out the sex- a girl. Immediately we knew that her name was Faith. (I had actually had a dream in early pregnancy that we had a girl and named her Faith, and mentioned it to Dave, who promptly informed me that he didn’t like the name and wouldn’t even consider it!)
My pregnancy continued to progress perfectly… I had 2 perfect non-stress tests and fluid level checks per week, and every week they checked the blood flow through the umbilical cord and in Faith’s brain. Although the levels fluctuated a bit, and were borderline some weeks, they were never abnormal.
I decided to use my immersion in the high-risk medical side of pregnancy to further educate myself, and I learned exactly what the lines on the monitor strips mean, how to tell if the baby is doing well, how to tell how strong your contractions are, etc. I spent at least an hour a week hooked up to the stupid thing, so I figured I might as well figure out what it all meant. I loved sitting there listening to her heartbeat though, and I loved it even more when one day in the curtain next to me, there was a mom with twins, so I got to listen to three little heartbeats
The perinatologists let me know that they would want to do an amniocentesis at 37 weeks, and then depending on Faith’s lung maturity, I would be induced. So, I started researching my options for induction, and had a plan for if that became necessary, that did not involve Pitocin, Cytotec, or AROM… Some of the doctors were impressed with my efforts, but I could tell that most of them didn’t exactly appreciate it. I got the doctors to assure me though, that unless there was a medical reason for it, I would NOT have to be continuously monitored during labor. If only I had gotten them to sign off on it!
I had the amnio done at 37 weeks, which was an experience in itself… the doctor who actually handled the needle poked Faith in the back! The lab had issues with the test, because of her intestines being in the fluid… they had to run it twice, and instead of coming back with a number value for maturity, it just came back as “negative”. As much as I didn’t want to be induced, I was disappointed, and I became very worried when they informed me that the reason the lab had problems with the test was that there was meconium in the fluid. All of the studies I had read very clearly linked meconium exposure to intestinal damage in gastroschisis babies… It was a Friday when they told us about the meconium… the next Monday the doctor told me it wasn’t meconium, but just bile, which was normal and expected with the intestines floating in the fluid. Tuesday my mom and I took the boys to the museum and walked around ALL day.
I went in for my 38 week appointment on Wednesday, and told the OB that I’d been losing my plug and had a little bloody show, that I’d been having fairly regular (but light) contractions for a few days, and that I thought I might be in early labor. She checked me and said I was 1 cm on the outside, but not dilated on the inside, and that my cervix was still thick, although it was soft. She sort of laughed me off, and sent me home saying they’d see me for the induction that was scheduled for Friday.
All day long, I thought I was probably in labor, but I did my best to ignore it. I went to bed around 10 PM, breathing through contractions and doing my best to just relax so that I could get some rest. I did mention to my mom before I went to bed that she should get as much sleep as she could, because I knew I was in labor and would most likely be going to the hospital that night.
Around 2 AM, I woke up and couldn’t sleep through the contractions anymore. I stood in the tiny kitchen of my parents’ camper that we had been living in for the past 10 weeks (so that we could be close to the hospital), and swayed and breathed and tried not to make any noise, so that I wouldn’t wake up my mom or the boys. Finally I got to where I couldn’t NOT make noise, and I woke my mom up and told her it was time. She called Dave and my dad, and they both started the 45 minute drive to get to us.
They got to us at about 3 AM, and Dave, my mom, and I headed to the hospital. They put me in a triage room, where I waited for almost an hour for someone to come in and check me. I was 4 cm, 25% effaced, and they decided to admit me.
Whatever doctor was the attending decided that, even though the other docs had all said it was ok to do intermittent monitoring, he wanted me continuously hooked up. That really sucked, because it totally limited my options in terms of what I could do to help cope with the contractions. I spent the majority of my labor upright though, in a rocking chair, on a birth ball, rocking and swaying by the bed… and finally I convinced them to give me 15 minutes off the monitor so I could use the tub. That was heaven! I used the bathroom pretty constantly, because that meant I didn’t have to be hooked up… so I pretty much just hid in the bathroom until the nurse would come in and tell me I had to go get hooked back up.
I was making progress, but I was disappointed, because it wasn’t going as quickly as I’d expected… Dilation was slow, because I wasn’t effaced. I stayed upright, because I knew that Faith’s head on my cervix would help me efface so that I could dilate, but for some reason that was unknown at the time, she just wasn’t descending. I had decided to let them break my water to see if it would help, since I wasn’t really in early labor anymore, and it had really helped to speed things up with Noah (I went from 6 cm to delivering in about 1 1/2 hours). Every time they checked though, she was still floating, so they couldn’t do it. I was checked so many times with such little progress, and I was getting so discouraged… 6 cm and 40%, 6 cm and 60%, 7 cm and 80%… and all of these checks were hours apart. I was running out of energy, and Dave and the nurse were running out of energy to continue the double hip squeeze that was the only thing helping during contractions…
My knowledge of the birth process was helpful in thinking of ideas to keep things moving, but I found it also hindered my progress, because I was too much in my head, over-thinking, over-analyzing, and letting myself get disappointed that nothing I was trying was working. I was getting upset, because all I really wanted to do was use the shower or the tub, and they wouldn’t let me!
Finally I couldn’t stand the intensity anymore, my mom reminded me to relax through contractions, but I was past being able to relax, and the hip squeezing I had the nurse and Dave doing through contractions wasn’t working anymore… I had some fentanyl, thinking if I could just rest a little bit I’d be able to keep going. By this point it was after noon… Fentanyl’s a weird thing… it doesn’t really take the pain away, but makes you super sleepy right away… sleepy enough that you don’t feel like you need to breathe… so the nurse put the oxygen mask on me.
The fentanyl helped some, after I had it I felt like I had a little bit of a second wind, and I told myself if I just kept going, things would change and it would all be ok. But the next time they checked me, they said they thought they could finally break my water, and then decided a second later that they really couldn’t still, and it was just too much. I struggled through the next couple contractions, and the nurse told me that I needed to prepare myself for the possibility of a c-section if she didn’t drop down on her own soon. At that point, I decided that if I might end up with a c-section anyway, I might as well get an epidural.
As soon as the epidural was in and working, I was finally able to relax. As much as I knew about epidurals and their possible effects on labor, I found out that I really didn’t know that much about what they are actually like. I was still able to move and feel my legs, and I still felt contractions, although they weren’t painful anymore. Faith’s heartrate stayed perfectly stable, she was doing great through everything.
About 20 or 30 minutes after the epidural was in, my mom, the nurse and I were relaxing and talking, when suddenly there was a big pop and my water broke with a huge gush of fluid. It was one of the strangest things I have ever experienced, but I am so glad my water broke on its own and I was able to have that experience. Awhile after that, I started having to push the button to strengthen the epidural, because I was starting to feel alot more uncomfortable again through contractions. The doctor came in to check me, and I was complete and +1!
They let everyone know who needed to be ready for Faith to arrive, and I started pushing with contractions. Pushing felt so good! I could feel everything, I could feel her head moving down with each push, and then going back up a little bit after the contractions were over… I asked for a mirror, and with the next contraction I could see her crowning. Having the mirror and being able to actually see the progress made me determined to keep her from going back up after contractions, and with the next push her head was out!
I only pushed for maybe 5 contractions… She had the cord around her neck, and when the doctor tried to get it unwrapped, it pulled away from her body and there was a lot of blood. This was something I knew to expect, since there is a hole very near to the cord with gastroschisis, it makes the cord’s attachment spot less strong and more prone to pulling off. I found out later that it worried my mom a lot when it happened; I had forgotten to tell her that might happen. She was born at 4:23 PM on Thursday, November 13.
Faith started moving and making noise as soon as she was out. They took her over to the warmer and the team from the NICU worked on her, trying to stop the bleeding from what would have been her cord stump (since it pulled completely away from her body, there was nothing to clamp). I could hear her crying, and it was the best noise ever. About 5 minutes later the placenta came out. It was a very strange feeling, suddenly my belly felt so empty; I don’t remember that part of my birth with Noah at all. I had one tiny little scratch that didn’t need any stitching.
They took Faith away to the NICU, and awhile later the Flight for Life team was there to take her next door to Children’s Hospital. We went in and had her baptized before she was transferred, and then she and Dave were gone. I was taken back to my room and finally got to eat (at this point it was about 7 pm, I hadn’t eaten in over 24 hours, just had glucose in the IV to keep my blood sugar up). The food service people only brought about half of the food I ordered…
I wanted to sleep so badly, but made myself wait because I still had to be changed to a recovery room. Finally I was taken to the room I could sleep in, and I called Dave for an update. Faith was going to surgery around 10 pm, but we wouldn’t know until afterwards if they would do a primary closure or a silo. Around 12:30 he called and let me know she was out of surgery and they had decided to do a silo. She had breathed great on her own until they had to intubate her for the surgery, which was great news.
I was out of the hospital by 10 am the next day, and was so glad to be able to see her again. I was also glad that I’d had preparation for seeing her with all the tubes and wires, from the time I had spent in the NICU with my nephew Nathan 2 1/2 years earlier.
The NICU at Children’s is amazing, and we were incredibly blessed to have a private room, complete with a pull-out couch for me to sleep on, and a bathroom. I stayed with Faith nearly 24/7, pumping and blogging and staring at her… When she was 6 days old, her intestines had gone in far enough that they could do the surgery to close up the hole, and finally when she was 8 days old I got to hold her for the first time! Dave got to hold her that night, and she got her first sponge bath the next day.
We held her maybe 4 times between that first time and when she was 2 weeks old… She was getting more and more swollen though, more dependent on the ventilator to breathe, and on the day that she turned 2 weeks old (Thanksgiving), we were told that she had developed a complication called chylothorax and they would need to put chest tubes in right away. The doctor also told me that unfortunately, babies with this condition cannot have the long-chain fats found in breastmilk (because it exacerbates the problem), and that the recovery time until she’d be able to have breastmilk would probably be between 8-12 weeks.
I was devastated, as one of the only things that was keeping me going at that point was the thought that she’d be better soon, and I’d get to nurse her. I posted on her blog how disappointed I was that she wouldn’t be able to have my milk, and someone emailed me and sent me a link to instructions for making skim breastmilk! I mentioned the idea to one of Faith’s primary nurses, who is also one of the lactation nurses in the NICU, and she told me that they actually make skim breastmilk at the Mother’s Milk Bank at Presbyterian/St. Luke’s, so they have the machine to test the fat content of the milk. I told Faith’s doctors my idea. Her neonatologist was very supportive, and interested to know how it would work. Her surgeon, on the other hand, actually had the audacity to tell me that he would allow her to have it IF I could prove to him that it would be better for her than the formula. (I think he didn’t know who he was dealing with yet at that point!)
Pieces fell into place, and Dave and I went to the Milk Bank at PSL to learn to make our own fat-free breastmilk. I made 21 batches total, and of the 21 batches, 8 were completely fat-free, and the rest were well within the limit. I proudly hung my fat content printout slip on the bulletin board in Faith’s room. A hospital photographer came and took pictures of me making my skim breastmilk, because Faith’s nurse decided to take my procedure and make it the standard hospital protocol for making fat-free breastmilk to treat chylothorax!
Finally, Faith was better; she got her chest tubes out, and they started slow feeds of my fat-free milk through a tube that went past her stomach into her intestine. Unfortunately, it was very slow going… and feeds were stopped shortly after they were started.
A few weeks went by, and when Faith was 2 months old, they were going to start feeds again, and I told her doctors I would NOT consent to them putting another feeding tube down her throat. I told them that we would be feeding her by mouth, that I would agree to starting with bottles just because the amounts she could take were so small, but that we would be transitioning to exclusively feeding at the breast. One of the lactation consultants heard all of this, and she had a little meeting with Faith’s doctors and convinced them to skip the bottles altogether, and let Faith go straight to the breast!
We started breastfeeding, using a nipple shield at first, but then transitioning away from it, until Faith was taking nearly 80-90% of what she needed to grow, just by breastfeeding! I wanted to shout it from the rooftops- it can be done! My baby had virtually ZERO positive oral stimulation for the first 2 months (and a breathing tube down her throat for the whole first month!), we were very rarely able to do skin-to-skin or kangaroo care, because it upset her (she WANTED to nurse), but yet at TWO MONTHS OLD, we established successful breastfeeding!
Things were improving so quickly, the doctors began talking about sending us home. The only problem was, Faith was still getting her IV nutrition, so while she was breastfeeding very well, she was essentially getting twice the actual number of calories she needed in a day… when they took away the IV nutrition, she stopped growing and started losing weight. We tried to stick it out, to keep her off the IV nutrition and on exclusively oral feeds… finally we started fortifying my pumped breastmilk with formula to increase the calories and see if she could grow that way. As soon as we introduced the formula, Faith stopped tolerating feeds entirely.
She had been off the IV nutrition for about 3 days, and they had taken out her (clotted) central IV line, so in order to start giving her IV nutrition again, they had to get access… that night was hell. It took at least 6 people, 15 pokes, and finally the anesthesiologist attending to get an IV going. He was literally on the last poke that Faith’s nurses, the neonatologist, and I were going to allow before forcing the surgeons to take her to the OR to get a new central line placed.
The next day, Faith got her new central line, all talks of going home were halted, and we started over at square one. And we had a new concern, one we had been ignoring in hopes that it would become a non-issue when Faith started eating normally and didn’t need the IV nutrition anymore… Faith’s liver was growing more and more damaged. Unfortunately, as amazing as IV nutrition is for people who cannot tolerate “normal” feeds through the digestive system, it is incredibly damaging to the liver, especially in babies. At this point, Faith’s direct bilirubin level, which should be less than 0.3, was at 11.8. She was literally ORANGE… in one of my many attempts to find humor in our situation, I joked that if it were Halloween, I would have dressed her as an Oompa-Loompa… doctors don’t appreciate most attempts at humor.
I contacted a doctor in Boston who was doing research on the liver problems, and working with a new medication that was having dramatic results, reversing the liver damage and improving the health of these babies with very fast results. He expressed his concern over Faith’s condition, and let me know that they would do anything they could do to help us get to Boston for the treatment if we needed to. I started asking Faith’s doctors about the medication. I had found out that there had been another child with similar issues who had gone to Boston and gotten on this treatment, and it had saved his life… and he had the same doctors as Faith, so I assumed they would agree that she needed the treatment and start the process with the FDA to get it for her under “compassionate use” guidelines. It killed me to think that Faith could qualify for anything as “compassionate use”… because basically that means there is nothing else they can do, that the patient will most likely die anyway, so they might as well try an unproven experimental medication.
The doctors in Denver dragged their feet, coming up with any and every excuse they could think of… and even told me that they would start the paperwork for the FDA, but never did. The last straw came when the doctor who had told me he’d try to get it for her in Denver came in and told us that he believed we needed to get Faith to a transplant center, and have her evaluated and listed for a small bowel transplant. The 5-year survival rate for small bowel transplants is only 50%. (Little did I know at the time, the survival rate for the TPNALD that Faith had is only 22%!!)
At that point I began working with the team in Boston in earnest, getting everything handled so that we could get Faith transferred to Boston ASAP. We found out that our insurance wouldn’t pay for a transfer, but would pay for the hospital in Boston, so I told the Denver doctors that they would be sending Faith home on IV nutrition and slow tube feeds (we had finally given in and accepted that Faith needed a permanent feeding tube…), and that we would be taking her to Boston on our own to receive the experimental treatment. They told us that she needed to get to a certain point with her feeds before they would discharge her (I think it was 60%). I told her nurses and the one doctor that I trusted that, no matter what, I absolutely DID NOT CONSENT to anyone touching the rate of her feeds, because I knew that if they increased the rate, she would start throwing up, and they wouldn’t discharge her. (Yay for informed consent!)
They discharged her from Children’s in Denver on March 20, 2009, after 127 days in the NICU. During her 127 days there, she went to the OR six times… three of those for major abdominal surgeries. She spent an entire month on a ventilator, 2 weeks with chest tubes, another 2 weeks on nasal cannula oxygen, and the vast majority of the time she had a feeding tube down her nose and throat, although she spent more time NOT on feeds than she did on them…
Faith and I got on a red-eye flight to Boston at about 11 PM on March 23, 2009, and Faith was admitted to Children’s Hospital Boston at noon on March 24, 2009. They started her on the miracle treatment that afternoon; she was baby #115 in the study. CHB identified an intestinal infection that Faith had most likely been fighting for awhile, so they kept her in the hospital for 10 days so that they could effectively treat that. After only one week on Omegaven (the miracle fish oil drug), Faith’s feet turned pink! After only 30 days, her bilirubin levels were at the point that it was safe for us to go home!! Dave had already bought plane tickets to come out and spend some time with us, so we decided to stay in Boston for an extra couple of weeks as a little vacation.
We left Boston on May 13, 2009, the day Faith turned 6 months old, took a little side trip to visit relatives in Wisconsin, and actually got home on May 18, 2009. On May 26, Dave left to go to basic training for the National Guard.
Faith continued to get better, and in August she came completely off of the IV nutrition. Also in August, I fired the GI department at Denver Children’s (the ones who said she needed a transplant). That was one of the most satisfying experiences of the whole journey so far In September, Faith got her central IV line taken out, and started eating real food by mouth!
Now she eats almost all of her food by mouth, and is only hooked up to her feeding tube at night for fluids. She is developing well, and is SO smart… I think it’s the fish oil. Other than a couple of ER visits since Thanksgiving, and one 4-day stay at Denver Children’s in March while she was sick, she is basically a normal baby! Most people who look at her would never guess the journey she has been on…
Some day I’m going to make all of this into a book, even if it’s just for her to read and be able to share with people… and I still say that if she doesn’t feel like telling the whole story, it’s perfectly acceptable (and not a lie) to tell everyone her scar is from having her appendix out
Raeanne remarked that she wasn’t sure how to ‘end’ the story, since there really is no conclusion. Faith has had a unique start to life, and look forward to watching her grow and flourish.
Help MOD continue life-saving research by donating here.
Birth Smart is hosting a low-cost, high-value talk about empowered birth. I’m hearing more and more about groups that are changing birth culture through grassroots effort. It is so inspiring!
According to this msn article, more women are choosing to birth without a doctor or midwife. It’s odd that it’s called “do-it-yourself-birth” because, even with a supportive midwife or doctor, birth is ‘do-it-yourself’.