So part one of her story left off with us getting home after two weeks in the hospital. At the time she was on a feeding tube that went through her nose and into her stomach and was being fed mostly Nestle Boost Kids Essentials. She was also on a daily multivitamin with iron, twice daily heparin injections because of the blood clot that developed from the PICC line, an antibiotic for her UTI, and possibly something else I can't remember.
Shortly before discharge
Soon after getting home, within a week or so, she started vomiting frequently during and after tube feedings. She was also starting to lose weight again. I was frantically trying to find a more holistic practitioner and so we tried going to Newbridge Clinic in Edina. They were very nice (although her problems were way beyond their scope and I wish they would have told us that) and suggested trying a hypoallergenic formula. Well those ingredients and price was even worse! At that point I pretty much said "fuck it" and decided she was going completely on breastmilk, both mine and donor milk, because that was the only thing she could keep down and I believed that was much better for her than any synthetic formulas with unhealthy ingredients.
Our pediatrician at the time was very concerned about this plan because it was thought that Audrey would need such a large volume of breastmilk in order to gain weight that it wouldn't be feasible. But she was willing to try it and even said she would back up our decision to use donor breastmilk if the rest of Audrey's medical team questioned it. The nutritionist we were working with wasn't happy about it either but calculated that she would need about 45 ounces (about 900 calories) per day in order to gain weight.
So I asked in the local Attachment Parenting community I'm a part of as well as the two donor milk organizations that connect donors with recipients: Human Milk for Human Babies and Eats on Feets. We were blessed with a TON of milk - over 1000 ounces! Some was even newborn milk with a bit of colostrum! Audrey stopped vomiting so much and started gaining weight again!
Donor milk stash!
At this point we were doing weight check ups once a week plus seeing various specialists to try and figure out the root of the problem. She was also having blood draws done frequently to check levels of various things (iron, thiamine, etc.) and for further testing. This continued into the new year. Basically our whole lives revolved around Audrey's appointments, trying to get her to eat solids, the daily tasks of caring for her plus her added special needs care, and me constantly researching online.
So now we were getting close to Christmas and we were really hoping to have a nice holiday where we could forget about everything for a day. But unfortunately the second round of norovirus hit our household. On Christmas Day. Ryan was the first to feel sick and he laid on the couch while Audrey and I opened presents. Then she started vomiting and one session was so severe that her feeding tube came flying out! This meant a trip to the ER, because of course all the other clinics were closed. And I really didn't want to take her alone so poor Ryan came with, lying on the bed meant for Audrey and vomiting in the garbage can. The nurses felt so bad for us and gave him a bunch of cans of sprite and crackers. The next day it was my turn to get sick, which was my second time with the virus already that winter.
Christmas tree fun before getting sick on Christmas Day
Audrey started going to feeding therapy (blergh!) and we started experimenting with her tube feeding schedule to try to get her to eat more on her own. Part of the problem with the tube feeding is that you need to give them enough so they gain, but then they don't feel hunger and so the little desire to eat that they already have is even more diminished. It can be a hard cycle to break. After researching I asked if we could try switching her tube feedings to night time in the hope that she would feel more hunger during the day. This can be tricky though since a toddler her age doesn't normally eat at night. With the pediatrician's support we offered food during the day (ALL THE TIME) along with sippy cups of my breastmilk and ran the tube feed continuously throughout the whole night making up for the calories she didn't eat during the day. This usually amounted to about 30 ounces of donor breastmilk. The first few weeks she did great and seemed to be eating more every day!
At this point the pediatrician suggested that we do the genetic testing since we still didn't know the cause of her failure to thrive. We found out that Audrey is a carrier of a mild form of cystic fibrosis (you can read about that here). Audrey was also having more trouble with vomiting again a few weeks after starting the night feedings, and was not as interested in solids anymore, often gagging. The Occupational Therapist at Gillette where we were going once a week suggested we do a scope test of her esophagus to see how it was working. I was skeptical of this as she had never had issues swallowing before, but decided to rule it out. Of course there was nothing wrong and the end result was a crying and screaming Audrey while the Amplatz therapist force fed her yogurt. I'm sure the therapist meant well but I still remember what she said that day "patient is unlikely to be off the feeding tube for at least a year" HA. Audrey was off it a few months later!
Although I didn't think Audrey had swallowing problems I was suspicious that she had another UTI. Just like the first time, she didn't have a fever but was fussy, had low energy, and bad smelling urine. Sure enough, a traumatic catheter insertion (which was unnecessary, I later found out they can use bagged urine just as well for the culture) revealed her second UTI. I'm thankful Audrey isn't a boy so we didn't have to also fight against forced retraction of the foreskin or recommendations of circumcision to "fix" the UTI problem!
At the appointment confirming her second UTI Audrey was put on periactin for appetite and another med for reflux as she was still vomiting and gagging, although not nearly as much as when she was on the formulas. At this time I was also very concerned that she was going to wean, which was a very upsetting thought for me. She would latch on to nurse but kept gagging and then didn't want to keep nursing. It broke my heart because I knew she wasn't wanting to wean on her own accord! When I brought this up to the pediatrician she didn't even respond to my concerns, which isn't surprising because Audrey had passed the magical age of 1 after all, so at this point breastfeeding was "useless."
Shortly after she was diagnosed with the second UTI we went to a pediatric gastroenterologist which was the worst experience we had with a medical "professional." He was extremely condescending and hinted that he blamed out decision to use baby led solids as the reason for her failure to thrive. This is supposed to be an expert in the field of infant and child feeding and diseases of the digestive tract! And he claimed he had never heard about this feeding philosophy, which is becoming fairly common. This attitude of various practitioners thinking they don't need to keep on top of the research in their field just disgusts me. It's like they think they're done learning after they graduate. Ridiculous and ultimately their patients are the ones that suffer for it.
He also wrote some very inappropriate things in her chart, such as "CPS was not involved" (implying, we felt, that they should have been), "parents did not feed purees and instead did 'baby led weaning' and fed toddler appropriate foods," and the worst one "maternal beliefs may impede patient's progress." We were livid and immediately requested that these statements be taken off her chart (which they were, thankfully!) and requested a new specialist.
Ironically, he was the one who scheduled her for a diagnostic ultrasound because upon examination of her abdomen he felt an abnormally large organ, when ended up being her right kidney. He also noted that her abdomen appeared swollen, which we kept asking the other practitioners about but they didn't see it as concerning.
The ultrasound found her right kidney to be enlarged, dilation of her right ureter, and the ureterocele on her bladder (an abnormal pouch where urine would collect and sit instead of being expelled). So now we had to do another test to further see what the problems were, called a VCUG (voiding cystourethrogram). This involved using a catheter to insert a dye into her urinary tract system and an ultrasound to see how the system expels the dye, etc. We were referred to our urologist, Dr. Jane Lewis, for further consultation.
Dr. Lewis scheduled the VCUG to take place at the Maple Grove medical center which I later found out was unable to provide any type of sedation or pain medication during the procedure. Audrey had reacted badly to the two previous, brief catheter insertions and I had serious concerns about her being held down for a catheter test that would take at least 20 minutes. My friend, whose children also have kidney reflux to a much lesser degree, also greatly emphasized that we should not do this test without sedation at her age. So I switched the procedure to happen at Amplatz where she would be able to have some sedation in hopes that it would be less traumatic for her.
I'm so glad we did that because the test was rather long and she had to be fairly still for the entire 20 minutes! I don't think it would have worked very well if we had done it without any sedation. The test revealed a confirmation of an enlarged right kidney, enlarged right ureter, grade 5 reflux (worst level of reflux where the urine flows back towards the kidneys instead of to the bladder. This can cause recurrent UTI's), and a ureterocele (pouch) on her bladder. Her right kidney was only working at about 25% rather than 50% so the left kidney was working harder than it normally would. In our follow up consultation with Dr. Lewis we discussed the necessary surgery to fix the abnormalities and she said depending on how her organs looked during the surgery, she might need to remove her right kidney if it was too damaged to fix.
We scheduled her surgery for early March and in the meantime kept going to feeding therapy and check ups with the pediatrician. Feeding therapy was becoming increasingly frustrating, as the therapist was now wanting to do behavioral modification in the form of rewarding Audrey with a toy when she took a bite of food. I put my foot down at that because I strongly believe that appetite and eating isn't something that should be externally controlled by another person. I write more about that here.
Her surgery went great and the urologist was able to fix the abnormalities without removing her kidney! One thing that was funny while prepping for the surgery was the anesthetists wanted to use an epidural as part of her pain management and Ryan was initially very opposed to the idea because of everything he learned about them in the Bradley Classes we took during pregnancy. I knew that this was a great method of pain control with small risks and side effects, compared to the other methods available, and I convinced him that we should do it.
Dr. Lewis was able to remove the ureterocele on her bladder and taper her right ureter, which she hoped would reduce or eliminate the reflux as well as improve the functioning of the right kidney and reduce the size. The latest ultrasounds of her kidneys show that her kidney function has increased a little bit and her kidneys are growing well. The reflux is gone and swelling of the kidney is gone. She has not had any more UTI's to date either.
During her surgery both of our parents and Ryan's sister came to support us but I really didn't want to talk to anyone. I just wanted to be alone and distracted by something else instead of sitting and worrying with everyone. So I went to the computer lab where they provide free access to the internet and printer and I printed out tons of handouts for my Bradley Class. I figured I might as well take advantage of what they offered!
Although her surgery and recovery went very well, we still had to stay in the hospital for a couple days. And that really sucked. Ryan and I both hate the hospital with a fiery passion of a thousand suns. You can read more about that here.
Going for a wagon ride a few days after surgery.
The pediatrician advised that we should consider putting in a G tube while she was already under general anesthesia for the kidney surgery. A G tube is a portal directly into her stomach for food and medications, instead of relying on the NG tube which kept getting pulled out and replaced. Both the pediatrician and the feeding therapist had concerns that the NG tube may have been impeding her progress because it can cause gagging and it's supposed to be a more temporary solution. Neither of them thought she would be off the feeding tube for many months yet. Ryan and I were both very hesitant to go the G tube and as it turned out both couldn't be scheduled at the same time until months later so we decided not to do it. That was one of the best decisions we made because a few weeks later Audrey was off the feeding tube for good!
After the surgery we switched to day tube feedings and Audrey was on several medications and supplements. I also received my order of domperidone, which is a drug that increases breast milk production as a side effect. You can read more about that here.
A few weeks after her surgery we were all getting frustrated with how much Audrey was pulling out the NG tube, both accidentally and intentionally. Both Ryan and I thought she might actually do better with eating progress if we took away the tube feedings altogether. So when Audrey pulled it out on a Thursday night we decided to try leaving it out over the weekend to see how she did. More about that here.
Although it was a very slow process, and Audrey did lost some weight initially (some of that was excess - you can clearly see on her growth chart that her weight went above her 'normal' curve) and her weight plateaued for awhile, a few months later we could say that it had been a success and we were probably in the clear! She was slowly but surely starting to gain weight on her own! You can read about that journey here, here, here, here, and here!
So that leads us to today. Where are we now? Well, Audrey is in speech therapy, which is going super well! She is a happy, energetic 2.5 year old who usually has a great appetite and no health problems! This past year she's had about 3 colds and no other illnesses. She's still nursing, mostly to fall asleep and during the night. She loves to read books, play outside, and build with blocks. Ryan went back to school last September to get his master's in Counseling Psychology and still works full time. I'm a mostly stay-at-home-mom while doing part time birth work: teaching Bradley Classes, attending births as a doula, and encapsulating placentas. In short, everything is back to 'normal,' aside from the once yearly kidney scans and the upcoming well child visit just to make sure Audrey is doing well. Although our journey was difficult and at times painful and traumatic, I can say that some good has come out of it. We are a stronger family. I really learned how to advocate for Audrey to get her what she needed despite the recommendations of the medical professionals (which are not always based on the best scientific evidence!) And we are really enjoying living a "normal" life and to see what the future brings!
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