Sunday, September 28, 2014

Audrey's Story, Part 1

We first noticed a something was out of the ordinary when Audrey was 9 months old at her check up. She had only gained a few ounces from 6 to 9 months so our pediatrician wanted us to keep an eye on her and possibly come in before her 12 month appointment if she wasn't improving. We decided it wasn't necessary to make an extra appointment that we would have to pay out of pocket for. We thought this might be normal. I had researched and talked to friends about how nursed babies sometimes don't want to eat many solids until 18 months and she was still gaining weight, just at a slower pace. Many of Audrey's half siblings grew slowly and were very small, as am I.

Starting in November I noticed that her belly was shrunken and wrinkled. She was very fussy which we thought was teething. Her energy was okay but she was lethargic at times. I researched failure to thrive and Ryan thought it sounded like not a big deal and just a label they give kids. I started to feel like something was wrong but really didn't want there to be so I ignored my gut instincts. I have so many excuses for why we didn't bring her in sooner, but they all sound lame to me now and we feel a tremendous amount of guilt over it. Hindsight and all.

During her first birthday party my mom and Ryan's mom and sister were concerned about her.
She was clingy and shy and didn't want to eat much cake. She had dark circles under her eyes. I had rescheduled her 12 mo appointment to a few days after the party and we were seeing a family practitioner this time. I was very nervous and was dreading the appointment.

 Audrey at her first birthday party

Audrey only weighed 13.5 pounds. When the doctor came in, I asked "is she failure to thrive then?" and she said yes. I burst into tears. She was very kind and I could tell had a lot of empathy. She said Audrey's case was too complicated for her and she referred me to a different pediatrician at Fairview University. I was really upset that night and had actually expected that she would have been hospitalized that day.

The next day Ryan came with us to see the new pediatrician and started to realize how serious this was. They tried to get some blood work done but couldn't get in her veins so we went to Children's and after several tries they got blood. We also saw a dietician who was useless. She gave us a list of foods high in calories and nutrients that we should offer her (which I already knew), as well as a daily calorie goal. She didn't seem to comprehend that Audrey was barely eating any solid foods!

The next morning as we went in for another appointment, Ryan and I agreed that she really needed to be in the hospital. I wasn't thinking too clearly, and so didn't grab any of our stuff but just went into the clinic and told the nurse what we decided. She agreed that it was the right step and we went over to Amplatz, where she ended up staying for over two weeks.

Ryan had a few more clients to see before he came over and also had to stop at the house for our things. I called my parents and his family and they all planned on heading over as soon as they could. After doing admitting procedures and paperwork we got settled in a room and one of our doctors came to get her history. He was very nice and listened openly without judgement. I think I also felt better just being there, which is odd because in general I hate hospitals and doctors.

The nurses were great too, just getting us whatever we needed. I immediately asked for the crib to be exchanged for a bed as we co slept. That was no problem, I simply signed a waiver.

I also announced we were at the hospital on Facebook and asked for a meal train to be arranged for us. Our amazing friends in the API community took care of that! They, and all our other friends, were so wonderful and supportive during this whole ordeal. People brought us food and donor breast milk, gifts, watched our dog, and came for short visits.

After our family arrived things started to happen really fast. They needed to get an IV in her to get blood and give her fluids and she was so dehydrated that it took several attempts. That was the first of many traumatizing and painful experiences. They rolled her up in a towel and placed her on her back and tried several times but could not find a vein. And of course she was screaming and crying this whole time. So they called the vascular team up, for the first of many times, to use an ultrasound to find the vein. She vomited right after they finally got it in, which was so hard to see the level of distress she was in. Everyone was very emotional during this.

After getting enough blood they put her on fluids. They asked me not to nurse her anymore, unless I had little milk left in my breasts and it was just for comfort. They wanted to monitor her food intake and that's obviously difficult with nursing. They wanted me to pump and give her the milk via sippy cup or bottle instead so it could be measured. They also wanted to weigh her diapers, which would have been difficult with cloth, so she went into disposables for the first time.

They also hooked her up to a pulse oximeter to monitor her blood oxygen levels and put a bag on to catch her urine. That came out very cloudy, so they said they had to catheter her for fresh urine which they would culture for a UTI. Although the necessity of a catheter in order to confirm a UTI is not evidence based, which I found out much later, at the time of course we just went along with whatever they said was necessary. The nurse even told me "it doesn't hurt them," which was a blatant lie because anyone with eyes could see that the catheter insertion was painful!

They took the urine to culture but put her on broad spectrum antibiotics in the meantime. Some of the lab results came back and showed her potassium levels were very low due to her severe dehydration and malnutrition. That was the worst part of it all; finding out that she was severely malnourished. Nothing like discovering you are starving your baby, however inadvertently, to feel guilt like a ton of bricks. Because of her low potassium level they were concerned about her heart and needed to use a machine to monitor it which we didn't have in the current room. So we were moved up a floor.

Through all of this Audrey had decided that the only way to cope with this was to stay glued to me. She screamed if anyone else, even Ryan, tried to hold her. And she wanted to nurse almost constantly.

The lab results also showed that her kidneys were essentially failing and that her liver wasn't functioning well, which was due to the UTI, malnutrition, and dehydration. After we got settled in the new room, Ryan's family and my dad left for the night. We asked my mom to stay. I remember asking her if she thought Audrey was going to die. She said no, but that she was seriously ill. She and Ryan's parents, were very worried that CPS was going to take action, even though they knew it was not intentional on our part.

At this point they started the treatment for the low potassium, which was a nebulizer done every four hours or so. Of course she hated this too. The mask had to go over her face for a few minutes and I'm sure was very scary for her. After the first treatment we tried to get some sleep before they came in in a few hours to check her vitals. I tried lying in the bed and nursing her, Ryan on the couch, and my mom in the rocking chair. But Audrey wanted to be more upright and held, so my mom took the bed and I put her in my mei tai carrier. I eventually got her to fall asleep, despite the many monitors and IV on her, and dozed off a bit in the rocking chair but each time they came to check her vitals or do the nebulizer treatment she woke up so I had to get her back to sleep again. None of us got much sleep that night!

After a few nebulizer treatments they needed to check her levels again, which meant another blood draw. Another painful and traumatic experience but I think this time they were able to do it without calling vascular up. One of my biggest complaints about Amplatz is that although it's a Children's Hospital, it's connected to other medical buildings and so there is only one lab. This means that not all the lab techs are good with children. And we got several cranky, unfriendly lab techs who were annoyed that Audrey was screaming and that I had special requests like "try this arm, they got it best there the last few times," or "please just send up vascular because you won't get her vein and it's traumatic to get poked so many times."

Her results showed great improvement on the potassium levels, actually too much improvement. Now it was too high. They had warned us this could be a side effect but it was still frustrating because now she needed to be put on an IV medication to treat the too high levels. In our experience, the medical community is very good at over correcting things.

 Daddy holding her during her nap.

The next day, Thursday, I woke up to a very soft and small breasts. My milk supply had virtually died overnight due to the stress. This was pretty upsetting to me since I really wanted to keep nursing until she was at least two years old and neither one of us was ready for such an abrupt wean. I was already pumping with their hospital grade pump and started pumping even more often to increase my supply. I also sent out a request to the API community and my friends for donor milk. I asked the nurses to see a lactation consultant and they said she was busy with the newborns but would give her my request. I never actually saw a real LC despite asking every.single.day. They did eventually send up a L&D nurse on our last day, who said "I don't know how to help you, I only deal with newborns."

The general consensus was that, oh I had done such a great job nursing Audrey for a year, most don't even make it that far! And I shouldn't be hard on myself, but now we should be done and just 'move on.' This came from male doctors or young nurses without any children. I sincerely doubt anyone on staff had nursed a toddler. They didn't understand how very important it was for me to keep nursing her. It was such a vital part of comforting her as well as all the food she kept down the best, as we later learned. And the immunities, important for a normal, healthy toddler, were absolutely vital for her. So I ignored their well meaning but unhelpful platitudes, consulted with my local LLL, and was determined to bring my milk supply back.

Since I didn't have much milk to give her (I think I pumped just a few ounces over the next few days), they said we could put her on whole milk. I wasn't too fond of that idea, but all our attempts to get her to eat any other kind of food had not worked. I asked about using donor milk from friends, but due to the 'hospital policy' the hospital director said no. I even said I have researched this option thoroughly, understand the risks, and will gladly sign a waiver, just like I did with bed sharing. They still said no as they were worried about viruses and bacteria, including HIV, that can be spread by breast milk and by improper handling and storing. I found this hilarious because a) these women are feeding their own babies the same milk and b) the staff wasn't concerned with how I handled and stored my own pumped milk, or if I had any illnesses to give her. I realize that not everyone would use donor breast milk, just like not everyone views home birth as the right option for them, but it is a reasonable option that should have been available to us and we had the right to make an informed decision.

Since I knew this was the right decision for us and suspected the hospital's policy was mostly based on fear of lawsuits, I decided to buck the authority discreetly. So I asked my friends for any extra milk and they helped sneak it in. We had a fridge in our room so it was easily kept in there. We were keeping a journal of what she ate and just wrote down "milk" so they assumed it was whole cow's milk. We had to be careful about nurses coming in the room because breast milk has a yellower tint to it than cow's milk. Luckily the nurses paid very little attention to what we were giving her.

Audrey was still unwilling or unable to drink from several different kinds of sippy cups or bottles so I asked for an SNS (supplemental nursing system) which is a device often used for newborns and adopted babies enabling them to nurse at the breast while also getting enough milk. It has a thin tube that you tape next to your nipple that connects to a container where formula, breast milk, etc. is put. You can control the flow but the goal is to get the baby to suck the milk out while nursing on the breast. Audrey didn't want to suck very hard so we mostly tried to squeeze it into her mouth while she comfort nursed. We also tried syringing milk into her mouth. We were able to get her to take a few ounces that day, which felt like a big accomplishment! We tried many different solids too; yogurt, applesauce, fruit, crackers, etc. but she didn't want anything to do with solid food.

Part of the problem was they kept needing to get blood samples to monitor her electrolytes and organ function, which meant a painful and traumatic needle stick every few hours, often ending with vascular coming up. This process would take up to an hour to finally get everything done, and then it took a long time to finally settle her down, so there wasn't much time in between to try to feed her. That day they also decided to put her on Boost Kids Essentials, which is a formula with concentrated calories for kids ages 1 to 12 made by Nestle. It has some okay ingredients but also lots of synthetic vitamins, artificial flavors and sweeteners, and preservatives. The two main ingredients are maltodextrin and soybean oil. Needless to say, I wasn't thrilled about this but again felt we had no choice, partly because Boost has 30 calories per ounce while breast milk and whole cow's milk only has about 20. At this point I was grateful that she was even getting any breast milk at all!

The next day was her first birthday. The nurses were very nice and even gave her a gift! They also brought us a wagon we could pull her around the halls in and we went down to the playroom. This was the first time I had been out of her room since we arrived. She really enjoyed wagon rides during her whole hospital stay and we took them frequently to help combat the boredom.


Since she was having so much trouble with all the blood draws they were doing the team decided to put a PICC line in. This required a minor surgery where a line was threaded through a vein in her arm and placed directly into her heart. In addition to the risks of general anesthesia during surgery there was also a big risk that she would develop blood clots and then need the PICC line taken out as well as twice daily injection of heparin to thin her blood. Knowing all this, we decided that at this time it was worth the risks since they needed to draw blood several times a day and it was so traumatic for her. So my baby had surgery on her first birthday. They let me stay with her and I even put on scrubs to go along into the operating room until she was given the anesthesia. That meant a lot to me, that I could be with her as long as possible beforehand.

The surgery only took about an hour and they came to get me as soon as she started waking up. In the recovery room she was very sleepy and a bit agitated, not wanting to nurse at all, which was due to the drugs. After monitoring her recovery for awhile we were able to go back to our room.

The PICC line was amazing! Now she barely even woke up when they needed blood! At this time she had two open portals in her arm, one for drawing blood and the other for giving fluids and meds. This was carefully wrapped up with a "no no," which is a velcro bandage meant to keep kids from pulling an IV out.

 She was very swollen at this point due to all the IV fluids and electrolytes and was put on thiamine to reduce it (correcting a problem that was caused by correcting a problem). You can also see the PICC line on her arm covered by the "no no"

During this time her team had a long list of possible causes on the whiteboard in her room, as well as her plan for the day and goals. Each morning they would come in and we would go over this along with any questions we had. This was very intimidating to me. A group of about seven doctors, specialists, and medical students came in barely glancing at us and most of them weren't too friendly. That could have been because they thought it was our fault as parents, although one nice doctor was very reassuring that it wasn't. Half the time when they came in I was either nursing or pumping and I think that made some of them uncomfortable. I also felt like some of my requests, like continuing to give her breast milk and not just all Boost, were condescendingly agreed to. "Oh, the misguided mom really wants her to keep having breast milk, ok we'll let her have some but the real important thing for the baby to get is the Nestle formula!"

The weekend went by slowly. We had some visitors and took many walks down to the other parts of the hospital, which I don't think we were supposed to do. We were so bored and it was so annoying being disrupted by the very nice nurses all the time. It felt like we had no privacy. We explored mostly in the evenings and found the chapel, lots of vending machines, and many different departments. Several people brought us food, breast milk, and galactagogues for me like a homemade batch of lactation cookies and herbal supplements. It really meant so much to us to have such a great support system, so once again to everyone who helped us in our time of need: THANK YOU!!

On Sunday it was decided that she needed to have a feeding tube put in. This was mentioned as a possibility before but I really didn't want to do it. I didn't have a logical reason, it just felt like admitting there was something really wrong with her. Maybe just the idea of a feeding tube being more permanent. And that it felt like force feeding, and coming from someone who did strictly baby led weaning this was a difficult change. But since Audrey was unable to drink the amount of Boost they wanted (3 ounces every 3 hours) they said it was time for the tube.

I was able to hold her while they put it in through her nose and into her stomach. The worst part for her was being held down; she screamed through the insertion and when they taped it down. Then she had to be x rayed to ensure the tube wasn't in her lungs (although I later learned there are less invasive ways to tell where the tube is then subjecting her to radiation).

Once the NG tube was in they hooked her up to a pump and bag of Boost and set it to run at 60 ml per hour. They said her stomach would need to stretch since it was shrunken after being malnourished for so long and that she would probably be uncomfortable and vomit. And she did. Many times. Especially after they boosted the rate up to 90 ml per hour. I got very distressed and angry and asked that we take it slower with increasing the rate and amount. It was really hard to see her in such obvious pain and vomiting all the time, and then to have to keep forcing food into her. It felt like we were violating her.

There was a positive side to the NG tube though. She was on tons of vitamins, mineral supplements, antibiotic, etc. and these were much more easily given to her via the tube instead of trying to syringe it in her mouth. So some trauma was avoided that way.

One thing that I still struggle with and haven't come up with a good answer to is why was she so malnourished if I was nursing her on demand, 24 hours a day? Many nursing babies don't eat many solids until even 18 months and are able to get enough breast milk without any trouble. Why wasn't I producing enough for her when I had never had supply issues when she was younger? In fact, I struggled with oversupply. The only thing I can think of is that because of the severe kidney reflux and undiagnosed UTI her appetite was very low and she just didn't feel like eating as much as she needed. Which means my supply would be lower as there wasn't that demand to produce more milk.

Hanging out in the lobby


Over the weekend, or on Friday, some test results from blood draws had come back. (Since there was so much that happened in such a short amount of time, I can't remember the details of everything, like when they did these tests). She was negative for celiacs (which I already knew. She wasn't eating any wheat anyways!), there was no tumor on her pituitary gland, and her growth hormones looked normal so far as they could tell.

The big test that had us most worried was the screening for cystic fibrosis. The test for that was a sweat chloride test. Someone from lab came and put a chemical on a small spot on her arm that induces sweating and then placed an electrode over that spot which sends a small electrical charge and causes sweating. The only problem was, they could not get her to sweat at all, even after trying a second time a few days later.

On Monday Ryan had to go back to work and I was mostly there alone with her besides some family coming up a few days. We had gotten into somewhat of a routine of pulling her around in the wagon in the halls, going to the playroom, having lunch and a nap, and tube feeding her every few hours. Having her hooked up to the feeding tube was very annoying and definitely limited her mobility,especially when she tried to crawl around on the play mats they had placed on her room floor. But she was no longer hooked up to anything else besides when they needed to draw blood via the PICC line.

Later that week her electrolyte levels were deemed high enough to stop some of the supplements. We also started asking when we could go home, since it was apparent they weren't finding out the cause and she would be on the NG tube indefinitely. They wanted her to gain a bit more weight first.

We also had an evaluation by a feeding therapist and occupational therapist. They said she had low tone in her lower jaw (which was weird because she nursed and that is what develops their jaw normally compared to being mostly bottle fed), and that she needed to work on eating skills, like being fed by spoon. Of course they had no knowledge of baby led weaning and didn't understand why I was reluctant to spoon feed her.

The feeding therapist came usually once a day to work on these skills, as well as trying to get her used to sitting in a high chair. She had always done fine with that at home but understandably didn't want to sit away from me during this ordeal and I didn't want to push that. I didn't view her needing to sit on my lap as a bad thing but the feeding therapists didn't agree. It was difficult to work with them when our philosophies differed so much and I ended up compromising much of my beliefs and ideals in order to meet her needs and jump through their hoops. We were also concerned with CPS getting involved so we wanted to appear as compliant as possible.

That Thursday was Thanksgiving, which my parents came to the hospital to spend with us. We were provided with a really nice meal and Audrey got a beanie baby teddy bear with a crocheted outfit that Ryan thought was hideous but she still loves. It was a bit ironic that we were in the hospital on Thanksgiving because I usually host it at our house but couldn't the year before either as she was born that day! Maybe this year I will be able to host again :)

On Friday we had a laid back and relaxing (aka boring) day but that night I became very ill with the horrible stomach flu. I was in so much pain with severe vomiting and diarrhea that I asked my parents to come get me so I could spend the night at their house. I just needed to get away from the hospital for awhile. That was the first night Audrey spent away from me. Luckily Ryan stayed with her and the night didn't go too badly for them. He had a shift that Saturday that he couldn't take off so we asked his sister to come watch her for a few hours until I could be brought back. That worked out well but I was very emotional when we reunited :)

That weekend the hospital was very quiet and empty since it was a holiday weekend so we spent lots of time taking walks while one of us wore her or pulled her in the wagon. One time we stole a wheelchair and Ryan pushed us around the halls! For some reason I have always enjoyed stealing a wheelchair.
 Babywearing in a wheelchair

One night that weekend they found a blood clot in her arm. Her arm had started to get swollen a few days before so they were keeping an eye on it and finally ordered an ultrasound. The problem was the ultrasound team didn't get to us until several hours later in the middle of the night. They woke us all up and the tech doing it was a complete idiot and a jerk. He kept saying things like "she needs to hold still and stop screaming." Really? You can't understand why a one year old won't just lie still and silent for a strange man to hold her arm and put a probe on it in the middle of the night? Makes total sense.

After struggling to get a good picture, they found the clot and she was put on heparin to thin her blood and the PICC line was taken out. We were sad to see it go as this meant daily pokes again.

By Monday we were pushing hard for discharge, even though she hadn't met her goal weight yet. We were angry and upset with the medical team, although looking back it was mostly misplaced emotions, but we also felt like she would do much better in her home environment. They evaded our question of "what day can she be discharged" with diplomatic non answers. That must be an essential class in medical school: Non Answer Evasion 10: how to make it seem like you're answering their question when you're really not.

That week I took the training classes for how to do the feeding tube and heparin injections. It was fairly simple. The teacher was nice enough to come to me for a private class as they usually do group sessions in another building. I really appreciated that as I didn't feel comfortable leaving Audrey with the nurses at that time, mostly because she didn't know them and they may have had to leave her if something came up. I was shocked at how many kids were there totally alone, even on nights and weekends. I remember one little baby who would cry in her dark, empty room all the time. I started avoiding walking in that section of the hallway because it was too upsetting for me to see a sick little baby left alone like that.

Audrey was finally discharged on Thursday evening! And it only took three hours. We were not expecting that and it was annoying mostly because the nurse went over everything twice. And of course it was snowing outside so it took us awhile to drive home.

We finally got home only to be bombarded by the Fairview Home Health nurse, because apparently we were so incompetent we couldn't manage her feeding tube and heparin for one night without the same instructions we were just told during discharge being repeated. That nurse just rubbed me the wrong way and I was really happy when she finally agreed that weekly visits with her were unnecessary. After finally getting rid of her we collapsed into our bed for the first time in two weeks, exhausted but so happy to be away from that Hell Hole also known as the hospital.

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