The One Year Anniversary

It's the one year anniversary of Audrey's hospitalization. I have a lot of conflicting emotions about this. I'm so happy and relieved at where she is now yet I still feel the sadness and trauma of what she went through. The other night in the car I turned to a radio station that's already playing Christmas music (which I love, by the way! I drive Ryan nuts by playing it the entire month of December every year) and I unexpectedly starting crying when I heard the pre recorded announcement "We wish you a very merry Christmas, from all of us at Kool 108."

In a lot of ways I think this will be a difficult Christmas simply because the memories of last year are everywhere. I suppose you can't go through an experience like that unscathed. But at least Audrey won't have bad memories or flashbacks like that as we really didn't do many holiday traditions or celebrating last year. On Christmas Day last year both Audrey and Ryan got norovirus and she vomited so hard her feeding tube came out. So we spent part of Christmas in the emergency room getting it replaced while poor Ryan sat in the corner drinking small cans of Sprite and eating crackers. And then I got sick the next day.

I wasn't the only one remembering last year during her 2nd birthday party though. I've started a tradition of making a slideshow of pictures of Audrey during the last year to play on her birthday, and also as a keepsake for her. So this years slideshow started with pictures of her first birthday party and hospital stay. Part of the reason I included them is because it's really amazing to see her progress throughout the year. I also didn't want it to seem like I was hiding those pictures, as they are part of her history and I think it's important to acknowledge it, especially as she's older and watching it. We are all about transparency and honesty in this family!

She fell asleep on her Great Aunt Sue during the slideshow

Besides the emotional aspects of the slideshow her party was so much fun! I'm sure it felt extra special to us, to see her enjoying it and running around excitedly, because during her first birthday party she was very clingy, lethargic, and hardly smiled. This time she ran around babbling excitedly to everyone, eagerly opened her presents, and ate almost a whole cupcake!

On Monday she had her 2 year check up which I've been nervous about even though I can tell she's doing great and growing. Our doctor was taking longer than normal to come in the room as she usually is right on time so that made me feel uneasy too. When she finally came in she asked a few weird questions like "Do you think she has another UTI?" and "How is her energy level and have you noticed dry skin lately?" Then she wanted us to double check her weight. It turns out the nurse had written it down wrong as 22 lbs! No wonder she was concerned! Audrey weighed in at 23 lbs 8 oz a month ago at the urology appointment. This time her weight was 24 lbs 9 oz, but she was wearing clothes and holding a toy so it may actually be a little lower. The doctor had been making a plan for us before coming into the room as she thought Audrey was losing weight again!

Upon realizing her weight and height are great and right on track (33 inches in height, so about 25th percentile for both. Not even the bottom of the charts anymore!) we were able to talk about the regular things for her check up. She did write an official referral for speech therapy and said it was completely up to us since Audrey has made substantial progress since she last saw her. She is now babbling a lot, saying many different sounds, and occasionally real words and short sentences! One of the cutest things she's doing lately is "reading" a book to herself aloud. The doctor said that she should be fine either way but she may progress faster if we do therapy. I plan to schedule an evaluation with a therapist my friend recommended sometime in January and we'll go from there.

She also recommended looking into physical therapy or even gymnastics class, as Audrey is a little behind in some gross motor skills. She can but won't walk up and down stairs, she prefers to crawl, and she hasn't kicked a ball before. Funnily enough, my mom got Audrey a parent/child gymnastics class as her birthday present!

Audrey had a slightly elevated temperature, which we thought was due to her having a mild cold. I mentioned to the doctor that, as far as I know, Audrey has NEVER had a real fever, not even when she had that first UTI for who knows how long. I had mentioned this is several doctors in the past but they all disregarded it, even her pediatrician. Our current doctor, however, said that this was very odd and could indicate that she is possibly immune-compromised, so we may address this in the future with another specialist. I have to admit that I've never taken her temperature more than a few times, however, because I assume that if she has a true fever she would feel very hot to to touch, which she never has. She has felt warmer than usual at times, but never hot enough that I would think "fever." Part of the reason I've never bothered with taking her temperature is because I wouldn't be concerned about most fevers as I believe it can actually be harmful to try to reduce them. See here for more information on this philosophy.

Audrey will be going in for another check up in 6 months, just to make sure she's still doing well. And although this time may be difficult for us in some ways, overall we're looking forward to a very happy and normal holiday season!

20 Reasons I Will Always Choose Homebirth

I recently came across this amusing list of 45 Reasons NOT to Have a Home Birth and it inspired me to make my own list of why I will always choose homebirth. I'm assuming my future pregnancies will be healthy and low risk. Of course I would have a hospital birth or c-section if it was truly medically necessary!

I also came across this opinions piece on a local mommy blog that irked me because it urged families to reconsider homebirth, VBAC, and natural birth based on her personal opinion and experiences. So I decided that my list would be full of personal opinion too, just from the opposite side, although I do link to research on some points.

Disclaimer: Unlike the NICU nurse blog post linked above, I DO NOT think I know the best birth place for everyone. Two people can look at the same data and decide very different things, or have other factors to consider. This list is not a judgement of anyone's choices, it is not meant to fuel the so-called "mommy wars," and is not meant to convince anyone to birth anywhere. It is just a list of personal reasons why I choose homebirth. Similar to choosing to go to a Lutheran Church on Sundays or eating a dairy and gluten filled pizza on a Friday night may be the best choice for me, that does not mean I judge anyone for being an Atheist or avoiding animal products. Nor does it mean I'm trying to convert anyone to Christianity or junk food.

1) I don't want strangers at my birth. Even if you get your care provider of choice, which may not happen if you give birth when they're not on call, you will definitely get one or more nurses you don't know. I spend 6 months getting to know my midwife during hour long prenatal visits which means we know each other pretty well and I am comfortable with her and her practices.

No strangers here, just my husband, mom, and midwife.

2) I don't want to be bombarded by a million stupid questions during admittance to the hospital and annoying typing sounds as they enter the information into the computer. "Did you take your prenatal vitamin today?" clickity clack clack "When was the last time you ate something and what was it?" clackety click click "Are you allergic to any medications? Oh now I see on your chart that you're not" clickity click clack "Ok, now it's time for me to shove my fingers into your vagina to assess your "progress."

3) I don't want to leave the privacy and familiarity of my home during labor and go into the bright lights and cold, clinical atmosphere of the hospital. Car travel while dealing with contractions sounds like a nightmare. And privacy and familiarity are important in order for your hormones to be at optimal levels. Women instinctively seek out a dark, quiet, private place where they feel safest and many times labor will slow or even stall when they arrive at the hospital. Your thinking brain says it's safe but your primitive brain says the bright lights, strangers, and unfamiliar atmosphere is dangerous! This can cause your adrenaline to go up and your oxytocin and beta endorphins to go down, which is the opposite of what you want.

Laboring in the comfort of my own home. Ryan is doing the rebozo technique to encourage baby to change positions (she was posterior) and for my comfort during contractions.

4) It's WAY cheaper! I know this isn't the case for most people with good insurance, but I'm on the bare minimum insurance with super high deductibles. It would actually cost us MORE for a natural birth in the hospital than it does for a homebirth midwife. Especially considering all the prenatals and postpartum visits homebirth midwives provide.

5) I want evidence based fetal monitoring. Intermittent auscultation (listening occasionally with a fetoscope) is shown to be better than even intermittent doppler or EFM (electronic fetal monitoring). And there's no ultrasound used with a fetoscope. See here for information on evidence based fetal monitoring.

Palpating for baby's position, after which my midwife used a fetoscope to listen to baby's heart tones.

6) My children deserve to be present during the birth of their siblings. A sibling attended birth may be possible in a hospital but in homebirth it is often expected and even encouraged.

7) I want a waterbirth. Waterbirth has many documented benefits for baby and mom and is safe. See here. It's possible to plan a hospital waterbirth but it's much more likely to actually occur at home as you aren't competing with other women for use of the tub or getting risked out for reasons that may not be evidence based.

Shortly before Audrey was born in the water

8)  I want to push when my body tells me to, not when someone else tells me to. Hospital staff often tell women to push HARD as they count to 10 and to do so 2 to 3 times during a contraction. They may also want you to start pushing as soon as you reach 10 cm dilation even if you don't feel the urge yet. Partly because they see mostly medicated births, where the woman often can't feel the urge to push, and also because they want you to hurry up and have this baby now. My body is perfectly capable of knowing how and when to push and I don't want to be put on someone else's timeline.

9)  I want to be free to instinctively choose the position for pushing my baby out which may be squatting, kneeling, standing, lying on my side, or something else. The most common position for a woman to give birth in the hospital is lying on her back, which is actually the worst position physiologically. It's what we're used to seeing in media and it is convenient for the staff. The woman is often too tired and away in "labor land" to be able to assert her desires to move and then actually do so. Plus she is often on her back already for the EFM and vaginal exams that are frequently performed.

10) Speaking of vaginal exams, I prefer none. I know it sounds crazy to not want another person's hand up in the most intimate place of your body. But there is no good reason to do them during pregnancy (see here) and I trust my body to know when to push my baby out. I may decide to have one done before I start pushing if there's concern that there is still cervix left, or in the case of variations like a long labor, but that will be one exam likely done at my request. Not several exams every few hours by various nurses and doctors. Labor is MUCH MORE than mere cervical dilation!

11) I want to be snuggled in my own bed after birth and will likely not be moving (except to go to the bathroom and take sitz baths) for a good many days afterwards. I imagine in the hospital you are constantly interrupted by well meaning nurses. We were during Audrey's hospital stay at least. I also don't want to be kicked out of my birth place 4 hours after giving birth, as is done in a birth center.

So comfy in our own bed! And she's looking at us for the first time.

12) Snuggled on top of me in bed will be my newborn. Yes that's right, I sleep with my babies.  I don't think the hospital staff would take kindly to that and I would prefer not to have annoying conversations about bed sharing. On the other hand, my midwife actually encourages bed sharing. Isn't bed sharing super dangerous you ask? Short answer is no, if you do it intentionally and make your bed safe. See here and this book by LLL for more information.

About 24 hours old, enjoying skin to skin and sleep with Mom.

13) I don't have to remind anyone about my birth plan or risk it being ignored. Many times, a wonan's desires for a natural birth are respected and encouraged. Not so much for the third stage of labor if she doesn't want them yanking out her placenta or giving pitocin routinely. After 6 months of hour long prenatal visits my midwife is very familiar with my desires for birth. And her philosophy of birth and subsequent practices are mostly what would be on my birth plan anyways.

14) My family should be able to bond with each other after the baby is born, me and baby especially, and not be interrupted by random people we will never see again. I don't want my baby rubbed dry with towels, a hat shoved on his head, the cord clamped after it's "done pulsing" at 30 seconds, or  strangers chatting around us. "Oh what a lot of hair!" "Now she's crying good!" "You did so great!" Barring an emergency, I want us to be left alone. This is a special, sacred time that will never be repeated.
 
15) Baby led breastfeeding. My baby knows how to latch immediately after birth and we don't need a nurse to swaddle her hands up, grab my boob, and shove her on. Information on baby led/laid back nursing

Laid back nursing

16) In the case we have a boy, I don't want to be asked about circumcision or risk having his foreskin forcibly retracted. My midwife, as are most homebirth midwives, is a strong supporter of leaving babies intact. Who knows what the hospital staff's position is? To quote author and urologist, Dr. Adrienne Carmack: "No, it's not ok to cut your newborn child's genitals. Period." Curious about circumcision and why people are against it? See here, here, and here.

17) Homebirth means continuity of care. In the hospital the OB or midwife is usually done with baby care the minute the cord is cut and after the woman is discharged from the hospital her next appointment is usually at 6 weeks postpartum. A homebirth midwife views the mom and baby as one unit, even postpartum (often referred to as "motherbaby"), and will continue to provide postpartum care throughout 6 weeks postpartum with many in home visits.

Newborn exams and measurements, which were done a few hours after her birth.

18) If my midwife suggests an intervention or even hospital transfer, I trust that she's not wanting to be home for dinner, needing to adhere to hospital policy (which may or may not be evidence based), or unskilled in what may be a normal variation of birth. Since she is an expert in normal, natural birth I can be pretty sure that said intervention or transfer is actually necessary.

19) On the subject of complications and variations, homebirth midwives are very skilled and knowledgeable on how to handle many of these. You don't need to have a picture perfect birth in order to have your baby at home. During Audrey's birth I actually had several 'complications': long labor lasting 3 days (during which I'm sure my cervix wasn't making any "progress"), meconium stained waters, hemorrhage, and a nearly 3rd degree tear. All of these were dealt with safely and easily by my midwife. And they would have been dealt with differently in the hospital in a way that likely wouldn't have been as holistic, natural, or respectful of me or Audrey.

20) Lastly, and most importantly, I believe that natural birth is a normal bodily function that happens best when not interfered with and is only rarely a medical emergency. Birthing at the hospital does not give you a 100% guarantee that everything will go right. Just like in everyday life there are risks involved. Most people decide the benefits of getting out of bed to go to work is worth the risks of leaving their house (they may be hit by a car! Or catch a deadly disease from a stranger! Or get gunned down by a coworker!) The same considerations of risks and benefits apply to birth. For me, the benefits of homebirth far outweigh any risks. And the cons of hospital birth far outweigh any potential benefits. See here for research on the safety of homebirth.

Kidney Ultrasound Checkup

This past week we saw our great urologist for an ultrasound of Audrey's kidneys to check on their functioning. She cried during the ultrasound, but the tech was nice enough to let me sit on the bed next to the machine and hold her doing the scan through her back instead of her abdomen, which they've never offered before. Sure would have been a nice alternative to holding her down on the bed all those other times! She was able to be distracted by the screens a few times but was otherwise understandably upset. I was able to briefly comfort her with nursing, which I found amusing as I was sitting about 6 inches from the ultrasound tech and I'm sure she doesn't see many nursing toddlers!

Right after the ultrasound we had the consultation with our urologist, Dr. Jane Lewis. Everything is looking great! Her kidneys are actually measuring smaller than the last ultrasound 6 months ago, but the urologist said that's probably either due to an error in the previous measurement and/or her right kidney now has less hydronephrosis (swelling inside the kidney due to a build up of urine). They are measuring within the normal range for her age, however we will know more at her next ultrasound in 6 months.

Dr. Lewis also said there that we won't know how her kidneys, especially the right one, will function over her lifetime. She thinks it will be fine for her childhood but we just have to wait and see how it goes. She did give us some good ideas on how to help her kidneys, such as avoiding ibuprofen and keeping her well hydrated.

Dr Lewis reminded us that if Audrey ever gets another UTI we need to let her know right away. And I found out a good way to monitor her kidney function is to check her blood pressure since the kidneys filter the blood. The nurse attempted to get her blood pressure reading but Audrey was too upset for it to be accurate. Hopefully we can get an accurate one at her 2 year check up.

On a side note, I was excited to see her weight at 23 lbs 9 oz so she's staying at about the 35th percentile, which was where she was from birth to 6 months. Her length indicates she shrunk but we're pretty sure it was because she was squirming and hunching down from the measuring bar they had her stand next to. This has happened before, as you can see in the second chart below.

Her weight chart (WHO chart for girls) where you can see the slower gain from 6-9 months, the drastic loss by 12 months, the rapid weight gain (with some loss around 13-14 months due to her inability to keep down various formulas) that peaks with her near the 85th percentile-WAY too high for her! Some weight loss after the NG tube was taken out and then she settled back into a pattern at about the 35th percentile.

This chart is her length (WHO chart for girls) where you can see she "shrunk" from the last appointment. She may have actually shrunk some after being so malnourished, as you can see in the lengths from 12-16 months, but I'm fairly confident she is growing in height now. I measured her myself a couple times at home and I got 32.5 inches which would put her right on track. We'll see if we can get a more accurate measurement at her 2 year check up next month.

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 babies who exclusively nursed at the breast 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 was/am I.

Starting in November at 11 months old 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. Because of all of this and a bad feeling, I rescheduled her 12 month appointment from early December toI had to a few days after the party and we were seeing a new provider this time. I was very nervous and was dreading the appointment.

 Audrey at her first birthday party

The nurse weighed Audrey before we she took us back to the room. 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 the needle into 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 respond when I told her the problem wasn't what we were offering Audrey but that she wouldn't eat.

The next morning as we went in for another appointment, Ryan and I agreed that she really needed to be in the hospital. We both just felt deeply that this was the right move. 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 Children's, 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. I think that was a sign that we were really supposed to be there.

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. My mother in law, a NICU nurse, even rolled her eyes and said "she clearly has a UTI from the looks of that urine!" The nurse even told me that putting in a catheter 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 the time Ryan and I didn't even think much about CPS and even during our hospital stay it wasn't a big concern. In hindsight I am super grateful that we weren't worried about that and also that CPS medically kidnapping kids from non mainstream families wasn't as prevalent yet. If they had taken custody of Audrey and forcibly removed us I would have completely fallen apart.

At this point they started the treatment for the low potassium, which was a nebulizer done every four hours. Of course she hated this too. The mask had to go over her face for a few minutes and I'm sure that was very scary for her. After the first treatment we tried to get some sleep before they came in a few hours later 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 a baby 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 realized that 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 weaning so suddenly. 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 liability than actual evidence, 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 we had tried 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 getting supplemental milk at the same time. It has a thin tube that you tape next to your nipple that connects to a container where formula, breast milk, or other supplements are 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, 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. None of the other ones even made eye contact. I felt like we were not people to them but specimens to be studied. 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 (food or supplement that increases breastmilk supply) 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 (letting a baby self feed with table foods instead of spoon feeding purees) 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 the NG tube 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 upset 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 also felt nauseous and was having back pain. So she probably wasn't nursing 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

On Friday, some test results from blood draws had come back. She was negative for celiacs, there was no tumor on her pituitary gland, and her growth hormones looked normal.

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 that she was stabilized and since 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 so we could get out of there. 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 little stuffed animal so it was nice despite being in the hospital.

On Friday we had a laid back and relaxing (boring) day but that night I became very ill with norovirus. I was in so much pain 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 somewhat 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 101: 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 crying for hours.

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.

A Surprisingly Emotional Reunion!

Today Audrey had a check up with a family practitioner, Dr Sara Johnson, who I tried switching to 8 months ago, before she was hospitalized. It was a very emotional reunion for me and I did not expect that!

I had been contemplating switching care providers for Audrey for awhile now because there were several minor issues that I had with our current pediatrician. A few of them: she was very cautious and initially unsupportive of us removing the feeding tube and said several times "she needs to start gaining more weight or we'll have to do something" even after it was apparent that Audrey was doing just fine without it; she really pushed the speech therapy idea staring at 18 months and labeled Audrey "speech delayed" in her chart (we were not so concerned and wanted to wait until she's two, especially as she been on the later end of other developmental milestones and with all the medical trauma she's been through I wouldn't be surprised if that delayed it further), and she pushed night weaning claiming that "night nursing causes cavities," which is not an evidence based claim (see here).

I also had a feeling that this doctor was too focused on Audrey's past medical history, and while she was great during the crisis, we really needed someone who would look at Audrey now and not at Audrey 6 months ago. She is a normally developing toddler now and deserves to be treated like one.

So I was in search of a new doctor. I was open to anyone but preferred a family or nurse practitioner as I've heard they tend to be more laid back than pediatricians and they can see the whole family. I actually had forgotten about the very compassionate and kind doctor (Dr Sara Johnson) we had seen briefly for Audrey's 12 month check up and whom had been recommended by our local API group (attachment parenting international - see here for more information on what attachment parenting is.)

You see, I am very picky when it comes to who my family sees. If there was a pediatrician version of a homebirth midwife who took our insurance, I would be the first signed up! Because of our parenting and lifestyle choices, I'm not comfortable with just any provider. They have to, at the very least, be respectful of our family's choices and preferably supportive of them. But I don't really need any parenting or lifestyle advice. What I really need is someone who will weigh and measure my kids, look at their eyes, ears, mouth, check their lungs and heart, take Audrey's blood pressure (indication of how her kidneys are doing), and ask if I have any concerns. Because honestly, I research the hell out of things like child development, breastfeeding, normal eating and sleeping behaviors, discipline, and carseat safety and may actually have more knowledge on our choices than a medical professional does. I really don't need them to ask about her sleeping habits or tell us how we should discipline. And if I do have questions on these things, the first place I go is the local API group, not the doctor.

So along with my long list of musts I ran into another problem. All the good providers that my friends were recommending were not taking new clients! I ran into this problem before when Audrey was a newborn and we had to switch from the wonderful care of our midwife. Ryan advised that I just stick with our current doctor because he said, "all doctors suck." Which I am mostly inclined to agree with. In case you can't tell, we are generally not a fan of the mainstream medical community in this house. But I knew there were good providers out there and I needed to find someone I could trust in case we did need medical care in the future.

I was browsing in the Intact MN private group (a grassroots organization that provides research based information on circumcision and intact care) in the list of Intact Friendly providers and came across Dr Johnson's name, thinking it looked familiar. I realized I had also seen it in a recent list of AP friendly providers, so I went to see if I could schedule an interview or appointment with her. Looking at her profile picture on the Fairview website I realized that this was the doctor Audrey had seen at what was supposed to be her 12 month check up! Now I wondered if it would be awkward or weird to try to switch back to her. Would she remember us? Would she think Audrey would be out of her scope of practice given her history? I tried to schedule an interview but apparently they only do that for newborns. Because once you find your care provider, you aren't supposed to ever switch or anything. So I scheduled a regular check up for her and had a short summary of her medical history ready to go.

After Audrey was weighed and measured (22 lbs 9 oz by the way!) Dr Johnson came in and asked, "Do you remember me?" I was really surprised because I thought I would have to ask that! And "Oh my, look at her! She looks amazing!"

She said she had been following along on Audrey's case through the Fairview system because it had made such a big impact on her; this very sick child with a really puzzling case and a very loving, attached mom. I actually got really emotional and started crying, which I did not expect at all. It was surreal to walk into this clinic where we had been only 8 months ago in such a different scenario. I will always remember that first visit: weighing Audrey and finding she was only 13 lbs, asking Dr Johnson, "is she failure to thrive then?" and crying so hard when she said "yes." She was so kind then and I remember her looking upset and very empathetic. And now, here we were after such a long and difficult journey, in such a different place.

After catching her up to speed on Audrey's journey and looking at the notes in her chart she agreed with me that waiting until 2 to reevaluate her speech is a good plan. And that her rate of growth is fine. And she asked about her night nursing, "is she nursing a couple of times at night but overall sleeping 10 to 12 hours?" with no mention of nursing causing cavities or suggesting we wean. She just has a very laid back and relaxed demeanor while also coming across as very caring and compassionate. She even sat down on the floor with Audrey and interacted with her while looking her over! And Audrey didn't want her ears checked so she said "we'll just skip it, she's had a lot of check ups lately." She seemed to understand the trauma that all the medical testing and procedures have caused Audrey and was very respectful of that. She seemed to "get it" more than any other doctor we've seen.

I'm relieved to have found a trustworthy provider, whom I will soon be seeing for a physical myself. And I'm so excited to see what our future holds!

The Newborn Hearing Screen and Upper Lip Tie

Last week I had a midwife friend come out to do the newborn hearing screen for Audrey. At the time of Audrey's birth some midwives were just starting to offer the screening to their homebirth clients and our midwife did not. (For more information on the newborn hearing screening program see here.) And it got swept by the wayside during her 6 week child check up with the pediatrician and so here we are 18 months after her birth doing a hearing screen!

This has only become a concern since she is now officially diagnosed as "speech delayed." The pediatrician wrote a referral to the audiologist, whom we may still have to visit, but I always prefer erring on the less invasive and less traumatic approach first. Kind of our general approach to everything; why go to a specialist if it's unnecessary? Another analogy: most American women see obstetricians for their normal pregnancies and births even though OBs are highly trained in abnormality and surgery whereas midwives are highly trained in normality. It's just overkill and those OBs are trained in and used to finding things wrong when it's usually just a variation of normal and not a high risk situation.

So anyways my friend came over and administered the test, which was very easy and quick and not traumatic - yay! A soft rubber nodule was placed in each ear, one at a time, much like an ear plug, which delivered a sound made by the machine. It then measured the echo that happens when the ear functions normally. Depending on the echo measured the machine either gives the baby a PASS or REFER, which means to refer the baby to an audiologist for further testing. Well Audrey passed, no surprise to us! It's pretty clear she can hear and understand us.

Today we went to see Dr. Darcy of St Croix Kidds Pediatric Dentistry in Hudson, WI about Audrey's suspected upper lip tie. I was pretty sure she had an upper lip tie but wasn't sure if she also had a tongue tie or lower lip tie. Here is what the St Croix Kidds website says about tongue and lip tie, which is better than I can explain it: "The muscles of the cheek and lips are attached to the gums and tissue of the mouth by a piece of soft tissue called a frenum. Sometimes a frenum can be attached too high on the gums causing recession or spaces between teeth. Also, there is another frenum under the tongue. If this frenum is attached too close to the end of the tongue it can adversely affect swallowing and speech. This is referred to as being “tongue-tied”. A frenectomy is a safe and simple procedure where either part or all of the frenum in question is removed in order to maintain a healthy balance to the mouth."

Tongue and lip ties can cause problems with nursing (painful, cracked, sore nipples for mom and insufficient milk intake for baby), speech problems, and dental problems. I did have problems with her latch and severely cracked and sore nipples so I wonder if that would have been alleviated if we had cut her tie at birth. Dr. Darcy recommended that Audrey will need the procedure before she gets her permanent teeth, around 6-8 years old, but since she has no cavities there's no reason to do it now.

Here is an example of an upper lip tie (not Audrey)

Normal upper frenum with no tie

I was still very happy we had a consult with Dr. Darcy for two reasons. 1) She confirmed that night nursing will not cause cavities as long as we brush her teeth before bed, contrary to our pediatrician telling me I need to night wean her. (Yep, great idea! She still frequently nurses at night so let's take away a good number of her calories she's getting based on problems bottlefed babies have! Because it's not like she's had trouble gaining weight or anything!) 2) Dr. Darcy told me how to brush around the delicate frenum tissues, which I've been doing wrong! Normally you would just brush right across the whole area but with all that tissue in the way you need to go in from each side with the top of the toothbrush not going across the tissues but just up to the space between the front teeth AND also do the back of the front teeth.

So two very good appointments! And now we're off on our first camping trip as a family with the Twin Cities Attachment Parenting Group! Four days with a toddler in a tent and cloth diapers, cooking over an open fire! Should be fun!

Changes and More Changes!

Audrey has a growth check up today and although she's only gained 1 oz since her last visit a month ago she grew almost an inch in height! The pediatrician was pleased with her progress and said she looks great and is the picture of health! Poor Audrey hates these visits, especially the weighing and measuring. She definitely remembers her unpleasant and painful experiences with medical staff. The pediatrician also said that her kidney issues were the cause of all the subsequent health problems, which we knew but it was so nice to hear a medical professional say so as well!

One area of concern is that Audrey is still not talking. The only word she says is no. She used to say mama and dada, and still makes those sounds, but more in a babbling way. Originally we had planned on waiting until she turned 2 to go to speech therapy but the pediatrician is pushing us to go sooner so the new plan is to go in the fall or late summer. The idea of speech therapy doesn't upset me nearly as much as her physical health problems did and it seems like a fairly painless and minor intervention.

Tonight I was cleaning out the last of the leftover medical supplies to donate or toss. What a happy task! I already love paring down my material possessions but have never been so glad to get rid of something before. It already seems like a very long time ago that we were giving intramuscular injections, using tube feeding pumps, and giving her dozens of medications, but it was only 6 months ago!

Another change I am making is trying to get off my antidepressant for the third time. I have been taking it for over 10 years. I was already at a very low dose (10 mg) while trying to wean off during pregnancy but would absolutely love to not be on any at all. There is some new research that has come out that citalopram is not only linked to postpartum hemorrhage (which I had) but also fetal kidney abnormalities. So I would really like to get off of it.

I have been on half my regular dosage for a week and can already tell a difference in my anxiety levels and mood. I feel very stressed and anxious about nothing in particular much of the time, overreact emotionally to things I cannot control, and often feel very sad. This is what has happened the other times I tried to wean off as well. This time I am trying very hard to notice these feelings, realize that it's ok that I'm feeling this way, and try to ignore it and get on with  my day. In the past I would have dwelled on it, gave into the feelings, and make life miserable for everyone else. I am also trying to get lots of vitamin D every day, exercise, and de-stress with alone time. I will also be trying St John's Wort for the first time after I have weaned completely off the citalopram. I know it's not the worst thing to be on an antidepressant and I will definitely go back on if I need to, but it would be so awesome to not have that drug in my body, Audrey's body via my milk, or future baby's bodies during pregnancy-which is the biggest concern I have.

18 Months And Counting!

I can't believe we're here! Audrey is 18 months old today! 6 short months ago we were in the hospital and were going through a traumatic and difficult time. We had no idea what was wrong with her and were being told  incorrectly by some of the doctors that our parenting and feeding choices were to blame. I'm so glad we're on the other side of things now! And I'm so glad that she is still nursing!

For awhile I thought she was going to wean and I was devastated at that thought. Although most babies in the US are not breastfed past one year, I was determined that Audrey should nurse to at least two for a number of reasons, including: health, nutrition, and bonding. The normal biological age for weaning is actually between 2.5 and 7 years! (See here and here for more information on "extended nursing," or as I prefer to call it "full-term nursing.") This was around January soon after she was discharged from the hospital. She was being tube fed formula and not tolerating it well at all - lots of vomiting. Although she had comfort nursed a lot during the hospital stay she was now gagging when I tried to nurse her and often refusing the breast. I was so worried that this would inadvertently cause her to wean before either she or I was ready. Thankfully, we switched her from formula to breast milk (both mine and donor milk) and she mostly stopped vomiting and started nursing more often again! It was not easy going against the medical advice, which was to try all these different hypoallergenic formulas, and say "No, she needs to be back on breast milk!" There was concern that breast milk alone is inadequate for a baby over 12 months old and that she would be unable to grow. Granted, I agree that only breast milk is not ideal for most toddlers (although I have heard several stories about toddlers who would not eat solids until closer to 18 months old and had no issues) but considering that she was not keeping formula down it was the next best choice for her. She did really well on all that donor milk and even starting gaining a half a pound a week!

So now Audrey eats solids on her own and she also nurses for comfort and nutrition. Her nursing patterns are typical of a toddler her age: nursing to sleep and after she wakes up, for comfort during the day when she's upset, to reconnect with me if I've been gone, etc. I hope we are lucky enough to continue nursing for as long as she needs and wants it.

Weight Issues

Yesterday Audrey had a growth check and her 18 month check up. She is growing in height but not in weight yet. BUT she hasn't lost any weight so that is great!!! She is 21 pounds, 11 oz. We have another growth check in a month and hopefully she will start gaining then! I am so relieved as I was really anxious about what the pediatrician would say if she had lost weight. She seemed annoyed at the last appointment that Audrey was off the feeding tube so I was wary of any uncomfortable confrontation. Because there is no way we're putting her back on the tube right now with the great progress she's made in eating! But thankfully the ped didn't suggest any interventions for right now.

She is doing great developmentally, but is delayed in speech. She only says a few words but mostly babbles and screams or whines for things she wants. We already knew she's behind on speech but are going to wait to see if she catches up. She just started walking and was behind average on that skill so she may just need a little more time. Certainly by age 2 if she's not talking still we will look into speech therapy.

So not only has Audrey had weight issues, but anyone can plainly see that I am also very thin. Believe me, this was not intentional! I have actually struggled with being a bit overweight in the past and lost about 20 pounds before getting pregnant. During pregnancy I gained about 35 pounds (my midwife was less concerned with my weight gain and more concerned with my diet. Contrary to popular belief, weight gain during pregnancy usually isn't that important; it's WHAT you eat that counts!) and gradually lost it postpartum. But last fall I realized that I had lost a LOT of weight so I tried to make sure I was eating enough. During Audrey's hospitalization we actually thought for awhile that my milk supply had decreased so much because I wasn't taking care of myself, but now we know that she didn't feel good and so wasn't nursing or eating enough and that's what caused my lower supply. Then I got the stomach flu. Three times. Nonstop vomiting and dehydration will really make you lose weight! After each bout of illness I looked pretty bad. So now here I am, a whopping 120 pounds, trying to gain some weight.  Eating full fat dairy products, peanut butter, adding in extra snacks, etc. So far I haven't gained any weight. I don't know, maybe this is the weight I'm supposed to be at. But I need to remember to take care of myself too and not just Audrey!

About 3 years ago, at 145 pounds

Today, at 120 pounds with baggy clothes

Discharged!

Today Audrey has been officially discharged from OT and the home nurse and supplies provider! They are picking up the pump tomorrow and I've never been so happy to get rid of anything in my life! She has been tube-free for about a month now! Her growth is still a concern as she isn't gaining in height or weight as much as they "would like to see," but her growth hormone levels are normal.

There's been so many times that it seemed like this day would never come. It has been a very difficult winter for us, seeing all the healthy kids around and on Facebook. We tried so hard to do everything "right," researching all our decisions and choosing options that were evidence based and intuition based. It has been a humbling journey for sure. But I don't feel an overwhelming sense of guilt like I did during her first hospitalization. There was something wrong and no matter what decisions we made she would have had problems.

In a way, I'm grateful for this journey that has taught me so much. Of course I wish none of this had ever happened, but since it did I'm glad I was able to learn and grow. For one thing, I am definitely grateful for modern medicine now in a way that I wasn't before. Although I still think natural is best, especially when it comes to babies and birth, I don't know that Audrey would still be here if it wasn't for her medical treatment during her first hospitalization and her kidney surgery.

I also learned to practice what I preach. Part of the reason I chose homebirth was because I really didn't want to be advocating for myself during birth. I wanted a care provider who would be on the same page as me and who I could trust wouldn't impose unnecessary interventions. But I always told others that if they chose a hospital birth they would need to become their own advocates and push for alternative options to be available to them. This sounds simple but can be incredibly hard! Especially when they play the "dead baby" card and imply that if you make a choice that is not what they've suggested, your child will not recover. I'm still in the midst of advocating for Audrey as her pediatrician is not happy we have discontinued the tube feeding and is concerned she's not gaining weight. Being your own advocate and taking responsibility for you and your child involves a lot of time researching the options, trusting your intuition, and even switching care providers to someone who is willing to work with you on what you find important. After all, they work for you!

It's so incredible now to sit down to a meal and watch her eat! She's like a typical toddler, sometimes not eating much and other times eating a lot! She really loves cheese, cereal bars, strawberries, and chocolate. She also nurses quite a bit during the day, which I'm so happy about! Comfort nursing and nursing when she's hungry or thirsty. In short, she's acting just like a normal 17 month old! So amazing consider where she was a few short months ago.

Making the Medical Bills Go Away

So we have a few medical bills. And we owe a bit. Like thousands. Thankfully Audrey is now on Medical Assistance (after sending them mounds of paperwork and waiting weeks on end). Our caseworker called us and said she will be retroactively covered from November to the present but since the new health insurance law everyone is trying to get on state insurance and so they are very backed up, so it will take awhile for them to get to all the bills. And I've told all the billing agencies this information. Repeatedly. Somehow that doesn't stop them from sending letters or calling me. They seem to think I can make the money appear out of thin air, or prod the state government to go faster. Most are polite but one lady in particular was pretty rude and very cold saying "these bills are several months old and they need to be paid! And we are going to send this bill to collections!" Well, take it up with MA, lady, cuz we don't have your money. Ironically, the collections companies we've been dealing with have been very kind and understanding! They just want me to call once a week to update them. This has all been very frustrating and time consuming. I wish I could somehow call both the state and the billing agencies at once and have them fight it out with each other. I'm just the middleman, people, I have no power!

Appointments This Week

Audrey had a check up with the pediatrician on Monday to make sure her weight is ok after the tube has been out. I could tell the doctor wasn't very happy with our decision to leave the tube out but there's no way Audrey would have made this much progress if we had kept it in! We've been weighing her daily at home, and according to our scale she has lost about a half a pound (current weight at 21 lbs 7 oz) since the tube came out but according to their scale she has only lost 2 ounces (21 lbs 11 oz). The current plan is to let her be unless her weight drops below the 30th percentile (which is the percentile she was on while thriving as a younger baby) and then we will need to revisit specialists and other possible health issues. So we are aiming for her not to drop below about 21 pounds, and then of course she will need to start gaining eventually.

We are trying to increase her calories and fat as much as possible and offering calorie dense foods every few hours. Some days she eats a lot and some days she doesn't want much, which is typical toddler behavior. And she's still nursing on demand which helps a lot! I'm trying to wean off domperidone too. So now it's just a wait and see game.

Today she had an ultrasound and appointment with the urologist to see how her system is functioning after surgery. Everything looks great! She doesn't have much reflux now so we can stop the antibiotic! I'm really hoping she will start eating better after her gut flora starts to get back to normal. She really hated the ultrasound and screamed the whole time. I think she has too many bad memories of everything that's happened. But at least it was just an ultrasound this time, no catheter. We will have a follow up ultrasound and appointment in six months.

I also asked the urologist about her recommendations for screening siblings for kidney reflux. She tends to be a "wait and see" kind of doctor which I really appreciate. She said it's basically our call as to whether we would like to do a VCUG just to see or we can wait until baby gets a UTI. I'm pretty sure we'll wait and see if baby gets a UTI or has growth problems before we do a VCUG. Note: I am not planning on getting pregnant any time soon, this is just me planning way, way ahead!

The New Normal

Audrey did so well over last weekend without the tube that we decided to continue to leave it out and just take it one day at a time. She definitely has been eating more! But we are concerned that she has lost some weight and are now considering putting the tube back in next week. It's such a hard decision and I feel a lot of anxiety over it.

I have been struggling with some anger and depressions issues over this. I so badly just want her to be back to "normal" and not have to feel so anxious about her eating anymore. It sometimes feels like we will never be in that place. But Ryan reminded me that we will never go back to how things used to be-we are in a "new normal." This is a phrase I like to use with my students when talking about how their  new baby will change their lives. They will never get "back to normal" as they used to know it, but they can expect to reach a "new normal" eventually with their baby. The postpartum time can be very difficult emotionally and physically and many new parents put a lot of pressure on themselves to get "back to normal" as soon as they can. But life can never go back to how it used to be before baby came. The same applies to our situation. Our life will never go back to how it used to be before she was hospitalized and getting upset and angry over the fact that life isn't the way I want it to be doesn't help anyone. So maybe I just need to accept that this is our "new normal" for now and be grateful for the progress she HAS made instead of focusing so much on where I want her to be.

NG Tube Dilemma

Tonight Audrey pulled out her NG tube for the third time in the past 10 days or so. She doesn't pull it out intentionally but rather steps on it while crawling around. Since she gets tube fed three times a day and each feeding takes about an hour, that is a lot of time to expect a 16 month old to stay still! I try tv, reading, playing with various toys, but she inevitably wants to crawl around and she's so fast I can't always pull the tube out of the way. The past few times we had grandma, an ICC nurse, replace it but we are out of tubes now so I would either need to go into Amplatz or have the home health nurse replace it. The thing it, I really don't want to replace it at all.

The main concern right now is not nutrition but hydration. We just talked to the pediatrician on Tuesday at her 15 month well-baby visit about this and since Audrey is past what her weight "should be" according to her previous growth curve, she could even lose a little and be fine. We would prefer for her not to lose any, of course. With her recent kidney surgery, however, if she gets too dehydrated it could really hurt her kidneys and we definitely don't want that! Ryan and I feel like the pediatrician is just trying to cover herself with wanting to tube in right now and admitted that the amount the dietician said Audrey "had to have to prevent dehydration" is a bit much. (40 ounces a day. The equivalent of 5 glasses of water. Some adults don't even drink that much!) She also said Audrey did not look dehydrated at that time and the tube had been out for over half a day at that point. The thing is, when the tube is out Audrey nurses A LOT more and also drinks from her sippy cup. I usually haven't had to pump at all during the times the tube has been out. I guess what it boils down to is I believe that her body still has the ability to regulate hydration and nutrition but the NG tube interferes with that process.

Ever since the stint came out, last Wednesday, her eating progress has really picked up! Almost every time I offer food she is now interested and at least puts it in her mouth. Between surgery and getting the stent out most days she didn't want anything to do with food. Lately she really likes strawberries, cheddar bunny crackers, avocado, and cheese. This gives us a lot of hope that we won't have to see more specialists or consider a G tube! A G tube would go directly into her stomach and requires surgery to place it. We did get considerable pressure to place a G tube when she had kidney surgery, which I understand as they want to do as few surgeries as possible. But it came down to that my intuition said we did not need that and it would just delay progress in getting her to eat on her own.

So for this weekend at least we are leaving the NG tube out. We are going to take each day as it comes and see what happens. We'll be monitoring her hydration and will go in to replace the tube if necessary. We are cautiously hopeful!