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!

ihatepumpingihatepumpingihatepumping

In case you couldn't tell from the title of this post, I hate pumping. I'm only doing it 3-4 times a day and I don't have to care for a young baby on top of it, but I still hate it. For one thing, it's time consuming, taking anywhere from 15-25 minutes per session and I have a hyper toddler trying to 'help' me or crawl all over me at the same time. I can't always distract her with other toys and she always wants to be by mommy (of course, who wouldn't want to be by me all day?)

Another thing is that it doesn't feel nearly the same as a baby directly nursing. I don't get that awesome oxytocin rush, or at least not as much, and it just feels uncomfortable sometimes. Babies are so much more effective at removing milk and I will even be able to hand express an ounce or so after I've pumped. My pump probably sucks; it's not a hospital grade one, just a $40 ameda from craigslist (yes I know, used pumps and all). I have to hold a flange with each hand and I'm too impatient and bored to sit still for 20 minutes watching milk spray.

Thankfully, The past few days she has been nursing more and so I've needed to pump less! But I still long for the day when I won't have to keep track of so many things: her medications, how much I'm pumping, how much she's eating/being tube fed, her weight, appointments, researching, etc. It's a bit mind-boggling for sure.

So kudos to the exclusive pumpers out there! It's a lot of work and not much fun. But all worth it in the end, of course. I would go through this hassle ten times over if it meant she could get the best food of all: her mommy's milk

Delizioso!

We had dinner with the grandparents tonight at Buca's, and as you can see by the picture Audrey really enjoyed it! She sat on grandma's lap the whole time and tried salad, onions, bread, and cheese ravioli! She decided to smash it all over her face as well with a random bout of peek-a-boo :)

One huge benefit of having a ICU pediatric nurse for a mother-in-law is that she can change Audrey's NG tube! The other times we had it replaced Audrey had pulled it out at super inconvenient times and so we went to the Children's Amplatz ER where they must not be used to placing feeding tubes all that often. In addition to the annoying and time consuming paperwork and protocols, they were always very slow while putting the new tube in. This meant Audrey was being held down for a long time (for her, 10 minutes) and she absolutely detests being restrained while having her face messed with. So she would get all worked up, screaming and sweating, and then the nurses couldn't figure out why the tape wouldn't stick to her face. But not this time! Grandma had that bad boy inserted in less than a minute, I quickly taped it down, and we were all done! Plus this way we didn't have any pressure to check the placement with an x-ray (Grandma listened with her stethoscope and was able to draw stomach contents up with a syringe). I'm all for less radiation as she's already had at least 10 x-rays/ultrasounds in the last few months.

After Grandma changed her tube, we went out for dinner and it was marvelous to see her so interested in food! She had been making some progress before the surgery but it's taken her awhile to recover since then and have more than just a momentary attempt at eating. Tonight she interacted with the food for over half an hour!

New Feeding Schedule

We are home and doing well! Audrey has been sleeping more than usual and not eating much, but it's only been 5 days since her surgery so I'm sure she's still recovering. Her activity level is pretty normal though! Crawling around, cruising, and playing like crazy!

Starting today we are switching to day feedings only. This is the schedule the dietician from Gillette suggested: offer food 3 times a day (breakfast, lunch, dinner) and tube feed breastmilk afterwards adjusting the amount as needed depending on how much she ate. 0-25% of 200 calories: 10 oz, 25-50% of 200 calories: 5 oz, 75-100%: 0 oz. Also, tube feed her 7 oz in the early morning and late at night. If she snacks during the day, you can adjust those feedings as needed,

Ryan and I decided that 10 oz at once was a bit much. Plus she's still gaining weight rapidly. We are going to do 1 tbsp of coconut oil plus 5 oz breastmilk (1 tbsp of coconut oil has 120 calories which is about equal to 4 oz of breastmilk). For the late night/early morning feeds we'll probably do around 5 or 6 oz. We'll be monitoring her weight at home with the scale that Fairview Home Infusion (the company renting us the tube feeding supplies) gave us. I really think this is way more than a baby her age needs, so we'll see how she does.

Audrey's daily medications from top to bottom: multivitamin/mineral, periactin (anti-histamine that's used  to increase appetite), prophylactic antibiotic, ditropan (used to prevent bladder spasms), prilosec for reflux, and children's motrin for post-op pain (we alternate with tylenol).

The other exciting news I have to share is that my order of domperidone finally arrived! Domperidone is a drug used for various GI disorders that has a side effect of increasing prolactin which increases milk production. I had been debating for awhile on whether or not to try domperidone, partly because of the cost (about $40 for a 2 week supply), but it's difficult to find enough donor milk and I know there are younger babies out there who need the donor milk more. I tried increasing my supply twice by using various galactagogues (food or supplement that can increase milk supply) but was only able to increase by a few ounces a day. Hopefully the domperidone will work and I won't need to depend on donor milk anymore. Or better yet, she'll start eating more solids!

Hospital Hell

Audrey's surgery went very well and she is recovering great! She had a little trouble with pain while in immediate recovery but is on a good schedule of pain medications now and is comfortable. She has a stint (small tube attached to the ureter to help drain urine) that will stay in for a few weeks and a foley catheter that will be removed before we go home. Today she has been on a wagon ride around the floor and has drank a few ounces of breastmilk. We're very hopeful she can go home tomorrow!

Since Ryan and I both have a hatred of hospitals, and I like venting (aka complaining), here's a short list of things that have been unsatisfactory so far:

1) We were unable to get a room before her surgery despite knowing she would stay a few nights. So we had to drag all our stuff to the waiting room, drag it into the small post operative recovery room, and then drag it up to her hospital room. Pretty disruptive and annoying when we're trying to focus on Audrey.

2) Speaking of the post operative experience, the post-op nurse wasn't the greatest. We were stuck in there for almost 2 hours because she couldn't time the transfer right (Audrey was on a narcotic that only lasted 15 minutes and it kept wearing off every time the nurse was 'ready' to move us. So Audrey would get another dose and would have to stay another 15 minutes before we could think about transferring to our room. Since it was a narcotic they needed to monitor her in the post-op room until it wore off). Then when we finally transferred she kept bumping the crib into walls and doors which made Audrey cry in pain!

3) The nurse for our room last night didn't think the bandage on her surgical site needed changing, even though it was soaked through. Really??

4) There wasn't clear communication to us or the post-op nurses about what she could and couldn't eat or drink after surgery. We were told different things by different nurses and doctors and they kept changing their minds. She ended up being NPO (nothing by mouth) for the rest of the day and night but they said she could have ice chips. (Which is stupid, what 1 year old can eat ice chips safely?)

5) Nurses, doctors, child life specialists, etc. are constantly coming and going. They are all very friendly but verge on the side of being too helpful. All we want is to relax and try to help Audrey rest and the constant activity and "helpfulness" isn't helping!

6) The hospital protocols, fear of liability, and general way of doing things may be productive for them as an institution but it certainly isn't the greatest for individuals. For instance, right now she needs a suppository as the medications have a constipating effect. We've been waiting a few hours for it but it's delayed for some reason. We had many instances of this happen during our first hospital stay. One situation ended in her being woken at 1 am for an ultrasound scan of her arm with a technician who obviously wasn't good at working with children. He couldn't seem to understand why she was crying and wasn't lying still...

I'm remembering why I couldn't wait to escape from this place last December.

The Night Before

We are all set for Audrey's surgery tomorrow. It's scheduled for 12:30 pm and will last about 4 hours, but we have to be at the hospital by 10:30 am. Everything is packed and ready to go for our one over night stay (hopefully only one). Since she'll have stints (tiny tube that allows drainage) for about a month, she had a fun bath tonight and the three of us spent a lot of time together. Ryan is pretty worried about tomorrow but I'm doing okay with it. Since this isn't an optional procedure, unlike say circumcision, I feel at peace with everything. And I'm just desensitized to anything traumatic she has to go through anymore. I still feel bad for her but I'm not anxious and panicked about it like I would have been when she was a little baby or before all this happened. I'm sure the afternoon hours will go by very slowly though, and I'm glad our families will be there to support us.