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.