This Sucks!

Prepare yourself because today’s Nutrition visit was one of the most frustrating appointments we have ever had…EVER! (I will insert some happy pictures and lists for the sake of sanity.) We were there over 2 hours and I left feeling like we had just gone backwards more than 2 months.

To start the visit off, I caught Andala, the nutritionist, up on everything I have been working on with Averi:
• The nighttime continuous feed is finally gone! I made this goal after waking up the day after Averi’s birthday to find the cord wrapped around her neck FOUR times, tight enough to leave red markings for several days. It was a long process that involved adding a feed and slowly increasing the amount of each feed, but it finally happened.
• Averi isn’t really eating much food orally because I have been so adamant about increasing her feeds to loose the continuous feed and her tummy is constantly being stretched to its max.
• My last tub of breastmilk will be used by the end of the day today (sad, I know) so we need to decide on what will replace it.

She decided that we cannot use just whole milk since the majority of her nutrition is coming from milk right now and maybe we should start using Pediasure. I was excited to try something with more flavor, since we have to prune all of Averi’s milk, until I realized that Pediasure has soy in it. Andala assured me that soy oil wouldn’t affect her (it has in the past) and continued to give me instructions on how to dilute it to the correct calories per ounce.

Then she pulled up Averi’s growth chart…and everything stopped. Apparently Averi’s growth has plateaued long enough to cause alarm and she immediately left to ask the doctor to come in and examine her {eyes rolling}.

Note: Here is my take on things – Yes her growth hasn’t really increased much in the last several months but that is only alarming if you only look at the last several months. She started out at 25% and she is currently at 25%. Do you remember the time that her skin was so tight she couldn’t move? Do you not see my 3 year old sitting here who has never been on a growth chart ever? I don’t make big kids. Let’s just focus on her following this curve instead of putting her back where she was miserable.

Then the doctor came in and informed me that we can no longer continue coming to the Neonatal Clinic, for nutrition care or otherwise, because we are being seen at the DS Clinic (which a big joke and not really helpful at all). Teresa, the NP there, has been hiding us for 7 months because she likes us, but we have now been found and cannot return. Instead we will have to receive nutritional care at the GI Clinic, so they will be calling Dr. Punati, the GI doctor, to see how she wants to handle plumping Averi up.

This is when my blood really started to boil. The doctor returned with these messages from GI:
• Averi cannot get advice from the GI nutritionist until she has had an appointment with both the GI doctor and the GI nutritionist present.
• STOP all dairy!!! Averi has a dairy protein intolerance.
• Start feeding her the hypoallergenic Elecare – you remember, the $50 for 3 days formula
• Add in another whole feed each day

What? This is where I first learn that milk allergy and dairy protein intolerance are two different things, even though my daughter has had it for almost a year now. Come to find out, a protein intolerance is much more serious, is less likely to go away, and presents itself by tearing up the gut from the inside out.

Why is this not written in bold at the top of her file? All of the doctors that we see are through the same hospital and can access all her files. Why has no one taken note of this? Why have we been feeding her dairy for the last month?

Apparently GI was going to do another scope and biopsy soon to make sure that her gut had healed from when she was pooping mucusy blood and then they would have instructed us on what to do about adding dairy back in to her diet. Now we have to wait several more months for the dairy to leave her system and allow her to heal again before anything can progress further. Nice!

Also, when exactly would you like me to add in this extra feed since there is not more time in her waking hours and I refuse to plug her in at night? Oh, you want me to feed her every 3 hours instead of every 4? I’m really looking forward to it.

Don’t worry, I’m still not done. I then decide to have the doctor and NP look at Averi’s rash that has not gone away since starting her on dairy. Neither one of them had any idea what it is. They think it might look like a rash from a virus like strep, and told me to stop using anything scented on her skin just in case. Mmmm, now she can smell like formula, because the smell oozes out of her glands, and I can’t even put lotion on her to cover it up.

An appointment was set up for us to see GI in a week and a half, they told me to call if we had any problems (um, were you at the same appointment I was?), and I practically ran out the door.