Croup – 11/28

Averi has been sick with a runny nose and eyes for a week and a half now. She started getting better several days ago, but when she got worse again and started coughing, sweating, wheezing, and retracting her lungs just trying to breathe, I took her to the pediatrician yesterday morning. The doctor said Averi had an ear infection and bronchiolitis and gave her a breathing treatment. This didn’t help so she sent us to the emergency room.

They did a chest x-ray that showed no pneumonia, took some blood, checked her oxygen saturation, and decided she had croup. She was given a different breathing treatment and a steroid to help with the swelling in her throat and then observed for several hours. We were finally sent home with instructions to come back if her symptoms got worse.

She felt better last night and actually gave us a few smiles but woke up this morning feeling and sounding pretty bad again. She’s thrown-up twice today and keeps arching her back trying to breath. We’ll follow-up with the pediatrician tomorrow but there isn’t a treatment for croup so we just have to wait it out. Sometimes, if it’s not one thing, it’s 50.

Kaili was doing a great job taking care of her sick sister today. She wanted to hold her and give her toys to play with.

Feeding Pump

Last weekend we went to my parents’ house. The night we got there, Dan went to plug in Averi’s feeding pump only to realize that I forgot to pack the power cord. This is a problem, obviously, since it has to recharge every night in order to work and we couldn’t just use a different cord because it’s a 5 volt.

So we called Apria, the company that supplies it, at 11:00 at night and explained the situation. After getting several calls from different people, the branch manager called at about 2:00 in the morning to ask me why we hadn’t called sooner and to tell us that the driver couldn’t come to our house, even though he lives in the same area as us, and we would have to drive an hour to meet her at the office.

Knowing we’d fall asleep at the wheel, we told her that Averi would have to go all night without food and we would come meet her in the morning. The next morning, she called when Dan was 5 minutes late and told us she was just going to leave the cord on the door. I know the problem was my fault but it’s her job to deal with it, without being so rude.

Later in the week, on Thanksgiving, we were over at our friends’ house when her pump stopped working. I called again and we realized that the pump was stripping the tubing so that it couldn’t push the milk through. I felt bad making someone come out on Thanksgiving so we waited until we got home, put a new bag in the pump, and someone brought us a new pump the next day. Unfortunately, the new pump doesn’t have a timer on it like the old one did, so we keep having to prime air out of the tubing. Hey, at least it’s working and they brought it to our house. :)

Elecare

Two weeks after Averi’s surgery and endoscopy, I get a call from the GI doctor. She starts asking me a bunch of questions about how Averi is doing, if she is still on breast milk, what foods I’m still eliminating from my diet, if there is still blood in her poop, blah, blah, blah. She then tells me she got the biopsy results back and Averi has significant inflammation and irritation in her small intestines. Translated, that means some food is still bothering her.

She kept using the significant word and then told me that she wanted to try taking Averi off of breast milk again and putting her on a prescription formula with absolutely no allergens for three weeks. In the mean time I am to continue not eating dairy and soy and just freeze all my milk. I was devastated! The doctor then told me that she would put us in contact with the social worker because the formula is really expensive and insurance won’t cover it at all, and you know when a doctor says it’s expensive, it’s expensive.

Elecare then walked into our lives at $50 out-of-pocket for a can that will last 3 days.

So, Tiffany, if pumping is so hard and time consuming, you can’t eat the foods you like, and you’re currently doing it just to give the milk away because your daughter can’t eat it right now, why are you still doing it? Many people have asked me and even more have not, so I want to explain myself although I do not expect many to understand.

I do not continue to pump because my mom is a lactation consultant and I want to impress her or anyone else. I do it because it is one of the few things that I can give to my daughter. I can’t give her the comfort of eating while cuddled in someone’s arms, or even the comfort of eating at all. I can’t give her the ability to breathe better or make her reflux go away. I can’t ease her pain, or erase the scar on her chest, or stop milk from going into her lungs, or take the irritating tube out of her stomach. I can’t make her right ear hear or make her reach her milestones at the same time other kids her age do.

But I CAN provide her with the sacrifice of my time, energy, and talents. I can also give her milk with antibodies and nutrients to help aid her little body that has already endured so much. It may seem silly but it is a special gift that only I can give her, and I do it because I love her.

Surgery Follow-ups – 11/19, 11/24

We recently went back to Cardiology to make sure Averi was healing alright from her VSD repair. Her scar looks great and everything sounded normal with no murmur. They ran an EKG that was normal as well.

The doctor then explained to me that sometimes with the kind of surgery they did the heart can get a weak spot or another little whole. He said he didn’t hear anything but that he wants Averi to come back in 6 months for a sedated echo to make sure that everything is working exactly how it is supposed to (the sedation is just so that she will hold still so they can get a really good picture).

A few days later we went to ENT to follow-up on her laryngeal cleft repair. He said she looked fine and that her throat should be pretty much healed up by now. He will get back to us after her swallow study to let us know if she can start trying to eat again.

This is Supposed to Help? - 11/17

It’s hard to believe, but Averi is already 6 months old. With this milestone comes another doctor’s visit and a round of immunizations. I took her in on Tuesday and the pediatrician said that considering her situation, everything looked great. Then it was time for her immunizations…

I’m not one of those mom’s that can’t handle watching her child get shots, which is a good thing because Averi has had her fair share of needles being stuck in her. However, there is one immunization that has to be taken orally. Averi has had it twice before and done fine with it, but that was before she had her throat operated on and was told she couldn’t eat for 6-8 weeks.

When I asked him if it was okay for Averi to take it, the doctor said that it couldn’t be given through her J-tube and that it was a small amount of medicine that was really important to get, so the nurse gave it to her. We then spent the next 20 minutes trying to get her to swallow 1 milliliter of liquid.

As she screamed, coughed, choked, gagged, and tried to swallow, the nurse lost all composure. She left to get the doctor twice, repeatedly said “God bless us,” and kept looking to me for comfort. She even told me that in the 22 years she had worked there that had never happened to her before. Had I not been used to Averi behaving that way, although not quite that bad, I would have been in tears by the time I left that office.

Question for self: Isn’t the nurse supposed to tell ME that everything is going to be okay and not to worry?

Adios Amigo - 11/10

I totally forgot to post about Averi going to the Neonatal Clinic last week, which is funny because a lot happened while we were there.

The biggest thing was when I was told that the weaning process was over and Averi was officially done with the apnea monitor. I have to admit that it’s nice having one less thing to lug around and I love being able to put lotion all over Averi without worrying about getting it where her electrodes go. I think I had to write that in hopes of convincing myself that I don’t occasionally worry about her and miss the monitor. =P

In less controversial news, Averi is now a whopping 12 pounds 9 ounces, about the 40th percentile on the DS growth chart (yes, they have their own growth charts). She started at about the 20th percentile so she is chunking up quite nicely. The dietician said she should be growing at a rate of about 15 grams per day and she is currently chubbing at 23 grams per day. That being said, she finally lengthened the time between upping Averi’s feeds for the first time ever.

The nurse practitioner showed some concern that Averi hasn’t had a PT evaluation yet so I will have to ask her Early Intervention Specialist (the free one that comes to the home) about getting one. Finally, Averi got her H1N1 shot.

We’re always there for a long time and I’m so grateful that Kaili is finally 3 so I can drop her off at the Sibling Clubhouse for free and she can play to her hearts content.

The Contraption

Here is the lovely GJ-tube contraption in all its ghetto glory. Let me walk you through this starting at the top left: the G-tube with a medicine port on top that we’re not allowed to use, the balloon port on bottom (used to fill up the balloon inside her stomach with saline so that it stays in) and an opening for the J-tube in the middle; an adaptor for the G-tube since it is made by a different company than the J-tube, it looks yellow because it is filled with bile from her empty stomach and I can open that orange lid on top to occasionally flush it with water; another adaptor with an orange lid that I’m not allowed to touch; some ghetto tape; the J-tube, it’s actually a skinny tube that goes through the G-tube (and all the other adaptors), into her stomach, and down into her intestines; the red lid is the only port I can use to give her milk and meds; the purple tip of the continuous feed tube.

They put all those ports on it and make it just the right length so that her kicking feet can get stuck on it all the time. I know it’s only a matter of time before it gets pulled out and we’re spending several hours in the ER waiting to have it put back in.This is the continuous feed bag that goes everywhere Averi goes. It looks a lot like an IV bag, except that it’s full of breast milk. I think the little pump is pretty cute, of course it would be cuter if it didn’t weigh so much.Medical technology is definitely a blessing and a curse!

One Step Forward, One Step Back - 11/3

Another surgery has come and gone.She has no idea what's coming.

We arrived at the hospital yesterday, dressed our little (if you can describe someone with chub as little) baby in a hospital gown and matching pants, and once again said goodbye at the OR door.

Pre-op cuddles!

The GI doctor was the first to come talk to us. She said the endoscopy went well and that she didn’t see anything that looked out of place or damaged more than would be expected on a baby with a G-tube. She also took several biopsies which would cause some small amounts of blood in Averi’s stomach for several hours.

Next, the audiologist called us. Averi’s ears were cleaned really well and tested for fluid. No fluid was found and they performed another hearing test. As we already knew, her left ear is completely fine. Averi’s right ear, however, didn’t respond to the stimulation at all. Her hearing loss is so bad in that ear that hearing aids won’t help. The ENT told us later that we can do a scan in a couple of years and have the option of using a very unique hearing aid that amplifies the left ear’s hearing to the right side. He also explained that unilateral hearing isn’t going to slow her speech development, she’ll probably sleep on her good ear to drown out noise (she already does), and we won’t really notice it in everyday activities, just when trying to whisper or talk in a loud environment.

Finally, Averi was sent to recovery and Dr. Wiet, the ENT, came to tell us that the laryngeal cleft repair went well. He cut the edges of the two sides, so they would heal to each other, and then stitched them together. He also found that part of her reflux problem is due to the fact that her esophagus never closes all the way at the top of her throat, allowing food to come back up easily. This is something that may need to be repaired later, after she heals and we see how she handles oral feeds.

Right after surgery (not so happy).

Both doctors also realized that Averi’s reflux would irritate and damage her healing throat so they decided to put in a GJ-tube. It is a tube that goes into her stomach through the same hole as her G-tube but then extends past her stomach into the first part of her intestines. This will keep her stomach empty so that nothing can reflux up and do any damage. It was placed this morning and I can already tell that it is going to be a pain. Her Mickey button was taken out and replaced with another peg tube, the kind that sticks straight out from her stomach. This means we are once again limited on what clothes she can wear and there is no medicine port. It is also quite cumbersome because two different companies make the tubes and there is a large adapter piece in the middle of it. It is a smaller tube so it has to be flushed several times a day and when it comes out we have to go to the hospital to have it replaced. Hopefully it will only be a temporary obstacle, lasting only 4-6 weeks.

Her breathing sounded bad when she first got out so they gave her a breathing treatment.

Averi is recovering and cries anytime she swallows, coughs, or cries (it’s a vicious cycle). You can tell when her Tylenol starts to wear off and she is still on an IV but the doctors will be in this afternoon to check on her and we should be returning home by tonight. Imagine that, a one night stay at the hospital!

Day 2: Still really puffy and sore but asleep for a few minutes :)

Sometimes I feel like we are finally moving forward just to find out that, as the ENT doctor told us as he walked in the room after Averi’s surgery, “Well, she has a lot of things going on.” I know that one day this will all just be a memory, but for now we must simply persevere. Thank you for all the prayers you have and will continue to send our way!