Fat Baby – 12/22

On Tuesday we actually went in to see GI. Dr. Punati said that we can start weaning Averi off of the 24 hour feed. Every couple if days we will increase her feed rate so that we can lower the number of hours the pump is turned on. The goal for right now is to have two 4 hour periods a day where she isn’t getting anything pumped into her stomach so that she will learn to be hungry and hopefully be more interested in oral feeding. She also said that there is nothing wrong with skipping bottle feeding if Averi can’t figure out how to suck. When she starts taking more by mouth we will decrease the amount of milk we put in the pump.

I have to keep reminding myself that this is slow and long process because I want her to be eating and rid of this G-Tube…baby step, baby steps.

We also visited the neonatal clinic where I brought up my concern about Averi’s weight gain. She is a chunk. They said that since we are no longer increasing her feeds, she should maintain – whatever that means. It’s a good thing rolls look really cute on babies and she has really kissable cheeks!

Apparently they like kids to stay at the 50th percentile, even when her family is small and her height is in the 20th percentile. ‘Don’t worry, she’ll grow into her weight.’ Am I the only one that sees something wrong with this picture? Dan and I have decided to take this into our own hands and decreased her feed last week…mwahahaha!
I love this picture. It seems to scream, “Hey mom, get that big black thing out of my face!”

Hey Mickey You’re so Fine – 12/11

After waiting patiently for 3 days, GI finally called to follow up. It was a wonderful phone call.

First, she told me that Averi could be switched off of the Elecare and back onto breast milk. Secondly she said that her throat is healed so we could take the J-Tube out and replace the Mickey Button. Thirdly, the swallow study went well (duh, I was there) and we could start giving her 10 ml of water in a bottle every day until we met with an Occupational Therapist (OT) which she would make a referral for. I was so excited!

That night Dan decided to make a video of Averi having her first bottle. In case you are wondering, no, I will not be posting that video. She chewed on the nipple (thank goodness I didn’t try breastfeeding right away), gagged, spit, blew raspberries…oh, and swallowed 4 mls. Notice I didn’t list suck. It is definitely going to be a process.
A few days later, after playing phone tag with just about every department in the hospital, I found out that, if I was comfortable with it, I could just take out the J-Tube at home and put the Mickey Button back in. I decided to wait until Dan came home, just in case something went wrong, and he again took a video that I will not be posting. The tube had a ridge around the end of it, to prevent it from coming out accidentally, which made for some irritation, bleeding, and screaming when it was removed. Her stoma was sore for several days but it is finally starting to look better. Did I ever mention how much I LOVE the Mickey?

We then did some more waiting and went in on Monday the 21st for an OT evaluation. She said that right now we need to work on sucking a pacifier so that Averi can get used to having something in the back of her mouth (she has a crazy gag reflex) before she can try to suck-swallow. We can also dip her pacifier in milk or put rice cereal on chew toys so that she will taste it and be motivated to put things in her mouth. Once the evaluation is put into the system we will start going to OT once a week.

Video Swallow Study – 12/8

Averi has now had 3 video swallow studies done. Every time she has one it amazes me how much we can do with modern technology. Basically she is fed barium and a continuous x-ray is taken so that the barium can be followed as it passes through her system. It is so cool.

Since I haven’t ever posted about them before I thought I’d share all 3:

5/13
Averi was initially transferred to Children’s because of choking and coughing when she tried to eat. It was thought that she had a tracheoesophageal fistula (TEF) type H, which is basically a connection between the trachea and esophagus. This is bad because any time you swallow some of it would spill into the airway.

At the time she was only one and a half weeks old and only swallowed a few times but the TEF was ruled out. She looked so tiny and helpless strapped into that chair.


9/9
During Averi’s VSD repair, the ENT did a bronchoscopy and found her laryngeal cleft (a split between the larynx and esophagus). It is similar to the TEF but at the top of the esophagus instead of in the middle.

Another swallow study was done to see if she was aspirating (getting fluid in her lungs) while trying to eat. She was aspirating, even with all the different thicknesses, and we were told to stop all oral feeding.This time my mom got a short video. I always have to watch it a couple of times, but right at the end you can see the doctor point out where some of the liquid is going the wrong way (if you can see anything in this tiny little screen).

12/8
Now that the laryngeal cleft has been repaired and Averi’s throat has healed, another study was done to see if the aspirating had stopped and if she could handle trying to drink and eat. Is it just me or is that blue chair shrinking?

She was really uncoordinated and didn’t swallow consecutively but this is sort of what swallowing is supposed to look like. Try to tell me that isn’t amazing.

She also got to try solids for the first time. Granted, this isn’t how every mother envisions her child’s first bites, but the barium rice cereal made for some fun pictures anyways. She looked like she got into some white lipstick.

She didn’t aspirate and didn’t even need the milk to be thickened so we were told that the doctor would contact us about introducing oral feeds again. What, are we actually taking a step forward?

HMG: The Wedge – 12/8

Now that she is over 7 months old, Averi is learning to do some fun new things. We recently got the highchair out and she loves sitting up and playing with us in the kitchen and during meals.

She has also finally learned to ROLL OVER from her back to her stomach. It doesn’t happen all the time yet, but she is definitely getting there. She started by getting everything over except for her shoulder.

Then, the other day, I heard her crying and when I went to check on her I found her lying on her stomach upset that her arm was stuck underneath her. :)

It just recently hit me that Averi is going to be developmentally delayed. Obviously I already knew this, but seeing it happen is completely different. During our last Help Me Grow session we were told several things that Averi needs to be working on.

Her legs flop out because of low muscle tone so whenever she is sitting in a highchair or car seat we put blankets on either side of her legs to help turn them in and keep them together.

Averi arches back when put in a sitting position, again because of her low muscle tone (she tries to compensate for having no muscle to hold her up by locking every muscle in her body), so we are propping her up with pillows all the way around her and teaching her to lean forward by bribing her with toys.

We’re still working on imitating sounds with her because she hasn’t started making consonant sounds yet like dada or baba. She is becoming quite vocal, however, and will let you know when she wants some attention.

The thing that Susan was really worried about was Averi’s reaction to tummy time. When put on her stomach she would just leave her face down and suck on her hands, not trying to lift head much or use her arms at all. Her legs are pretty strong but she isn’t using her arms as much. The solution came a few days later after Susan talked to the PT and returned with a big wedge.

The wedge holds Averi at a 30 degree angle so that she doesn’t have to work so hard against gravity to push up onto her forearms.The difference was like night and day. I couldn’t believe it. Now she will sit up on her forearms and even smile for a good 10 minutes of tummy time.
As she gets stronger we can slowly raise the bottom end of the wedge until she is lying horizontally.

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!

Beauty Queen

Sometimes I like to pretend I’m a photographer – it’s just too much fun and she's just too beautiful!

There’s a First Time for Everything – 10/16

Last Friday, Averi experienced her first trip to the ER. I’m impressed she made it over 5 months without going. At about 5:30 pm she started refluxing so we vented her G-tube to let out some of the air she had swallowed. That’s when we saw a bright red, pea-sized blood clot come out. We dumped it out and left it vented. After two more bright red clots came out (we’ve never seen that many at once or had them be so fresh before) we decided to call the doctor’s office.

Of course they close early on Fridays so I waited on hold for 25 minutes, had my phone hang up on me, waited another 20 minutes, and finally talked to the triage nurse who told us that we needed to bring Averi in. I was sick so I stayed home with Kaili. (Another first, Dan had never been out with Averi by himself before – not that he couldn’t handle it).

Well, we all know how ERs work so I’ll keep this short - some sick two-year-old in the waiting area literally crawled into Averi’s car seat repeatedly while Dan pulled her out and her parent was nowhere to be found, Averi was taken to a room, vitals were taken, Averi was sent to radiology to make sure her tube was placed correctly, blood was taken, it was decided that she was fine and it would be pursued in 2 ½ weeks during her endoscopy, and they arrived back home at 11:30 pm.

Let's hope we don't need to return any time soon.

Good-bye Monitor? - 10/6

Last week we went to the Neonatology Clinic for a check-up. Nothing too exciting happened, which is why I didn’t post about it right away, but I needed an excuse to use this really cute picture of Averi having a moment with her giraffe. (It was lying on the ground next to her and she totally rolled over on her side and stared it in the face for like 15 minutes straight.)
Averi’s monitor has been having brady (low heart rate) alarms lately when she is sleeping. It used to only go off when she was refluxing and couldn’t breathe. The neonatology clinic downloads her monitor so they looked at the recording and said it is probably just because she is getting bigger and has a lower resting heart rate.

She then told me that we probably don’t need the monitor anymore. I was stuck between relief of not having to carry it around anymore and paranoia that she would start refluxing during the night and we would not hear her. Just as I was accepting it, she came back and said that Averi has to keep the monitor until after her surgery but we need to start weaning ourselves off of it.

Now it only has to be on at night, while riding in the car, and when she is unattended. It’s nice not having it on all the time and carrying it around, especially when we go out, but I can still sleep at night.

As far as the rest of the appointment, she is growing like crazy, weighing in at 10 pounds 12 ounces (finally double her birth weight at 5 months), her muscle tone is great, the dietician gave us an updated feeding advancement, she’s being referred for OT and PT, and we’ll go back after the surgery.

Surgery Date

They finally called me this week about scheduling Averi’s surgery for her laryngeal cleft repair. The big day is going to be Tuesday, November 3. Here’s to more waiting! :)

Raspberries

Averi’s latest trick is blowing raspberries. She can often be heard lying in her bed happily blowing spit bubbles. I managed to get a short video of it, which was tricky because she doesn’t do it on demand. I love it!

Tubby Time

Baths are hard to come by for Averi because it is such a long process. Recently, however, she has really started to enjoy her tubby time so I may have to sacrifice and start giving her baths more often.She found her toes for the first time during her last bath and I couldn’t get her to look at anything else. It was super cute! I have a video but I can't get it to upload so you'll just have to take my word for it. ;)

Big Girl

Sometimes I feel like Averi is growing up so fast and I’m so busy taking care of her medical needs that I don’t have time to sit and enjoy it. A lot of big steps have happened in her life lately!

I came home from a church meeting a week ago and Dan “surprised” me by moving all of Averi’s stuff out of our room and into the nursery. I thought it was easier to get up with her during the night when she was just right beside the bed and I knew I could hear any alarms going off but he thought she was getting too big for the bassinet. Now she looks tiny in her big crib! It is nice having more space in our room again but I miss being able to just roll over and check on her. (We’ve also been able to start using gowns since her G-tube doesn’t stick straight out anymore. I love gowns, they’re so dang cute!)

Averi has also strengthened her neck muscles enough that she can hold her head up for short periods of time. This means we have started sitting her in her Bumbo chair. She loves being able to see what’s going on around her. It also gives me an extra hand when we work on reaching for and grasping objects. This was her first time in the Bumbo, I giggle every time I see this picture!Now that her G-tube site is feeling better and she is recovering from her heart surgery, she is a much happier baby! The other night she would not stop smiling at me. I made Dan take like 50 pictures. She makes some of the best faces, my favorite being her “grandpa” face. She has even started trying to talk to us and imitates a few sounds.

She has even started laughing. I can’t get enough of it, even if it is wimpy. When she smiles, her whole face lights up. It’s contagious!

A Step in the Right Direction – 9/24

It only took me a week to get this all written up but this was another long day of appointments (as you can tell by the length of this post)! Surprisingly, it was a very productive and encouraging day. Here’s how Averi felt about the day’s events:
ENT
First, we drove all the way to Dublin (an office 45 min away because there weren’t any appointments available at the hospital) for an ENT follow-up. We met with Dr. Wiet, the doctor that did the scope. My goal was to not leave this appointment without a date for Averi’s surgery (to sew up the laryngeal cleft). He said that her chest incision looked great and he would have his secretary call us to set a date. Yipee!

I also asked him about her failed hearing test on her right ear. He sent me to audiology next door to test for fluid. I was worried that this would take too long and we wouldn’t make it to the next appointment at the hospital (another 30 min drive) but the wait wasn’t too long. The audiologist blew air into her ears to test if her eardrums responded and both ears looked good, meaning that there is no fluid behind them. During her last test, there was fluid in her right ear, which could be a reason for a failed hearing test.

Dr. Wiet said that he wanted to retest her hearing and that they could do it during the surgery’s anesthesia, when they know she will be asleep. This was great news because a hearing test consists of depriving your child of sleep so that they will sleep quietly for the 45 minute test where they have sponges shoved in their ears. Now we can kill two birds with one stone.

GI
We then drove to the hospital for our first GI appointment, you know, the referral appointment that was made about her pooping blood the first week of August. My goal for this appointment was to get some answers about her G-tube. Since surgery put in her G-tube, they have to do all the follow-up. I have talked to several doctors about getting a referral for GI to follow her G-tube and it can’t happen. The GI doctor that visited her in the hospital even said he couldn’t answer any questions.

I explained to Dr. Punati that Averi started pooping blood, along with diarrhea and crankiness, stopped when she was put on Alimentum, and hasn’t had anymore since I went on my total elimination diet (no dairy, eggs, soy, wheat, nuts, or shellfish). She said I could continue adding foods back in every two weeks (I already added wheat this week) until we figure out what I can’t eat.

She also said that the blood could be from trauma to her stomach from the G-tube (now really?). Everyone in surgery told me that blood from that high up her GI tract would be black but she said that Averi’s system is so small that it could still be bright red when it got to her bowels. So, she is going to do a scope of Averi’s stomach, also while she is already out for the surgery, to see her tract from the inside and find any damage. Finally! Now we’re killing all kinds of birds with that stone. :)

She also actually looked at Averi’s stoma, suggested I put Maalox around the site to help keep the acid from irritating the skin, told me how I could clean the inside of her tube (with Sprite), and changed her reflux medicine from Prevacid to an even stronger medicine called Zegerid. She answered all my questions and never once mentioned that it wasn’t her G-tube. Halleluiah!

Surgery
The day was going well and we had yet to be late, but we still had our surgery appointment. I was not leaving there until someone actually took out her G-tube and looked at the red tissue bulging from it, even if it was just to tell me that it was in fact granulated tissue (beefy looking scar tissue that starts to build up in response to trauma).

We went in and Dee, Dr. Teich’s nurse that knows us by name because I have called her so many times, looked at me and said she was feeling rebellious and was going to measure Averi for a Mickey button. Wow! Every time we go there they always tell us that she’ll get a button “next time;” well it finally happened.

This has made all the difference! The Mickey Button is like a flip top for her stomach. It just sticks out a little bit and can be closed so that she can wear regular clothes that don’t open down the front for the tube to stick out.The tube for her continuous feed is bent and rotates 360 degrees, instead of having a tube sticking straight out that gets pulled on and irritates her skin. It is measured for the thickness of her stomach (the second smallest size they make) so it fits a lot better and won’t leak so much. There is even a medicine port on the side so we don’t have to stop her feed every time she needs her meds. It’s the small things in life that make you happy! :)Overall it was a great day and it looks like things are starting to move in the right direction!

Help Me Grow - 9/23

Averi has been approved for a government funded Early Intervention program called Help Me Grow. It is an awesome program that helps her in all areas of development up until age three (and it doesn’t hurt that it’s free and they come to the house). At least once a month her Early Intervention Specialist, Susan, comes and “plays” with us and gives us ideas of things we can work on with Averi to help her reach her next milestone.

This last month we have been working on tracking objects. Averi has become quite the pro and will now track not only with her eyes but actually turn her head 180 degrees side to side and also up and down. Recently Susan has been showing us ways we can do tummy time without putting pressure on Averi’s G-tube. This consists of drapping her chest over things like your leg, a rolled up blanket, or your chest, so that there is a space where her G-tube comes out.

I never realized how important tummy time was until she explained that it is the basis for holding up her head and learning the crawl. Babies with G-tubes can get behind quickly if they do not get used to the feeling of being on their tummy. I’m having a hard time with this one because any time Averi is on her stomach her G-tube leaks to the point of soaking her clothes.

When Susan was here on the 14th, I asked her if we should be doing any oral stimulation for Averi since she isn’t eating. I have been told that learning to suck and eat is the basis for talking. She came back the next week with a physical therapist and an occupational therapist. They showed me ways to stimulate her mouth like getting her to suck on a pacifier dipped in milk, stretching her mouth so she has to pull against it, and getting her to imitate me talking to her.

They also have a long chart with all the milestones listed on it that a child should reach by age three. Susan always checks to see how Averi has improved and marks it down. Currently, Averi is functioning at the level of a 4-month-old. That’s exciting because it’s not even adjusted for her being a month early. People are always comenting about how strong she is. I have nothing to compare her to, but Susan says she has great muscle tone for having DS. It is so wonderful to have all this support helping Averi Grow!

G-Tube Drama - 9/16

Averi’s crazy G-tube is more hassle than it’s worth! It comes out fairly often, it’s red and irritated, and the only reason we keep it is the small fact that it is the only way to feed her (details, details). Here is a small glimpse of what we deal with on a daily basis:

On Wednesday I decided to give Averi a bath. I know that’s not normally a big decision, but it’s quite a process with her, especially when only one adult is home. The surgeon told us to take out her G-tube every once in a while, for 30 minutes, to let the hole close a little. (It’s a lot like an earring hole, so it will completely close if left empty for several hours.) I took out the G-tube and then taped gauze over the hole so her stomach contents wouldn’t run out all over the place.

The bath went well and Averi continued to be happy as I started to put all of her accessories back on. Then it was time for the G-tube, which we save for last because it is always accompanied with hysterical screaming. I put it back in, inflated the balloon, applied her 3 different topical ointments, put on the foam gauze, taped it all down, and then opened the tube and stuck a syringe in it to let all of the air out (her version of burping).

Nothing happened. This is a bad sign because it means that the tube is not in her stomach and I have inflated the balloon somewhere inside her abdominal cavity. No wonder she’s screaming so hard there’s no sound coming out. I even tried flushing the tube with water to make sure nothing was blocking it and the water squirted out the side of the syringe.

I pull all the tape off (which is always fun because her skin is so sensitive and often bleeds), take off the gauze, deflate the balloon, and take out the G-tube. This time when I try to insert the tube, there is resistance and bright red tissue is bulging out of the hole. I decide to test it before taping everything down and still nothing happens.

Once more, I take it all out and try to reinsert it. Afraid that the hole might have closed too much or I can’t find the hole into her stomach, I decided that if this doesn’t work I will have to take her to the emergency room. As blood starts to run down her stomach, I put the tube in one more time and tape it all up. By now, Kaili, my helper, has thrown away my tape, put the clean gauze around the hand sanitizer dispenser, and dropped the feeding tube on the floor. (This picture was taken before the drama started.)

Forty-five minutes after I first put the G-tube in, I cross my fingers and start her continuous feed in hopes that it will do something. I then cradle Averi to calm her down. Completely exhausted, she falls asleep quickly. After laying her down, I check the tube and the milk still isn’t going down. I try one last time to flush it with water and, miraculously, it goes down. Relieved, I restart the continuous feed and begin cleaning up.

I think I will wait for Dan to come home before trying that stunt again!

Latest Post

Sometimes posts don’t get done in order, mostly because I’m lazy and don’t have anything going on in my life right now. ;) So, to keep you up to date, I’ve listed the latest posts over on the right-hand side. The newest post is listed at the top and each title is linked to the post so you don’t have to go searching for it down the page. This way you’ll be able to read all of the posts and won’t miss out on a single detail about Averi. :) I hope you’re enjoying the ride!

Home Again - 9/10

This morning the resident stopped in to inform us that Averi was finally ready to go home. It was a pleasant surprise.

Heart-wise, her recovery was great. Twenty-four hours after the surgery, the central line, arterial line, drainage tube, and catheter had been removed, and Averi was moved to her own room in the step-down unit. Her poor sensitive skin looked like it had been through a battle and lost.

Averi was swollen for a few days and very lethargic from all the pain medications. She looked so small in her big crib (she sleeps in a bassinet at home).As she started to feel better and look more like the Averi we all know and love, we were able to hold her. Kaili is always so intrigued by all the stuff stuck on her baby sister.
I’m pretty excited that Averi has become a thumb sucker, but it was problem when they decided to put the IV in her thumb. We kept having to cover her hand with a blanket because she scratched her face up trying to get to her thumb. I just love those big eyes.We were really impressed with Children’s during Averi’s NICU stay so it was frustrating that several problems arose during this stay. First there was an issue with her G-tube. It came out one night and started bleeding. As it turned out, someone at the hospital had overfilled her saline balloon. (There is a small balloon on the end of the tube that is inflated, after the tube is inserted into her stomach, to keep it from coming out.) Her’s is usually filled to 3 cc, the max is clearly labeled as 5 cc, and it was filled up to 7 cc. Being so full it caused a lot of damage coming out and no one seemed to know why it had been messed with in the first place.

Another thing that happened involved her IV. After a few days it started to stink. I finally convinced the nurse to change the bloody tape on Monday, 5 days after it had been put in. She ended up taking out the whole IV because the plastic piece had rubbed an open wound. They swabbed it and it came back positive for Staph. So now we are treating that and keeping it covered, and all Averi wants is her thumb back.At least she has another thumb to suck, even if the left one isn’t her favorite. She often puts herself to sleep like this. I love it!Yesterday was a week from her surgery so they took off all the steri-strips and gauze. Her incision is a lot longer than I thought it would be but it is healing nicely. The big scab at the bottom is where the drainage tube was.Cardiology said we could have gone home a couple of days ago but we have been trying to fix her G-tube issues. Yesterday morning they did another video swallow study, where they x-ray her as she drinks different consistencies of barium. All of the thicknesses showed aspiration (breathing in the fluid), which is probably due to the laryngeal cleft. She is also refluxing very badly and aspirating on that as well. To help fix this, GI put her on a 24 hour continuous feed. Now she is attached to the apnea monitor and a food pump. I’m really looking forward to grocery shopping. :)

Kaili was excited to ride out to the car in the wagon with Averi. We are once again excited to all be together again. Hopefully there will only have to be one more hospital stay!

Now You Tell Me - 9/2

At the beginning of Averi’s heart surgery, Dr. Wiet, the ENT doctor, performed a scope of her voicebox while she was awake and a bronchoscopy after being put under anesthesia. She did fine having something in her throat, which I was worried about, and he was able to get some really cool pictures.
Apparently Averi has a laryngeal cleft, a split in the wall just under her voicebox that separates her esophagus and the top of her wind pipe (larynx). When she refluxes, this split opens and allows the food that comes up to enter her breathing tube, causing her to aspirate. The light goes on, this is why she can’t eat. Now why are we just finding this out when she is 4 months old?

This is something that will take another surgery to correct. Unfortunately, we have to wait until she heals from her open heart surgery. She has a step 1 or step 2 laryngeal cleft (out of 4), so they should be able to fix it endoscopically. If not, they will have to make an incision in her neck. There are normal bacterial that live on the voicebox that could be on the neck incision that would cause lots of problems if they migrated down to her chest incision. So we have to wait at least a month for her chest to heal before they can do a video swallow study and decide for sure when the surgery will take place.

I swear her G-tube will be the end of me; we will never get rid of it. At least now we know what the problem is.

She's Got Heart - 9/2

The big day has come and gone! We arrived at the hospital at 6:30 a.m. and changed Averi into the cutest hospital gown ever. After talking to the anesthesiologist, ENT doctor, and heart surgeon, we walked her to the OR at 8:00, gave her kisses, and had to walk away.After only 5 hours of surgery, Averi was brought to the Cardiac ICU at 1:00p.m. Dr. Galantowicz, the heart surgeon, came to tell us that, drum roll please…everything went great! He had to repair her Ventricular Septal Defect (VSD), a very large hole between the lower chambers in her heart. He was even impressed by how big the hole was. He also tied off her Patent Ductus Arteriosus (PDA), a vessel on the heart that didn’t close at birth, and repaired a very small Atrial Septal Defect (ASD), a hole between the upper chambers of her heart that just needed one stitch.

She was placed on a heart lung bypass machine for the surgery but came off of it very quickly with normal heart rhythms. They didn’t even have to place temporary pacemaker wires, which would have been needed if any abnormal rhythms were detected.
When we saw her in the CICU she had a drainage tube coming out of her chest (to drain junk from around her heart and lungs), an arterial line in her groin, a central line in her neck, an IV in her thumb, several holes in her arms and legs where they tried to place IV’s and failed, a catheter, and a very large bandage running down her chest. She was very agitated at first, causing a lot of blood to drain out, and had to be given a little more blood. She never really settled for very long before crying again, except when the nurse pushed the “feel good” button.
By the end of the day, Averi finally started to calm down a little and the drainage slowed as well. We are continually amazed by the medical advancements that have given our daughter life. Thank you for all your thoughts and prayers!