Tuesday, September 29, 2009

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!

Saturday, September 19, 2009

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!

Friday, September 18, 2009

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!

Thursday, September 10, 2009

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!

Tuesday, September 8, 2009

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.

Thursday, September 3, 2009

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!

Pre-Admission Testing - 9/1

Pre-admission Testing went really well. It only lasted 4 hours. We were able to talk to a cardiothoracic nurse about Averi’s heart, the anesthesiologist, a research representative, the Nurse Practitioner who gave her a physical, take her vitals, draw some blood (they had to call in the IV team), and get a chest x-ray. Everyone concluded that she is still on for her VSD repair and throat scope tomorrow!

People keep asking me if I’m nervous, and I am a little bit, but I am mostly excited that she is going to be healthier after the surgery. It is hard to watch as your child slowly gets more tired, struggles to breath, and sweats profusely just lying in bed. We are definitely taking a step in the right direction!

ENT...Finally - 8/31

Today we finally went to visit the Ear, Nose, and Throat doctor. I am confused why Averi wasn’t referred to them when she was discharged from the hospital since small sinuses and ear canals are associated with Downs Syndrome and she failed her right ear hearing test. But what do I know? The point is that we got there.

They looked at her ears and said that we just needed to follow-up with audiology to have her hearing retested later. I then explained to them about her possible tracheal malasia (softness in her breathing pipe) and that she makes noises when she breathes and has excessive trouble when she refluxes.

The only way to diagnose this problem for sure was for them to do a scope of her throat. After I explain that she had to be resuscitated twice in the NICU when they tried to put something down her throat, the resident went to get the attending. They decided that since her heart surgery was in two days, they would do the scope then, while she was under anesthesia.
After that appointment we went to visit the Neonatologist. Averi weighed in at a whopping 9 lbs. 7 oz. They said we really need to make sure Averi is stimulated orally or she will refuse food when she gets older. We are now dipping her binky in milk and letting her suck on it while she gets her feeds. They also said they would schedule another swallow study in October so that we could see if she can possibly handle any solids.

Formula - 8/22

Sorry I left everyone hanging for a while after the last post, but I was just making sure everyone got their fair share of laughs. :) We did finally get enough poo collected and after several days of waiting all the tests came back negative. Not so helpful. Since there are no tests to find out if the blood is from a food allergy, we just had to assume that was the problem.

So, after eliminating dairy and eggs from my diet, there was still another food irritating her. Since her surgery was coming up and it wouldn’t happen if she was still bleeding, there was nothing left to do but eliminate all possible allergies. Since it takes two weeks for the offenders to completely leave my breast milk after I stop eating them, and we didn’t have that much time, we had to start Averi on Alimentum, a very expensive allergy-free formula that smells almost as bad as the poo we had been collecting.
Within several days she had healed up. In the mean time, I have started a total elimination diet, eating mostly fruits, veggies, chicken, and rice. Mmmmmm. We will have to reintroduce the milk slowly, but hopefully we will have gotten rid of whatever was making her sick. Don’t worry, I won’t waste your time telling you how upset I am that I am still pumping milk 7 times a day and denying myself any food that tastes good so that my daughter can eat expensive formula that doesn’t have immunities. ;)

Tuesday, September 1, 2009


The other day I had my first “share a bond with another parent of a child with Down Syndrome” moment. People have told me that I would have times when I saw a complete stranger who had a child with Down Syndrome and we would share a silent moment of understanding. I’m not gunna lie, I have been searching for this moment so that I would’t feel so alone in my endeavors. Unfortunately, Averi is usually tucked into her car seat when I am out in public, or sleeping, which makes it had to tell she has Downs. Well, it finally happened!
Our whole family was shopping when I turned around and saw a man standing right behind Dan holding his daughter. At first I thought it was someone I knew and said, “Hey!” Then it hit me that I didn’t know the guy. And then it finally hit me that his daughter had Downs. I’m a little slow sometimes.

We then had the pleasure of meeting Emily, their three year old daughter. She was adorable! She kept pointing to her shirt and saying, “Elmo!” It was interesting to compare her to Kaili (who just turned three). There will always be a place in my heart that is sad for Averi and the fact that she won’t always have what other kids her age have. But I know that her personality more than makes up for it, and yes she already has a wonderful spirit about her.

Kaili had so much fun playing with her. It was comforting to realize that Kaili’s innocence kept her from being afraid or judgmental. To her, this was just another friend.Just like us, they didn’t know that Emily had Down Syndrome before she was born. The mom kept telling me how Emily always brightens her day. If she is ever feeling down she just has to play with Emily and everything feels better. She then proceeded to tell me that when Averi gets older I am going to want “10 of them.”

I’m sure this family has no idea the impact they had on me, but I am so grateful. It makes me look forward to the rest of our lives together!