Ava turns 5 months this week, and the time has felt very surreal – it’s gone by fast and slow. We haven’t left the house much at all in order to avoid germs, the cold weather and because Ava hates the car seat. I tell people I live in the Twilight Zone in combination with Groundhogs Day.

Well, since my last post, Ava and our family have seen some ups and downs …

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Ava at 8 weeks old

At 5 weeks old she had an episode that we thought was a seizure. She was taking a nap in her crib when suddenly her video monitor (which I recommend for any new parents) clicked on and I watched her struggle and flail around like I’d never seen her do before. I immediately went to her crib to see what was going on. When I reached her she was red, wide-eyed with tears, not breathing and foamy bubbles were coming from her mouth. I suctioned her out as best as I could but she continued to struggle to breathe. I called an ambulance. As we approached the hospital, Ava was getting better but still would go into fits of struggled breathing and bubbling from her mouth.  All her vitals were fine.

She began to calm down in the ER. We explained what happened to the ER nurse and told her about WHS. Finally, the ER doctor told us it was a seizure with no room for any other possibilities, (looking back now, I’m positive he Googled WHS before coming into our room and assumed Ava’s “episode” was a seizure) even though I questioned whether or not it was.  He put her on Keppra and sent us on our way with a follow up appointment with a neurologist a month later.

A week later it happened again, but this time I saw it. It began with her throwing up about two hours after a feeding and the thick throw up came out her nose filling her sinuses – poor baby, I can’t imagine that would feel good. She carried on with struggling to breath. We called the ambulance again, but after they listened to her lungs and heart I sent them away knowing other ER visit was not the answer.

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Getting an EEG

After many phone calls and pulling some strings, we finally got her neurology appointment moved up to the following week along with an EEG. Everything came back clear. And after explaining what exactly happened to the neurologist, he confirmed that they were not seizures – what a relief! Ava could be off Keppra (for now). We have a follow up in March.

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Getting an ultrasound of her heart

At the end of December, Ava had a cardiologist appointment to follow up on her ASD. She had an EKG and ultrasound. I knew it was good news when the ultrasound tech scrutinized each pane carefully and finally asked me why Ava had an EKG when she was born. Basically, she could find nothing wrong!  We have one last follow up in June, just to solidify that everything is completely closed up.

Overall, Ava is very healthy. She has one last Synagis shot next month to keep RSV at bay, and (praise the Lord!) she has never been sick.

Our biggest struggle – no surprise here – is feeding. Ava continues to eat expressed breast milk fortified with formula and a little rice cereal. She takes at least 20-30 minutes to eat and getting her to take over 2 oz is a struggle (I plan to stop pumping soon in order to free up some time. We have several months of extra milk to get us by). But the biggest ordeal is her throwing up! It’s exasperating to spend so much time feeding her and then see it all come back up again. There are some days I feel like pulling out my hair.

The annoying thing is that she has periods of good days and then periods of bad days. I know better now to not get my hopes up when she has days with minimal
throwing up, because she always goes back to having a period of constant throwing up.

The good news is that despite periods of a lot of throwing up, she’s gaining weight. She is currently at 8 lb 15 oz. I can’t imagine what she would weigh if she got all the calories that were going in! We are in the process of booking a GI appointment.

Developmentally, we are seeing delays. She still cannot hold up her head or push with her arms during tummy time, although she is getting stronger. Her hand grasp is very weak and she can only hold very light items and for only a couple of seconds before letting go. Her eyes focus on things but tracking is inconsistent. Soon after the three month mark she began to smile – yea! And a couple weeks later she began cooing and having “baby conversations” – yea again! Ava is usually a very calm and happy baby. She only cries when she’s needs to communicate frustration or discomfort.  She really enjoys her play mat and the attention of others. She even likes diaper changes! Ava is a constant mover! She wiggles, kicks and swings her arms. She’s plays with her hands and brings them to her mouth now too.

We are happy to see her personality bloom and looking forward to reaching more milestones.

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5 Responses to Ava Update

  1. Anitra says:

    Ava is gorgeous!! That smile must light up your entire world. Beautiful. The ASD news is amazing, wow. My Elsa is 8 weeks, and I feel you on the feeding frustrations. Hang in there!

  2. Antonella (Evelina's Mom) says:

    Ava is so cute! I’m glad she is doing so well. I would just like to share that my daughter Evelina is also getting EBM and I WAS fortifying it with formula but as months passed the throwing up was just non-stop. We found out she has a cow’s milk protein allergy and that was causing a lot of the problems. When you have a dairy allergy your body can produce more mucus and you can have trouble breathing. I am no doctor but I’m wondering if Ava is having a similar issue. Just some food for thought.

  3. KevinO says:

    Great update on Ava! The feeding issues sound so familiar. Kendall, and many others, had the same struggles. It is by far the most challenging part that we faced during the first 3 years of Kendall’s life. After 4 years, she is showing signs of wanting to eat and try new foods. Ava’s story sounds so much like Kendall’s in every way. She’s so cute… Hang in there!

  4. JillH says:

    She is a beautiful little girl!

  5. shirley bidnick says:

    Ava’s a doll. You are fortunate to have her and she is fortunate to have a determined and committed mom. When I read about the feeding problems you and other parents of infants with WHS are having, I remember Rochelle’s childhood. She had the problems you describe. At age 32 Rochelle enjoys eating and is plump. I don’t think it is only a matter of outgrowing the problems. I think we have just learned how to manage the feeding problems. Even today, feeding Rochelle a meal takes one hour. Her meals, snacks, and toileting make up most of the day. It took me a long time to realize she cannot chew and swallow at a normal rate, and to compensate with patience and long leisurely meal. She also needs foods that are moist, have the right texture and are easy to digest. As a young mom, I rarely had an hour to feed her each meal. Now I do. Slowing down, and not expecting her to eat regular food at a regular rate has made a huge difference. I hope you are able to find what works for Ava, and that when you do, she will enjoy food as much as Rochelle does.

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