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Meeting Dr. Skotko

Yesterday Geneva turned one month old. We also happened to have an appointment with Dr. Skotko at the Down Syndrome Clinic at Mass General. Spend 30 minutes researching on line about Down syndrome and you'll come across the name Dr. Skotko, who in my opinion, seems to be the lead expert in Down syndrome. He's a bit of a celebrity in the Down syndrome community. How we got him as our doctor, I'm not quite sure but I feel so lucky that we have him. I had made a prenatal appointment at the clinic and we were assigned an appointment with him back in October when he told us he wanted to be our baby's doctor. At yesterday morning's appointment I refrained from embarrassing us all and asking for a picture of him with the baby, but may try to get one at the next appointment. Overall, he thought Geneva was doing fantastic. She's already up to 8 lbs, 10 oz which means she's still eating well! Here's her picture I took of her to celebrate her 1 month birthday.

Notice the blanket she's laying on. This was a gift we received from the Genetics Department at Mass General yesterday morning as we checked in for our appointment, handmade by the sister of one of the women that works in the department. She had an aneurism and ever since has been sewing blankets for baby genetics patients and donating them. She's made and donated close to 400 blankets.

A Great Resource for Someone with a New Family Member Who Has Down Syndrome

If there are any family members reading this post that are interested in learning more about the facts of Down syndrome, this is a fantastic booklet.

Tummy Time

During the day we play and try our best to spend time on our tummy, which is more important for Geneva than it ever was for the other girls so she can strengthen her muscles.  I'm looking forward to meeting with the physical therapist in a couple of weeks to see what they think about GiGi's muscle tone.  A friend of mine who's daughter has Down syndrome held Geneva the other day and was surprised at her strength.  I personally don't feel that Geneva is extremely floppy, but I forget what my other girls felt like at 3 weeks.

Sometime Geneva cries during tummy time. Carina and Lia find it stressful.

Some pictures of GiGi hanging out with her favorite book...

Geneva had a check up on Wednesday.  She's now up to 8lbs!  The doctor was pleased with how she looked with the exception of her strange breathing habits which we're just keeping an eye on.

And one last comment, today I sadly donated my maternity clothes.  

Settling Into a Routine

GiGi's routine seems to be eat, stay awake for a couple of hours where she prefers to be held and not in her swing or bouncy seat, then sleep for a few hours and repeat.  I don't remember what I did with my other two when they were this age, but with Geneva I feel compelled to entertain and stimulate her when she's awake.  I feel like if she's just sitting in a swing staring into space then her brain is not developing.

We also do tummy time where she seems to be doing well strength-wise,  She can move her head from side to side while on her belly.  I also noticed the other day that when Brendan was holding her she recognized my voice and turned her head to look at me.

She still is showing congestion issues, but we see the pediatrician tomorrow and we'll also have her weighed so we'll be able to see how much weight she's gained.

Here are some recent pictures:

Lia finally holds the baby!

GiGi in the Hospital

Friday after Thanksgiving Geneva started getting a little bit of nasal congestion.  She seemed uncomfortable so I sprayed some saline in her nose and was able to suck out some mucus.  She appeared more comfortable but that night didn't seem to sleep well.  The next day I noticed that she was uncomfortable again and the area in between her collar bone was going in and out, which I had read earlier was a sign of respiratory distress.  It started to worry me so I cleared some more congestion and then it seemed to stop.  At the same time I called the doctor who said if it happens again call back.  Monday morning she was doing it constantly and with all the googling I was doing I was going out of my mind so I called the doctor on call who asked for a video.  This was the video I sent:

He viewed the video and told us we needed to go to the emergency room.  I have a 5 and 7 year old and this was our first trip to the ER.  They did a chest xray but no pneumonia.  They did and EKG, which she passed.  They hooked her up to monitors to watch her heart rate and oxygen levels, which seemed decent, still though they wanted to admit her for overnight observation.  They were on the fence because admitting a newborn to the hospital exposes them to more germs, but they felt that was the best choice.  They were partially concerned it was a cardiac issue.  So we spent the night in the hospital where we had a roommate, an adorable little blond 3 year old with Down syndrome, who had unfortunately had quite a few hospital stays under her belt already.  She was in this time to receive, I think, antibiotics for tonsillitis.  Geneva did well overnight and the next morning a team of seven doctors came in to discuss her, some of these were residents, but it was a lot of people, which made me feel more comfortable.  They diagnosed her with bronchiolitis due to an upper respiratory infection which means the small airways in her lungs are inflamed.  They sent us home, despite the fact that she was still having retractions, and told me to keep an eye on it.  This is stressful as a two week old should not be in the hospital.  People have been wanting to visit, but I was declining them because she was so young and it's cold and flu season, not to mention the fact that she has Down syndrome which makes her more susceptible to infection, and this was my rule before the hospital stay.  Newborns need to be protected in their first 3 months of life; adding the fact that it's cold and flu season and that she has Down syndrome makes her more vulnerable.  Now we will live in our cocoon at least for the next 3 months, because this is what the pediatrician warned me about.  Even a fever of 100.4 in the first 3 months is an automatic trip to the ER and I don't want to have to take her back there.