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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.

The Second Week

The second week went well also.  We celebrated Thanksgiving; so much to be thankful for.

Lia, who seems to be a little intimated by the baby's small size, seems to warm up to her here and puts on a show.

The First Week

The first week went very well.  Geneva quickly got the hang of breastfeeding and was wetting her diapers regularly - everything a one-week old is expected to do.  Brendan and I spent a lot of time just watching the baby, enjoying her noises and funny movements.  We also saw the pediatrician and she was already close to getting back to her birth weight.  He was pleased with how she looked and told us to watch out for colds this time of year.

The girls came home from school to find their new sister home so they did their homework and 'babysat'. 

A video of Geneva doing what newborns do.

The First Two Days

The first few days went better than I ever expected.  Despite the fact that Geneva's ultrasounds showed no clear markers for Down syndrome, there were still so many unknowns that wouldn't be known until birth.  There were still questions about her heart, intestines, and bloodwork.  Geneva passed her hearing test.  Her bloodwork was good and showed no blasts for leukemia which children with Down syndrome have a higher probability of having.  Her echocardiogram went better than expected as the potential small VSD that was 'suspicious' according to the cardiologist prenatally, was not there.  She has a PDA and PFO which I've been told should resolve and is nothing to worry about.  We will follow up with the cardiologist in a few months.  So, when many babies with Down syndrome end up in the NICU with feeding tubes, surgery on day 2 to repair intestines, etc., we got lucky.  There will be bumps down the road, but we were so thankful to be able to hold her without tubes and wires and take her home after only 2 days.  She did better than Lia did in the hospital.

And all I kept thinking the day she was born was that that would have been the day we found out she had Down syndrome had we not done prenatal testing.  Because we knew ahead of time, we were prepared and the day of her birth was a day of celebration.  Had we not known and only found out that day, our emotions would have been very different and I'd imagine it would have been a tough week.

Skin to skin contact is encouraged as it helps with cognitive development and well as lowers my blood pressure among other benefits.

Meeting the Sisters

Later in the day big sisters Carina and Lia came to visit.  The baby still didn't officially have a name yet.

The Birth Story

A lot of people apparently write down their birth story.  There isn't much for me to write about since baby arrived 8 minutes after I arrived at the labor and delivery floor of Brigham and Women's.  In a nutshell, maybe I waited too long at home to labor? My water broke at 10pm, just in time for me to go to sleep, of course.  I wasn't sure it was my water, and neither was the doctor when I called her, but she said if I start having contractions lasting 5 minutes apart and I can't talk through them then come to the hospital.  Eventually I was feeling contractions as I lay in bed trying to get some sleep, but that wasn't happening.  8 minutes apart, then 10?  I was confused but suddenly at around 2-something I felt one at 6 minutes really strong so I told Brendan it was time to go.  I called my friend, Monica, who was on call to sleep at my house.  As I started to move around and get some things together they were coming more frequently.  Every 4 minutes now.  Monica arrives at 3am.  We leave and I feel every bump in the road.  We get to admitting at around 3:20.  I need to fill out paperwork, great. Now they are every 3 minutes.  I think the woman in admitting sensed my discomfort because she gave Brendan the rest of the papers to fill out later and put me in a wheelchair and brought me up to the labor and delivery floor.  It was 3:30am.  They took me into a room to hook me up to some monitors and had Brendan wait in the waiting room.  I felt like I was getting to the point where I couldn't think straight.  The first thing I asked the nurse was if I can get the epidural and she said yes as long as I could sit still for it.  Then she asked me to get undressed but the pain at that moment was so bad that I froze.  I managed to put the jonny or whatever it's called on but couldn't even get onto the gurney because of the pain.  Somehow I did and she tried to put a fetal heart monitor on me and at that point I started screaming in pain.  I couldn't believe myself and the sound that was coming out of my mouth, but I couldn't help it.  Looking back, I find this whole experience hilarious and crazy but at the time I was terrified.  I told the nurse I wanted to push but she said not to as I'm screaming in pain and she's yelling 'we need a room'.  She decides to forget about the monitor and next she's quickly rolling my gurney down the hall as I'm gripping the bars on the side screaming in pain and pushing.  At that moment I thought I was going to deliver this baby in the hall.  I thought about the other expectant moms, quietly laboring comfortably with their epidurals and that I was probably scaring every one of them.  They get me a room and I somehow manage to switch to the bed where I see my OB and was so relieved that she was staffed that night.  I ask her if I could get the epidural and she checks me and then looks at me and shakes her head no.  She said all I needed was a few pushes and it would be over.  At some point Brendan made his way into the room.  My body felt like it was dry heaving and wanted to push every organ out of it.  A few more minutes later after screaming things like "baby come out", "is she out?", and "this is ridiculous" (in reference to the pain, not the 7 doctors and nurses present), she was out.  Just like that.  3:38 am, 6lbs, 14oz, 18 inches.  She looked exactly how I pictured she would because she looked exactly like her sisters, odd skin and all.  It's a wonderful moment when you first hold your newborn.  They're warm and delicate and I'm always a little scared of breaking them somehow.

I had imagined a slower, more controlled birth and expected Brendan to snap a bunch of pictures and maybe take some video, but it didn't happen that way and it took a few minutes for us to realize that he needed to get the camera out.  Here's the very first picture. 

And a few more...

Holding my finger and I remember thinking she's going to take me through this journey.

 Finally I let the nurses take her back to get weighed.

 Here she's hanging out under some heat to increase her temperature.  At this point I remember a senior nurse standing over her teaching a student nurse and pointing out all of the physical characteristics that the baby was displaying related to Down syndrome.  For those first 15 minutes of life I felt a little bad for her and her Down syndrome, I guess because the birth was the final test.  It confirmed all of the other prenatal tests - the amnio, the cell free DNA test.  After those first 15 minutes it hasn't bothered me since, maybe it's because in those first couple of days in the hospital no one (nurses, doctors) made a big deal of it.  They certainly addressed it, but those first days were full of congratulations and not sadness.

Hello World!

I'm going to use this space as a place to post pictures of our newest bundle of joy, Geneva, so that family can stay up-to-date on the latest that's going on with her and her family and she grows and changes every day!

First I'll need to play some catch up on the first 2 weeks....