8 appointments in the next 4 weeks...I'm not use to being on this side of healthcare

Yesterday was a long day. Gabe had his first Cardiology appointment. He's gaining weight which is a plus. We're trying to start feeding him on his command instead of waking him every 2-3 hours only to have him throw a fit. I'm still pumping breast milk b/c I want to give him as much immunity as I can for the winter months. We have appointments scheduled with OT and PT to help with feeding issues and I'm still planning on meeting with lacatation next week to see what they say. I'm still trying to figure out how long I can take this whole breast feeding pumping thing. I figure I'll wait till they do the feeding eval with OT/PT to see what they say. I've had a cold lately which is weird b/c I haven't gone anywhere. Maybe it's the weather. Gabe has also had lots of upper airway congestion. I've been squirting saline up his nose and using a bulb suction which he loves. I also made them suction him out real good at the doctor yesterday. He sounds a little better today. They said he may just be a loud breather and get a little gunky sounding due to his narrower nasal passages. They also did a chest xray yesterday to see if he's having any stress to his lungs because he breathes so fast. The xray came back normal, so we'll keep watching it. We go back to cardiology in 2 weeks for another weight check and to meet with the dietitian. Mom came by this afternoon to help out. I took a 2 hour nap and feel like a new person. My Grandma also made us dinner...it was like Christmas. We're still trying to work on Gabe decreasing his awake time at night from 4 hours to 2-3 hours. We're trying to start the whole routine thing. He does love his lullaby music..thanks Deb! I need to try to put video on this blog so everyone can see the cuteness live in action. I know I'm behind on pictures...here are a couple. Gabe closes his eyes everytime the camera flash goes off, so it's rare to catch him in a picture with his eyes fully opened.

Q & A

Gabe has had lots of visitors the past week. He has met Grandparents, friends, and neighbors. We have been getting a couple questions:

Does he really have Down Syndrome because I can't tell?
Yes, he does. This was confirmed by amnio when I was still pregnant. There are features that appear subtle now and as he grows, they may become more noticeable...we don't know yet. Looking at his cute little face, you can't tell much, only with certain expressions. He does have smaller ears, a crease on the palm of his hands, a larger gap between his big and second toes, and a little extra skin along his neck. The geneticist at the hospital told us his tone and palate are very good which will hopefully be a good indicator of speach and motor skills. He is a baby and looks like Justin and myself first and foremost, but there are little traits of Down Syndrome if you look for them.

When will they do the heart surgery?
We're still not sure. The goal is still 4-7 months old. They want him to be as big as possible, while still healthy, before the surgery. The doctors and us will look for signs such as decrease feeding, extra tired, a little sweaty, etc. to tell us that the heart is under some stress and it is time for the surgery. Gabe will not be in pain when showing these signs of "stress". With his heart condition, the oxygenated blood and deoxygenated blood in his heart mix together and go out to the body instead of just the oxygenated blood going out to the body. This means that his heart is working overtime. Kinda like he's running a marathon. This is why there is so much emphasis on his feedings and bulking him up. The outcome for this type of surgery is very optimistic and lucky for us, Gabe is otherwise very healthy which is a good sign for quick recovery. We are lucky that Children's Hospital Cardiac Center is so close to us. Typically after the surgery, recovery is about a week to 10 days and he should bounce back very quickly and immediately begin to grow and thrive.

For now, it's just a waiting game and lots of doctors visits...in the mean time, we play with him alot. He's starting to have more episodes during the day of awake time when he does active play and tracks with his eyes and responds to our voices. He's so cute! He loves his little Baby Einstein gym and swing (thanks Becca, Rachel, Carrie, Andrea, and David).

week 1 update

We had our first Pediatrician visit yesterday. Gabe is up to 7.45 lbs. which is a big relief to me. The doctor thought he looked great. He does have a little bit of a hernia that will need to be followed, but she was really happy with his tone, palate, color, etc. Breastfeeding is still a challenge, however, I am starting to see improvement. Gabe has about 2 periods a day when he is really awake and alert. During those 2 periods, I have gotten him to breastfeed for at least 20 min. which is huge. When he's tired or not opening his eyes, he screams, but those two times a day when he's into it are keeping me motivated. Special thanks to Stephanie for the support and to Sara for helping out yesterday. I was able to sleep in some and feel pretty well rested today. The doctor gave me permission to let him wake me up during the night for feedings as long as I'm feeding every 2-3 hours during the day. Hopefully this will get him on more of a day/night schedule. While Gabe hates having his diaper changed, he loves bath time.

We're home!

We got discharged this afternoon. I feel like all I do is breastfeed. It's a very hard thing to do when they want you to feed your baby 65ml per feed and he gets exhausted after 10 min. Hopefully the first night will go okay. We have lots of follow up visits scheduled, but at least we're home. Note I am not posting a picture of myself b/c I look like hell...seriously.

He's come a long way...

Sorry I haven't updated in awhile. We've mainly been keeping people updated by email, phone, and text message. We are still on cardiac stepdown, mainly for feeding issues. We will most likely be discharged tomorrow. He has occasional desat episodes with his oxygen level, but he recovers quickly on his own and they are expecting this to occur from time to time till the surgery. He is improving with feeding. We are still working on increasing calories, but his weight is up today and I am working on breastfeeding/pumping. Justin and I are both very tired, but doing well. Gabe's progress has been really encouraging. And if you ask us, he really is the cutest baby ever!

Welcome Baby Gabe!

I started having labor pains on and off early Wed. AM. I got up at 5am thinking I would take a shower and walk around the house some and see if they continue. They then started coming every 5 min. I woke Justin and called the doctor and she said to come to the hospital so they could check me. When I arrived I was 2-3cm dialated and my cervix was completely thinned out. The doctor came about 30 min later to see me and said I was 5-6cm dialated. She explained that she wanted to break my water and start pitocin to progress labor as much as possible so the baby wouldn't be under stress and labor would be controlled and we would have MD, Pediatrician, Neonatologist all present. I was fine with this. I was happy to have the epidural. 30 min later, I was up to 8cm, but at that point, the baby had a major deceleration of his heart rate. I coulnd't see the monitor, but I think it went into the 50's and was having trouble recovering to over 100. The doctor came running in the room. There was a big discussion on whether to continue with labor or do a C-section. I really didn't want a c-section, but I didn't want to get into an emergent situation later on either. Because of his heart complications and the fact that he wasn't dropping down into the birth canal, we decided on a C-section. Justin was at my side and was actually able to watch everything above the drape. The baby came out crying and we both teared up. His initial Apgar was 6 and then it went up to 9 which I was really happy with. He weighed 7 lbs. 2 oz and 20.5 in. long. Pretty good size for being 3 weeks early. They let us hold him and then took him to the special care nursery to do full assessments. Later in the day I went to visit him in the nursery and the neonatologist said that they wanted to transfer him to Children's for closer monitoring because had a major drop in oxygen saturation while they were giving him a bath. We said goodbye to him and they transported yesterday evening to the Cardiac ICU. Justin went over with him and he's actually been doing pretty well. They're watching his PDA (valve connecting heart to lungs) to make sure it closes completely. He hasn't had anymore major desat episodes and is off oxygen. They'll be transferring him out of ICU today to cardiac stepdown. He has took 1.5oz formula this morning and did fine. I'm trying to pump and rest up the best I can. I'll be discharged today at 4pm and then go to Children's to visit the baby. We're hanging in there. Justin has been going back and forth from hospital to hospital. I can't wait to see the baby tonight. It almost doesn't feel real.

Just the way you look tonight....

Tomorrow is Justin and my 2 year wedding anniversary. We went to Bella Luna last night as an anniversary/last nice date night before the baby comes...it was so good!