Monday, July 27, 2009

Amazing Baby

It's as if Joey woke up over the weekend. All of a sudden he is laughing several times a day, rolling all over the floor and vocalizing like crazy. He is simply amazing.

I was sharing Joey's accomplishments this weekend with one of the partners at work and he simply said "wow...how old is he?" When I told him almost six months he responded something to the effect of "yeah.. that is when my kids started to roll too. He is developing normally." He said that as if it was a big surprise. My response: "Yeah...he is." But I am not surprised. Joey is an amazing baby.

Once he discovered he could roll easily from his back to his tummy, there was no stopping him. He did it all day Sunday. I could hardly keep him on his little jungle gym mat. So I spread out a quilt in front of it. Because of the cats I prefer that he not be directly on the carpet. But I could not keep him on the quilt either. He is rolling all over the place. He is also lifting his little butt in the air and moving his feet like he wants to crawl... Soon enough!!! Amazing Baby!

Check out the video. I wish it was better quality but unfortunately it is all I have for now.

Sunday, July 26, 2009

Holy Cow!

Got Milk? Joey sure does. I think I set a new pumping record this moring... 18 ounces in 45 minutes of pumping. Usually my 30 to 60 minute pumping sessions yield about 12 to 16 ounces of milk. While breastfeeding is the most natural thing in the world... pumping is not. I feel like such a dairy cow when I pump. Since Joey never really took to breast feeding, however, and I wanted him to have breast milk, I have been pumping since he was born. At first I pumped every 2-4 hours. Then it was every six hours. I am now down to every eight hours (3 times a day). I have been producing so much milk that we had to buy a freezer for it all that we keep in the garage. Now that it is just about full I am contemplating stopping (in about a month) and Joey ought to have enough breastmilk for another 3-4 months. It has been so difficult working full time, taking care of a baby and finding the approximate three hours a day to pump. It will be so nice to have that three hours back to spend playing with Joey instead.

Friday, July 24, 2009

Then and Now

Joey in his swing at four weeks old. Look how tiny he looks in there.


In his swing at four months old. Wish I had a current picture. He looks like he barely fits in there now.

Getting a bath in the kitchen sink at three weeks old.


Bathtime in the sink at grandma's house at two months old.

Getting ready to go into the bathtub now.


and in the bathtub now


Joey asleep in his bassinette that grandma made him at three weeks old


You have to see the whole thing it was sooooo cute!



and now... our big boy sleeps in his crib in his own room (all night long)


Joey playing on his floor mat at four weeks




and now... at almost six months


Joey lifting his head up off his pa pa's (my father's) chest, for the first time, at four weeks old


And now... look at him holding himself up to check out his new toy!

And looking at me as if to say "piece of cake mom"



It is amazing how much he has changed over the past five and a half months. We are so proud of how much he has accomplished in such a short amount of time. Joey you are amazing and we know that you are going to continue to grow and thrive and make us proud!

Tuesday, July 21, 2009

I LOVE that smile!


I miss my Joey so much when I am at work. The one thing that gets me through the day sometimes is to look at pictures. Especially when we have been quick enough to capture pictures of my little punkin smiling. It just warms my heart and helps me trudge on knowing that if I can just make it until later I will get to see that little smile again.

Friday, July 17, 2009

Making Impressions

Yes. Literally.

Joey went to an impression party with Jen this week. We ordered impressions of his hand and foot from foreverfootprints. The look on Joey's face when they were doing these impressions is priceless. I LOVE IT.

Wednesday, July 15, 2009

Almost Wordless Wednesday (Physical Therapy)

Joey has physical therapy once a week at Jen's house. He has been doing really well with it.



He works really hard!







And sometimes gets a little wiped out!

On this particular day he fell asleep towards the end. Many thanks to Michelle Fannon, our wonderful PT who allowed me to photograph Joey's PT.

Monday, July 13, 2009

Raspberry King

A few weeks ago Joey added a new skill to his repertoire. I have finally caught it on tape.

We call him the Raspberry King now!

Friday, July 10, 2009

Flashback Friday- Bronchiolitis

I never wanted to be one of those parents who was afraid to take my baby out in public for fear that he would get sick. In the first few months after Joey was born we carefully avoided people we knew to be sick. But we did not avoid exposing Joey to the public in general.
But maybe we should have. On March 27, 2009, at approximately 8 weeks old, Joey was admitted to the hospital with bronchialitis. That day had started out pretty normal at first. I got Joey dressed and took him to the postpartum body sculpt class I was attending. In the car on the way there he started coughing. Not a lot, just a couple times. I quickly called my mom and told her that he sounded a little congested and had coughed a few times. She said not to worry that babies often get a little congested. During the class he seemed to be breathing hard, or with exaggerated breaths. I was getting a little concerned, but did not want to be one of those moms who called the doctor for every little sniffle.

After class we went by JC Penny to pick up some pictures. I was also going to stop by my office and drop off the thank you notes I had written for the beautiful baby shower they had thrown me and for all of the very generous gifts. (Since Joey was born 5 weeks early the shower was held after) While we were driving there, however, I decided that I definitely did not like the way Joey looked. He was now pale, his skin was mottled (even more than he normally was), he was very sleepy and his chest was caving a little bit when he breathed. He did not have a fever, no runny nose and was still eating like a champ... there were no other signs he was sick. Still I did not like the way he looked so I called the doctor around 2:00 and they had us come in that afternoon.

When we got to the pediatrician's office they checked Joey's oxygen level, it was really low, so they gave him a breathing treatment, put him on oxygen and called over to the hospital to see if there was a bed available in the Pediatric ICU. I started bawling when they told us he would have to be admitted to the hospital and don't think I stopped for a few days. We were immediately taken over to the Pediatric Intensive Care Unit (PICU), me in a wheelchair with Joey in my lap and told that Joey had Bronchiolitis. I had never heard of this. But I was glad we were there getting him some help. Still, I had no idea how very seriously ill he was becoming. And I had no idea at the time that this was about to be one of the worst experiences in my life (even worse than Joey being in the NICU).

It was about 6 p.m. on Friday night when we were admitted to the hospital. When the doctor admitted us he indicated that Joey's chest x-ray "looked terrible" and there was a good chance Joey would get worse before he got better. For the time being, however, they were going to get an I.V. going, give him oxygen and just do breathing treatments as needed. The I.V. had to be one of the most traumatic things for us. Being that this was a PICU you would think they would be equipped to handle little ones. Wrong. After several tries to get an I.V. in each of Joey's arms and feet, they had to call in someone from the NICU to try. The NICU nurse eventually got it going but by Saturday evening the vein collapsed and they had to do it again. I got hysterical and they made me leave the room (several times). The doctor also decided on Saturday evening that eating was requiring too much energy and they wanted Joey to reserve his energy for breathing. That backfired. The second a feeding time rolled around, and passed, and I was not allowed to feed Joey, he got extremely upset (and started crying) which did not help his breathing. So by early Sunday morning (2 a.m.) they decided that he needed to be intubated.
I again became hysterical. Tony, who had a pretty bad cold (and was likely the one who gave it to Joey) had gone home to sleep. I stayed at the hospital by myself (still pumping every four to six hours). Once again bad things (and news) was always happening while I was alone with the baby in the hospital, with no support.
They moved Joey to his own room so he could be intubated. I gathered our things from the old room and when I came around the corner, to my horror, they were shaving a portion of his head (and had a big rubber band around his head) to try and find a place for another IV. I went ballistic when I saw this and was again escorted away from the room. They were unable to get an IV in so they opted to put in a central line in Joey's groin.
They made me leave the room while Joey was intubated and the central line was put in. This was absolutely horrible. I refused to go to the waiting room around the corner so they got me a chair in the hall outside his room. The entire time I could hear the doctor bantering with the nurses. It would be almost ten days before I could look this particular doctor in the eye without wanting to inflict harm on him. I could not believe the lighthearted banter I was hearing from in the room where they were intubating my baby and putting in a central line. It was around 4 or 5 on the morning on Sunday morning by the time they finished. Joey had been given morphine and Atavan and so he was in a comma like state. He would remain that way for the entire week that he was intubated.
It is still hard for me to look at these pictures without getting choked up. The entire week is somewhat of a blur. I do not remember sleeping much, only floating in and out of sleep on the fold out bed in the corner of the room between visits by the respitory therapist and nurses. And pumping. I actually enjoyed pumping at this time because it was the one thing I felt I could do to help my baby. All night long Joey would also suffer desaturations in oxygen (due to spasms in his lungs or mucus) and alarms would go off and people would come running into the room to bag him while I helplessly looked on. I think the worst thing in the world was watching them have to bag my baby.
After seven days on the ventilator, he was finally maintaining oxygen levels during the weaning from the machine and they were finally able to extubate him. As in the NICU, the equipment and IV bags all slowly started to disappear.

Joey's Grandma (my mom) was again a lifesaver. After Joey came off the ventilator he was taken off the morphine and began to experience withdrawal. It was terrible and I felt so bad for him. He was awake for almost 48 hours and seemed miserable. This baby hardly ever cries and he cried whenever you set him down. And holding him was not an easy task as he had a CPAP (high flow oxygen line), still had the central line with several I.V.'s in it and an NG tube for feeding. The only thing made him happy at this time was being held and bouncing him. And so his grandma bounced him all night long for almost three nights. I was so grateful to be able to sleep at home, in my own bed, with my husband for the first time in almost two weeks.

Twelve days in the hospital at this point. Do we look exhausted here or what!

By two weeks, Joey was finally off the ventilator, off the NG feedings and bottle feeding like a champ. It was the Thursday before Easter and the only assistance he was receiving at this time was, what the doctor described as a whiff, of oxygen. I once again began begging to take my baby home. At first they told me maybe on Monday. But I was not ok with my baby spending his first Easter in the hospital if the only reason we were still there was for a very small amount of oxygen. So they agreed to get us set up with oxygen and a pulse oxygen machine at home and that Saturday, after fifteen days in the hospital, we took Joey home.
He has since had bronchiolitis again. This last time, however, his airways were larger and we were able to treat him by doing breathing treatments with the nebulizer at home. He does not like the breathing treatments but it beats the heck out of being in the hospital.

Thursday, July 9, 2009

Beautiful Pictures

A friend of Jen's took these pictures of Joey the other day at the park. They are so beautiful. Thank you Jen and please thank your friend Jennifer for these gorgeous pictures. I absolutely love them.




Tuesday, July 7, 2009

Momma Has To Work

It's hard to believe that it has been two months since I returned to work. While it has been VERY hard, it would have been much harder (if not impossible) had it not been for the fact that I work for the most wonderful people and had the fortune of finding the most wonderful babysitter for Joey.


I want to thank the partners at Angelo, Kilday & Kilduff for being so patient and understanding and for making the transition back to work as smooth as possible. I know that my maternity leave (and the extra month I took off due to Joey's hospitalization from March 27 through April 11) was not easy on the partners and the other lawyers in our small firm. And to some extent my pregnancy was difficult as well because I had a rough pregnancy and was not able to work the same number of hours I had become accustomed to working over the past few years. But they have been very supportive, like family to me, and have been so great. When I returned to work on May 4, 2009 they let me move into a much larger office where I am much more comfortable pumping breast milk for Joey. While I am still tired and getting used to being a working mom, getting back to work has been much easier than it would have been had I worked anywhere else. I feel blessed to work for such wonderful people and I cannot begin to thank them enough for all that they have done for us.


I also want to thank Jen Varanini Sanchez. While getting back into the groove at work has been very difficult, I cannot imagine having returned to work if I had to leave Joey with anyone else. I met Jen through the Down Syndrome Information Alliance (DSIA) in the days after Joey came home from the hospital. I contacted the DSIA looking to connect with other parents with babies with Down syndrome and Jen called me to tell me about her son Joaquin and to offer support. We ended up meeting for coffee. During that initial meeting I mentioned that I was not thrilled with the idea of leaving Joey at Merry Hill when I returned to work. He is such a good baby, does not cry much, and I was really afraid that he would not get enough attention there. Much to my surprise and good fortune, she e-mailed me a few days later with an offer to babysit Joey when I returned to work.


Things have worked out so wonderfully. I am comforted by the fact that Joey is in such a loving and nurturing environment while I am at work. As demonstrated by some of the posts on Jen's blog, I know that Joey is getting loved on by Jen and her family the way we would be loving him if we could be with him all day long. It melts my heart when I see the way Jen's three boys have accepted Joey. He even gets his physical therapy while he is at Jen's house. I do not know what I would do without Jen and I cannot thank her enough.



Some recent pics of Jen sent me of Joey in the park.








Thank you so much AKK and Jen for helping us get back to living a somewhat normal life. I say somewhat because life with a new baby has been a definite adventure, even without all of the difficulties we have had and does not yet feel normal. I just feel so very blessed and know that things will continue to get better and better, as I adjust to my new role as a working mom, thanks to the great support network that I have found in all of you!