Grow…but not too much!

Ben has had some ups and downs this week. Good news first…his diaper rash has subsided. It seems that he much prefers the Emphamil to Similac and now the doctors special order it for him. He had his feeding tube removed over last weekend and was up to full bottle feeds right away. The doctors discontinued his caffeine he had been on to help with heart rate dips. He had the heat in his isolette turned off and was maintaining his own temperature. He started gaining weight fast and as of yesterday was up to 3lb 9oz. On Wednesday, we discussed beginning the five day countdown to when Ben could come home. (they started counting on Wed but he had a heard rate dip which meant the count would start on Thurs.)

Unfortunately, when you are so little, gaining weight this fast is not always a good thing (now they tell us!) Wednesday night the nurses noticed he was struggling with breathing and was having apnea’s down to 86 (not terribly low but lower than usual). They decided after a night of this and his disinterest in his bottle that it was wearing him out so back on nasal cannula he went. He also had his feeding tube reinserted and the temperature on the isolette went back on. The doctors think with the rapid weight gain, he was retaining water and this led to some fluid in his lungs. He was given medicine to help flush out the fluid which should help things. He seemed very tired to me last night and definitely did not want his bottle, but he was perked up enough to make faces at us and look cute. The doctors said not to look at this as too much of a setback as its very common but its been hard on Josh and me. We aren’t used to him having many setbacks at all and really were not prepared to take as many steps backwards as we felt we did yesterday. I’m hoping today we will will find a different story when we go up and we keep reminding ourselves nasal cannula really isn’t a very big deal but we are just so anxious to take him home!

So for now, we tell him :Keep growing Ben (but not too much!)…

Grow…but not too much!

Ben has had some ups and downs this week. Good news first…his diaper rash has subsided. It seems that he much prefers the Emphamil to Similac and now the doctors special order it for him. He had his feeding tube removed over last weekend and was up to full bottle feeds right away. The doctors discontinued his caffeine he had been on to help with heart rate dips. He had the heat in his isolette turned off and was maintaining his own temperature. He started gaining weight fast and as of yesterday was up to 3lb 9oz. On Wednesday, we discussed beginning the five day countdown to when Ben could come home. (they started counting on Wed but he had a heard rate dip which meant the count would start on Thurs.)

Unfortunately, when you are so little, gaining weight this fast is not always a good thing (now they tell us!) Wednesday night the nurses noticed he was struggling with breathing and was having apnea’s down to 86 (not terribly low but lower than usual). They decided after a night of this and his disinterest in his bottle that it was wearing him out so back on nasal cannula he went. He also had his feeding tube reinserted and the temperature on the isolette went back on. The doctors think with the rapid weight gain, he was retaining water and this led to some fluid in his lungs. He was given medicine to help flush out the fluid which should help things. He seemed very tired to me last night and definitely did not want his bottle, but he was perked up enough to make faces at us and look cute. The doctors said not to look at this as too much of a setback as its very common but its been hard on Josh and me. We aren’t used to him having many setbacks at all and really were not prepared to take as many steps backwards as we felt we did yesterday. I’m hoping today we will will find a different story when we go up and we keep reminding ourselves nasal cannula really isn’t a very big deal but we are just so anxious to take him home!

So for now, we tell him :Keep growing Ben (but not too much!)…

First Bottle Down!

Ben had a blood transfusion two days ago as his red blood cell count has been low for almost three weeks now. The doctors told us he is growing too fast for his marrow to keep up and with the transfusion, it would give his body a change to keep up. It really did perk him up and he had a ton more energy yesterday. Enough to take his first whole bottle of 24 milliliters. Now he just has to work up to taking all 8 bottles a day! He was up to 1305 grams yesterday (2lbs 14oz!)…3 pounds is just around the corner. He really has changed a lot in the past week, he finally has chubby cheeks and is starting to get a double chin. He also has developed a pretty bad diaper rash so we are switching the formula he is on back to the one that he had in Boston hoping that will help. He also is not getting daily baths to try and clear it up. Last night our nurse mad him “Butt Paste” that I believe is a mixture of Balmex and Maalox. So, hopefully one of the above will help him out…

Day before we left Boston

First bottle then falling asleep afterwards

First Bath!

First Bottle Down!

Ben had a blood transfusion two days ago as his red blood cell count has been low for almost three weeks now. The doctors told us he is growing too fast for his marrow to keep up and with the transfusion, it would give his body a change to keep up. It really did perk him up and he had a ton more energy yesterday. Enough to take his first whole bottle of 24 milliliters. Now he just has to work up to taking all 8 bottles a day! He was up to 1305 grams yesterday (2lbs 14oz!)…3 pounds is just around the corner. He really has changed a lot in the past week, he finally has chubby cheeks and is starting to get a double chin. He also has developed a pretty bad diaper rash so we are switching the formula he is on back to the one that he had in Boston hoping that will help. He also is not getting daily baths to try and clear it up. Last night our nurse made him “Butt Paste” that I believe is a mixture of Balmex and Maalox. So, hopefully one of the above will help him out…

More settling in

We had a busy weekend…we found the closest Babies R Us in New Jersey. (which just happened to be next to Ikea…which Josh had never been to…I made sure we made a detour because EVERYONE should go to an Ikea once in their life. Also, we played everyones favorite game of “See how much of your friends furniture you recognize. *Beth, I saw your old coffee table!)

Okay, after that digression. We picked up most of the stuff we felt we needed to bring Ben home to…diapers, changing table pad, infant stroller. We also ordered his crib! If any of you have spoken to me recently, you know I hate the way cribs look. None of them look like cribs and why do they all have to convert into being a headboard and foot board that the baby can basically use until they go to college…seems like a bit of a commitment! Anyway, this is what Ben ended up with:

http://www.toysrus.com/product/index.jsp?productId=3012776

We also picked up Bens first Halloween costume. We recognize this is more for pictures for the grandparents than anything but we didn’t want all the good ones to be gone by the time we went looking. Some of the nurses had mentioned a previous preemie being a mermaid one Halloween. I thought that sounded great and Ben could be a “mer-man”…Josh did not agree. You will have to stick around until Halloween to find out what he is going to be…

After shopping for Ben, we had to pick up a few things to make the guest room a bit more homey. The guest bed now has a dust ruffle (bed skirt? what is the difference?) Mom, I know you are proud. In this excursion we learned that we have a Linens & Things as well as a Bed, Bath and Beyond all within a 5 minute drive. Oh! And Target. Who knew Jersey City was so up and coming!

This week brings the second week of training class for Josh and my first full week in the office. The NICU here is a lot less conducive to visiting than MGH was. They close for rounds between 645p and 8p so I have been working earlier hours to try and get up to the hospital by 5p. I sit with Ben for a bit (no more Kangaroo-ing…just swaddled like a baby and held) before I get kicked out. Then I go to a local diner for dinner (Josh meets me when he can) and wait until we are let back in. By 8p Josh has usually joined me and Ben gets to have a little daddy time. We head home again around 9p because it takes about an hour and 15 minutes to get home. Makes for long days but its become so routine I hardly notice it.

Ben has started trying out eating by bottle…he isn’t so sure about it. He got down almost the whole 22 milliliters on Saturday night but then had zero interest yesterday. He will get it down soon though. He is growing like a weed! 95 grams in two days bringing him to 1235 grams or 2lb 11 oz.

More settling in

We had a busy weekend…we found the closest Babies R Us in New Jersey. (which just happened to be next to Ikea…which Josh had never been to…I made sure we made a detour because EVERYONE should go to an Ikea once in their life. Also, we played everyones favorite game of “See how much of your friends furniture you recognize. *Beth, I saw your old coffee table!)

Okay, after that digression. We picked up most of the stuff we felt we needed to bring Ben home to…diapers, changing table pad, infant stroller. We also ordered his crib! If any of you have spoken to me recently, you know I hate the way cribs look. None of them look like cribs and why do they all have to convert into being a headboard and foot board that the baby can basically use until they go to college…seems like a bit of a commitment! Anyway, this is what Ben ended up with:

http://www.toysrus.com/product/index.jsp?productId=3012776

We also picked up Bens first Halloween costume. We recognize this is more for pictures for the grandparents than anything but we didn’t want all the good ones to be gone by the time we went looking. Some of the nurses had mentioned a previous preemie being a mermaid one Halloween. I thought that sounded great and Ben could be a “mer-man”…Josh did not agree. You will have to stick around until Halloween to find out what he is going to be…

After shopping for Ben, we had to pick up a few things to make the guest room a bit more homey. The guest bed now has a dust ruffle (bed skirt? what is the difference?) Mom, I know you are proud. In this excursion we learned that we have a Linens & Things as well as a Bed, Bath and Beyond all within a 5 minute drive. Oh! And Target. Who knew Jersey City was so up and coming!

This week brings the second week of training class for Josh and my first full week in the office. The NICU here is a lot less conducive to visiting than MGH was. They close for rounds between 645p and 8p so I have been working earlier hours to try and get up to the hospital by 5p. I sit with Ben for a bit (no more Kangaroo-ing…just swaddled like a baby and held) before I get kicked out. Then I go to a local diner for dinner (Josh meets me when he can) and wait until we are let back in. By 8p Josh has usually joined me and Ben gets to have a little daddy time. We head home again around 9p because it takes about an hour and 15 minutes to get home. Makes for long days but its become so routine I hardly notice it.

Ben has started trying out eating by bottle…he isn’t so sure about it. He got down almost the whole 22 milliliters on Saturday night but then had zero interest yesterday. He will get it down soon though. He is growing like a weed! 95 grams in two days bringing him to 1235 grams or 2lb 11 oz.

Get settled…

Sorry for the delay in posting…we made it to NYC last week. Ben followed shortly behind in the ambulance but slept the entire time we were told. We got him settled into Mt. Sinai and then we got ourselves settled into the new apartment. We have been spending out time visiting him and getting the apartment in order. We have also been trying to catch up with new friends and start to get more comfortable. Ben is off of all oxygen and has been gaining weight. He is up to 2lb 8oz now. We started trying to give him a bottle and he took about half of it. Going forward, we will keep trying him for one feeding a day until he masters an entire feed and then we will start upping how many feeds a day he takes by mouth. The doctors told us yesterday he could be home in a few weeks so we will see…

A few pics we took before NYC…we have Ben a bath yesterday so we will post those soon.