So the past few weeks have been pretty uneventful. We went to our clinic visit in Boston yesterday and of course my anxiety level was up. It's so hard to know how those labs are going to turn out. It's usually when everything seems pretty normal that we end up with an abnormal result. We left the clinic with the understanding that if her electrolytes were out of range they would call me on my cell and we would take her to Yale.
Well no news is good news and everything was in normal range. We made it home last night without a phone call. They did however call me this morning to discuss some changes. Juliana's lung disease causes the doctors to be a little nervous about increasing the volume on her TPN. If she gets too much fluid it can overload her lungs, but if she doesn't get enough fluid she will become dehydrated. Her urine output has been on the low side lately and she has gained a bit of weight this month (yeah!), so they have decided to increase the volume again. She will have labs drawn again in two weeks to see how it all goes and of course we will be watching her very carefully as usual. Next week we will also see her pulmonologist which will be just in time with all of the changes.
If she tolerates the volume increase we will be able to cut back to 18 hours of TPN down from 19 hours. I am hoping that by the end of the year she will be on TPN for 12 hours. Now that she is moving around it would be nice to have one less thing for her to get tangled up in. If she can get off oxygen by the end of the year as well we would only have the feeding tube in the daytime. Right now she has so much I couldn't even imagine how tangled she would get if she were crawling and cruising. When her therapist comes for her exercises I try to eliminate as much as I can (like unpluging the monitor and stopping her feeds) and we still end up tangled.
She is still working on her rolling. She manages to roll on to her belly but gets really frustrated. She isn't holding her head up while on her belly. I think that once she is able to support her weight on her arms and upper body that the belly to back roll will come easily. Juliana has also taken an interest in the little stuffies she's been collecting since birth. She especially likes her Zoe that she tosses around. If you hold Zoe up and make her dance Juliana starts to laugh out loud. It's the greatest sound in the world.
All in all things are going well on the health front. We are still recovering from Omar's layoff last month but he's back at work now and we are making the best of it. I did enjoy spending weekday mornings in the office over spending late afternoons and Saturdays in the office, but we do what we have to do to make it work. We are blessed to have employment at all in the current economy so I take none of it for granted.
Hopefully life will continue to be uneventful (at least until our next planned surgery).
Friday, July 24, 2009
Sunday, July 12, 2009
Happy Birthday!
We made one year and what a long journey it has been. These last few days have been bitter sweet as I remember the events of this past year and how it all started. Fortunately I can focus on the sweet part and have finished beating myself up over the why.
Juliana had a quiet birthday at home. Her brother just had his birthday party the week before and that was enough excitment for all of us. She is now rolling from back to belly but gets very upset because she can't roll belly to back yet. It's pretty funny to watch her do a full roll and then start screaming and kicking her legs up. We have been showing her how to roll back to her back but she just gets too upset. She also has a new interest in pulling on her line (not good at all). I knew this day would come so we are taking many precautions to hide the line to prevent her from pulling it out. It's just really hard to hide and keep it away from the diaper area to avoid infection. I made a sleeve that velcros around the line to keep it out of her site. Hopefull this will deter her for a while.
I think we may be getting teeth soon or at least I am hoping. She has taken a disinterest in her bottle feeds which isn't the end of the world because I have two other ways to give her nutrition (NG tube and her central line). It is however frustrating because ultimately our goal is to have her get all of her nutrition by mouth. I was always so thankful that Juliana didn't have any oral aversions from her lengthy intubations. I am hoping that the reason for this sudden disinterest is that she teething and that she will soon get back to her old bottle gulping self. She is however taking her cereal just fine. She is only taking 1/2 a tsp with formula but the belly seems to like this so we will stay here for a while.
I am not sure if I shared the news of Juliana's hearing loss. It was a bit hard for me to swallow. I am not really sure why because hearing loss isn't nearly as life threatening as chronic lung disease or short bowel syndrome. Juliana has profound hearing loss in her left ear and severe loss in her right ear. At least I can stop telling little Omar to turn the volume down when he is playing his keyboard. She is scheduled to be fitted with an amplification device that will basically turn up the volume for her. She can hear noises that are classified as extremely loud but can't hear noises that are very loud like the vacuum cleaner, alarm clock, or heavy traffic. So this also means that my family will have to become tri-lingual and learn sign language as well as spanish.
Overall things have been pretty normal for us which is more than I could ever ask for. There are some things on our list of summer activities that we have to be very careful about like going to the park or the beach or taking a walk. The weather has been warming up which makes it a little harder to bring Juliana out. She is really crabby when she's hot and we also run the risk of dehydration. I have been in search of a baby sun tent so that we may be able to spend the day outside and still keep her comfy out of the sun. Fortunately it doesn't seem like it's going to get too hot this summer.
I have some videos and pics of Juliana rolling and laughing that I will try to get up soon. It was pretty hard to get her on camera because as soon as I pull it out she stops what she is doing to look at the camera. She is turning into such a character and we are so blessed to have her in our lives.
Juliana had a quiet birthday at home. Her brother just had his birthday party the week before and that was enough excitment for all of us. She is now rolling from back to belly but gets very upset because she can't roll belly to back yet. It's pretty funny to watch her do a full roll and then start screaming and kicking her legs up. We have been showing her how to roll back to her back but she just gets too upset. She also has a new interest in pulling on her line (not good at all). I knew this day would come so we are taking many precautions to hide the line to prevent her from pulling it out. It's just really hard to hide and keep it away from the diaper area to avoid infection. I made a sleeve that velcros around the line to keep it out of her site. Hopefull this will deter her for a while.
I think we may be getting teeth soon or at least I am hoping. She has taken a disinterest in her bottle feeds which isn't the end of the world because I have two other ways to give her nutrition (NG tube and her central line). It is however frustrating because ultimately our goal is to have her get all of her nutrition by mouth. I was always so thankful that Juliana didn't have any oral aversions from her lengthy intubations. I am hoping that the reason for this sudden disinterest is that she teething and that she will soon get back to her old bottle gulping self. She is however taking her cereal just fine. She is only taking 1/2 a tsp with formula but the belly seems to like this so we will stay here for a while.
I am not sure if I shared the news of Juliana's hearing loss. It was a bit hard for me to swallow. I am not really sure why because hearing loss isn't nearly as life threatening as chronic lung disease or short bowel syndrome. Juliana has profound hearing loss in her left ear and severe loss in her right ear. At least I can stop telling little Omar to turn the volume down when he is playing his keyboard. She is scheduled to be fitted with an amplification device that will basically turn up the volume for her. She can hear noises that are classified as extremely loud but can't hear noises that are very loud like the vacuum cleaner, alarm clock, or heavy traffic. So this also means that my family will have to become tri-lingual and learn sign language as well as spanish.
Overall things have been pretty normal for us which is more than I could ever ask for. There are some things on our list of summer activities that we have to be very careful about like going to the park or the beach or taking a walk. The weather has been warming up which makes it a little harder to bring Juliana out. She is really crabby when she's hot and we also run the risk of dehydration. I have been in search of a baby sun tent so that we may be able to spend the day outside and still keep her comfy out of the sun. Fortunately it doesn't seem like it's going to get too hot this summer.
I have some videos and pics of Juliana rolling and laughing that I will try to get up soon. It was pretty hard to get her on camera because as soon as I pull it out she stops what she is doing to look at the camera. She is turning into such a character and we are so blessed to have her in our lives.
Subscribe to:
Posts (Atom)
