Thursday, November 13, 2008
A trip to the doctor...again
Kennedy's cough has gotten progressively worse over the past two days so this morning I called the pediatrician and made an appointment for this afternoon. Her sats were down again and the doctor thinks that its because of her BPD. We upped her oxygen to 1/4 lpm and we are going to put her back on Diuril. The doctor also ordered two breathing treatments- albuterol and pulmicort to be delivered by nebulizer. At the doctors office she did well with the albuterol by she started coughing so bad she trew up while we were doing the pulmicort treatment. We are going to try it again tomorrow and see how she does with it, but if she has the same reaction then we are going to discontinue the pulmicort. The nebulizer is being delivered tonight so we can start treatments right away and the diuril will be ready tomorrow. Stay tuned and I will update the blog and let you all know how she is doing an a few days.
Wednesday, November 12, 2008
National Prematurity Awareness Day
Each day in the U.S. more than 1,400 babies will be born prematurely. November is National Prematurity Awareness Month and November 12 is national Prematurity Awareness day. Celebrate the day by signing the March of Dimes Petition for Preemies here and visiting the March of Dimes website to learn more about premature birth. Help spread the news about premature birth by passing on this blog post to your friends so they can read the on going story of my favorite preemie, Kennedy.
Tuesday, November 11, 2008
Oy Vey! What a weekend, what a relief.
First thing first- Happy six month birthday Kennedy!!!!!
So last week Kennedy had alot of changes. We attempted to drop 3 meds, she got put back on oxygen and we had appointments 4 out of 5 days. Friday started off with quite a bit of excitement. Kennedy threw up 3 times in as many hours and resulted in two baths for her and several wardrobe changes for both of us. At our GI appointment on Monday the doctor said to start Kennedy back on the erythromycin if she started to spit up a lot. I thought we were in the clear since she had done fine all week, but after the morning vomit-fest I went ahead and started her back up again. She was also very snotty and had started to cough a bit. It was a little concerning to me since we had been out and about so much that week so I decided to keep a close eye on her. During the day her temp was reading pretty low so that night I ended up calling the pediatrician when it hit 95.7. She said to bundle her up and recheck in a few hours and if it was still low to go to the ER. At 2am she was still reading low so we packed her up and took her to an all night urgent care in the hopes that we wouldn't have to pay the $50 for the ER visit. I ran in and explained the situation and they pretty much told me that they didn't want anything to do with her given her medical situation (extremely low birth weight, on O2 plus tons of meds) They said take her to the ER. She was smiling, happy and active and other than the snotty nose and the cough seemed ok so Shawn and I decided to take her temp one more time before dragging her into an ER filled with who knows what kind of germs. Up to this point I have always taken her temp under her arm. It's how they did it in the NICU and its always worked fine so I figure why fix what isn't broke. This time I broke down and did a rectal temp and what da ya know?! Perfect temp. So from now on I will be taking her temp the good old fashioned way. Her cough and snotty nose continued through out the weekend as did the vomiting on a much smaller scale, so Shawn and I kept a pretty close eye on her. We knew that all of the symptoms could be caused by the recent med changes and O2 but they could also be signs she was getting sick so we were a little worried. Today was a scheduled doctors appointment so we were very relived to find out that Yes the snotty nose is probably from the oxygen and that we should start using the humidifier 24 hours a day, and the cough is something normal that baby's start to do around 3 months (Kennedy's adjusted age) and we were lucky enough that she did it at the doctors office and the doctor said it was a normal cough. While we were at the doctors they checked her sats and they were at 92 so we had to go up on her oxygen flow from 1/16 lpm to 1/8 lpm. Kennedy also got four shots today so tonight and tomorrow should be fun.
So last week Kennedy had alot of changes. We attempted to drop 3 meds, she got put back on oxygen and we had appointments 4 out of 5 days. Friday started off with quite a bit of excitement. Kennedy threw up 3 times in as many hours and resulted in two baths for her and several wardrobe changes for both of us. At our GI appointment on Monday the doctor said to start Kennedy back on the erythromycin if she started to spit up a lot. I thought we were in the clear since she had done fine all week, but after the morning vomit-fest I went ahead and started her back up again. She was also very snotty and had started to cough a bit. It was a little concerning to me since we had been out and about so much that week so I decided to keep a close eye on her. During the day her temp was reading pretty low so that night I ended up calling the pediatrician when it hit 95.7. She said to bundle her up and recheck in a few hours and if it was still low to go to the ER. At 2am she was still reading low so we packed her up and took her to an all night urgent care in the hopes that we wouldn't have to pay the $50 for the ER visit. I ran in and explained the situation and they pretty much told me that they didn't want anything to do with her given her medical situation (extremely low birth weight, on O2 plus tons of meds) They said take her to the ER. She was smiling, happy and active and other than the snotty nose and the cough seemed ok so Shawn and I decided to take her temp one more time before dragging her into an ER filled with who knows what kind of germs. Up to this point I have always taken her temp under her arm. It's how they did it in the NICU and its always worked fine so I figure why fix what isn't broke. This time I broke down and did a rectal temp and what da ya know?! Perfect temp. So from now on I will be taking her temp the good old fashioned way. Her cough and snotty nose continued through out the weekend as did the vomiting on a much smaller scale, so Shawn and I kept a pretty close eye on her. We knew that all of the symptoms could be caused by the recent med changes and O2 but they could also be signs she was getting sick so we were a little worried. Today was a scheduled doctors appointment so we were very relived to find out that Yes the snotty nose is probably from the oxygen and that we should start using the humidifier 24 hours a day, and the cough is something normal that baby's start to do around 3 months (Kennedy's adjusted age) and we were lucky enough that she did it at the doctors office and the doctor said it was a normal cough. While we were at the doctors they checked her sats and they were at 92 so we had to go up on her oxygen flow from 1/16 lpm to 1/8 lpm. Kennedy also got four shots today so tonight and tomorrow should be fun.
Thursday, November 6, 2008
Two steps forward one step back
Two steps forward one step back. I heard this term more times than I care to remember in the NICU. I hate it. I hate the sound of it and I hate what it stands for. Today was kinda a two steps forward and one step back kinda day.
I wasn't feeling well this morning. I have been feeling really crappy lately in general. Usually I feel ok at the start of the day but at the end I feel completely exhausted. I think this week has been worse because it has been one of those weeks where we have had appointments every day and I just can't get a minute to slow down and take time for myself. Today I felt exceptionally bad. So bad that I woke Shawn up and asked if he could call in because I didn't think I could drive down the hill and back by myself and we had an appointment that Kennedy had to go to. It was a High Risk Clinic appointment. We meet with a whole team of people for Kennedy. I was really hoping the Nutritionist would reduce the calorie mix on Kennedy's formula but she said she still wants to keep it at 30 calories for now even though she is doing really well. I took in the results of some blood work that was done on the 30th and they decided to stop Kennedy's Diriul and Mag Chloride. That was a huge victory for us- consider it the two steps forward. Not only does Kennedy have way less meds to take, but now none of them need to be refrigerated which makes traveling with her soooo much easier AND we don't have to refill the Mag again which is great because its not covered by insurance and costs around $50.
So whats the step back you ask? Kennedy is back on oxygen. When they did her pulse-ox read she was only satting 92 (out of 100). 92 is not horrible, but its not great either and they are concerned that she is satting even lower in the higher elevation where we live and even lower while she is sleeping. As a precaution they are having us keep her on 1/16 lpm and they will recheck her in a month when we go back. I'm not gonna lie. It upset me. No being on oxygen is not the worst thing in the world, especially compared to what we have been through. Even though it is a really low flow rate I still cried a little and felt upset. I was so proud that she didn't have to be on oxygen when she came home. Its just a little disappointing to me. Oh well. I know it could be A LOT worse so I guess I will declare this the official end to my pity party about oxygen.
I wasn't feeling well this morning. I have been feeling really crappy lately in general. Usually I feel ok at the start of the day but at the end I feel completely exhausted. I think this week has been worse because it has been one of those weeks where we have had appointments every day and I just can't get a minute to slow down and take time for myself. Today I felt exceptionally bad. So bad that I woke Shawn up and asked if he could call in because I didn't think I could drive down the hill and back by myself and we had an appointment that Kennedy had to go to. It was a High Risk Clinic appointment. We meet with a whole team of people for Kennedy. I was really hoping the Nutritionist would reduce the calorie mix on Kennedy's formula but she said she still wants to keep it at 30 calories for now even though she is doing really well. I took in the results of some blood work that was done on the 30th and they decided to stop Kennedy's Diriul and Mag Chloride. That was a huge victory for us- consider it the two steps forward. Not only does Kennedy have way less meds to take, but now none of them need to be refrigerated which makes traveling with her soooo much easier AND we don't have to refill the Mag again which is great because its not covered by insurance and costs around $50.
So whats the step back you ask? Kennedy is back on oxygen. When they did her pulse-ox read she was only satting 92 (out of 100). 92 is not horrible, but its not great either and they are concerned that she is satting even lower in the higher elevation where we live and even lower while she is sleeping. As a precaution they are having us keep her on 1/16 lpm and they will recheck her in a month when we go back. I'm not gonna lie. It upset me. No being on oxygen is not the worst thing in the world, especially compared to what we have been through. Even though it is a really low flow rate I still cried a little and felt upset. I was so proud that she didn't have to be on oxygen when she came home. Its just a little disappointing to me. Oh well. I know it could be A LOT worse so I guess I will declare this the official end to my pity party about oxygen.
Monday, November 3, 2008
A trip to GI, a call from the doctor and a prayer request
Kennedy had a GI appointment today. They did the usual doctor visit stuff; weight, length, head circumference, listen to her heart, feel her belly -all that junk. They asked me how much she eats and how many wet and poopy diapers a day. They said she didn't look jaundice and to have our pediatrician send a copy of the blood work to their office. He said we can try taking Kennedy off the Erythromyicin since it is such a tiny dose anyway, but if she starts spitting up we need to put her back on. While we were waiting at the GI office we ran into some friends from the NICU- The Bonomos. They recently got to take their little girl home, but they still don't have a diagnosis. Right now their daughter is being treated for symptoms, but they have no idea what is causing them. She is also having a tough time with feedings lately. We would like to ask all of our religious readers to please pray for their family and their daughter. Click here to read about their journey.
Upon returning home We had a message on our answering machine from our pediatrician. Not the nurse, but the actual doctor. She said she needed to discuss Kennedy's recent blood work. Of course I called immediately but they were out to lunch and the service answered. I was then left to ponder what could possibly be so wrong with Kennedy's blood work that the doctor herself would be calling me. It was 45 minutes until they were supposed to be back in the office. I called exactly at 1:30p and SURPRISE they weren't back yet. So 3 calls and 15 minutes later I finally got through. I spoke with the nurse, but she couldn't help me. She said I had to call back in 5 minutes when the doctor gets in. Ok now I know its serious. I want to throw up. What the H-E- double hocky sticks could be wrong. Wait- I thought they arent supposed to give bad news over the phone. Maybe its so horrible that they cant wait for me to come in. Dear God don't these people know how long 5 minutes is! Finally I get through to the doctor. Her phosperus levels are too high so she wants me to adjust one of her meds. Thats it. No biggie just cut back on the Phos-NaK to 5ml instead 7.5ml. Her liver enzymes are a little off, but her billi looks good and so does everything else. I thought the phone call stress was supposed to end once we got her home. I guess not.
Upon returning home We had a message on our answering machine from our pediatrician. Not the nurse, but the actual doctor. She said she needed to discuss Kennedy's recent blood work. Of course I called immediately but they were out to lunch and the service answered. I was then left to ponder what could possibly be so wrong with Kennedy's blood work that the doctor herself would be calling me. It was 45 minutes until they were supposed to be back in the office. I called exactly at 1:30p and SURPRISE they weren't back yet. So 3 calls and 15 minutes later I finally got through. I spoke with the nurse, but she couldn't help me. She said I had to call back in 5 minutes when the doctor gets in. Ok now I know its serious. I want to throw up. What the H-E- double hocky sticks could be wrong. Wait- I thought they arent supposed to give bad news over the phone. Maybe its so horrible that they cant wait for me to come in. Dear God don't these people know how long 5 minutes is! Finally I get through to the doctor. Her phosperus levels are too high so she wants me to adjust one of her meds. Thats it. No biggie just cut back on the Phos-NaK to 5ml instead 7.5ml. Her liver enzymes are a little off, but her billi looks good and so does everything else. I thought the phone call stress was supposed to end once we got her home. I guess not.
Sunday, November 2, 2008
A big girl has a busy week
Ok first and foremost- Kennedy is HUGE! I weighed her on Wednesday (3 days after her 9lb 4ounce weigh in) and she was 9 lbs 10 ounces. I swear by now she is a good 10 pounds. I would like to thank Johelen for this post about how her sister bought her a baby scale. Soon as my mom read it she went out and got me one and it has been so nice to have now that the doctor's visits are getting further and further apart. I can't tell you how weird it is going from knowing your baby's weight on a daily basis to having to only get it read every few weeks at the doctors.
Kennedy had a pretty big week this week. Monday morning Kennedy had an eye appointment. They are looking very good and we have a follow up appointment in a month. After that it should be four months and then every year unless we start to notice she is having problems. After the eye appointment we went to the airport to pick up my sister and had our car selected for a random search. That was fun but the airport police took mercy on us took one look at the trunk and thankfully didn't make my unpack Kennedy or the rest of the crap that she is required to travel with.
My sister Christi flew in from Arizona for a few days to help me clean and organize my office which had become a dumping ground for all things paperwork related since Kennedy was born. While she was here she also cleaned the freezer. It was pretty nasty since I hadn't been able to look at it since the breast milk incident. We thought it might work so we plugged it in, but after a few hours it died again. I think its for the best though. We are going to get rid of it and I won't have to remember that horrible night I lost all my beast milk every time I see it. I do miss having an extra freezer though. Christi left on Wednesday and it was a pretty quiet rest of the week.
Shawn's dad (Dan) came out on Friday to visit with us and Shawn's brother's family. Dan stayed with us last night and went home this morning. We got scolded for not sending pictures. Both he and my mom have had to hijack pics from the blog to put on their computers so I guess I better start e-mailing out pictures.
Kennedy has done amazing things in the two weeks since the Early Start people were out doing their assessment. She has hold on to a plastic link for a minute or two and has really become more vocal and more alert. She is spending more time awake during the day too. Some other huge news- we retired the four ounce bottles!!! We are now offering her between 120 ccs and 130ccs a feeding she generally takes around 100 and a little less at night but she has just really jumped up on her feedings the last 3 days. Also we switched to a level two Dr. Brown nipple and she seems to be doing really well with that. Hopefully the nutritionist will see fit to allow us to mix her formula for fewer calories per ounce when we go on Thursday.
Kennedy had a good first Halloween. I didn't get her a pumpkin or costume like I had wanted, but life kinda got in the way again. We did get her dressed us in a hat and sleeper and took her next door to Grandma and Grandpas to trick-or-treat. She got quite a stash since she was their only trick-or-treater.
It's a little blurry but its the closest I have come to getting a full smile on camera.
Kennedy with her loot
Grandma holding Kennedy
Grandpa Dan and Kennedy
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