HAPPY TURKEY DAY! I hope everyone had a wonderful holiday! I don't know about you, but I am so ready for the Christmas season this year! Last year I was stuck on bed rest and was not in the Christmas spirit.
We had a quiet Thanksgiving. We normally have my sisters, Greg, and the dogs down for the long weekend. This year there were going to be two newbies! But, we decided it would be best if we canceled to keep Ailyn healthy. We missed you guys!!! Thanksgiving wasn't the same. Next year for sure!
Ailyn had an appointment with the pulmonary doctor. She was very happy with Ailyn's 2 pound weight gain since she last saw her. Her lungs sounded great and I got a huge pat on the back for keeping her so healthy :) She wants us to push the pediatrician to get the RSV shot in. There have been a few cases of RSV and she knows other preemies who have already got the shot. I have called many times and even had my insurance company call. We were told the RSV shot is back ordered because they are making the H1N1. I am going to try again on Monday and hopefully it's in.
Ailyn will still be on the apnea monitor when she sleeps for another 2 months. Aaron is not happy with this, but I am more than happy. It's peace of mind and I am able to sleep.
Even though this doctor doesn't deal with feeding issues, we talked about Ailyn's feeding issues. I was able to feed her there and show her what Ailyn does while she eats. She agreed it's not normal and wrote a request for us to get another feed study. We talked about a feeding tube....which is the very last resort for us but she has seen another preemie that was born at a small gestation size like Ailyn benefit from one. She told us not to unless she drops off "her" growth chart. On Monday I plan to call the GI and set up a feed study.
What are her feeding issues, you ask? Since we started feeding Ailyn in the NICU she has always eaten slow. With her being so active and taking so long to eat she burns calories. She also is not able to take many ML's per feedings. She wiggles around and cries out after 1 ounce. We struggle to get 3 ounces in her every 3 hours. The 30 calories was too much for her, so we have since went back down to 27 calories. We also have changed back to the preemie formula (Neosure). In the past 12 hours, she seems to be more comfortable during feedings. It's really stressful on us. We don't know if she is in pain. We know we are doing everything we can for her and have a great team of doctors working with us to help her. We are hoping it's due to her prematurity and it will resolve itself as soon as she is big enough.
We have a quiet week ahead before more appointments start back up. We have the big NICU doctor appointment next!
* sorry about the spelling error! I was using spell check and picked the wrong word* PHEWWW, that was a long day!!! We left the house at 9am and got home around 4pm. Ailyn had a renal ultrasound and appointment today. We got some good news and some "ok" news.
At birth, Ailyn's kidneys took a huge hit. Her kidneys went into survival mode to keep her alive. She peed blood for 2 weeks. It was so scary to change her diaper and see strait blood. Everyday we prayed that the bleeding would stop. Her creatinine level was at 3.1 which is very high. Over weeks this level dropped and the bleeding stopped. The ultrasounds showed "black spots" that confused all the doctors. At one time they said it might be "calcification's". When Ailyn was readmitted to the hospital in September she had a renal ultrasound. Her creatinine level was down to .44. The "black spots" were still there, they wanted to watch her every 3 months for the first year, then once a year after that.
So that brings us to today. The good news is that the creatinine level is down to .3 (normal is .2) and the "black spots" are GONE! The doctor thinks that it was "pockets" of hemorrhages (Aaron and I can not recall the exact wording) and that it was just "damage" from the trauma at birth.
The doctor ordered blood work because some levels were not quite right on the last test and could be signs of kidney disease BUT also could be the blood sat too long before testing.
Ailyn's size could be a sign of kidney disease too, since we already have a nutritionist through GI, they are going to all work together to keep in touch with Ailyn's progress. The increase in calories should not be too much of an issue but they are going to look into it.
As we were leaving they stopped us and wanted us to come back in to talk to the doctor. Ailyn's blood pressure was too high and they wanted to retake it. It still was on the high side but nothing that they were too worried about. This also could be a sign of disease. Since she is so closely followed with various doctors, we are going to check her blood pressure each time to keep an eye on it.
Overall, I think the appointment went well. We were in a well known hospital where people travel hours to see a doctor. After seeing some children with horrible diseases , we felt so fortunate to have two healthy children. So instead of getting upset about the appointment, I am just thankful that Ailyn is here with us. She will most likely have kidney issues when she is older but overall, I think she is pretty darn lucky :)
Happy 7 months to our baby girl!!! Ailyn is now 9 pounds and 22 inches. Today we had a GI appointment. Ailyn is gaining the weight she needs but no "extra". We were given two options, a feeding tube (for the feedings she does not finish) or increase her calories to 30 calories per feeding. We chose to increase her calories. Formula has 20 calories, they give you a recipe to make it 30 calories. So basically it's just adding more formula than water. The doctor said she was healthy and looked great....she just needs a little boost. Ailyn has always been very slow at feeding, she takes her sweet time. Sometimes she will take up to 35 minutes. Since she is so active AND takes forever to eat, she loses all those calories. We are also changing her formula back to the preemie formula. It has more protein, vitamins and calcium then regular formula. We are going to hold off on starting cereal until she is 6 months adjusted. The nutritionist said cereal will just fill her up, and that cereal and baby food doesn't have many calories. They are afraid she will fill up and won't take a bottle. This week is a very busy week with therapy and doctor appointments. I am thrilled to be getting out, I just wish it wasn't were germs like to go too!!! Thank you for following Ailyn's story! I know many of you look forward to seeing her updates. I really appreciate your support!
Someone above is watching over us this fall, we have had so many beautiful days to get outside and enjoy before the dark cold days set in. Normally we just stay home and play outside, but today was so warm. So I packed the Lysol wipes and we drove up North. We didn't know where we were going, we just drove..... we ended up at a fun little state park. Not many people were there since it's more of a ski resort area. Perfect for our Ailyn! We had a great day! I don't want the winter weather to find us!!!
I had to share the photo above. I was sitting on the couch and I looked out the window to see this...... they were having so much fun. So far November has been so beautiful, we have been able to get outside everyday for some vitamin D :) I am proud to say we made it into another month of keeping Camden healthy!! Anyone who knows us, knows that Camden will catch every single cold out there. His nose runs from fall to spring. Being secluded sure is lonely but it is really paying off. AND! Now that Camden and Ailyn are flu and H1N1 protected, I can sign Camden up for a class. He has not decided what he wants to do yet. As you can see above, Ailyn is really starting to think Camden is the bomb! He will walk by and she will just grin at him. He really enjoys seeing her interact with him. Look at that chub!! She got her shot today and I asked for a weight check....DRUM ROLL PLEASE!!!!!!!!!!!!!!! 8 pounds 13 ounces!!!!!!!! 7 times her birth weight! Even though she is still on the small side, we are thrilled with this weight. I had to call her GI doctor last week. She was showing signs that her reflux was bothering her. She was taking 45 minutes per feeding and wiggling the whole time she ate. Her doctor raised her Previcid. It took a good 4 days to fully kick in but when it did, she was like a different baby. I was even able to add a ML to her feeding.
We have therapy in the morning. I think Miss Sarah will be very happy with Ailyn's progress. She is now reaching for toys and holding them. I keep her in a bouncy seat when I shower, today I listened to her talk to her "friends", this is also new and something Miss Sarah is waiting to see. I try not to worry about meeting milestones, but it's very hard not too. We breathe a sigh of relief every milestone.
So ONE more pound and we can let Ailyn sleep longer than 3 hours!!! This makes Mommy very happy!
As I was sitting on the couch reading some of my favorite photography blogs, I got an idea for a photo shoot. I quickly gathered my family and took....dragged them outside. Football was on, Camden was busy tearing paper into a million pieces to make his "project" and Ailyn of course was in a happy mood, talking to her giraffe. I knew it was warm out but WOW! High 70's.We didn't have to go far, just next door. For a spur of the moment photo shoot, I think they did very well. And, how good looking is my family??? I am so blessed to have each of them in my life.
Camden was all over Ailyn when he got home. He kept telling me how much her missed her. She sure missed him too!! Please don't get hurt feelings seeing Logan at our house. His Mommy and my Mom make sure to keep him isolated at home before coming. Logan loves Ailyn.....even though he calls her "Evan" which is his other cousins name!! Ailyn and Evan are the same age....so I guess it is a little confusing to him :) We made drums today! We are learning about Native Americans. Camden is really getting into it, I think he will have a lot of fun this month learning all about them. Both boys really enjoyed this project! Logan had some issues with the glue........
My friend Emily makes the cutest custom t-shirts. We have had many Emmy Babys over the years! You can even see Camden, Malia and Logan in her slide show. Emily is hosting her first giveaway on her blog! Just click on the My Emmy Baby blog on the right hand of this page.
My baby comes home tomorrow! It's been too quiet around here. Thank you Nanna, PopPop, and Aunties for taking great care of Camden.
For the first time in 4 1/2 years, Camden is away from home. My mom flew down to pick him up to spend the week at her house. He is loving spending time with his cousins, Nana and PopPop. I call 3x a day to hear his voice. He will talk to us then say "Mommy, hold on for a minute" put the phone down and play with his toys! He doesn't want to get off the phone, he just wants me to sit on the phone. And, thanks to his Mommy/Daddy pillow he can hug us whenever he feels homesick (thanks Auntie) We miss him so much! It's so quiet around here. Aaron and I are enjoying the one on one time with Ailyn.
I am catching up on lost sleep and nap when she does. I didn't realize how much Camden entertains Ailyn! I have to find ways to keep Ailyn busy throughout the day. It would be a lot easier if we could go out during the day!!
As you can see below she is getting better with belly time.....even if we cheat a little :)
HAPPY TURKEY DAY! I hope everyone had a wonderful holiday! I don't know about you, but I am so ready for the Christmas season this year! Last year I was stuck on bed rest and was not in the Christmas spirit.
