More news

Yes, he needs a little haircut in the back. I always hate that first haircut. Julian had a little pony in the back too before I cut it.
It starts off as a hug, but she's keeping an eye on me to see if she can do more.

She's a good picture taker, She loves to say cheese.

To follow the last post:

Babies still have colds. I think this is another one on top of the last because they had started to get better. This doesn't seem as bad though. They still have some congestion and a pretty bad cough. And of course the cough does make Lilly throw up what she eats. The story of my life I think.

This is where my story gets another "bump" in the road. This week the pediatrician that we saw this past weekend called me (never a good sign) to check on Lilly to see if she was improving. I said the thrush was better but still had cold symptoms. She said that she had been talking to the other doctor we saw on Saturday and they thought we might be missing a piece of the puzzle for Lilly since she had such a severe reaction after being on only 1 course of antibiotics. Her immune system should not have been that depressed to allow such a severe case of thrush. They thought when you put that together with her prematurity and her poor weight gain that it warranted a trip to an immunologist. So we have an appointment to another specialist. Chris and I have had such a long, stressful, and emotionally draining time since we were pregnant with the twins. We are soooo ready for things to turn the corner. We just dream of the day when she will eat and grow and be a healthy and strong toddler. I am praying that whatever we find is something simple and an easy fix. I do still believe we haven't pin pointed exactly what causes her not to want to eat, and when we do hopefully things will start to improve. I may have to turn into a mama bear on these doctors to get something done right and in a timely manner. I feel like I have been fighting with the people that should be helping us for a long time. I don't understand how a mother (who is an educated nurse practitioner) can take her child to a doctor and tell them how difficult things are and they minimize my situation. If I ever go back to work, it definitely teaches me to LISTEN to my patients. They always know best.

So,our appt is scheduled for November 10th with the new specialist. Before then we will also have their 18 month check-ups and a follow up with our GI. Hopefully, we will get some improvements and weight gain and some useful information.

I feel like my plate is very full and it takes a lot for me to feel overwhelmed. I pray that one day Lilly will look back at this and laugh at what stress she caused her parents.

Chris and I were also looking forward to a much needed getaway to Las Vegas for his cousins wedding. We really were looking forward to some time together and with his family for a fun family get together. Unfortunately, my mom's surgery got scheduled for the week of the trip so timing was not in our favor for this trip. ( The last time we were suppose to get away, I ended up in the emergency room with a stomach virus- thinking it's just not in the cards for us right now.) We hope that everything goes well for her and she starts to get some improvement in her symptoms. Chris and I will have to wait a little longer for our time together but maybe things will work out for us another time. We hate that we aren't going to be there with everyone. It's so rare that the entire family gets together. We just aren't able to leave our kids with anyone yet. Lilly is difficult to care for because she doesn't eat well, so we are limited right now with who can keep them.

Ups and downs

We've had quite a week here. Here's what happened:

Before I complain about my week I need to start with whatever happens with Lilly and Alex, I am extremely grateful to even get to go through this with them. Every step of the way they beat the odds to be here. From the infertility to being told to chose between which baby I wanted to "save". They are both here and I love every minute I have with them. That being said, we have had a rough week. With the ups, have come the downs, but I'm praying this is just a quick bump in the road.

Both babies had colds and subsequent ear infections from the drainage. So they both went on antibiotics for the ears. Usually, that's where the story ends, and everyone gets better and we move on. Not for me. Lilly had been on hers for about 9 days and we woke up Saturday and we were playing and I noticed that her tongue looked white. I grabbed a flash light and looked at the back of her throat and yep it had white patches on it too. Great! So I called the doctor and they told us to come in. I figured it was thrush, and I was right. I never had to deal with this before and glad I hadn't because it ended up terrible. The doctor said she had a pretty bad case of thrush in her mouth and a bad diaper rash caused by the same thing. She gave us some medicine for the mouth and bottom and we went home. I tried to get several doses of medicine in before the night to help but we had a terrible night anyway. I can't even describe how bad it was unless you were here. Lilly was in unbelievable amount of pain saturday night. She would just scream and scream. We took baths and were giving her tylenol and motrin, but with no relief. I called the doctor in the middle of the night and we took her back Sunday morning. We got another medicine and were hoping that it would do the trick. We had another trip to the pharmacy finally she was starting to get some relief. Not only with Lilly do we have to tackle what ever illness she has at the time, but we also battle with her eating. She always stops eating when she doesn't feel good, and this was for so long that we have some ground to make up.

I forgot to mention that this all happened after our visit to the GI doctor this past wednesday with a not so good appointment. Lilly only gained 1 lb in 5 months and the doctor wasn't very pleased. There wasn't much we could do with her meds, because she didn't gain any weight to allow us to increase the dosages. So we are going to try to work with the eating for a little bit longer before we have to decide what to do. ( I am praying that we don't get to the feeding tube talk) As long as she's developing as she should I think we can buy some more time. Just pray for her.

Alex also saw the GI doctor. (Not for his weight, my big 25 lb boy). He has a major problem with constipation. We decided that he holds his BM's because he is so afraid that it is going to hurt, thus getting more constipated and when he finally goes, he screams bloody mary. Our goal is to help keep everything very soft so he can be "trained" that it isn't going to hurt.

How can pooping and eating be such difficult tasks. Let me tell you they can be.

On the other hand. Julian is doing much better going to school. He is finally going without a fuss and coming home happy. We had open house at school this week also and got to go meet his teachers and see his classroom. My mom was in town helping while Chris was out of town, and Julian was so excited to show us everything. I love to see him happy and excited to go to school again. That is the Julian I know. He is also doing great in school. Most tests and graded papers i get home are 100's. He is still busy playing football tuesday, thursday's and sunday's and now we also signed up for cub scouts. We have had a busy week but it's good to stay busy.

Hopefully we will continue to have a uphill week.

Labor day

Both babies swing during the game.

Alex enjoying his swing time.
Cute boy.
Lilly hanging out watching Julian.





Julian had a great first week of school last week. He was having fun and coming home telling me about everything and seemed to really enjoy it. Then we had a 4 day weekend for Labor day and things have fallen apart. Tuesday morning we woke up and were getting ready to go to school and Julian is crying telling me he doesn't want to go to school. It was breaking my heart to watch my big boy so distraught about having to go to school. I just wanted to let him stay home but I knew we were going to have to just make him go because this is going to be what he does from now on. I think he is still adjusting to going to school all day, every day. (Kindergarten here was only half days, so he stayed home with me, went to school for a few hours and then returned to me.) He says he doesn't like school because it is too long and he misses me too much while he is there. He is my sweet, mama's boy. I have loved every minute we've been together and I think all the time we have been able to spend together has helped make him into the sweet, loving and smart boy he is. This is also so not like him. He has never had any problems going to school since his 2 yr old preschool (his first time away from me), and he loves to be social and be with his friends. He also doesn't have any problem leaving me to spend a couple days with his grandparents, or go to camp at the beach. I did dig a little deeper and also found out he is afraid of the "drills" they have to do at school, specifically the fire drill and the "lock down" drill (Julian calls this the bad person drill). I think it is terrible that we have to prepare our kids for what to do in case some crazy person enters the school and tries to hurt people. We never had to do that we were children and I think it is awful to make our kids learn about things like that so young. Julian is such an innocent child and the thought of something like that truly scares him. I think it makes him feel unsafe at school. I have tried to reassure him that these are just for practice and the school is very safe to go to. Hopefully, we will get better and he will start to feel more comfortable leaving me. He did ask me if I had ever heard of homeschooling, so he could stay with me. I said yes, but how did you. He is always very quick witted to respond to things. It was hard not to laugh as my child is crying and very upset. We'll have to see how today goes.

Friday, we decided to venture out again. (Being brave taking 3 small kids out). We went with some friends to Lancaster to go to a children's hand's on museum and a dairy farm. All the kids really enjoyed it. It was a little crazy having to keep up with the twins when they wanted to go in different directions, but we managed and I'm glad I took them out. We then got lunch and ate at the dairy farm and played on the playground. The kids were exhausted by the time we were done. Lilly fell asleep in the car within a few minutes. Things were going great until we were about 15 miles from my house. (we did go 1 1/2 hrs away). There was a bad wreak on the highway and both sides were shut down. I finally got turned back around, and tried to make my way home another way only for that highway to be stopped as well. Finally it took 4 hrs to make it home and everyone was well spent by the time we got home.

Saturday, we went to see Chris's boss and his wife that just moved to PA from CT. We had a wonderful dinner with them and the kids all had a lot of fun. It was nice getting out of the house to see some friendly faces. I miss being able to go out to dinner with my friends and enjoy some adult time.

Sunday, Julian has his football game and we all went. It was a beautiful fall day, and a great day to be outside. It's nice because the field is right beside the playground so the babies could swing and play while Julian was playing. Julian did great. He is really starting to catch on and enjoy himself. Chris loves watching him out there and I surprisingly do as well. I didn't think I would like him to play football, but it has been so much fun. Julian gets to play with his friends, and I get to have a chance to meet lots of people. I think it's good for Julian as well to get out and exercise and socialize with everyone.

Monday, was a catch up day from being so busy during the weekend. Chris and I got some stuff done around the house and had some good family time with the kids. It's nice having Chris home. Things just go so much smoother having another set of hands. The only downside is Sunday the babies came down with a cold. Runny noses, and sneezing and low grade fevers. I know they probably got it from the kid's museum. One day with touching other things that other kids have touched and we get colds. I can't imagine how many times they would get sick if I weren't so fortunate to stay home with them, and not put them in daycare. Alex, especially seems to pick up something from most public places like that. (he also got a cold from the church daycare the one time we took them). I did take them to the doctor yesterday and make sure neither had anything that needed to be treated like an ear infection, but nope just colds. Colds are bad, because their is nothing they will give kids to help with the runny noses, other than Tylenol. I like the old days where you could use medicine on kids. Nights have been rough. The past 3 nights, we've had both babies in the bed with Chris and I and occasionally Julian comes in. I do pray these are short lived. I hate it when Lilly doesn't feel good because she doesn't have an appetite and doesn't eat. Not what my little peanut needs. Hopefully all things will continue to improve this week.

A lot going on

Julian's first day of school

She's so funny, giving a big laugh. She actually wore the bow for a whole 10 minutes also.
Looks like driving Ms Daisy

Julian's team
#16



house is looking much better with our new sidewalk and grass is coming in better.
Lilly loves Julian

Sharing Mommy

Saying Cheese
Lilly sitting with Julian upstairs watching TV

Alex got his first boo boo

I know I keep saying it but I don't know where the time goes. Suddenly it is the end of the day, and I'm just ready to go to bed. We've been very busy lately.

Julian started playing Flag football this August. He was having practice 3 days a week from 6:30-8. (not prime time for me to have to take the babies with me). He's been doing great. It has been so fun watching 20+ kids (5-6 yrs old) learn how to play and have so much fun. Some of the kids played last year, but we got here too late to sign up. It's been a blast watching him interact with the other kids, and he is already soooooo interested in the cheerleaders. At the first game, he asked the team mom what the cheerleaders were doing at the game and she said they were there for them and he was so excited. I'm already thinking of the future with a teenage boy wooing after the girls. He also had their first game this past Sunday. He did so good and chris and I were so impressed with him. I never thought I would like to watch my son play football but it was really neat and a good chance for our family to get out and meet people and get involved here. I have met some really nice mom's and hoping to get more involved this year now that the babies are a little older. We also started our first week of 1st grade this past Monday. I can't believe he's already in 1st grade. He's becoming a little boy instead of my baby. He now goes all day everyday and we are getting used to that schedule. It is long days, especially with football and speech after school some days, but hopefully he will continue to do good. He told me last night when we finally got home at 8 pm that he didn't like school because he missed me so much while he was gone. I know he was just over tired and he gets very attached the more tired he is. This is a big change for him though. Usually he has just gone to school for a couple hours a day and then he's home with me. Just another transition he's going to have to make it through. Thank goodness he is such a social butterfly and finds friends easily and loves to interact with others. He told me his teacher called him Mr. Chatty Kathy on his first day of school. I'm waiting for the note home that says he talks to much. It always comes. He is also into "big boy" shows on TV instead of cartoons. I miss seeing the cartoons, and want him to stay my "little boy".

We also had a recent trip to the eye doctor for Julian. He had been telling me that his eyes get blurry every once in a while. The doctor said he did have astigmatism in both eyes but he didn't think his vision needed corrected lens yet. That was good. I didn't feel like having him have to go through that yet. We just have to keep an eye on it.

Alex and Lilly are doing great. Both are busy walkers and all over the place. We started going to the Little Gym to take classes and let them have some fun outside the house. Lilly was so excited when she was finally able to go inside the gym instead of just looking through the door at Julian. Lilly is so independent she just goes from one activity to the next. I think she is going to be a little gymnast when she gets bigger. Alex is still very clingy there, but does let me put him down every once in a while to do some activities. I used to take these classes with Julian when we were in SC and he had so much fun. I'm glad I'm able to take the babies as well and do something special with them. They are getting to be little toddlers. Alex just cut 3 molars and I'm sure Lilly's are on the way. It's so much fun to watch their little minds work, they are so smart. They listen and follow directions, and explore and babble. We haven't really started talking yet, but really do understand everything. It will be nice when they can start communicating more.

We did meet with nutritionist about Lilly. She gave me some tips of trying to add calories to what she will eat. Our problem is how much she eats vs what she eats. she just doesn't like to sit down and eat. Plus, it doesn't help that she is so incredibly active that she burns off more calories than I can get her. It's bad when I go to the grocery store and look for snacks with alot of calories. Poor Alex, is going to have a weight problem one day because I try to find the most caloric food as possible. Hopefully she will start to like to eat more soon. but it is so fun watching them grow and change.