Frustrating

Addison pulled her tube out again this morning. I wasn't to concerned about it, because today was the day that the home health nurse comes to check on her. Well, she called me this morning to tell me that the insurance company has decided that Addison no longer needs the tube because she is gaining weight. Yes. She IS gaining weight BECAUSE SHE HAS THE TUBE! So, I spent most of the morning dealing with that. I called the insurance company who said I had to have the pediatrician call them to consult on why she still needs the tube. I was more than happy to do that, because I knew Dr. Baumboree would have no problem calling the insurance company. He was very irritated when I called him. He said that this happens all of the time, and usually the person that is making the decisions doesn't even have a medical background. My first reaction was how does the insurance company think that they know more than the pediatrician who is treating her. You hear about this kind of thing happening, but you never think it will happen to you. Anyway, Dr. Baumboree said that since it is out and we are treating her for an infection to go ahead and see how she does on the bottle tonight and I can bring her in tomorrow for them to put the tube back in. In the mean time he will fight with the insurance company. The home health nurse said that the insurance company told her that I could put the tube back in when Addison pulls it out. I don't think so! A nurse needs to do it, because it can go into her lungs and then we really have a problem. As it is, I have to check it every feeding to make sure it is still in her tummy. On the bright side, Addison is taking more from the bottle. She is up to 90 ml on her own, but I'm not sure if that is enough for her to continue to thrive. I guess we will see with her weigh in in the morning.

Change of Plans

Well, the y-cut nipple did not work. She did okay with it when she was awake, but when she falls asleep she chokes because it comes out to fast. However, we bought some level 3 6 month nipples and she seems to be doing well with those.

I took Addison to the doctor yesterday, because she was acting fussy on the bottle and just in general. I wanted to make sure she didn't have an ear infection before I took her to get her hearing tested. Well, she has an ear infection. So, we cannot get her hearing tested today and we are being referred to a ENT doctor. Our pediatrician is calling one today. We may have to get tubes before her mouth surgery. I'm not to concerned, because I know several people who's children have gotten them and they love them. It's very frustrating with her getting so many ear infections, so anything that will help with that I am all for.

New Bottle

We got the y-cut nipple in, and they work! Yay!!! We can stop using the hospital bottles that leak! She doesn't take any more from them than she does from the hospital ones, but it is a truer reading. I think at least 5ml leaks from the hospital bottles in one feeding.

Addison is getting her hearing re-checked on Wednesday. Fingers crossed.

I finally started putting Addison's birth announcements together. Somehow I did not pay to have the ribbon put through them. I can only blame sleep deprevation, because there is no way I would volunteer to tie ribbon when I can pay someone to do it for me. Hopefully I will be able to get them out by next week. I would like to get them out before she is 2 months old. Although, it was really starting to look like 2 years for a while there....so I guess 2 months late isn't to bad.

Regan at Quinn's Birthday Party

Ten Pounds

Addison was 10lbs. 2oz. this morning. We are very happy!! I don't know why, but 10lbs. seems like a milestone. I talked to the pediatrician yesterday, and he said that we can get off of the feeding tube when she is taking 90ml by herself consistently. Not sure when that will be. She usually takes around 65ml by herself, but it can be as low as 40ml sometimes. I asked him if he thought she would get better with it as she gets older, and he said that yes....he does not see this as a permanent thing. As long as she is gaining weight, I am all for it. But it would make my life a lot easier if she didn't have it. She pulled it out again this morning. Luckily it was right before the nurse came to change it, so it was actually perfect timing.

I talked to the financial people at the surgeon today, and the surgery will only be about $2000 with us being responsible for $500 of that. Whew! Matt had me convinced that it was going to be much more than that.

In other news....Regan is not allowed to have her sippy cups in her bed at night anymore. It was a really bad habit that we let her get into this summer. Since we brought Addison home from the hospital it has contributed to some major sleep issues. She was using it as a stall tactic to not go to sleep. Even worse, she was waking up in the middle of the night wanting it. So we made the decision to take it away. It was a bad the first couple of nights with her going to sleep, but I think it was the right decision. She is doing much better with going to sleep, and she has not woken up in the middle of the night since. Thank goodness! Getting up with one is enough!

Surgeon

We didn't really find anything out at the Plastic Surgeon other than he is not in our network. Which means that we will have to pay 20% of the costs. However, he works like an in network doctor in that they take the insurance company write off. So, we only have to pay 20% of what the insurance company says it should cost. I swear, Addison is only a month old and she is already trying to break the bank. It can only be downhill from here. : ) I just have to keep reminding myself that this could be so much worse, and Matt and I are fortunate that he has a good job so this will not be the financial burden that it could be.

They are now saying that they will do the surgery between 6 and 8 mos. I am really hoping for 6mos. The sooner the better.

Regan and I went to playgroup for the first time in a long time. It is so nice to have the babysitter to keep Addison and to help me with feedings. But I also have gotten to nap for the past two days when Regan napped while she kept watch over the baby. I feel a little spoiled, because I know I am getting more sleep than most mom's of two right now.

Story Time

Sometimes Addison joins us for storytime, and tonight was one of those nights.

Tummy Time

Addison did her first "tummy time" this morning. She doesn't seem to mind it like her sister did. Regan used to start to fuss almost immediately when you would put her on her tummy. Addison stayed for several minutes before she started to fuss. Regan told me that she needed "to read to my baby sister." She never actually read to her, but had the prayer book open and flipping through the pages.

Regan loves my prayer book. I don't know if it is because it is red or if it is just because it is my book, but she loves it. I even read a whole service to her one day and she sat and listened. Maybe she is destined to do something in the church. She loves Veggie Tales, too.

Matt took Regan to New Orleans yesterday for Quinn's birthday party. He forgot the camera, so sorry no pictures. I think it was exhausting for both of them. Matt has never taken her on a trip by himself. Apparently she wasn't very pleasant on the way home. It's a long trip to make in one day. I have done it many times, but it is long. It's much easier to go for the weekend, but we won't be doing that for a while. I think she had fun at the party, though. She was very excited to go to the party I know for sure. She asked Matt all morning "can I go to Quinn's birthday party, please." She loves her cousin Quinn.

Eczema

My grandparents were here this weekend. Pop thinks that Addison looks like him, which makes since because I kind of think that she looks like Aunt Carla. But I wasn't sure if it was just because of the hair. Maybe this means that one of my children will look like me. Not that I think that I look like either one of them, but at least they are in my family.

Matt took Regan to the doctor this morning for her skin. She has these little bumps all over her trunk that she has been scratching. It is mild Eczema, and they gave her a cream for it. If it's not one thing..... I'm actually glad that is all it is. Eczema seems to be pretty common.

I also sent him with a list of questions for Addison. The most important one being whether or not we could add a powdered formula to my milk for Addison instead of continuing to use the human milk fortifier. When we first started her on it everyone kept saying how expensive it was. We didn't really pay attention, because she wasn't taking that much milk and we of course want what we think is best for our child. Well, now we are using four packs per feeding and the cost is starting to add up. We have gone through 200 packs in a week, and it cost $168 for a box of 150. Now we know why everyone kept saying it was expensive. The dietician in the hospital said that we could add the powdered formula, and it would do the same thing. Matt asked the pediatrician this morning, and he said that was fine. Whew! Matt said he was also pleased with her weight, which is 9 lbs. 3 oz.

I think I have found a "mother's helper." That is what they are called when they are only helping you with the children. There is a little girl in Regan's music class that has a nanny. The little girl has been in Regan's music class the whole time we have been in, and the nanny has always brought her. I asked her last class if she knew anyone that would be interested in part time nanny work. Turns out her sister was a teacher and went to work for FEMA for a year in New Orleans, and is now looking for a teaching job for next fall. So, it seems like the perfect situation. I need someone until the summer, and she needs a job until the summer. The only thing would be if she finds something that pays more. She comes on Thursday, and I think I am probably going to hire her. I think it is mostly going to help me to stay sane. Especially since we don't have family near by.

One Month Old

Addison is one month old today. One month down and five more to go before her surgery. I have attached a picture of Regan at one month old for comparison.

My grandparents are here visiting, which has been nice. Especially because as soon as Sue left Regan started saying "I need my Granny." Pop and Lil has been a nice distraction for her. Even if she was bouncing off the walls last night, because she was so excited.

It seems that chaos ensued after Sue left. Addison decided to pull her feeding tube out right before her 11pm feeding. She had tried earlier in the day with no success, but apparently she is like her sister in that she does not give up. We talked to the home health nurse and the pediatrician on call. Both assured me that she would be fine until the morning. Then we either slept through the alarm or it didn't go off. Either way Addison went six hours without a feeding, instead of the three that she is supposed to. I don't know how long she would have slept, because we were still the ones to wake her up. Luckily she was still 8lbs. 11oz., which is what she was the morning before. So, technically she didn't lose any weight. However, when we weighed her last night she was 8 lbs. 14oz. But it will be our little secret.

Sue called today and she has no gas. Apparently her neighbors yard guy hit the gas line and they came out and took her meter. So, now she can't come back until that is taken care of. Yikes! My grandfather has a meeting on Monday, so they can't stay longer. I think I can do everything except take Regan to school. Matt said he would handle it this week. I think we are going to look into hiring someone to help me until after the surgery. As much as I hate to spend the money, I think it will give me piece of mind. Especially because until this problem is fixed we don't know what we will encounter. We have no idea how long we will have the feeding tube.....etc...

Alone

Sue went home for the weekend today, and I did the tube feeding for the first time without someone in the near vicinity to call for help. We survived. She did try to pull her tube out. I saw the number 18 on the tube, and the 20 should be right by her nostrel. I was able to push it back in, and it was still in her tummy. Crisis averted. I also forgot to put her antibiotics down the tube, and tried to do it by mouth. Big mistake. But we got through it. Regan was sleeping, so that helped a lot.

Weight Gain

Addison is up 5 ozs. since we came home from the hospital. Her weight now is 8 lbs 9 oz. Yay!!! It is a team effort to get her fed, but we are getting it done. If she cries during her feeding tube feeding the milk won't go down, so sometimes one of us is holding her and the other is holding the syringe. Usually she is good, though. It's nice to have help either way, because it would be a lot to handle on my own.

I had to take her back to the hospital today for an echo. They heard a heart murmer when we were in the hospital, and did an echo then, but the vcr wasn't working. Which means the cardiologist can't look at it. They didn't see anything the first time, and they didn't tell me anything today.....so I am assuming that everything is still fine. They said the pediatrician would have the results in a couple of days.

In other news....knock on wood....Regan is napping again. Only for about 40 minutes at a time, but at least she is sleeping a little.

Things are looking up. : )

Hospital

I'm sorry that I haven't posted in so long. For those of you who don't know, Addison was admitted to the hospital on Thursday. She had only gained two ounces in a week, when a baby her age should be gaining an ounce a day. So, they sent us straight to the hospital and I have not seen the light of day until today when we were released.

The first night she gained four ounces, and they thought we would be able to go home on Saturday. But then she lost an ounce on Saturday and an ounce on Sunday. Needless to say it was frustrating, but we are becoming slightly numb to it at this point. The pediatrician on call told us on Sunday to start increasing her volume. When they first admitted us we were doing 20 minutes on the bottle and whatever she didn't take from the bottle less 60 ml we were giving her through the feeding tube. This was every three hours. She was acting hungry every two hours, and the first night I had fed her on demand (which is what you do when you nurse) and they fussed at me saying I was giving her to much. That I had to wait every three hours. They said that if she is acting hungry it could be a tummy ache making her do that and if I overfed her she would throw up, and we would be defeating the purpose. One of the times that I fed her she did throw up, so I listened to them. But I knew she was hungry before the three hours were up. I didn't think that a baby would have a tummy ache at exactly the same time after every feed. It has been much better since the ped. told us to increase her volume. We went up to 75 ml at first, and she did fine but was still hungry before her next feeding. And then we went up to 90 ml. She did fine the first time we gave her 90 ml, but then the next time she spit up a little bit and was a little fussy so we went down to 80 ml. With all of that she finally gained weight. I would have been really worried if she hadn't. Today she started to act hungry again before her appointed feeding time, so we went up to 85 ml and so far she has done well with that. Having nursed Regan we are having to learn all of this, plus all of the extra medical things that go along with it. I have no idea how much a baby this age normally takes, and I have no reference point. I am considering going to medical school. : )

We are home now with the feeding tube. We will have a home health nurse come in three days a week to make sure that she is gaining and that her feeding tube is still in the right place. We check it everytime we feed her, but it is reassuring that we will have a professional checking it also. One of our neighbor's little boy had four holes in his heart and had to have open heart surgery. Needless to say, he had trouble gaining weight in the beginning of his life too. They were actually at the hospital at the same time that we were, because he had an extremely high fever. Matt ran into them at the coffee shop. They said that they actually owned a baby scale from when their little boy was having the same problems, and that we could use it. We are so greatful! It will give us great piece of mind to be able to weigh her every day. The pediatrician also seemed happy that we would have this. He wants her to gain 20 to 30 grams a day.

Regan seems to have handled this as well as a 2 1/2 year old can be expected to handle this kind of thing. She was a little hyper when we got home, but nothing that wasn't to be expected. She did ask us right before she went to sleep if we were "all done with the hospital." We told her that we were, and she went right to sleep. I think she is glad to have us home.

We got a lot of calls while we were in the hospital from friends and family that were concerned about us and Addison. Thank you all for all of your thoughts and prayers. It means so much to us. Also, we could not have better neighbors. They were so kind to come and take Regan to play and give Sue a little break. They are always willing to help as are our other friends out here, and we are very appreciative. One doesn't know how nice it is to have people to count on in times like these. Which brings me to my final thank you. We could not do this without Matt's mom Sue. She has been so wonderful to stay with us and help us during this time. We are so greatful!! It really does take a village!

Daddy time

Today Addison and I were alone together for the first time. We thought Regan started back to school today, so Matt's mom took her. Turns out she doesn't start back until Thursday.

Addison goes back to the doctor to be weighed on Thursday. Everyone keep their fingers crossed.

Regan is having trouble sleeping these days. We put her in her bed for her nap, and she doesn't ever go to sleep. She plays for a couple of hours and then we end up getting her down, because it is close to 4 o'clock. I don't know what to do other than keep putting her in there. At least she is trapped, and I can get some rest. Hopefully this is a short phase that won't last long. I think she is to young to give up her nap. Although, she isn't really cranky at night. Who knows?

Marriage Proposal

Regan and I went down to our neighbor's house today to play, and before we left Regan got a marriage proposal. Her little friend Christian told me that when he gets bigger he is going to marry Regan. So cute! I have posted a picture of him from Halloween last year. He is the one in the woody costume. Although he might have some competition from the other little boy pictured, Spencer, because the last time he saw Regan he squeezed her shoulders and said "You are so pretty Regan."

Just Good News

We took Addison to the doctor today and her white blood cell count was down and she had gained an ounce. We don't go back again for a week. Yay!

Good News and Bad News

We went to the doctor today, and Addison gained three ounces. Huge relief! But she has an ear infection and a slightly elevated white blood cell count. She is more prone to ear infections due to her cleft pallet. Since she was not running a fever, they gave her a shot of antibiotics and we have to go back tomorrow. They talked of admitting her, so I guess if her white blood cell count doesn't come down by tomorrow they will admit her. I call Addison my little trouble maker.

Bath Time

Well, we didn't get a picture of Addison's first bath. Didn't even occur to us. Poor second children. I guess by the third child they just don't even get a picture to document. She, of course, did not enjoy the bath. And her big sister was a little to much help, but we all survived. I don't remember Regan minding her bath, but that was a long time ago. I know that Addison will learn to love bath's just like her big sister.

Christmas

We had a really nice low key Christmas. It was nice to have Regan home to get all of her Santa and to be able to play with it. We let her play with her Santa presents for a while, and then we opened our wrapped gifts. Regan liked opening presents. She didn't really care who they were for. It's so nice when they are young and innocent. I think she liked all of her presents, but she played with her doodle pro and bitty baby the most. It was really surprising to me, because she is not really into babies. She is much more into stuffed animals. But she didn't pay much attention to the TMX Elmo (who is hilarious, by the way). She was very into changing her babies diapers and feeding her, though. She really wanted to play with the play doh create a center, but at our house play doh is an outside toy and today was not a day to go outside.

Sisterly Love