121 days old

Hello,

Well Emily had a rough day yesterday. She was desating a lot and had a hard time even getting into the 80% range. She also looked pale to me but I thought it was because she was desating so much. They tried raising her canula oxygen to 100% then they raised her oxihood oxygen to 70% with humidity. She had brief moments of goodness then she would drop to the 70-60% range again. She didn’t look puffy (a sign that she needs her diarall) and the night before she didn’t gain a ton of weight. When they suctioned her the did get a some but it didn’t seem to help her that much. Also she was very relaxed for her nebulizer treatment and that didn’t even seem to help her that much. So they decided to give her blood. We knew this was coming. The doctor said that she wants to give her blood before she went home. Unfortunately Emily has her mom’s veins and they are very tiny. They had to try 5 times before they got the IV in her. She went through 3 nurses also. Needless to say she wasn’t happy about that! I hope that they don’t keep it in her that long since I don’t like her not being able to use that limb for while. They also stopped feeding her (which confused me and Tony since she loves to eat).

All told it was an emotionally draining day for me. She has had days worse then this but lately she has been having more and more “bad days”. The good news is after she had her blood and diarall she was a “new baby”. I guess she was sating in the 90’s and they decided to feed her at 4 am.

In more positive news, the count in the nursery was down so they were finally able to wax the floors. So Emily was moved to a little corner of the nursery for about 12 hours yesterday. The floors look great! They were really bad before and you can tell that they looked like they really needed to be done. She is now back in her normal spot and I get the impression she will stay there till she is released, provided they don’t suddenly get a large amount of really little babies.

Today we have our family meeting. I had wanted it to make sure we are all on the same page when it comes to a lot of things. I also wanted to talk about what her needs will be when she is discharged. I know we can’t talk about discharge planning (per say) but I don’t want to find out in the 11 hour that we need something for her at home that I need to try to hunt down. I have started the process of trying to find an Oxygen supply company for her but I am finding out that there isn’t one that caters to pediatric patients. Ironically, I know one company that is in Florida that does cater to pediatric patients so I am going to e-mail them today and find out if there is a network of them for the country. I would hate to get a company that really doesn’t deal with babies and doesn’t know about the needs that she will have. Any suggestions are welcome!

I am starting to get the hang of driving the minivan. Though I must admit that parking it is going to take some getting used to! Especially in the tiny parking lot at the hospital. However I am getting better so hopefully I will be doing really good in little while.

We did take pictures yesterday but I am too lazy to get up and download them. I will do it tomorrow and also post some more (especially if Emily is doing well today).

Talk to you later!
Jennifer