Sunday, May 31, 2009
We had a very relaxing weekend at home. Our weekend nurse only worked 11 pm to 7 am so we were able to have some quality family time with our girls. We are starting to notice that Rylee likes to be held more than when she first came home. She spent too much time in a hospital crib and we noticed that she wasn't very comfortable when we held her. She is starting to fuss a little bit when we lay her down now. She is really starting to interact with us when we talk to her and we know if she could she would be cooing. It is really hard to not be able to hear her voice. Jordan is cooing and smiling alot at us when we talk to her. She seems to get really fussy in the evenings. We do Rylee's trach care after 8pm so sometimes this makes it very difficult. We have a busy week with appointments this week. We don't have evening nursing care until Thursday night so I might be a little exhausted by then. Last week I did three nights in a row and it took a toll on me. For some reason Troy keeps calling me "Kate". (For all you Jon and Kate fans)!
Thursday, May 28, 2009
Our day didn't start off very well. I started her feeding pump at 5:45 a.m. She was pretty fussy so I picked her up and the feeding tube was pulled too hard and out popped her g-tube. I freaked out and yelled for Troy. He came in and grabbed one of her spare trachs off her bed thinking I yelled that her trach was out. We quickly covered the site and I almost lost it. I was able to reach one of her Children's Mercy doctors and she talked me through getting a new one inserted. I felt awful for letting this happen and have been sick to my stomach all day about it. I posted a picture of the g-tube and yes that inflated part came through her incision site. Once we got this taken care of it was time to go to the doctor and poor little Rylee had to get her four month shots. I luckily didn't have to stay in the room with her and let daddy and the nurse stay with her. I didn't think I could take seeing her in pain again. The doctor is pleased with both girls and their weight gain. Jordan has gained two pounds this month and weighs 11 pounds 8 ounces and was 21 1/2 inches long. Compaired to other 25 week babies she is in the 87 % for her weight, 38 % for her height and 36 % for her head size. Rylee gained a pound in two weeks and weighed 9 pounds 14 ounces and was 20 1/4 inches long. Compaired to other 25 week babies she is in the 45 % for her weight, only 5% for her height and 36 % for her head size. It is not looking like we are going to have any tall basketball players in our family.
Wednesday, May 27, 2009
Rylee's three week homecoming will be tomorrow. Both girls have pediatrician appointments tomorrow in Lawrence. Luckily the day nurse will be going with us so it will make it a little easier. I am not sure how we will all fit in one room, but we will make it work. Sorry I haven't posted in a few days. It has been really busy in our household. We haven't had much nursing coverage due to the holiday and a nurse being on vacation. We are still trying to get things organized to make things easier for Rylee's care. Daddy had a birthday party for me on Sunday and that was pretty crazy with all the people here. Thank you to everyone who came by on Sunday. I will post details about the doctor appointments tomorrow.
Saturday, May 23, 2009
I turned 33 years old today and I finally feel like my life is complete. I have always wished for a family every year for my birthday. My wish this year is for Rylee to get her trach removed by my birthday next year. Every night when we do Rylee's trach care I get really upset because she gets so upset and I think to myself this is going to be a long year. I am still having alot of anger towards the family that brought MRSA into the NICU and I hope one day I can forgive this family. We stayed home today and celebrated with take out from On The Border. There won't be anymore dining in for our family for a few years. Rylee is on her new formula that costs $28.00 a can and I think daddy about wet himself when he paid for it. I looked all over Lawrence for this formula and we couldn't find it anywhere. Finally, the doctor's office recommended that I look at Price Chopper so we found it in Gardner last night. She vomited the first feeding, but has been doing well the rest of the day. She is still pretty gassy and in alot of pain from it. We hope she can get some comfort soon. Jordan is still doing well. She pretty much sleeps and snuggles with daddy all day. I hope everyone has a great Memorial Day weekend.
Thursday, May 21, 2009
As the day nurse left our house today, I closed my eyes and thanked God for bringing me these two little girls. Being alone with the girls is when I can actually look back and see that it's been a struggle worth fighting for. I am struggling to find the "new normal" in our life. Having nurses in our home is not normal to us yet. I think it will get much better when we can find nurses that we actually trust and are comfortable having in our home. I really wish we could do this all on our own, but we just can't do it right now. When Rylee gets off oxygen our life will be much easier. It is really hard not being able to go to family gatherings and just go out with our girls. I am so looking forward to the day that we can just be a normal family. A new nurse came by today to meet us and is planning on working Monday and Thursday nights from 11pm to 7am. I didn't get a great first impression, but I am hopeful she will work out for us.
Wednesday, May 20, 2009
I can't believe it has been five months since these little girls came crashing into this world. We went to the special care doctor today at Children's Mercy and a mom in the waiting room asked how old Rylee was and when I told her she looked at me a little weird. I think I need to just use their adjusted age if I don't want to go into the whole story. I think we know how to grow our babies big. Rylee weighed in at 9 pounds 4 ounces and was 8 pounds just two weeks ago. The doctor is having us slow down on her bottle feedings as she doesn't want to get her too tired and risk aspiration. She is only allowed 2 bottles a day and only gets to have 20 ml of her 75 ml per bottle. This is a little disappointing since it is so much easier giving her a bottle and she loves her bottles. She was breathing pretty hard with her HME (artificial nose) on in the office so the doctor wants her on her humidified air a little more throughout the day. This is hard because this means she is stuck in her room. We are going to change her formula to see if it will help with the vomiting and the major gas pains that she is having. The doctor was pleased with how Rylee is doing and commented on what a good job we are doing with her. She was a little disappointed that we don't have more nursing coverage to help out with Rylee throughout the night hours. I am not getting much sleep at night and it is starting to wear me out. I of course asked how long she thought Rylee would have the trach and she thought at least a year and maybe two years if she doesn't grow well. Jordan stayed home with daddy and is still in her pajamas so I think they did alot of sleeping. We are anxious for Jordan's appointment next week to see how much weight she has gained.
Monday, May 18, 2009
I have been home alone with the girls for about an hour and so far so good. Troy went to the 8th grade graduation and then out to eat wings with the guys. Please pray the girls are good for mommy! Jordan has already showed signs of being very very spoiled. It is a good thing Rylee doesn't mind sitting in her crib or bouncy seat. I have to keep pinching myself that I have two babies at home now. I love to just sit and look at the girls and remind myself how blessed we really are. We only have one doctor appointment this week. The nurse and I will be taking Rylee to Children's Mercy to the special care clinic to see Dr. Gratny on Wednesday.
Saturday, May 16, 2009
The girls are now 21 weeks old. We had a great day at home as a family and enjoyed just relaxing with the girls. It is a little hard to have quality family time when nurses are here. So we enjoyed our day until the night nurse came at 3:00 p.m. She is about to send me over the edge! I am not worried that she is doing anything wrong, just a little crazy for me. I am going to give her one more weekend to see if I can handle her being here. I wish we had our camera last night during Rylee's care because we would have had some cute pictures. Jordan was sucking on Rylee's cheek and getting mad because nothing would come out. While we were changing out Rylee's trach, Maddie had her head laying on Jordan. I am sure the nurse thought we were a little odd letting our dog be right in the middle of all the action. Maddie doesn't like to miss out on too much when it involves the girls. I don't think she liked it when the nurse locked her out tonight. I am looking forward to getting a full night sleep tonight, as daddy is taking care of Jordan.