Saturday, December 26, 2009

Some Christmas Pictures

Rachel and Jack

Rachel and Luke

Jack's visit from Santa

Ross and his Christmas shirt (my favorite, Yoda is)

Even Eli got a Star Wars shirt for Christmas

First Christmas For The Boys

It was a very different Christmas this year. Jack has been home for five weeks and is doing great. Still on oxygen and his pulse/ox monitor, but he hasn't really needed them for a while (his heart rate and pulse are normal all the time) and hopefully when we see the NICU doctor for an appointment at the hospital's high-risk newborn clinic in two weeks we can get rid of his wires for good.

We tried to get Jack and Luke together on Christmas Eve so the four of us could get a family picture together for our first Christmas, but it did not happen. Our request to bring Jack was officially denied around two weeks ago, but that was not going to stop us from trying. We brought Jack with us to see if we could get him back to see his brother. In over three months, they have been together less then three hours (when Rachel and I were able to hold them together a few times before Jack came home). The nurse told us he could not go back, so we just stayed there and waited. The nurse practitioner told us the same thing and we waited again. The NICU doctor agreed and Rachel and I took turns spending a few minutes with Luke and telling him that we tried to bring his brother back.

Grandma and Grandpa Barnes (Ken's parents) arrived Christmas Eve and will be here until January 2nd. On Christmas Eve we had a family dinner, went to church, and then to Rachel's parents' house for presents. Santa made a surprise visit and had gifts for Jack and his cousins Ross and Eli. Christmas morning Santa spent the day at Children's Hospital visiting all the patients, so at least both boys were able to get pictures with Santa for their first Christmas...

Luke is doing OK - just taking a long time to put on weight. His major health issues are behind him, but he is having a lot of reflux and having trouble keeping all his food down. He is in a crib now and is laying on a wedge - strapped in with velcro to hold him in since his position is almost sitting straight up. He still has not been able to start trying bottles, and it looks like it will be at least the end of January before he comes home. Rachel told Luke his goal was to get to 4 pounds by Christmas, and on Christmas morning he did it!

Sunday, December 13, 2009

Quick pictures!

Boys doing great. Luke still needs to grow and tolerating a more normal feeding schedule. They are bolus feeding him in his feeding tube and he is doing okay-- just having some reflux. Will update more when I have a little more time!!



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Friday, December 4, 2009

Another Busy week!

Again sorry that is has taken so long to update the blog. We are trying to settle into a routine with Jack! We had an eye appointment on Wed and everything looked good. We will go back every 2 weeks until his eyes are fully developed. I am not looking forward to those appointments. We were there 2 1/2 hours and Jack was with the doctor less than 5 minutes. It was a lot of waiting. The worst part was that they take your baby away from you to go see the doctor and won't let you go back with them!! Next time we might insist that we go back. It makes me uncomfortable to let Jack go off out of my sight with a stranger--even a nurse. Jack is doing great at home. He is eating a lot and sleeping great! Most nights he settles right down after eating and doesn't keep us up. One night he decided it was awake time and kept me up from 1am until 4am. Ken slept through all that! Ken has been a great help. He will usually get up and do one of Jacks night feeding to help out. I really appreciate it because that is a little more that I get to sleep. Jack is still on 1/8 of a liter of oxygen and doing fine on it. It has been a little difficult trying to carry him around the house because we have to drag his oxygen tubing and monitor with him but it is not too bad. His oxygen tank sits in our guest bathroom and he has a 50ft tubing extension! I will have to get a picture of the tank--it is enormous. I think the hardest part of Jack being home is the lack of freedom to just get up and go do something! He isn't going anywhere public until March or April (until the flu/RSV season is over) so that limits where we can go together to doctors appointments and grandparents house. I have to coordinate everything I want to do with finding someone to watch Jack. Need to go grocery shopping? Wait until Ken is off so I can go then. Go see Luke? Have to get a baby sitter or wait until someone can come watch Jack. The other hamper to some freedom is that it is a little harder to get him ready to go places because we have to get his portable oxygen tank filled and get all his equipment together. Don't take all that as complaining because I am thrilled to have Jack home and giving up a little freedom is wonderful because HE IS HOME!! I want to hold him and love on him all day. It seems that very little is getting done around the house because we just want to snuggle with him!

Luke is doing great. He is a wild man that the nurses can not keep still. Yesterday the nurse told me that she had to reposition him over 8 times and she doesn't know how he gets himself to some of the places she finds him! She said they had him in his snuggler--it has straps that keeps them contained since he can't be swaddled yet--and somehow he even manages to move himself around and gets out of it. Even more funny is that sometime he takes the whole thing with him when he is wiggling around. She has never seen a baby do that before. The nurse said she would get him repositioned and snuggled in and he will go to sleep and she will go do something with her other patient. She says she thinks he is still asleep because she hasn't heard him cry or his monitors go off and she will peek in at him and he will be all the way down at the foot of the isolette! Luke is still on 2 1/2 liters of oxygen and getting feeds into his stomach. The doctors really want Luke to grow so they increased the calories in the breast milk with human milk fortifier to 26calories per ounce. He is currently getting 9ml continuously for 11 hours and off one hour. Today speech therapy is going to try a bottle with him and see how he does! The doctors are not in a rush to get him taking bottles because they do not want him to burn calories eating because he is having trouble gaining weight. I personally think that Luke is just so wild that he is burning up all his calories moving around. I think when he is big enough to hold his own body temp up and can start wearing clothes and being swaddled--that will help. If we swaddle him tight enough he won't be able to move much! Last weight was 3lb 3oz!

Prayer requests:
Luke--that he will start gaining weight. Pretty much that is all we are waiting on for him to get closer to go home. He has to start gaining consistently and then they will try to start transitioning him for tube feedings to bottles.
Jack--that he stays healthy, continues to grow, and can get off his oxygen soon!
Ken and I--that we stay healthy, that we can rest whenever possible, I am going back to work next week so please pray that it is an easy transition for us!
For my family--my grandfather passed away on Wed. He was going to be 90 this weekend! His funeral is on Monday.

Thanks to everyone that has brought us meal. We really appreciate it and it has made it a little easier! Thanks to everyone who is still praying for us and our little men!!