Thursday, November 26, 2009

So much to be thankful for

So Thanksgiving is here and this year it means a lot more than any years past. It's always been a great day to relax, spend time with family, eat, watch the annual football games in Dallas and Detroit, eat a little more, and somewhere find a minute or two to thank God for all that I have and all that He's done. This year has been a whirlwind of ups and downs - things are different now and I finally realize how much I have to be thankful for.

A year ago we decided to start getting our spare bedroom ready for a baby. We had been trying for almost a year and stepped out in faith, trusting that God would answer our prayers and give us a child. Two months later we were pregnant with not one, but two baby boys. I am so thankful for Rachel - she did so well throughout the pregnancy. Although she did not make it full term, it was easier for me than I thought it would be and she actually was disappointed by missing out on getting bigger, going into labor and having a normal "real" delivery.

I'm so thankful that God was with us to ease the stress and worry of the boys' complications. He provided thousands around the country and the world to pray for us. Jack and Luke were born at 28 weeks on September 23rd. Luke had been smaller than Jack all along, but had stopped growing at 24 weeks. The decision was a hard one to make, but I am so thankful that they both made it and that Jack is home to celebrate with us today! Luke has had a very rough time with many breathing and lung problems. There were many days that could have been his last, but God's hand has been on him and everyone's prayers have really helped. He is now breathing on his own and expect to have him some sometime in January.

We could not have made it without the help of our parents. They have made us meals, helped around the house, traveled to see the boys, refinished furniture for the boys' room, and have already spoiled them with many of the necessities they'll need.

Thanks so much to everyone who has helped us, prayed for us and have kept up to date with the boys. It has been a long and never-ending roller coaster ride, but a great one and something I would never give back.

Saturday, November 21, 2009

picture of Luke

I forgot to post this picture of Luke without his breathing tube! It is blurry but it is the best picture I have right now. I will try to get more later.

A couple more pictures of Jack:

Exciting week!

Bath Time:

Daddy Feeding Jack:

The room we stayed in at Children's:

This week has been full of excitement! Jack came home on Thursday afternoon and it has been great. The first day it was a little unreal. I would walk by the pack and play and it almost surprised me that there was a baby in it. Jack is such a sweet baby. He doesn't cry- just squeals every once in a while. He eats great and sleeps even better. Last night was the first time he woke up before his feeding time and asked to be fed. He was awake at 1:45 and feeding time is at 2. After he ate, Jack was back to sleep! He had his first bath at home today and now he smells like a sweet baby boy! I love baby smell! Lily doesn't really pay much attention to Jack. She only smells him every once in a while and then loses interest. Snuggling is so nice but sleep deprivation is not!

Last night around 3:30 we got a call from James (Luke's buddy/nurse) saying that Luke pulled his breathing tube partially out! James told me that he did okay and that the doctors wanted to try him off the ventilator!! He was on 3liters of oxygen and doing good! They did a blood gas once he had been off the vent for a while and it was still good! Mom came and watched Jack today while I went to go see Luke. Ken was working and I was anxious to go see him. He looked very good and was still doing good on the oxygen. I am so proud of my boys!

Luke--that he can continue to do good off the ventilator and doesn't get worn out! Also that he keeps progressing and can come home soon.
Jack--that he continues to grow and can get off the oxygen soon
Ken and I--that we can endure the sleep deprivation and remain healthy.

Going to test out our new camera and see how the video does online!

Thursday, November 19, 2009

Wednesday, November 18, 2009

Jack's last night at Children's

We are spending the night at Children's for Jack's last night at the hospital. He is medically ready to be home and we are used to taking care of him - they just want parents to have at least one night to completely take care of the baby before sending it home. He is doing great and besides feeding him every 3 hours, it should be an easy night.

This morning Jack's oxygen equipment and pulse/ox monitor were delivered and we learned how to use everything. He will have his oxygen tube around his face for a while, and the pulse/ox monitor will let us know if he has any problems with heart rate or pulse. It will be a little frustrating, but will make us comfortable having him home without worrying about checking on him all the time.

Jack passed his car seat test without any problems. He had to stay in his carseat for 90 minutes to make sure he can tolerate the car ride home. We had to buy a smaller car seat today because our car seats are way too big for him right now. Hopefully by the time Luke comes home Jack will have grown into their matching car seats so that we won't have to buy another one.

Well, it's feeding time so we will finish up for the night. It will be great to have Jack home tomorrow!

Jack's car seat test

And So It Begins...

Life as we've known it is now over. The boys will be two months old next week and Jack is coming home tomorrow! Instead of going to bed early and enjoying our last quiet night, we rearranged everything in the living room and started moving extra things into the garage.

Jack will come home on oxygen, and that equipment is being delivered to the house today. We will stay at the hospital overnight in a private room to get one night of practice. If all goes well, we will bring him home sometime during the middle of the day tomorrow! The house is as ready as it needs to be and we have friends from church set to bring some meals over the next week. Ready or not, here he comes!

Luke continues to be OK with some ups and downs. We are excited to bring Jack home, but have to remember what they told us about Luke's progress - around 80% of the babies develop at Luke's speed, so he is very normal and Jack is the exception.

We will do our best to update when we can, but I expect they will be less frequent for a while. Thanks for keeping up with us and please sign up for email updates (at the top right of the page) so you never miss any news.

Monday, November 16, 2009


I have been nesting! Cleaning and organizing and driving Ken crazy!! If everything goes as planned Jack is supposed to come home on Thursday!! I am very excited and scared and everything in between!! Jack will be coming home on oxygen (only 1/4 liter) and will need a machine to monitor his oxygen levels at home. Wednesday night Ken and I will spend the night at the hospital - they call it "rooming in." Jack will spend the night with us and we will be responsible for all his care and make sure we are comfortable with his oxygen and machines. Tomorrow I will take his car seat up the the hospital to get it approved. Jack will also do a car seat test. The nurses put the babies in their car seat and they stay in them as long as it takes to get home. The test is done to make sure the babies can tolerate being in the car seat. We only live 20 minutes away from the hospital so he should do good. Today he is taking all feeds by bottle and no tube feeds. He is doing a very good job eating and finishing most bottles in around 15 minutes. He is now weighing 4lbs and 9 oz!

Luke is doing good but he wasn't feeling too good today. He was very lethargic and was dropping his heart rate and oxygen levels. Usually when he drops his levels it is because he is mad and throwing a fit but today he was perfectly still and dropping them. His oxygen had to be turned up to 73% when I left today. They doctors changed some of his vent setting and rechecked a blood gas an hour later and it still was not very good. I am sure more vent setting changes are on the way. When I left Luke was acting a little better. He was peeking open his eyes and stirring more. His pulse ox was better too. Please pray that he was just having a bad day and that he is not backsliding and getting sick. He needs to continue to get bigger and stronger and be illness free. He is doing good on feeds. He is up to 7mls an hour through his feeding tube. He is still IV free!! He has been off his nitric since Friday and the echocardiogram was better on Friday! The eye doctors came last week and his eyes were much better!! His eyes were right where they should be for his age.

Yesterday my mom and dad brought over the boys' baby furniture and got the room arranged. The dressers were my grandfathers and when he died we took them. They were pretty beaten up so we decided to refinish them. They came out amazing!! Ken and I got the beginning sanding done but my wonderful dad did the rest. He is so handy and does very good work. We finished the dressers in a dark cherry finish to match the cribs. I will post some pictures soon. I have been majorly nesting the past couple days. There is so much to do! We got a new vacuum cleaner the other day and I am disgusted at how much our other vacuum did not clean! Just our bedroom filled the whole compartment with carpet lint, hair, and dust. GROSS. I washed our curtains and as I was transferring them into the dryer I noticed the tag that said "Professional Dry Cleaning Only." Oops! But they don't look too bad. We put a pack and play up in the living room. That was a very frustrating thing to do. It took us about 45 minutes to get all the accessories on it but it looks good now and shouldn't fall apart the first time we use it. I am pretty sure we put it up right!

I am ready to get Jack home but it will be really hard to leave Luke behind. I am comforted that he has AMAZING WONDERFUL nurses taking care of him--especially his primary nurses Lindsey and James! I wish they were there 7 days a week! I know that he is in good hands but it will be hard not to be able to go see him anytime. I will have to wait until someone can watch Jack so I can run up to see Luke. I thought I was tired and busy now!

Thanks for the prayers and thank you for those who are bringing us meals. I really feel so undeserving of such love and thoughtfulness! We had meals after the babies were born and now we are blessed with people bringing us meals again. Thank you so much for your generosity. We are so lucky and grateful to belong to a church that is more concerned about others over themselves! I can not wait to show someone the same kind of love and generosity and concern that our friends and church family have bestowed on us. Thank you for being an example of God's love to our family.

Prayer requests:
Luke feeling better and not getting sick. Some of his electrolytes and blood gasses are out of balance so those need to correct themselves. That his lungs get better and he is strong enough to come off the ventilator soon.
Jack coming home and that Ken and I can take adequate care of him! Jack not getting sick when he encounters the real world and keeps eating well and growing.
Ken and I staying healthy and getting enough rest (I know that resting is pushing it!!) and we figure out our job situations and budget issues!

Thursday, November 12, 2009

Big Boys!

Jack-- only getting oxygen when he is eating. He is taking 4 bottles a day and doing good. He is usually eating most of his bottles. We had to experiment with different nipple and feeding positions but he is getting better everyday with his eating.

Luke---the doctors changed his vent the other day to a servo vent. This vent is more of a weaning vent and he will come off this vent. His nitric is being weaned and should be done tomorrow evening. He will have an echocardiogram tomorrow to make sure that his pulmonary hypertension is stable. He is doing good on feeds and doesn't even have an IV!

Will post more later! Thanks for the prayers!

- Posted using BlogPress from my iPhone

Sunday, November 8, 2009

Quick update before bed

Jack is off his oxygen!! He was doing really good when we were there this afternoon. From the bottle he took 34ml out of the 38ml he gets with each feeding! Pretty soon he will be taking it all and he will get to start taking more bottles. Right now he only gets 2 bottles a day but if he keeps eating well then he will get a bottle added as he tolerates it. Luke is great. Ken got to hold him twice this weekend--one time with Jack and Luke together! It is an odd sensation to be able to carry Jack and walk around with him not attached to something! I felt like I was breaking the rules when I carried him over to see brother!! Luke is up to 5mls of feeding and the doctors are weaning his vent settings. They have said that if Luke keeps progressing and doesn't have anymore set backs then they may be able to get him off the vent in a couple weeks!! Jack hit the 4lb mark last night weighing in at 4lbs 3oz! He is growing fast.

Off to bed...........tomorrow is a busy day of cleaning, shopping, and seeing the boys!

Friday, November 6, 2009

Busy week

Sorry that it has been a while but it has been a busy week. The boys are doing great and getting better each day.

Luke has been doing great and the doctors are SLOWLY weaning his vent settings. He is up to 4 ml of breast milk an hour through his feeding tube. Today he was down to 28% oxygen and still on 10 of nitric. The doctors started him on Viagra yesterday. Yes I said Viagra!!! They have found that Viagra helps with pulmonary hypertension and has been used for that on babies for many years. Luke will have another echocardiogram on Monday and if his pulmonary hypertension is stable then they will start weaning his nitric. Praying that the Sildenafil (Viagra) will work and Luke can wean off his nitric. Luke has been a WILD man lately. He has always been feisty but now that he is feeling better he is all over the place. While it is good that he is feeling better, he was so wild the other night that his breathing tube came out! He got a new breathing tube and extra sedation and was great the rest of the night. Ken and I are getting to hold him once a day!! Ken held Luke for the first time on his birthday. Happy 30th Birthday!! I love you Ken!! Luke has his eye exam and it was pretty good. His eyes are still pretty immature and the doctors will recheck him in a week. Hopefully with the increased nutrition everything will get better and healthier--including his eyes. Luke is around 2lbs 8oz!

Luke's mad face:

Jack is doing great. The other day Ken and I were talking to the APN and she started asking us if we had car seats, bassinet, and also mentioned trying to find a pediatrician. She then said "The reason I am asking these questions is because Jack will probably be coming home in about 2 weeks!!!" He is currently on 1/2 liters of oxygen, in a little baby bed (out of the isolette) and getting his tube feedings over 30 minutes. He started taking a bottle yesterday and is doing good. He is still learning how to suck and swallow. He is taking about 15ml of his 35 ml feed. He only gets to take a bottle twice a day. Once he starts taking over 26 ml with every feed they will increase the number of bottles he can take. He had his eye exam and it was very good and normal. He also had his hearing screen and passed 3 out of 4 tests. They will come recheck it when he is off oxygen because it interferes with the one test he didn't pass. He is getting so big too. He is very close to 4lbs!!
Jack's First Bottle and his new bed:

Today I was holding Luke and Nurse Lindsey went and got Jack. I got to hold both my boys together for the first time!! It was a little hard because you can't really move much when holding Luke due to his breathing tubes but it was great to have them both in my arms. It is also the first time since they were born that they have been together. We gave Luke a pep talk and told him that we can do a whole lot more fun stuff if he just gets big and strong and keeps growing!!

Ken and I are trying to clean and get their room put together so it will be ready when Jack gets home. My dad has been refinishing the furniture for the boys room and it is almost done. He has done an AMAZING job and it looks great! I will have before and after pictures soon.

I know that I say this almost every time but THANKS to everyone who are praying for the boys. Your prayers are being heard and answered. We are thankful for everyday the boys are here and for their continued improvements. Pray that Luke continues to get bigger and healthier and that he has no more setbacks. Pray that Jack will get the hang of taking a bottle and he will be able to come off the oxygen soon. Pray for Ken and I that we remain healthy and for us to not get run down. Thank you!!

Sunday, November 1, 2009

Picture Time!!

Baby Shower Pictures

Monkeys on the Door and the table in the front entrance way and even monkeys on the chandelier:

A couple food pictures-notice the cute name tags for each item. The sweets table was gorgeous!

They had a necessity table packed with great things! A picture of the pile of presents and a picture of Ken and I in front of the main table:

3 generations of Barnes boys---Luke missed this picture but soon we will get one with him in it!!:

Luke was wide awake the other day and I got some good pictures of his sweet face:

These are the pictures that I took the day that Jack's feeding tube got changed from his mouth to his nose. We got some good pictures of him without tape on his face.

"Look mom, no tube!!"--

Jack was worn out and not digging his picture being taken anymore:

Here is a good shot of his hair----BLOND OR RED??