Tuesday, September 29, 2009

Thank you for visiting!

I am at work today and Rachel is with the boys right now. They are doing well and we will have an update this afternoon or tonight before bed.

I just wanted to thank each and every one of you that has taken the time to visit the site, think about us and pray for all of us. We know that is why Luke and Jack have done so well and Rachel is recovering as fast as she is. Over the last two weeks, we have had visitors from Senegal, Canada, Pakistan, Australia, Ukraine, and one undefined country (Google shows it as "not set").
Closer to home, people in 35 states have taken the time to visit:
Arkansas, South Carolina, Texas, Tennessee, New Jersey, Florida, North Carolina, California, Delaware, Missouri, Pennsylvania, Georgia, New York, Colorado, Virginia, Maryland, Oklahoma, Connecticut, Kansas, Massachusetts, Nebraska, Ohio, District of Columbia, Maine, Washington, Indiana, Arizona, Kentucky, Michigan, Illinois, New Hampshire, Montana, Utah, South Dakota and Mississippi!

We can't thank you enough for everything you have done. The power of prayer is amazing and if there is anything you need prayer for, please let us know (kendb@hotmail.com or raebarnes@hotmail.com).

Monday, September 28, 2009

What is today?

Ken and I have been busy trying to go see the boys, get some rest, pumping, and trying to do many other things. It seems the days are all running together. We keep saying "we will do this and this today and update the blog today" but today always seems to run out before we have time to do those things!! Here is the latest updates on the boys:

Jack--He should be getting a PICC line (long term I.V.) in the next couple days. Once the PICC is in, the umbilical line will be discontinued. Jack will then get to start on feedings. Jack had an echo-cardiogram today (checking heart structure and functions) just to make sure everything looked okay. The results are not in yet. He is doing good on the ventilator and being slowly being weaned down as he tolerates it. It is a constant adjustment and some days he has to go up but he is doing pretty good and has gone down more than up. The doctor said they are in no rush to take them off the ventilator. They like to take it slow and give their lungs a good chance to develop. Jack likes to throw temper tantrums at least once a shift--usually after he has been suctioned (clearing out his mouth when it gets too wet or full of bubbles) or a diaper change. He gets so mad and arches his back, thrashes his arm and legs, and about comes off the bed!! If he doesn't calm down with hand containment, he usually earns a little extra sedation. Yesterday he got the hiccups and had them again twice today. They are almost painful to watch because they are the deep kind and they make his squirm. He received some blood last night but otherwise his labs have been good.

Luke--He will be getting a PICC line also but it might be later in the week. They want him to be a little more stable before doing it. Luke had an echo-cardiogram on Saturday that was completely normal!! They started Luke on respiratory treatments yesterday because his lungs are still cloudy and need to clear up. He is doing good on the ventilator but he is moving a little slower than Jack. Last night was really the first night that Luke showed out for us. When got there in the evening shift, he was squirming and thrashing around. After 5-10minutes and not calming down, he got extra sedation to calm him down. Today he was still moving a lot more so I guess he rested the first couple days and now he is going to start showing that he can be just as feisty as his brother! Luke's labs continue to be a little off. He got blood and platelets last night. His white blood cell count is starting to come back up (it had gotten a little low). One issue is that his liver and kidneys are still trying to recover from working so hard before birth. There isn't anything too bad but they are just not normal. The doctor said that all he needs right now is a little time and they should clear up.

Both boys are getting their head ultrasounds on Thursday. We are nervous about that and praying that they are both normal. The doctor yesterday talked to us about Luke and Jack. He said that Luke is presenting like a classic twin-to-twin transfusion baby. The 3 systems that are affected (lungs, kidneys, and liver) all indicate that they had some kind of vascular connection that caused Luke to work harder. Dr. C was very sure that they did not have the transfusion syndrome because they never presented in the typical way--amniotic levels being different and Luke always had fluid in the bladder and stomach (usually the smaller baby doesn't make urine and amniotic levels are really low). But we knew something was wrong! We will have to wait until the placental studies come back to know anything definate. The babies doctor also said that Luke is very lucky to be here. Again that is an affirmation that we did the right thing.

Ken and I also have done a lot of praying and have decided to keep the boys at Baptist. We have been so happy with their care and love the nurses and doctors. The boys are happy and settled into their environment. They have their own room together and it is private for Ken and I. We are afraid that moving them could cause more damage than good and we are not willing to risk that. Ken and I made that decision and the next day told both of our parents. They were all immediately relieved because they had been talking behind our back that they wished we would leave them at Baptist too! It made us again feel that we were doing the right thing.

We are praising God for allowing both our boys to be here and that they are doing so well. We are still praying because they have many obstacles to overcome. We know God's hand has been on all of our lives every step of the way. Please pray for their head ultrasounds on Thursday and that they will not have any brain bleeds. Thanks you so much for your support, emails, phone calls, visits, and especially for all the PRAYERS!! We have felt the power of them since the start and are very thankful.

Sunday, September 27, 2009

Sunday update

Sorry it has taken us a while to do an update. I know some of you are anxiously waiting for new information. Here are a few more pictures:

Last picture before having the twins (just before 28 weeks)


When we arrived to see the boys this morning, they were wearing hats

Jack in his blue hat

Luke in his green hat

The last picture is of Ken laughing and making faces at Luke

Saturday, September 26, 2009

REAL quick update

The boys are doing great! Luke has received several doses of different blood products because his labs have been out of whack but they are both doing great on the ventilator (breathing machine) and resting comfortably. Jack threw a major temper tantrum yesterday because the nurse cleaned him mouth and ended up getting an extra dose of sedation because he hadn't stop throwing his fit after 5 minutes!! Even though Jack might have a little temper, the night nurse said that Luke is more feisty! She said we are going to have our hands full!! I said "Good! Give me 2 fighters any day!
We are going to go home today--hopefully we can stall until later this afternoon. Once we are home we will update the blog with better stories and more pictures! Thanks for all the prayers for me and for the boys. I am amazed how well I am doing and how little pain I am in. God has definitely had a hand in healing me very fast! He is also keeping His healing hand on the boys and is working a miracle everyday that they are staying stable!! Again thanks for the prayers and better updates and pictures are coming very soon!!

Thursday, September 24, 2009

More from day 1

The Barnes grandparents arrived this afternoon and were able to meet Luke and Jack. Luke's nurse opened part of the isolette and let us touch him. Rachel held his foot and applied a little pressure (called hand containment - rubbing causes too much stimulation for them right now) and I was able to rest my hand on the top of his head.

Jack breathing in his isolette
video

Luke breathing in his isolette
video

Some pictures from day 1

Luke with the "bili" light to help with jaundice and bruises - his size compared to the nurse's hand

Luke's foot and the nurse's thumb


Jack and the nurse's hand

Jack's foot and the nurse's thumb


Some more pictures of Jack


Day One of Life!

Both boys were intubated around 12:30 last night due to increased work of breathing. They were just struggling too much to breathe and were getting tired out. The doctor had done chest x-rays which showed worsening of the lungs, so they intubated them before they got too much worse. After the boys were intubated, they were given a medicine called surfactant. Surfactant is something our lungs make but since the boys are so early they don't make much yet. The nurses said as soon as they gave the medicine, they both pinked up (better skin color) and were breathing easier on the ventilator. They were able to wean their oxygen and vent setting down after the medications too. Jack needed a blood transfusion due to low blood level counts and also some Albumin to help get his blood pressure up. Luke needed Albumin too but did not need any blood. Both boys are A+ (blood type) like their mom!! Luke was getting a little jaundice (he had some bruising from delivery) and they put him on a biliary light. Even with everything that was done last night, they are still doing great and being little fighters. The nurse taking care of Jack says every time she changes his diaper, he pees at her and gets pee all over the head of the bed!! Luke is doing the best on the ventilator and oxygen settings.

I am doing good. VERY sore and tired. My left leg is still pretty numb and limp due to the epidural but I was able to get up and into a wheelchair and go see the boys around 5 this morning. The NICU nurses were surprised to see me up so soon but I couldn't stay away. One of the nurses is a friend of mine that I went to nursing school with and it makes me happy that she got to take care of Jack. We did not get much sleep--just dozed here and there. I am sure we will be napping off and on today. We are going to go see them in a little while and take some more pictures. I will have Ken load some more on the blog as soon as possible.

Thanks for the prayers. We really felt that God was with us and the boys and had a peace that could have only come from God. We have a long journey ahead but know that God is doing great things. Continue to pray for the babies as they have so far to go. Thanks again for everything and to everyone--those we know and to those who have never met us. We are amazed at the power of prayer and the strength God has given us!

Wednesday, September 23, 2009

THE BOYS ARE HERE!!!

THE BOYS ARE HERE!!! They both cried and are breathing on their own. Still running tests, but we should be able to go back and see them in a little bit. Jack 7:43pm - 2lb 4oz. Luke 7:44pm - 1lb 3oz. Here are a few pictures. I'll write and update more tomorrow - way too tired right now...

Luke





Jack




The babies are coming!

Went to the doctor today and the babies are coming! Luke's blood flow was about the same--not much change. Everything looks great with Luke--moving, practicing breathing, caught him yawning several times, and a good heartbeat. Dr. C said if there wasn't such a size difference and the fact that he isn't growing--you won't know there was a problem with him! Luke looks like a normal healthy baby-just tiny. Dr. C did a blow flow study on the babies brain and it was perfect! The decreased blood flow through the umbilical cord is not affecting his brain yet. So our options were:
1. According to Dr. C ----"try to squeak by and try to get one more week in." He said that Luke wasn't in distress at this time but he feels like any day he could start having problems and he could have permanent damage and/or lose him all together.
2. Go ahead and deliver these boys. This prevents any possible inter-uterine complications that could happen but they are only 28 weeks so there are many other risks to consider.

We chose to go ahead and deliver. It was very hard because I kept thinking "if we get one more week-maybe we could get one more week after that and so on!" The more we talked about it with Dr. C and then later with Dr. W, the more we realized that we are making the right decision. We don't want to risk the health of either boy but the risks of staying in me are becoming greater than delivery. Both mentioned that Luke will probably do better than Jack in the beginning because Luke is already under stress. Jack has been fat and lazy and not under any stress so coming early will be more of a shock for him.

Ken and I are both nervous and scared but also excited that we will get to see the boys. Even with our anxiousness, we have a peace that we are making the right decision. God is in control and we feel that it is time for the boys to come. I would do ANYTHING to keep them in longer and protect them a little longer but we know this is the best thing and we are actually doing really good. We will be heading to the hospital in a couple minutes to get checked in and prepped. The surgery will be around 6pm tonight. We will try to update as soon as possible. Please pray for us and for my sweet boys. Thanks for everyone who has been praying for us and we ask that you keep praying. We have a long journey ahead but we are expecting miracles and perfect health for our little boys!!
Thanks

Tuesday, September 22, 2009

Test results normal!!!

The first results of Luke's amnio are back and everything looks good! These first results are from the "FISH" test - here's an explanation that I found:

The FISH test (fluorescence in-situ hybridization) is performed on amniotic fluid for rapid detection of the most common fetal chromosome anomalies, including Trisomies 13, 18 and 21 (Down Syndrome) and aneusomies of the sex chromosomes, X and Y. It does not test for everything, just the "main ones" that the prenatal bloodtest looks for.
Amniocentesis (as opposed to the FISH test) can diagnose many genetic conditions prenatally, such as cystic fibrosis, fragile X syndrome, hemophilia, sickle cell disease, thalassemia and Tay-Sachs disease. Of course, amnio also diagnoses the same conditions that a FISH test will (ie: Trisomy 13, 18 and 21 "Down Syndrome") - it just takes longer to get the results.

We visit the specialist tomorrow morning and see the OB in the afternoon (maybe). We will get another look at the blood flow tomorrow morning and see what Dr. Chatelain recommends. Rachel is almost finished packing for the hospital - we will finish up tonight and be prepared for whatever happens tomorrow.

Sunday, September 20, 2009

Sunday update

Not much new to report this morning. I had to work all day yesterday so Rachel spent most of the day relaxing at her parent's house. We went to church last night and it was good to see people and have our pastors pray with us.

We will do a little shopping this afternoon to get the last few things we will need for the hospital. Tuesday afternoon we plan to visit the NICU (neonatal intensive care unit) at Arkansas Children's Hospital (where Rachel works). That way we will get to see some babies their age and have a better idea of where the boys will be if they are delivered early. We will deliver at Baptist Hospital in Little Rock and have them transferred to Children's as soon as possible.

Friday, September 18, 2009

Back home resting

Rachel is back home resting now. Dr. Wyatt stopped by to see her in the hospital and believes the amnio that we did yesterday around Luke was most likely the cause of the contractions. She received her second (and last) steroid shot before being discharged and is now resting at home. No other medicine for now - just lots of fluids and rest. Hopefully the next few days will be uneventful as we wait for the next appointments on Wednesday.

Late night hospital visit

Rachel woke me up just before midnight and said she had been having contractions. She called her doctor, who recommended drinking water and heading to the hospital if the contractions continued. They become more frequent and she has been at the hospital since around 1:30 this morning. The boys are constantly being monitored and she was given some medicine to help stop the contractions. It has helped, Dr. Wyatt will probably be by to see her this morning and hopefully she will be sent home in a few hours.

Thursday, September 17, 2009

Update on the twins

Had our appointment today and things were not better. Jack had grown and is again right on track. Luke did not grow much at all--only gained about 3 ounces. Dr. C did the doppler flow studies and Luke's blood flow was still decreased and now is having some reverse flow from the placenta. Basically when he is trying to send blood back through the umbilical cord to the placenta, some of it is coming back. Dr. C is very concerned and told us our options today. He is a little confused as to why Luke is having so many problems since he is convinced that they are identical twins. Our options were: deliver or do an amniocentesis today and check them next week. We do not want to deliver this early so we chose the amnio. The point of the amnio is to check for any possible genetic or chromosomal problems. Since Dr. C thinks they are identical twins--it would be almost impossible for one to have something and the other one to be fine. So we did the amnio to find out if Luke has something (and therefore would not be identical).

Now our choices from here get even harder:
1. If nothing comes back and Luke is perfectly healthy--we will deliver early.
2. If something minor comes back on Luke--we decide whether it would be better to deliver or to try to wait it out a little longer.
3. If something major comes back on Luke--like something that would be life threatening and/or non-compatible with life outside of the womb--we discuss whether we go ahead and take them early and risk Jack OR we leave them alone and give Jack the best chance and just hope that Luke could make it too. The ultimate goal in this case would be for Jack's survival and Luke
probably not make it.

We chose to do the amnio--it gives the babies a week longer to develop and might give us a few more options. We will go see Dr. C again on Wed. They went ahead and gave me the first of 2 steroid shots to help develop the babies lungs. That will help them if we deliver early. I go back tomorrow to Dr. W and get my second shot.

I want to thank everyone who has been praying for us and ask for continued prayers. I know God has a plan for us--even if I don't understand it. Ken and I are both a wreck and scared for our boys' lives. The decisions we are going to have to make are heartbreaking and so hard. We are trying to lean on God and trust in His plan--even though it is really hard right now. Please keep praying for us and our twin boys. We need all that we can get. God can do miracles and we are asking for one now!!

Friday, September 11, 2009

Birthing Classes

Last month Rachel signed us up for birthing classes and tomorrow is the big day. I really don't have any expectations and am just glad that we can cram it all into one day and be done with it. I'm sure I'll enjoy some of it - just don't know what to expect or what we will actually do.

I just spent a few minutes on Google Analytics checking the recent stats for the blog. I usually check every few months or so, but I was blown away with what I saw! We do not have many regular visitors, but since we've had more baby news recently, September has been the busiest month so far for the blog. Since September 1, we have had over 130 visitors from 10 states, Australia, Portugal, and one other unknown international visitor! Thank you SO MUCH for continuing to keep Luke and Jack in your thoughts and prayers. It really means a lot to have so many people praying for us.

If we do not update sooner, we will definitely let you know what we find out when we see the specialist again on Thursday (Sept. 17th - Happy Birthday Cailey!).

Thursday, September 10, 2009

Ready for next week

Not much too update this week. Thanks for all of your thoughts and prayers! Last Thursday was a tough day, but we really are doing well right now. All of the e-mails, Facebook messages, texts and phone calls have really helped. We know God has great plans for Luke and Jack. It took us a long time to get pregnant and God showed up in a big way to make it happen - we trust that He will keep us all safe and healthy. We are just ready to get back to the doctor next Thursday to see how the boys are doing!

Thursday, September 3, 2009

Prayer request for the boys

I had an appointment with the perinatologist (baby specialist) today and things did not go as well as planned. 4 weeks ago was the first time we saw him and that was because Baby B (Luke) was measuring 2 and half weeks smaller that Baby A (Jack). Everything looked good at that time and Dr. C wanted to see me again in 4 weeks.
Today was our appointment. Luke is still small but is still only 2 and a half weeks behind. Jack is growing good and measuring right on date. The problem came when the doctor did blood flow studies of their umbilical cords. Jack was good and did not have any problems. Luke on the other hand is having decreased blood flow. Dr. C looked at everything and does not think it is a heart problem with Luke--but a placenta problem. He is worried because the first time they did Luke's heart rate it was really low but as soon as he remeasured it-it was okay. I have to go see Dr. C again in 2 weeks to check on the babies. He told us that Luke is at risk due to the low blood flow and that is why he is small. There is a possibility that he could not make it--if we don't watch them closely.
The problem comes because there is nothing that they can do to fix the problem and the only solution could be delivering them early. Ken and I are both terrified and very worried. We would appreciate any and every prayer that you could send our way. Please pass this on to anyone that could join in on the prayers!!

Tuesday, September 1, 2009

Getting Ready For The Boys

It's been a busy summer trying to get organized, clean, rearrange most rooms of the house, and figure out how we want things to be when Luke and Jack arrive in November or December. We also had trips to South Carolina and NJ/NYC for weddings.





Two weeks ago we went to a big consignment sale and bought a lot of baby clothes for the boys. Last weekend we picked up the cribs and put them together.