Where we were....

The boys' birthday is Saturday and they will be 3!! Here is where we were 3 years ago today:

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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!    
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 I am thankful that God directed us in the right path and we have healthy wonderful boys today! There were many times we questioned our decisons and asked ourselves "what if's". We have learned to leave the "what if's" in the past..there is nothing that can be changed now and even if we could I don't think the outcome could have been much better. We have had a difficult road but things are starting to get easier (medically) and starting to get challenging (tempment and attitude wise!). Thanks for all your prayers. We are so thankful for every single one of them no matter how small.


Thanks,
Rachel

Back Home From The Hospital

The boys slept much better last night. Thus morning we changed Jack's pain medicine, and that helped him eat, drink and keep everything down today. By 11am Jack had met his drinking goal and we started the discharge process. We all took a good nap this afternoon and they are doing well.

Another Night In The Hospital

So we didn't get to go home today...

Jack slept great last night, but was upset most of the morning. He needs to drink 4.5oz over 3 hours to go home, and got to about 2oz. He ate but didn't want to drink much at all today. Needed medicine for nausea and to calm him down to rest.

Luke was upset and didn't sleep well at all last night. By 4am he got some stronger pain medicine and got a little sleep. At 9am his pulse/ox level started dropping too low and has needed oxygen since then.

Both have been on strong pain medicine and resting most of the day. We will stay tonight and see how they do tomorrow.

Surgery Day

Yesterday was a very stressful day. I had a great weekend serving at church, which means five hours Saturday and five hours Sunday to mix the sound for worship team rehearsals and the three weekend services. Monday was the day to do laundry, clean the kitchen, go grocery shopping and get everything packed and ready for the overnight hospital trip while the boys were at school.

One if the surgery nurses usually calls sometime between 9-11am to ask a bunch of health/medicine/sickness questions and let me know what time we need to be there the next day. Waited, waited and waited for the call... I started calling at noon and left a message. A surgery nurse called back, went over questions and let me know that Jack would probably be cancelled since he was still on antibiotics for strep. That put me in a terrible mood for the rest of the day. The nurse would check with anesthesia and call me back, but that took almost four hours and the answer did not change. I explained to the nurse that Jack has had strep 10 times in the last 11 months, this time he has not really been sick (just threw up once at school so we went to the dr to be safe), and that he probably would be no healthier than now on whatever date they could reschedule for. She understood, gave me the time to check in, and let me know that it would be up to our ENT Dr & anesthesia to decide if Jack would be OK for surgery.

We picked up the boys from school, had dinner with family, prayed a lot and finished packing for the hospital stay.

This morning was great. We arrived at the hospital, saw the doctors, and everyone agreed with us that Jack would be fine. Thanks so much to Mimi for coming and helping with the boys before surgery, in recovery, and giving us a lunch break after we moved upstairs to our room. More thanks to our family, pastors and friends who prayed for and with us today and a few that came to visit and check on the boys.

Surgery was great! Both had tonsils and adenoids removed, Luke had one ear tube replaced, and Jack's tubes were removed because his ears looked great. Both also had blood taken - Luke to recheck his liver functions and Jack to do some allergy testing. They did well in recovery, and by the time we moved upstairs to our room, both were very calm, relaxed and quiet. Jack has a popsicle and some juice very quickly and their nurses are amazed at how well they are doing!

We should be headed home tomorrow and the rest of the week may not be as easy, but we're very thankful that the boys did so well and we were able to get both of them done together. God is good!

Surgery for the boys next week

Since last fall, at least every month Jack and Luke have had ear infections or strep. This spring both had tubes put in their ears, and that has helped stop the ear infections. The strep has continued, though. Last month was Jack's follow-up appointment with the ENT doctor to check his ears and tubes. We brought Luke along, explained the continued problem with strep, and he easily agreed that it's time to take their tonsils and adenoids out.

Last week Luke had an appointment with the GI doctor to talk about his feeds, medicines, and plans to start the process of changing how he's fed to eventually get him eating by mouth. Luke was on the third day of a runny nose/congestion, so we had the doctor take a look at his ears. Luke's left tube was gone and there was some infection. So, Luke will also get a tube replaced while he's asleep for the surgery.

Jack's stomach had been bothering him earlier this week and on Wednesday threw up all over the place and had to be picked up early from school. Took him to the doctor yesterday and it's strep again! Hopefully the last time for a while... While Jack is in surgery, he'll have blood drawn to do some allergy testing. He has stomach issues every couple of weeks that we think is unrelated to his throat and ear infections. Always different foods, days, times - nothing we've been able to figure out on our own, so maybe the allergy test will give us an answer.

The boys will have surgery together (well, one right after the other) on Tuesday the 14th at AR Children's Hospital. Won't know the time until Monday, but will probably be in the morning. They will be admitted and we will all stay overnight on Tuesday. If all goes well, we should be home by Wednesday night. It may be a long and tiring week, but we'd rather do both at the same time and only have to go through this once. Thanks for your thoughts and prayers. We'll post updates next week.

Past 2 weekends...

Luke has been showing more interest in food! Last weekend he ate 4 cherries and 2-3 animal cookies. This weekend he ate pop corn and animal cookies! And at school he ate mini marshmellows and cookies for his therapists. This is amazing for Luke. We also did a trial of feeding milk into his tummy and he did great. He got three 2-3.5oz feeds on Saturday and didn't throw anything up! He was so excited to get "milkies in his tummy". One time I asked him if he needed some milkies to go into his tummy and he screamed yes! He then ran and jumped on the couch and pulled up his shirt for me. I love that he is doing so good. Today we pushed his first feed up to 4oz and he wasn't able to keep it down...lesson learned! I have his backpack on and have his pump to give him 2 oz every 1 1/2 hours. So far so good! We have a GI appointment at the end of the month to discuss medications to help Luke out if needed. We are hoping to do all day feeds into his belly and to do night feeds past his stomach.

The boys have really taken off with the potty training! Every morning the past 4-5 days the boys wake up asking to go to the potty and major accomplishment is they are pooping several times a day on the potty! Sorry for poop talk but they get so excited about it.

One of Luke's teachers told us this story that still makes us giggle: a new prospective mom and child were touring the school and went into Luke's class since the child will be in there next month. Luke ran up to them yelling (with his fists thrown up in the air) "I pooped in the potty!!" He then grabbed the mom's leg and hugged it while still yelling about the potty. The mom laughed and gave him a high five!....Thankfully she understood and gave home the encouragement he was looking for.

Friday night we went to a birthday bash for the opening of the I Can! Arts Center. It was fun and the weather turned out great as a storm was coming in and cooled it off and had good cool winds. Here are some recent pictures:

Update on Luke's MRI

Summer arrived for good here in Arkansas last week. It's been hot for a while, but now (like most of the country) we've had triple-digit heat with heat advisories most days. Around here, June through August usually brings miserable heat and humidity - September and the start of football is when the relief comes as the temperature slowly begins to drop. On Fridays the boys get wet with the sprinkler during recess at school, but today it was even too hot for that! They only got 15 minutes (instead of 30) outside this morning, and by the afternoon it was just too hot for them to be out (103 degrees today).

Luke's MRI results came back and everything looks fine. There was one small area which probably was a small brain bleed (which we never knew about) during his first few weeks, but it is not causing any problems and is nothing to be concerned about at all. No sign of any chiari malformation. Just like all of Luke's other tests, we're happy that nothing serious was found (and not having to find the best hospital for a head/brain surgery) but once again are left without an answer or explanation of why he won't eat and what we should do to fix it.

As we've said before, Jack and Luke have come through so much. Every time we are at the hospital for a clinic appointment or feeding tube change, we're reminded of how lucky we are. If Luke is never able to eat, we can live with that. It won't be easy, but we have learned to adjust and are thankful that every serious condition we have tested for has come back negative. It's taken almost two years to get through every procedure and test that all of our doctors and specialists have recommended. Since no physical explanation has been found, we are ready to start the long process of overcoming the psychological reasons for Luke's oral aversion - lots of steps and details that we'll share in another update.

The boys have had many ear/strep infections that started last fall. This spring both had tubes placed in their ears and the ears have been much better. The strep infections have continued at least once a month. Monday Jack had a follow-up appointment at the ENT clinic (with our favorite specialist at the hospital) to check his ears. We brought Luke with us and talked about our battles with strep. Dr R was great, looked at both of them, and agreed with our thoughts. Both boys will have their tonsils and adenoids removed on Tuesday, August 14th. Yes - it will be a terrible couple of weeks, but we'd rather only have to get through it once.

This doesn't happen very often, but they do love each other and sometimes show it

 Painting and playing with chocolate pudding in the bath