A Family of Four

Sorry it's been a couple of days, but we've been busy!!! There have been lots of ups, and a few downs, but overall very successful.

Isaac started us out on Sunday with orders to turn off his oxygen (he had been on 1L of flow at 21%). Ryan and I went to church, and when we got back, Isaac was tube free! Then, they decided it was time to move to a crib from his isolette. Our nurse, Amanda, saw to it that his crib was outfitted with a KSU Wildcats quilt. He was sleeping really soundly all day, and started to show some signs that he was working really hard to breathe on his own without any oxygen support. So, they ended up putting Isaac back on oxygen, the same as before. He just wasn't ready to go 'cold turkey' off of the oxygen.

Isaac has also had lots of attention from the Physical Therapy lady. He doesn't complain, but he doesn't seem too excited about it either! She has taped his club foot to help position it more towards midline (I'll try to get a picture later to better explain). We also are working on range of motion exercises/stretches for his little legs. He is tolerating those well, and they seem to be helping.

As of today (Tuesday, May 25th) the neonate, Dr. T ordered for Isaac's flow on his oxygen be turned down to .5L flow. He's been on that for about 4 hours, and seems to be doing well. We'll see how he tolerates it by tomorrow morning before Dr. T decides to either turn it off, or let him go another day on .5L flow.

Sir Isaac is continuing to learn to eat. He does okay with a bottle -- doesn't quite take a full feeding (currently 45mL), but is working up to it. He needs to take some eating advice from his little brother!

As for Elias, things have remained stable, and even boring, which is very good in the NICU! His changes are that he can feed orally twice a day, and has even polished off a bottle (Monday, May 24th). He currently gets 25mL per feeding, fortified to 24 calories.

Eli is now 'wireless' for the most part. He has a feeding tube, and then all of his probes that measure his heartrate, respirations & oxygen sats. We got orders today for his midline to be taken out, so no more IV!   He is still in an isolette, but the purpose is so that he doesn't have to work very hard to maintain his body temperature. This will help him conserve energy so that he can grow quicker. He currently weighs about 3lbs 8oz (1593g). We have been told that he will make the transition to a crib from his isolette when he reaches a weight over 1800g (4lbs).

Mr. Eli is a very calm and easygoing baby. He's happy most of the time, and smiles a TON! So much fun to see! Isaac lets us know when he's upset, usually means that he has a dirty diaper!

While Isaac was tubeless on Sunday, we got a chance for all 4 of us to sit together as a family. This is something that we hadn't gotten to do yet, and was so very special! Enjoy our pictures of our Family of Four!

Again, we can't thank each of you enough for all of your thoughts and prayers. To think of the position we were in 11 days ago, and to see how far we've come, we know that it is because of all of the prayers that have been and are continuing to being sent to the Man Upstairs!

Finally, A Medical Update

For all you nurses and doctors out there (and those who stayed at a Holiday Inn Express), here is your latest medical update on the boys.

Elias is doing very well. Yesterday he was diagnosed with an Atrial Septal Defect of the heart. While not something you want to hear, it is something that is correctable and should not pose a huge problem for him. From what we were told, it basically means he has a hole between the upper two chambers of his heart. This allows blood from one chamber to go into the other and vice versa. It may make him work a little bit harder but cardiologists didn't seem overly concerned. He will monitored by the Children's Mercy Cardiologist team for quite sometime and may require heart surgery in a couple of years to patch the hole if it doesn't close on its own. As for HI, THIS IS ISAAC, DAD SET THE COMPUTER DOWN FOR A SECOND, SO I DON'T HAVE LONG TO TALK, MAN, THIS PLACE IS HUGE, THERE ARE SO MANY, CRAP, HERE HE COMES, TALK TO YOU ALL LATER!

Okay, I suppose I can leave that message. Turn your back for just a minute...Anyway, Elias is gaining weight like a champ. He is up to 1557 grams (get your conversion calculators out people). Okay, I will just tell you, that means he is about 3 lbs, 7 ounces. He is now above birth weight!! He is breathing completely on his own, no nasal cannula, no nothin. He is also off his lipids (fats) and learning to eat. Way to go Eli! His general concerns are to continue to learn to eat, gain weight, and regulate his own body temperature (since he is so small). Overall, he is doing very, very well considering his size. And, as you will see in some posts in the next few days, he SMILES all the time. Anyway, those pics will be here tomorrow most likely. And now for Isaac.

Isaac still has some hurdles. Let's start with the good news. He is gaining weight (he is almost exactly 5 pounds) and is doing well learning to eat. They have lowered the nasal cannula settings to 1L of flow and will hopefully continue to wean him off the cannula over the next couple of days.

The bad news...there really isn't any right now! What we are learning about Isaac is that he will have quite a few things to track as he begins to grow. Those will be hurdles we will have to overcome when they arise, but for now, we are just extremely grateful for the progress he has made. Things we do know: he has a club foot (right foot), which means his foot is turned almost completely inward. He receives physical therapy everyday for this and we hope that surgery (farther down the road) will help alleviate this problem. He still has hypoplasia of the lungs (underdevelopment). This will most likely be a concern for quite sometime. However, at this point, he seems to be learning to deal with it by taking shorter breaths more frequently. It is certainly something they will have to monitor. And, of course, his spine. Orthopedic spine specialists were by today and were not able to give us much information yet.

Isaac had a MRI of his spine yesterday (Friday) and the radiologists and orthopedists were to analyze it today and tomorrow and we will most likely hear something on Monday. Isaac definitely has a twisted spinal cord and his rib cage is short. What this means, we are not entirely sure. Because he has movement in his legs, they will proceed cautiously. Rumors are he will undergo spinal surgery (scary scary term by the way), but will not have that surgery until the age of 2-3 years old. They are definitely concerned about his overall movement capabilities but for now, are satisfied with his progress. We have successfully navigated 8 days here at Children's. We most likely will get to know this place real, real well over the next few years.

HEY, DAD SAID I COULD FINISH MY THOUGHT FROM EARLIER. WHAT I WAS GOING TO SAY WAS THERE ARE SO MANY GOOD DOCTORS AND NURSES HERE THAT YOU ALL SHOULDN'T WORRY TOO MUCH ABOUT ME. I AM STRONG (YOU SHOULD SEE MY BICEPS!) AND I WILL BE JUST FINE. NOW, IF ONLY I COULD GET A DVD PLAYER IN HERE AND WATCH SHREK! SEE YA PEOPLE!

Hope all is well on the outside (that is what I am calling anywhere but the hospital) and we look forward to seeing you all soon.

Too Much Information (the TMI post!)

Okay, here is the scoop as of Tuesday, May 18th. The boys are continue to improve their breathing. Both boys are off of the CPap machines and are now both on high flow nasal cannulas (both at 21% Oxygen, set at a 2. This is a good step. It has been a very busy day for Isaac, more on that in just a minute.

Elias continues to be a trooper. He loves being held and is beginning to smile when he is happy. He is doing well with his first feedings and we hope he can gain some weight in the next few days. He is still at Research and while we long to have everyone here together, that doesn't seem to be working at this point. We will continue to do our best to see him and give both boys all the attention they deserve.

Isaac is doing well on just the nasal cannula, no setting changes were anticipated today. But after the initial rounds, it was one specialist after another for Isaac today. This was the proof that he still has some major hurdles ahead. Isaac saw a geneticist who is trying to get an overall picture of what is going with him. She didn't have a ton of answers yet, but said she will continue to investigate and keep us informed. Then Isaac got to meet his new physical therapist. She is here to try and get more elasticity in his legs. So we stretched him out and then went through some exercises for his foot and legs. She also helped us understand how to position him so that he doesn't always lay on his right side. After PT, Isaac got to see a resident orthopedist. Not the most informative guy ever, and he also commented we would be seeing more docs from his office over the next few days. We have also seen our normal neonatalogist, our nurse practitioner, and a whole slew of nurses. We will be posting some more pics tonight or tomorrow.

Oh, and my girls soccer team won against arch-rival Raytown in their district soccer game yesterday. They beat the Blue Jays 2-1, scoring with just 58 seconds to go. Raytown was 16-5-1 going into the game, but...they are 16-6-1 now (oh, and we beat them earlier in the year too!). WAY TO GO LADIES, ISAAC AND ELIAS HAD HIGH HEART RATES AFTER HEARING ABOUT THE WIN.

Thanks again to everyone. Come back and see the pics soon!

Burning the Midnight Oil

Well, there is quite a bit to write about tonight (including a letter from the boys to their mom at the end of this post). First, both boys are stable and both have made some progress today in their quest to gain strength breathing and soon will also begin attempting to gain weight through regular feedings.

On another positive note, Kristi was released from Research late Sunday night and has joined me at CMH and is currently sitting with Isaac for the first time. She was immediately able to calm him down when he was fussy and has had the pleasure of helping change his diaper (I was lucky enough to have done that a few times for him already). The only bad part of this is that Elias is still back at Research. So now we will juggle who goes where over the course of the next few days.

As for the actual status of the boys. Isaac is now off his breathing tube! He has a cpap machine (breathing aid). For all you medical people out there, his oxygen setting is 21% (room air) and a PEEP (pressure) of 5. He seems to be doing well with that. They will let him soak all this in tonight and into tomorrow morning before deciding whether or not to try and ween him a little more. Isaac will have a whole host of doctors looking at him tomorrow to see what all needs to be done, provided his breathing holds steady.

Eli is also on a cpap machine at Research. He is on room air and a PEEP of 4. His main objective is to grow and learn to regulate his body temperature. He continues to breathe a little fast, but overall he seems to be stable. It is unfortunate he is at Research and his brother is here at CMH. We are continuing to advocate a transfer for Elias so that he may join his brother here at CMH and make us a family under one roof. Continued thanks to everyone for the kind words and prayers, it is hard to believe it has only been just over 60 hours since they were born. This will be a big week for them!

The boys drafted a letter for their mom (they texted it to me actually) and asked me to type it into the blog. So here goes:

Dear Mom,

Thanks for taking such good care of us. We liked when you were on bedrest, cause we could kick you more easily and make you notice us. If those kicks hurt, we are sorry. Elias knew not to kick you when I was kicking but sometimes got carried away, so you might have gotten two kicks at the same time. We totally didn't mean to do that.

Thanks mom for providing us with nutrition for the past nine months, though sometimes we wish you would have laid off the mac n cheese, you may like it, but why does that mean we have to? Maybe we could have shells n cheese sometime?

Thanks mom for worrying about us when we were tired and having smart people look at us when we just didn't feel right. We didn't know why we felt that way, just that we needed a little extra love, and you were always right there for us.

Thanks mom for not being too hard on us in those early months, you rock!

Thanks mom for making sure we were safe at all times, and gently nudging us periodically. We love you!

Thanks mom for providing us with a wonderful family. Our grandparents and aunts and uncles, are awesome. Dad is okay too, but why does he keep wearing that dang Mizzou hat? Didn't you already tell us we were little Wildcats?

Thanks mom. Why? Just for being a great mom.

Thanks mom for helping us through these first few days. We know we have scared you a bit, but we are working on correcting that, be patient.

And finally, thanks mom for giving us a chance at life. We LOVE YOU!

Your boys,

Isaac and Elias