Medical Updates for Isaac

On Wednesday, we took Isaac to the Spina Bifida Clinic at Children's Mercy Hospital. The clinic is a great place to be able to see multiple doctors all in one setting and it was nice to have all of his providers except for his Orthopedist that is following his spine there to consult with. To give a quick overview, we saw his Neurosurgeon, Orthopedist (for his club foot), Urology, Physical Therapy, Rehab, Nutritionist and a general Pediatrician. The only downside is that his appointment lasted almost 4 hours. That is a long time to try and keep Isaac happy!

From his orthopedist, he will continue to wear his foot brace for almost another year to continue the correction of his right club foot. It will not be essential that he is wearing the brace every night though it will be used more often than not. The explanation given to us was that we hypothetically could get away with bracing every other night, but with a child Isaac's age, it is hard to explain to them why they have to wear their brace some nights, and not others. So in theory, if Isaac isn't protesting, then it would likely be easiest on him, if we just keep the routine the same, and have him wear it nightly. And if we skip a night here and there, no big deal.

From his neurosurgeon, Isaac will continue to be evaluated by Dr. I (who will continue to consult with Dr. S). Our biggest concern at this point is Isaac's tethered cord, from a neurological standpoint. Our questions centered around the risks vs. benefits of the surgery to untether Isaac's cord. Initially, this procedure was to be done in tandem with Isaac's spinal stabilization surgery. As of Isaac's last appointment with Dr. S, the spinal stabilization surgery was tabled until he has a CT and MRI to reevaluate to make sure that the procedure is necessary. We were afraid that his tethered cord would not be addressed, which is why we had these questions. In talking to Dr. I, we just asked what the risks were to not untether the cord. The answer to that is that it is highly likely that his legs and lower trunk function would have a significant chance and likelihood of getting worse, if we do not untether the cord. A better explanation of this and visualization is that imagine as he gets taller, and his spinal cord remains attached at the bottom, it will strain and pressure will be put on it, especially where his spinal column narrows.

However, untethering the cord will be more of a preventative measure. Isaac's legs likely will not gain more strength or use because of untethering, but we would be more or less preventing them from deteriorating any further, and preserving the use that he does have in his legs and lower trunk (including, but not limited to bowel and bladder function).  We can continue to work on gaining muscle in his legs through intensive physical therapy, and working with him in his stander, which we will continue to do.

And finally, the update from urology. Isaac has a bladder that is thicker than usual and a high amount of pressure within his bladder, and could possibly be classified as a Neurogenic Bladder.

In addition the muscles that should work together to allow the bladder to empty are not working together properly. This also increases the pressure in his bladder and does put him at risk of urine backing up into his kidneys, and could in turn cause kidney damage. Dr. G was unsure what the long range implications of these developments will be except that it will range from his muscles learning to work together, to maybe, to the other end of the spectrum which would be a catheter being needed. In the short term, Isaac will start a new medication that will hopefully help his bladder become a little thinner and more elastic. If this happens, it should hold more urine and might allow things to start working together a little more. We shall see. If a catheter is needed, and it is quite common amongst individuals with spinal defects, we will do all of that explaining at that time.

Another visitor that we had was Physical Therapy and Rehab. They mainly wanted to get a baseline of what Isaac can do now, what muscle groups he uses, and note any that he does not. They watched all of the way down to his ankles, and noted that he does move his ankles on his own, not just reflexively. They asked us if we had thought about a wheelchair for Isaac as he gets older. This might be a shock to some of you - but yes, we have had several very indepth conversations with some of Isaac's First Steps therapists, and have begun to cross that bridge mentally. I won't lie. It was a tough bridge to begin to cross. We first started talking about it back in January. I (Kristi) remember a very cold day, spending much of my lunch talking to one of Isaacs therapists on the phone, and working through some of my emotion around it. Too bad she couldn't bill my insurance for that call!!! Since then, Ryan and I have had a few other conversations about it, but hadn't put that much thought into it. Fast forward to this appointment with PT & Rehab, and they asked if we wanted to see a kids wheelchair. They mentioned that it would be a bit big for Isaac, but would give us a good idea as to what is in our future. We said sure, to go ahead and bring it down to our room. As soon as they brought it in, Isaac was chanting "Go, Go, Go, Go, Go..." Very similar to Finding Nemo, when all of the birds are going "Bite, bite, bite, bite, bite!!!" He clearly wanted to sit in it, so we buckled him in. It was almost like it was second nature to him, and his hands reached out for the wheels, and he immediately started maneuvering the chair. The look on his face was priceless. He was SO proud that he could make it go on his own. He even figured out how to turn circles, and go forwards and backwards. All within a matter of about 10 or 15 minutes.

Let me be completely honest. Through all of this - sure there are days and moments that stink. But let me also tell you, that in the instant that I saw the look on Isaac's face, it sure said so many words to me. It is hard to explain, but I really feel like what God taught me on Wednesday was that this is SO not about me!!! This is about Isaac. And to Isaac - that chair is freedom and independence. Isaac needs us to be happy. To be upbeat and to be his biggest cheerleaders. And Eli needs us to set an example for him. We need to be able to lean on one another, so that we can be examples to our boys on how to deal with adversity and disappointment and be their biggest advocates.

Under Construction... (and hopefully no roadblocks!)

We've had LOTS of appointments this week! They started on Tuesday morning, with the Orthopedist for Isaac. To be honest, we thought we were going to get a game plan on how to proceed with Isaac's club foot. And that is exactly what we did... and then started our plan! Dr. S told us that the way we are going to correct Isaac's foot is by serial casting, and then a brace. To break that down, Isaac got a cast on his leg on Tuesday, and for the next 4 or 5 Tuesdays, we'll trek back to CMH, where Dr. S will take off Isaac's cast, and then reposition his foot and recast it. When we are done with the casting in 5 weeks, little man will get a brace that he will wear 24/7 for 3 months. After his 3 months are up with it, then he will wear it at night until he is 3 years old. I'll post a picture later. He's pretty darn cute with the cast too!

We were supposed to have an appointment with Physical Therapy for Isaac after the Orthopedist, but there wasn't much they could do with his foot while its in a cast, so we were on our way from there.

The other task we wanted to complete while at CMH was to get Eli fitted for his actual carseat. He came home in a car bed because he is so tiny, but he was over 4 and half pounds, and getting to tall for the carbed. We wanted someone to look at him in his carseat and make sure that it fit him properly so we could be sure that the positioning wasn't affecting his airway, and that he is safe in it. Sounds easy, eh? We had tried calling the carseat nurses since Friday of the previous week, with no return calls. So we headed up to the NICU to see if our friendly front desk ladies could try to page them. Again, no answer. So we went over to find their office, which was like a mile walk itself, and posted on the door is that their office hours are from 10am - 4pm by appointment only. Explain to me how I can get an appointment, if no one answers the phone or returns calls!?!  So we took Eli back home in his carbed.

In the afternoon, we had a surgery consult with a different Dr. S for Isaac's right inguinal hernia. If you remember, they had told us while the boys were inpatients there that they'd like to wait until he's 6 months old, as the anesthesia risk goes down at that point. So that was all the basis we had to go on for that, until the appointment. Dr. S seems to think that with some of the complications that Isaac is having and the size of the defect, that we need to do surgery sooner rather than later. He suggested next week. Of course, nothing is that easy, as when the scheduling nurse called, she said his next available time to do the surgery isn't until August 4th. Ummm, we're under the impression that it is a bit more urgent than that, so we conveyed that to her. Of course, Dr. S is out of town until Monday, so we're still waiting to hear a confirmed date for Isaac's hernia surgery.

And, if those appointments weren't enough, we had Pediatrician appointments for both of the boys on Friday. Yet with a different Dr. S! Isaac weighed in at 6lbs 7oz (with his cast) and Elias at.... drumroll please...... 5lbs 1oz! I think that Eli is really proving that there was just a problem with how his placenta and umbilical cord formed and provided him with nutrition, rather than there being a problem with him and how he grows. He continues to amaze us with every weigh in. We'll continue to watch Isaac, as he isn't gaining as fast as we'd like, but also with his Spondylocostal Dysostosis (SD), he won't grow longer as quickly as a 'normal' baby would, thus his weight gain may be less.

To celebrate the week, and part of Fathers Day, Daddy got a new grill, and we had lots of family over on Friday night to grill out. Great-Grandma and Great-Grandpa Krehbiel brought over some ribeyes, and Great-Grandma fried up some squash. Mmmmm. We also had some homemade ice cream, pie, cake, salad, and the list goes on! Grandma Laine, Great Aunts Lisa & Lynne, and Carrie and Erica were also here with us. We're looking forward to Pops/Grandpa Tim to make his way up here tomorrow for Fathers Day!

We hope everyone has a great weekend, and Fathers Day.

Hugs-

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.