1 Year Update

As is the usual, I should probably give an update over the last month. Overall, Mason has done well, but did land himself back in the hospital for a few days at the end of February. Other than that, he's had a great month including a fantastic birthday party! It's amazing how quickly a year can go by and how long it can take all at the same time!

Lungs/Heart:
At first, we thought the lungs were what landed Mason back in the hospital, but fortunately, the chest xray looked the same as right after surgery in December (when Mason was needing only about 1.5 L of oxygen) and he really didn't have any extra fluid on his lungs. Since coming home from the hospital on 2/27, Mason's oxygen need has continued to come down. He is now needing somewhere between 1.75 and 3 L of oxygen during the day and has been able to have it turned down to 1.0 L at night. The secret, we think, is a new medication. Mason started on a low dose antibiotic on 3/11 and has seen a steady decrease in his oxygen need ever since. While there are risks with taking an antibiotic regularly, these are far outweighed by the risk of staying on steroids for a long time. We are starting to see more effects from the steroid including some growth slowing which can really create problems with Mason's lung growth. So, in an effort to getting off of the steroid, the antibiotic will help to decrease the inflammation on Mason's lungs. So far so good. We even started weaning the steroid again yesterday. Let's hope this does the trick!

As far as the heart goes, thankfully, his heart is doing just the same as it has since summer. His additional need for oxygen hasn't put any more stress on the heart!


Eating/Weight:
Oh, I can't wait for our problems with eating to go away! This has continued to be a challenge over the last month! With the addition of the fat and oil to Mason's formula, the "dumping syndrome" symptoms have decreased. Unfortunately, the math adding up his calories was wrong and Mason grew too quickly - almost 2 lbs in 1 month! At this point, babies' growth normally slows down a bit, but Mason's sped up because of too many calories in. So, without any reserve in his breathing, he outgrew the capacity of his lungs and landed back in the hospital on Feb. 23rd. Our little guy went from "failure to thrive" in August to obesity in February. Not a good plan for one with such fragile lungs. So, he's on a diet. We've decreased his caloric intake significantly and his growth has slowed down. His height is now catching up with his weight slowly which is vital for his lung growth. Thankfully, Mason hasn't put on as much weight since the last update. With the diet he's been on, his growth has slowed. The official stats from his 1 year doctor visit: 19 lb. 3 oz (just 1/2 lb. more than last month vs. 2 lb. gain in the previous month!) and 27 inches long.

Mason in August '08

Mason in March '09

When he went back to the hospital, it took some time to figure out why the oxygen need went up so significantly. One theory was that he was again aspirating his food (slipping it into his lungs) since we had started feeding him by mouth again. Since we can't rule that out completely, we have decided to stop the oral feeding until all other variables can be controlled (i.e. not cold/flu season, oxygen stable, weight stable). When we start again, we're going to look at other options so that perhaps the food will be more palatable for him than when we started a month or so ago. We want the experience to be pleasant for him, so may need to do things a little differently.


Development:
The best news over the last month is Mason's development. Sometime in Jan/Feb., Mason decided that he really didn't want to put weight on his legs. With some perseverance on Daddy and Mommy's part, his is down happy to stand holding on to us whenever he gets the chance. He's still not crawling, and may never do so, but he is much more able to stand than last month. We are so happy to see some progress. Now we just need to keep the momentum and encourage less and less support with standing. Maybe in the next couple of months, he'll progress to standing on his own or maybe even cruising around furniture!! I'm sure I'll regret this statement, but I can't wait for that to happen!

We hope this finds everyone doing well. Thank you for all of your support and prayers!

Love, Christi, Bill, and Mason

It was exactly 1 year ago today (redux).....

First some stage setting and another warning - some may want tissues nearby

Tuesday, March 18th -- I got hooked up to the monitor again - nothing unusual about that. I joked with the nurse who had become my friend that she was so good at finding Mason's heartbeat - she could always do it on the first try, and she did this time, too. Then, as she turned to leave the room, the heartbeat was gone. No problem, just need to move the monitor - guess she wasn't quite as good this time. Move the monitor, can't find it. Move it again, can't find it. Move it a 3rd time, can't find it. I roll to my other side. Still can't find the heartbeat after several tries. Ok, let's get on hands and knees, maybe he's just hiding. Still can't find the heartbeat after several tries. Hit the nurse call button, we need some help in here - we may need to start an IV and we may need to get this baby out now! Finally, after 4 1/2 minutes of trying, there he is, but barely! Just so you know, 5 minutes is the cut off before emergency c-section. IV is started, can someone please call Bill??? He's on his way! After 12 minutes, Mason's heartbeat is regular again and has lots of peaks like he's doing ok saying, "What were you worried about, Mom? I was just getting an umbilical cord squeeze high. Geez."

As a precaution, I was told to stay on the monitor for the next 24-48 hours. Mason's heartbeat was great for 24 so they told me I could come off of it. I wasn't so sure, so requested to stay on for a while longer.....

Thursday, March 20th -- I started bleeding again - a lot - at 11:30 pm (6 weeks to the day after checking into the hospital). The contractions started a short time later - not really intense, but for the first time, regular. They lasted for 30 seconds to a minute and happened every 5 minutes or so - I really only knew that because I was still hooked up to the fetal monitor. This time, though, they didn't go away. Instead, they got more intense and more frequent. By 4 am, they told me I couldn't eat breakfast or drink any more water, just in case I had to go in for the c-section. By 6 am, the on call doctor had been notified and came in to do an ultrasound and cervical check. Ultrasound looked ok, but the cervix looked "boggy" (whatever that means). By 8 am, it was time to call Bill. By 9 am, I was having a conversation with the neonatologist (preemie doctor)- who we would eventually know very well - and my perinatologist (high risk pregnancy doctor). If the lungs are developed, and we have no guarantee that they are, the risk for complications at 32 weeks gestation are minimal - he may not be a genius, but he will have normal brain development. If the lungs are not developed, and we have no guarantee that they are not, we have no way to predict what will happen............

It was exactly 1 year ago today that we lost Mason's heartbeat on the monitor for the 2nd time.

It was exactly 1 year ago today that Bill and I were so excited to meet our son that we were running around trying to do something when there was nothing to do (Bill, literally, me, figuratively)

It was exactly 1 year ago today that I told my mom what had happened, but that she needn't worry or come in. Afterall, she was working at the Obama event at the Rose Garden.

It was exactly 1 year ago today that the nurse came in and said ok, we're ready to take you into surgery. Oh, and by the way, you have to have everything out of this room because you're not coming back to it, but we don't know where you're going to be after surgery. I had been there for 6 weeks and had no intention of leaving before this moment so stuff was everywhere! You're telling us this, now??????

It was exactly 1 year ago today that Bill had something to focus his energy on. He was running around the room trying to pack up 6 weeks worth of clothes, food, cards, flowers, and things to entertain me - and try to fit them on a fairly large cart that wasn't nearly large enough.

It was exactly 1 year ago today that Bill donned the "space suit"

It was exactly 1 year ago today that we welcomed Mason Ryder to the world at 12:41 pm on Friday, March 21, 2008

It was exactly 1 year ago today that Bill watched his son be wisked off to the NICU as his wife was passing out from losing too much blood during surgery.

It was exactly 1 year ago today that Bill watched the doctors do CPR on his son and put a tube down his throat to hook him up to a ventilator while his wife was getting 2 blood transfusions.

It was exactly 1 year ago today that we made what would soon be the first of the most difficult decisions of our lives.

It was exactly 1 year ago today that we made the decision to baptize our son the night he was born because we didn't know if we would make it through until morning.

It was exactly 1 year ago today that our miracle arrived and would go on to become the toughest kid I've ever met.

We love you Mason! Happy 1st Birthday!

An early Birthday Present

Mason was able to go to Seattle to meet Bonnie for the first time on Sunday. We had a great time talking about how Mason looks like daddy and how chubby he has become (Mason that is). Mason also got an early birthday present from her.




Thank you Bonnie

A long week.....

The past week has been quite tiring for us, thus, no blogging. The night that Mason came home from the hospital turned out to be a good night with oxygen needs going down to about 2.5 liters. He was really happy, giggly, and relaxed. That night, he slept for about 15 hours, only stirring a couple of times for a diaper change and nebulizer treatments.

After that, though, the nights got longer for us. For the next few nights, Mason's teething took on a life of its own and he awoke many times a night because of it. Whenever he has pain, he gets to grunting more and doesn't take in good, deep breaths. Because of that, the oxygen level drops and his need goes up. Then, strangely (for Mason at least), his oxygen saturations went down quite a bit while he was sleeping on Wednesday, Thursday, and Friday nights - we had to turn him up to 6 liters on 2 of those nights and 5 liters on the 3rd. It was quite worrisome for us because this is something new. So, we called the doctor. He seems to think that Mason may be starting to follow a "normal" lung disease type of pattern in which he just needs more oxygen at night. They don't want to up Mason's steroid dose which has been the treatment in the past because it has so many harmful effects. Apparently, the side effects of too high of an oxygen level are much less dangerous than the side effects of more steroids.

So, here we are. Maybe at a new place in Mason's development, maybe at a bump in the road. Who knows. We just need to roll with it and make sure the oxygen delivery guy is our best friend!

Regardless of what's going on now, I am constantly reminded of how much of a Miracle it is that Mason is even here and doing as well as he is. One of the nurses in the NICU who spent many a night with Mason and (helped to prevent a disaster when his intestine herniated) is walking in the March of Dimes walk on April 25th. She is walking in honor of Mason and another NICU baby with whom she worked. We were so lucky she was there watching over Mason in the NICU. If you are so inclined, please take a look at her website (click on the red "x" on the right - unfortunately, I couldn't get the picture to come through).