Ryan has tolerated his new ventilator much better than his last. They’ve been able to wean him down to room air overnight and have also been able to wean his other ventilator settings down today. The doctor told us today that Ryan has responded very well to this vent and that he can stay on it for up to weeks at a time. He said in Ryan’s case that if this is the vent that he best ventilates with then he can keep it as he grows bigger! (I feel like a broken record but growing is his goal now). It was a ‘load’ off my mind! They referred to this ventilator yesterday as a ‘rescue’ type ventilator and I was worried he wouldn’t be able to stay on it for very long.

Ryan seems to really love ‘touch.’ His nurse said that it is remarkable that he can recognize his family so well. We have to be careful when we walk into his room because when he can hear us his hand will open and close and the last few days he has been reaching his hand out for us! They did tell us that he has shown to be easily consolable. He has also shown this last week to really love his fleece blankets. I can already tell he is going to need many fleece blankets and will want to be held most of his life. Dean loves to give Ryan night night kisses. It is one of the sweetest things I’ve ever seen. We both kissed Ryan goodnight tonight and he seemed to enjoy that touch also. He relaxed and seemed to ease on to sleep and at that time we slipped out before our voices woke him and he returned to being demanding of attention/love.

If you look closely you can see the grip he has on my finger!

Smokey can be too funny at times. When we returned home from the hospital this evening Smokey was intent on smelling my hands. I thought he might have smelled supper then I realized that he smelled Ryan. I asked him if he smelled baby Ryan and I think that if the nubby had moved any faster that it might have flown off!

We brought one of Ryan’s eye cover/cloths home a few weeks ago and Smokey went wild over the smell then also. I sat the cloth on the arm of the couch and Smokey laid himelf over the cloth as if he was pertecting it!

Part Two

Ryan now has a new fancy ventilator (well it doesn’t look as fancy but it does more fancy work). His lungs are immature (naturally) and have become more rigid and stiff. This makes gas exchange much more difficult. Normally on an adult we would increase their rate and adjust the pressure settings. On little guys like Ryan adjusting the pressure does more harm than good. His new Vent has him breathing at a much greater rate and uses lower volumes of air. It is closer to being around 100 breaths per minute. It allows the little sacs in his lungs to stay open and makes it much easier on his body to oxygenate. When you look at him his chest doesn’t rise and fall but rather “wiggles.”

With the help of added medication and his better oxygenation his kidneys have kicked into high gear! Both his lungs and kidneys have done more than their fair share of work over the last two-and-a-half weeks. His kidneys have been compensating as his lungs have gotten stiffer and now have gotten tired themselves. We just pray that with the added help of the new ventilator that it will be exactly what his little lungs and kidneys need.

We are filled with so many emotions is it extremely hard to keep them in check! We’ve made it home from the hospital and I’m not sure what I want/need to do first. On one hand I have the overwhelming urge to clean. I guess that is just the need to feel like I’m in control of something? On the other hand I feel like I need to puke! The last few days it seems like I have to make myself eat dinner otherwise it is as if we just ‘forget’ about eating.  Lastly there is the urge to need to cry/scream/sleep that you never know when either of them will surface. We knew that this road wouldn’t be easy and that there would be ups and downs but it seems you’re never fully prepared.

I never dreamed that lightning would strike us twice. When we became pregnant with Ryan we knew that there was a chance he would be a few weeks maybe a little over a month early but as the reports/ultrasounds came in and all looked well we somewhat let our guard down. I was at peace when Ryan was delivered because I knew he outside of me and was safe. Now I feel as though I’ve reentered the realm of the unknown again. I keep reminding myself that he is safe and that all the staff has his absolute best interest at heart and are doing their very best to help him grow and mature. We will make it through this time. .God has brought us this far through this crazy year and I have every bit of faith that he will bring us through his time. There are just days/times that I get scared that it might not be the outcome I want but I know the only way to get through is have him guide and walk us through.

Please forgive the poor quality of the pictures. When he is having rough days I just take his pictures with my camera on my phone. Don't you just LOVE these little (well not so little) feet!!

Part One:

One year ago today we spent the weekend in Dallas watching the Yankees and the Rangers play ball. This was our first trip as a family of “three.” We had just learned that we were expecting Jackson! We had the best weekend! It seems strange that that was over a year ago.  This September 11^th we are spending with our second son as he grows and develops in the hospital.

Ryan had fairly uneventful night. He has tolerated his feedings and the doctor is increasing them to 1ml of breast milk at each feeding time! They will be starting the IV steroids for his lungs today. They have great hope that these steroids will help mature his lungs and decrease his time spent on the ventilator. He has only made 6mls of urine since midnight so they are watching that very closely.

You know it is never a good sign when you’re met at the door because they are doing a chest x-ray, in the middle of the day, and you have to wait to see your son. The only time they get extra x-rays is when there is something concerning. While waiting in the waiting room we see both the Doctor and the Nurse come to talk with us. Talk about trying to give a momma a heart attack! Ryan has greatly decreased his urine output today. He is being restarted on his second diuretic and increasing the frequency of the first. His lungs are very stiff and the added fluid is making it harder for him to breathe effectively. They’ve had to increase both his rate and his oxygen level this afternoon. We are waiting on time to redraw blood gasses. If the medication hasn’t improved his blood gasses then the doctor is going to speak with us about changing him to a new vent type.

I feel so helpless. I wish there were anything I could do for him! We just visited him in his room and spoke to him for a few minutes. It breaks my heart when he hears us and starts reaching for his hand to be held. Normally we can console him but when his breathing isn’t good then we can’t touch him because it over stimulates him and makes his breathing worse. He stretched his little arm out as far as I’ve seen it stretch today and with that little bit of movement his oxygen saturation dipped down significantly. I HATE leaving him but there is nothing I can do. If I stay in the room he continues to fidget and over stimulate himself thus making his breathing worse.  The only option we have is to step back out of the room because until he cannot hear us or smell us he will wiggle and reach for us.

Days like today are hard. I cannot fathom the loss of a second child. I try so hard to remind myself that the last time we added the extra diuretic it helped greatly. I’m trying to remind myself that the last time he started his feeds that it took 24hours for his kidneys to tire out before slowing and stopping. We have made some progress because it took three days for both of those things to occur. It just scares the mess out of me thinking that there still may be a possibility that I could lose him also. Those thoughts are almost overwhelming at times. I know God won’t put anything on us that he cannot bring us through. I know he will see us through this time. I know everything works and plays out in the perfect sequence that they should. I’m just trying hard to keep that in the forefront of my mind but I cannot lie at times the thoughts of possible loss and what will we do are consuming.

Please continue to pray for our little man. We love him so much and can feel each and every prayer! We are truly blessed!  

Ryan had another goodnight last night. He has been tolerating his feedings well and the doctor has written to increase his feeds to 0.6mls! He is still making good urine and his blood pressure has been great also.

His lungs are being cranky but they are going to start steroid therapy tomorrow to help his lungs mature and hopefully decrease his amount of time on the ventilator. We weren’t able to spend to much time talking with him this morning because he his lungs were touchy. He did best when he had minimal stimulation and just rested.

Dean took me to see the Razorback game as an early birthday present. We had a great time! We walked around the golf course for a little while then migrated up to stand at the gate to our seats. We were in for a big treat. We didn’t realize that our gate was directly in the path of the player’s walk though area. We were able to cheer on the Hogs as they entered the stadium! It was a blast!

They had a very nice tribute to September 11, 2001. The Hog was painted red/white/blue and the fans in the stadium really participated in making the seats red/white/blue. It was a very neat site!

I was impressed Dean called the Hogs several times! He said that he did it for me but I think he has caught a bit of Razorback Fever! We laughed so hard at pork chop. He reminded us of Ryan. Dean calls Ryan Munchkin and pork chop looked like the Munchkin to the rest of the mascots!

Speaking of our little man, we stopped by the hospital after the game to tell him goodnight. Gammie made him a special razorback blanket for the game and his nurse found a red piece of fleece to place underneath his head to match his blanket!

He was doing much better on his breathing this evening. I was able to hold his hand and talk him back to sleep!! I could watch this precious boy sleep all day long!

Ryan has had a pretty good night. No big changes overnight. He is still making excellent amounts of urine! They are going to try intermittent feedings again today. So far he has tolerated them with ease. We won’t know until later tonight/tomorrow morning just how he is tolerating them but we will keep everyone posted!

He has been opening his eyes very big today. When I start to talk to him he will open his eye wide and seems to look straight towards me! He is too sweet. He can also be quite squirmy!! He can nearly scoot himself around his snuggie!

He sent his big bubba a special message today. I can’t wait to hear his big brother’s reaction to seeing his little brother wish him a happy birthday! I’m sure they are going to be best of friends (I don’t think Ryan has much of a choice because that is one thing big brother has decided on).

To continue our football theme posts. . . Dean surprised me with an early birthday present. He managed to acquire two tickets for the razorback game tomorrow! It is in town and very close to the hospital. We will be able to spend the morning with the little guy and then the evening with the razorbacks! Dean found Ryan a special gift while we were at the drug store this evening. I’m sure it will complete his Razorback ensemble for tomorrow!

Ryan has had a very uneventful day/night (we LOVE reports that start this way). He is still requiring a slight amount of extra oxygen when he is turned or worked with for extended periods of time but this is normal for little ones his size. Even though his oxygen may have to be increased slightly he is still on very   low vent and oxygen settings.

His tummy is still working on becoming less distended. They haven’t restarted his feeds yet. The nurse did say today that since he isn’t critical that the doctor wrote for a chromosomal analysis. They do not see any reason that would lead them to believe that he has a chromosome anomaly but it is standard practice on all babies that were growth restricted to check. We still have to clarify with the doctor but I believe that it should tell us if I passed my factor five affected chromosome to him also.

I was able to catch his little left eye open on camera!! It is hard to see but he was still slightly sedated and he had his little eye open as far as he could get it when he heard me start talking to him! I Love how he interacts with us more and more every day!

Dean and I are sitting here watching the opening game of the NFL tonight. It is a repeat of last season’s super bowl. I remember sitting out at mom and dad’s house watching this game. Green Bay is one of Dean’s favorite teams. It was one of the first times since we had lost Jackson that we as a family had a nice relaxing night. We could just imagine Jackson up in heaven giggling, with a little cheese wedge hat, and asking God to help daddy’s team win! We had such a fun night that night!

2 Weeks Old!

Two weeks ago today at 1800 our lives changed forever! It is so hard to believe that just over a few weeks ago we were praying and cautiously awaiting the 24, 48, and 72 hour marks. It was the best day and also the most stressful and scary day of our lives. Two weeks and a few bumpy days/nights later our little man is doing so well! His fluid has decreased significantly and he has been able to continue to make good urine while tolerating his feedings. We’ve been told as soon as he could tolerate his feedings that he should start growing like a weed!

 He is such a little trooper! His daddy seems to think he has the mental strength to be Special Forces. Dean was in the army and achieved the status of an Army Ranger. It is so neat to see his face light up when he thinks of how tough our little man has already proven to be! I couldn’t be more proud of our little family!

Ryan is intent on holding onto his breathing and feeding tube! It makes both me and the Nurses very nervous. He made a huge sad face after I took my hand out from under his feet and moved his hand away from the tube. Such a sad face but such a cute face!!

Ryan’s little tummy has become distended this morning. This means that his tube feedings has to be stopped for now. This is a minor setback but we would much rather him have to stop his feedings for a few days than him stop making urine. Thankfully he is still making urine!

Our little toot treated his daddy tonight! He has been working on opening his right eye and he was able to open it up when dean saw him after work!! I can’t wait to see it for myself. He has eluded the camera though! Hopefully very soon we can catch his eyes open with the camera!

I had my two week checkup this afternoon. Everything looks good. I’m going to be able to return to work in 2 weeks so that I’ll be able to save my FMLA time. I should have around 8 weeks to spend with him once he comes home from the hospital!

While we were at my appointment my MD told us that Ryan was the first 25 week baby that she had ever monitored the heart rate of. She said that God had a hand in her caring for us that day. She knew that there was no good information on what is exactly normal heart rate for his gestational age but after seeing his strip she felt that she had to have him checked out further. She called my high risk OB and told him what she had seen and how she felt and he was right on track with her and said to send me his way and we would find out exactly what was going on with our child. It seems like nearly every day we learn a new way that the Lord had a huge hand in Ryan’s birth. I’m just so thankful that he is in charge! He is the master and has the master plan. We may not understand his plan but it is always the perfect plan for our lives!