Ryan has made 72+ hours off of the vent!! When we visited him this evening he was sleeping, sucking on his passi, AND his oxygen saturation never dropped below 94%. This is a big deal for the little guy. Sometimes little ones have trouble multitasking so it see him doing both was a very encouraging sight.
Ryan continues to do well with his feeds and diapers. Today his feeds were increased to 19mls every 3 hours and as long as he continues to have very low to no residual his feeds will be increased to 20mls every 3 hours. Dean took the lead and wanted to change Ryan’s diaper this evening and boy did he get a surprise! Ryan had a very Large stinky and wet diaper! It was the funniest sight to watch Ryan squirm and Deans large hands attempt to keep everything clean! Poor Ryan even had stinky in his toes before it was all said and done! Dean laughed on the way out and said that when Ryan comes home he will take care of those stations with a bath!
We learned/ figured out a third fact about our son tonight. First fact is that he Hates a stinky or wet diaper and gets very fussy! Second fact Ryan LOVES his groceries! Third Ryan prefers to be tucked in with his fleece blanket to sleep.
Ryan threw a big fit two days ago after being hot and then placed on his left side. Tonight he did the same. We were able to pick him up and situate him in his bed then tuck him into his snuggly (this is very big because until he was off the vent we very rarely were allowed to pick him up off of his bed now they are encouraging us to pick him up and do as much as we can with him).
He did not calm down until I covered him with his fleece blanket and then tucked the side under his snuggly. Almost instantly he calmed down and gave into his sleepy eyes!
I’m going to miss my little guy so much tomorrow. I have to go in and work a 12 and am dreading nearly every bit of it. I love my job but I hate that I won’t be able to go up at lunch and sit with him since I’m going to be having direct patient contact (too big of a change of Ryan getting an infection from a patient I’ve cared for). I am glad that he is right upstairs if I’m needed at any time.
Saturday, October 15, 2011
Today is one of those days that my mind has been struggling. It can wander so easily to a very dark place. Today is National Infant and Pregnancy Loss Day.
The fear and worry never seem to go away. I don’t believe that it gets easier with time. You may go longer distances in time before it slaps you in the face at some of the most inopportune times. Please pray for those who’ve experienced loss and those who will one day experience the loss of a child. A good friend of mine posted a quote yesterday that I’d like to pass on here. . . .
A person that loses a partner is called a widow. A child who loses a parent is called an orphan. But there is no word to describe a parent that loses a child, because the loss is like no other. Think of someone you know or love who has lost a baby or a child, and take a few minutes to remember & honor their beautiful angels.
My Angel is Jackson Michael. He loved alligator! His first trip was to Ranger’s Ball Park. I miss him every day! He is my Angel in heaven. My ray of sunshine in Heaven. I wish he were here with us today but I have to think that the Lord knew he needed him there with him where there is no suffering or pain.
I know for me it is hard not to get caught up in our loss. Or human minds can take us to very dark sad places in a hurry. I’m so thankful for my second little ray of sunshine. My Rainbow I’ve heard some say. One look at him helps heal some of the sadness in my heart.
Ryan has officially made it for approximately 60 hours of the ventilator. When they took the breathing tube out it was like we started over with the counting. If we make 24. . .48. . .72 hours then XYZ. His nurses are telling us that they don’t anticipate him returning to the vent. I’m trying to have that same feeling but I just want to keep myself ‘prepared’ should he have to be re-intubated.
It is so strange to sit in his room without the vent. We have many new ‘freedoms’ since Ryan has done well off the vent and some old routines have returned. He needs less stimulation during his first days off the ventilator. This is so he uses his energy breathing and growing instead of interacting (and showing out). We often have to step out and let him sleep. He has loved interacting since he was born.
The nurses are wonderful and let us interact durring feeding and changing times while he is awake. Today I was able to pick him up and place him on his Daddy’s chest!
Ryan spent some time on his Daddy’s chest this afternoon. It seems so strange yet such a LONG time coming seeing him sleeping (without the breathing tube) on his Daddy’s chest.
I would sit and watch him sleep and grow all day long!
He got a little fussy and began reaching for Dean’s finger and trying to bring it to his mouth. Dean’s arms “don’t bend that way” so slid the tip of my finger in his mouth and he began sucking feverishly! I found his passi and he did such an amazing job of practicing his sucking AND breathing effectively at the same time!
Dean did a much better job not worrying as much this time around! He even rested enough that he started snoring! He did have a minor moment worrying about his feeding tubes but overall he did a great job enjoying rather than worrying.
Ryan has been doing well with his feeds, diapers, and breathing! He is now on 18mls of Similac Special Care 24 calorie formula every three hours. His nurse said today that he has reached the age where he may have a doctor’s order every few days.
We are basically to the feeding and growing stage. His nurse even commented that he is no longer their “sickest” little one. It seems like it took forever to get to this point and now everything is moving at rocket speed.
Ryan’s nurse weighed him while he were in with him this afternoon and he now tips the scales at 2lbs 0oz. This is 920 grams! My gut told me 920 yesterday but I went with 930 second guessing myself. In my defense he did have a Large diaper that we removed before he was changed. (I’m sure that weighed at least the extra 10grams that I was off by!)
This last video is for my little man Drake! He was concerned about Baby Ryan crying when he saw the last video. Baby Ryan cries to let us know when he needs something. Sometimes it is a diaper change and other times it is because he is hungry . . . Today that something he needed was his passi!
Ryan seems to be resting much better now that he is off of the vent. He has remained on around 22% oxygen. The doctor increased his feeds to 18mls every 3 hours. He had a few heart rate drops overnight so they are increasing his caffeine dose also.
His doctor says that he is doing great. His nurse thinks that he shouldn’t have to be put back on the vent either. It just scares me. I see more than my fair share of anoxia at work and just pray that Ryan will not experience any breathing setbacks.
Ryan's eye movements are starting to get much smoother. He is doing very well tracking us around the room. At times he is even turning his head toward sounds he is attempting to look at.
I heard Ryan cry for the first time at lunch today. It was the cutest, sweetest, and most pathetic cry I’ve ever heard. It was within 15 minutes of feeding time and he had a very wet diaper. I changed his diaper and he quieted down nearly instantly. It was so nice to be able to ‘fix’ something.
Ten months ago today we were given a plate with the most precious foot prints in the center. I love how our plate turned out. The ladies at the fire fly studio did an amazing job matching the wings around Jackson’s feet to Deans Tattoo.
Today Ryan made his own special plate for Mommy and Daddy
I’ll show the finished product here once it is completed.
This afternoon Ryan had his first Big fit. I hate to see him cry but I love the sweet little sounds he makes.
Ryan is strong enough that he will now be weighed every other day. We are taking guesses as to how much he has gained over the last two days. Dean says 940 grams. I’m thinking closer to 930 grams.
Either way our little man should be over Two Pounds!
Thursday the 13th has been an extremely hard day to stomach. It was on Thursday January 13th that our world came crashing down around us. I had to tell my husband that our unborn son was with our Lord. Today Ten months later on Thursday October 13th I was able to call my husband and give him the best news of our lives thus far!
Our little man graduated to a big little man today! I never dreamed that the doctor would write the order to extubate our son today!
It has been a very long time since I’ve been so anxiously and happily nervous as I was this morning. My hands were shaking thinking about being about to hear our son make sound.
One of the respiratory therapists that works in the ICU in addition to the NICU was Ryan’s therapist today. I was able to stay in with him as they took him off the tube.
He did exceptionally well! When they remove the tube the little ones commonly have sneezing fits. This was the cutest little sneezes I’ve ever heard!!
It is so hard to put into words what this day has meant! I LOVE watching the video of Ryan breathing on his own for the first time!
I am just overjoyed!
I knew that this day was coming but I never dreamed it would be this soon.
He most definently lived up to the saying on the onsie that they placed him in lastnight with his bath!
He is every bit Mom’s All Star!
This is a premie onsie and it swallows him whole!
He is Long enough for it but he lacks the correct width!
Dean’s face was priceless!
We are both glowing and exceptionally proud of our little man!
It is still hard to believe we are 51 days into this journey and our son has taken his first breaths! My mind is still going 90-to-nothing while my body is screaming from exhaustion!
Our little man has found his hands! It is too neat to watch him! He will clasp his hands together and look at them in awe.
I can only imagine what his little mind is thinking as he gazes at his hands!
He was a very happy baby today. His feeds were increased to 16mls and he is solely receiving Similac.
His blood gasses were very good this morning. When his doctor saw him he turned his rate down to 29 from 32!
It still amazes me how it seems like all of a sudden we were over the hump and heading toward Ryan breathing on his own.
(Papa woud be soo proud of his new wave)
Dr. S also told us that Ryan’s second eye exam went very well. He said there were no retina changes and that his eyes were just immature! His next exam will be in two weeks.
We’re really enjoying Kangaroo care. I love the way Ryan falls into a deep sleep. We both rest so well during Kangaroo care. It can take the most stressful day and make it the best.
He is too sweet today he grabbed my finger after his nurse put him back to bed. He was very intent on me not leaving his side. He gets very unhappy when taken from mommy and put back into his house.
Ryan's new wardrobe is couresy of Gammie. His shirts are just the sweetest! They are for little ones
1-3 pounds so these should last for a good bit of time. . . Although. . . .We are sooo very close to the 2lb mark. I know for a FACT he will be 2lbs by Sunday!!
He weighed in at 890grams tonight! That is 1lb 15oz!! ONE more ounce to 2lbs!!!
