Go Ahead. . . Make My Day!

Ryan slept decently but had desats overnight. Dr. B checked a caffeine level and it was low again so he ordered for Ryan to receive another caffeine bolus. In addition to the bolus he rechecked his CBC to make sure there weren’t any problems (possible infection). Thankfully the CBC was normal!

We had been worried about Ryan’s blood count but his bone marrow decided to kick in and his Hematocrit improved from 30 to 34! He color was much pinker today.

We are really going to have to watch Ryan because he is already taking after Gammie and her drinking habits!!

You do NOT wake Gammie up unless you have a Diet Coke in each hand! Ryan’s caffeine bolus did the trick! He needed the extra stimulus to help keep his respiratory drive alive! His Oxygen saturation sored this afternoon!

After a less than desirable day at work and morning to start today . . . Today ended up being a fruitful blogging day!!

I LOVE these two munchkins and have no doubt they will teach my little munchkin silly boy tricks/habits but they gave me the best laugh/smile today! Totally Made my day!

I was hoping they could extend the usage out of big bubbas old cloths but never dreamed they’d find ‘manly’ use for the girl cloths!

Ryan was resting when we visited this morning so we took the opportunity to run to Garden Ridge! I Love this store at Christmas time.  I went in looking for a First stocking for Ryan and came out with a room fit for a king!

Big Bubba is getting a new baseball room and I found the PERFECT decor! Completely continued my ‘Made’ day!

Ryan might have been resting when we arrived at the hospital but he had his ‘eye out’ for Momma. He even knocked the socks off of his Uncle Jack! (The last time he saw our little man in person was while Ryan was still on the oscillator)

Ryan was in a very happy mood when I changed him!

 His nurse allowed me to change his cloths for the day and snap a few adorable pictures!

The next few hours completely ‘Made’ my day!

We were both feeling very froggy and were in much need of some Mommy/Ryan time.

Ryan seems to completely relax when I’m allowed to hold him. He never had a single desat or heart rate drop!

He is getting to be such a BIG boy!

Today Ryan rocked in Mommy’s arms for the first time. He really seemed to enjoy our time today. He didn’t even become cranky at feeding time until after our diaper ordeal! (Which put his feeding several minutes off track

Ryan’s nurse allowed me to stand up, hold him in my arms, and place him back to bed! I know it doesn’t seem like a big deal but this was the longest time I’ve been able to walk and hold my baby in my arms. Then to be able to put him in his bed and get him situated and ready for bed that just put the day over the top!

We had the biggest laugh when we changed Ryan’s diaper. . I mean diaperS  today. I ended up changing him twice when he went back to bed. I knew he was happy and alert but then he became a little too happy!

Little man crossed his eyes and had the BIGEST smile on his face! He was concentrating on some serious business! Sure enough he left a ginormous (literally) stinky. The smell filled the room so quickly that he would have made his Papa Monkey smile!

The only other stinky thing about the day is my suspicions about Ryan are becoming true. He knows that Mommy is going to leave him and has started holding on for dear life!Tonight he had my hand with both hands. If I even moved them an smidge he squeezed with all his might!

I needed today more than I could explain! Thank you Thank you Thank you Lord for this day! He knows when I need good days and I’m so grateful for them! Please remember to pray for the nurses, doctors, babies, and families that are the NICU with Ryan!

Talk About Issues!

Ryan is having some adjustment issues to his new big boy bed and room. His nurse was being nice and didn’t incriminate him and tell Mommy how he pulled out his feeding tubes last night when I called to check on him!

Ryan had a pretty fussy day. He has had a few desats and they have been titrating his oxygen up and down for his breathing. The doctor didn’t want to give him any blood yesterday because he wasn’t having the desats (yet). His nurse told us that when they get to growing as fast as he is that it isn’t uncommon that their blood count drops because their bone marrow can’t keep with his growth. There’s a fairly good chance he will have to have blood in the next few days.

His nurse asked me tonight when the last time I held him was and I told her that his Daddy held him Sunday. She said No when did YOU hold him last. When I told her it was Thursday she immediately said no wonder he has been so cranky. We had some good Mommy/Baby time tonight. I wasn’t able to hold him because I came from work. He held onto my finger for a while. If I had to move to let the nurse look at him he got very upset.

Thankfully he would calm easily when I patted him and put my finger in his hand to hold.

I can’t lie I’m feeling very cranky myself. Work stunk! I’d just like to have a day when something would go right! There is so much bad happening around us I just wish I could sit up with Ryan and watch the good side of the hospital. Watch my little one grow and hear of the other little ones growing.

Ryan looked so big to me today. I HATE this! Not because he growing ‘up’ but because it means that out of the last five days I’ve seen him so little that I can TELL that he has grown!!

It hurts to miss so many of Ryan’s first days. We are now a day away from 9 weeks into our journey and it’s getting so much harder. I’m able to see him daily even if it is just for a short period of time. I can’t imagine how those parents who cannot visit daily must feel. I know I’m miserable having him so far away! I keep telling myself that our stay in step-down will be much shorter than our last room and to truck on because there is a wonderful light at the end of this tunnel. Thing is we just have to survive our own minds/emotions to get to the end.

I did get a bit of comfort tonight when his nurse walked in and I heard a very familiar voice! I’d never met her but Ryan always seems to be very comfortable the next morning after she had cared for him. She gives him big boy sponge baths. He sleeps so well after them. She allowed me to rub lotion on his body to help him relax.

Ryan didn’t have any orders today. He did have another Eye exam. Mom was able to talk to the eye doctor today and he told her I needed to “check that problem off my list.” His eyes are great. He will continue to recheck them every two weeks.

Ryan had some pre-Halloween fun tonight.

 

 

Gammie brought up his monkey shirt/hat.

 

 

I have to stay that I have the most adorable little (two armed) monkey!!

I know Papa Monkey is VERY Proud!

Theme of the Day. . . .BIG

Ryan has had a very BIG day!

 This morning he had a routine ECHO. I ran upstairs this morning during some downtime and was able to hold Ryan’s hand and help him ‘get through’ his ECHO.

He was not a very happy camper when I walked in. He apparently is fonder of his cloths than I had thought! He was stripped down to his diaper with sticky goo on his chest.

Mommy had to help keep his fingers out of the goo so the tech could complete his ECHO.

Ryan had a handful of orders today. His feeds were increased to 21mls every three hours. He is getting a caffeine bolus and his sodium dose had been increased.

We received BIG news regarding Ryan’s Echo. It was perfectly normal. The issues that the heart had of being lazy has resolved themselves just as the doctor had believed they would.

I received a BIG call while I was at work today. We were told if we ever needed to know anything the NICU would call. So far I’ve only received two calls both of which were positive. The first was a while again and nurse B let us know that they had successfully restarted his IV after it had stopped working. She said she wanted me to know that it was in and not to be thinking our little man was getting poked repeatedly all night. The second came today. Nurse S (his other hospital momma along with nurse B) called to tell me that he was getting a new bed. He was being moved into an isolette. She then stopped took a deep breath and said “And they asked me if he was ready for step-down and I couldn’t lie.”

Ryan now has a new BIG boy bed. I have very mixed emotions on his new bed. I am extremely happy that he is getting better and moving to the new unit but we are all sad that nurse S doesn’t work in the step-down unit. She is sweet she told me that her and Ryan ‘talked’ about his new move throughout the day so he would be ready for the change. She has had many ‘talks’ with Ryan over the last 8+ weeks. She did tell me on the phone that she WOULD have to go across the hall and play with him!

I did think of one neat First Ryan will have in the morning. He will see/feel his first Sunshine. His room has a window above his isolette and the sun will shine into our little man’s eyes for the first time tomorrow!

In all of our mixed emotions of changing rooms I almost for the best part of our day. He weighed in at 1070 grams last night! That is 2lbs 6ozz. He is gaining weight like a little weed! It seems like it took an eternity to get to 1lb 6oz and now that we have broken the 2lb mark he has been packing on the pounds quickly!

My family treated me to a few early birthday present today. Dean and Gammie cleaned out Ryan’s room and put together Ryan’s crib! The thought of a crib in the house has seemed so far away and unlikey. To see the crib in his room and know we have a happy healthy little one to bring home to it just makes my day!

I was also treated to some amazing signing at Applebee’s and came home to the gorgeous bouquet of flowers!

 If I knew I could get away with it I would seriously call into work tomorrow so that I could start decorating Ryan’s room!

Raw

I don’t think I was completely prepared for the rush of raw emotions that came flooding back as we attended the SHARE memorial service this afternoon. It was much harder than I anticipated.

It was a very beautiful service. They read each of the Babies names born and lost over the last year. It struck me at the beginning of the service just how close I was to having two names read at this service.

I love how in life little things come up that remind me of our son Jackson. Dean pointed out to me that the little toy building block in front of the podium had a “J” on it. As we turned on the World Series they kept talking about a player named Jackson. It’s these little things that can put the biggest smiles on our faces and sometimes bring us to tears.

At the conclusion of the service we released 90 yellow balloons in honor of our little ones.

 

It had been rainy and overcast all day but the sun parted and our balloons flew directly to the gorgeous blue sky!

One of the singers looked strangely familiar. One of the precious singers tuned out to be the second nurse that was in the delivery room and helped deliver Jackson. She remembered us long before we realized who she was. This to me meant a great deal to me. I never dreamed that anyone up there would remember me or my precious little one and she remembered all of us.

We spent the rest of the night with Ryan.

I was able to change his cloths and get him ready for Daddy to hold him.

While Dean was holding Ryan he listened to his First Ever Baseball Game! Not just any game but his first World Series game! Ryan has attended a Cardinals game but this time he was able to ‘hear’ the game!

Ryan is still doing very well breathing and with his feeds. We received some clarification on his oxygen settings tonight. He is on 1.5 liters of “flow” and his oxygen percentage is between 25-30%.

He was again very awake and expressive tonight when we changed and dressed him. I LOVE how he smiles and makes faces at me. He wants to scrunch his face and cry but as I talk he changes his mind and smiles and coo’s.

I hate that we lost our first son but I wouldn’t trade Ryan for anything. The speaker reminded us today that it is ok to ask why. He also told us about David. I don’t guess I realized that David had lost a child at 7 Days old. Psalms 22 tells David’s raw emotions after he lost this child. The speaker also pointed out to us that had David not experienced the great loss we would never have Psalms 23.

Psalm 23

¹The LORD is my shepherd; I shall not want.²He maketh me to lie down in green pastures: he leadeth me beside the still waters. ³He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. ⁴Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. ⁵Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. ⁶Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

Our speaker reiterated that it was ok to ask the question why. He also impressed upon us that many of these questions may not be answered until we awake in Heaven. The part that I love about this Psalm is how he tells us that God is with us every step we take. He is with us during our highest of highs and he carries us through our lowest of lows. I know without this peace I wouldn’t have been able to handle the loss of our precious Jackson. At times I don’t feel like I’m handling Ryan’s stay in the NICU well but I know that the Lord has brought us to this place and he will see us through. He has made so many opportunities for us to share him and to help our neighbors that wouldn’t have been possible except that we were in the waiting room of the NICU.

Ryan is a miracle from heaven and the absolute product of prayer!

One day we will all reunite with Jackson and spend our eternity in our mansion made of gold. My favorite verse is in John.

John 14

¹Let not your heart be troubled: ye believe in God, believe also in me.²In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. ³And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.

God promises us an eternity safe with him in heaven as long as we believe in him and that his son gave his live on a cross for our sins. It is the simplest thing in life. All that is required is for one to ask him to forgive you of your sins and believe that Jesus died on the cross for our sins.

John 3:16 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

 God will send the Holy Spirit as a comforter into your heart and you will be Saved. You too will have a more beautiful than words mansion and an eternity safe from the fire of Hell in Heaven.

Ryan's passie is a little too big for his mouth and he often pushes it

 out while he is trying to suck on it.

Tonight it took the two of  us helping him to keep his passie in his mouth.