For some reason the past few days my mind has been wandering. We all wear many hats. Most hats are those that can be seen with ease. The hats the churn in our minds are often those that cannot be seen. I am a Baby Loss Momma and now a NICU Momma. You never know when a moment will hit you and your mind begins to drown in these unseen hats.

My moment came today while getting onto the elevator. A woman seemed to have a very familiar face it didn’t hit me until after I returned to work that the woman I rode the elevator with was the same women who lead me through the birth of our son Jackson. I’ve not seen her since January. She was wonderful. She held our hands and coached us through his birth.

Ryan and Jackson have the same little nose and as Ryan’s cheeks fill in he reminds me a lot Jackson. My favorite picture of Jackson was taken by the nurses.  It is often the first face I see when I wake up and the last face I see when I fall asleep. I will cherish these pictures forever!

I collected my thoughts and returned to work to finish my day. On my way up to say goodnight to Ryan I saw that same familiar face a second time. I know she doesn’t remember me but I can just about remember most everything she said to me January 14, 2011.

It doesn’t take much with either of these hats to trigger a moment. I never dreamed I’d know what it would feel like to leave the hospital with empty arms nor did dream that I would battle that same feeling a second time leaving my precious son in the hands of the NICU team. I pray daily for those who know this feeling and those who will one day join us. It is so hard to leave Ryan. Many of those who we’ve met know the same loss that we’ve experienced and now feel the same hurt leaving their child and some children during their first days of life.

 I have to admit I shed tears as I left Ryan’s room this evening. I hate leaving him. I have to remind myself daily that I will return in the morning and met by the most beautiful smile!

I was able to give Ryan his first bath from his Mommy today. He had eye and neck gunkies when she turned his head and his nurse gave me the opportunity to clean him myself. He did so well. He must be learning mom WILL get the eye boogies! His nurse even commented that he seems to really love the time we spend together. He surprised me and settled down as I cleaned his face and neck. It doesn’t seem possible but I fall in love with him more and more every day! Now if we could just get him as excited about diaper changes!!!

Ryan is doing well. His feeds were increased to 13.5mls. He had some minor vent mode changes (which I have to be honest is a mode I don’t quite understand but know that it served him very well). He seems to calm fairly easy which scares me. For some reason I have the sneaking suspicion this is all an act and he will be much less easily soothed when he able to come to his home. Even if that is the case I’ll take it!

God is Good!!!

My Sweet Sweet Chip-A-Monk!!

I was absolutely blown away when I learned that Ryan weighed 700 grams last night!! That is 1lb 9oz!! I LOVE that he getting sweet baby cheeks!! Dr. B increased Ryan’s calories to 24 in his formula! They can only give Ryan so much volume due to his size so they increase the calories in the feeds in order to “put some meat on his bones.”

Dr. B decided to ‘challenge’ Ryan today. He took his rate from 33 to 23! This is a BIG jump! Auntie Becky said that Dr. B really believes in ‘our’ boy and challenges him accordingly! It is such a good feeling to know that our doctor believes so much in our son! Ryan tolerated this rate for around 10 hours before his lungs began to tire and take significantly less volume which caused his sats to drop. Ryan is now back at a rate of 33. He is resting and I imagine they will attempt to decrease his rate again in the morning to help condition his lungs. He has a small leak around his breathing tube. If it continues to get worse they may have to increase the size of that tube again.

Gammie has been able to participate in Ryan’s 2 o’clock feed and diaper change the last few days while I’ve been at work. Apparently today Ryan had an extra special stinky present for Gammie. You’d think that this little stink wouldn’t have that many nooks and crannies but when he leaves a stinky present you’re forced to find ‘em all!! I’m told Auntie B had to help Gammie find all them all today! Apparently she was slightly overwhelmed!!!

I've been up to my eyeballs in organization the past few days. I've spent 90% of my hours worked in the closet. lol

 I'm thankful for my work!They've allowed me to come back early so that I can save my time for when Ryan returns home. I hate that I have to leave him but it is comforting that he is only an elevator ride away.

Today was simply Amazing!!!!

Ryan has been tolerating his feedings. The doctor increased his calories to 23. The rate will remain the same for now. He had his first eye exam today. The MD said that his eyes were very immature (which we knew) and that he would recheck his eyes in two weeks. The nurse told us that normally if the doctor sees something that is concerning they recheck the eyes weekly. So for now we are going to be grateful for our two week time span!

I visited with Ryan before work and once again he was a little ham! He isn’t too keen on laying on his side and when his nurses place him there his hand seem to cover his face as if he is trying round up sympathy.

He has a new size diaper in his drawer now. This diaper is a premie diaper that they sell at the store. It swallows him whole but it is so good to see him growing!!

I could just picture the word bubbles above his head reading….

“Oh my goodness not this again!”

“I’m Soooo over this”

“See Mommy . . . . I blow kisses!”

Dean said that Ryan was NOT happy with his diaper change this evening. They apparently had to have another Ryan/Daddy “talk.” Dean said that Ryan had both hands moving and trying to keep Dean from changing his diaper. Dean would get one hand moved to the side and Ryan would slide the opposite hand between himself and the diaper attempting to stop the operation!

He can be such a character! We might be in trouble! He is already showing signs of being too smart for his own good!!!

I was able to experience the best feeling in the world today. Ryan and I were able to do Kangaroo Care! I was worried that he might be to feisty and squirmy to hold his Sats for any length of time but he blew any and all expectations out the window!

She placed him on my chest and he immediately calmed. (He calmed so much that he filled his diaper but that is another story).

We all were concerned with him extubating himself by moving his head but he never moved his head at all! His breathing tube stayed in perfect place the entire time.

It was a joy to feel his little movements. I haven’t felt him move like that since probably two weeks before he was born. It was so neat to see his hand movements and feel them on my chest. I could remember what those felt like when he was still stretching and moving from inside me. I was so amazed and proud of how well he tolerated kangaroo care! He even found his thumb while cuddling with Mommy!

While he is this small it is only recommended we hold him around twice a week. Today we fulfilled another first. My first time to hold my son’s Life Filled body on my chest. I’ve seen so many pictures and shows of mothers who get to feel and have their child placed on their chest as soon as they are born. I’ve now had two children and two very different experience neither of which has be “normal.’ Today was my first time to experience the feeling of my son moving and cuddling on my chest!

What a difference 7 months can make!!

Today was a bit of a milestone for me and Ryan. I returned to work after spending some quality time with Ryan this morning. He had a good night. His feeds were increased to 13mls every 3 hours. His sodium has been slightly low due to his diuretics therefore the doctor added sodium to his feeds. He HATES having his temperature taken and then I make him even madder when I change his diaper. It was too cute this morning. Once we were done with his temp/diaper change and was resituated in his bed his nurse tucked him back in his snuggly. She no more got one foot out the door when Ryan peaked through his barely opened eyelid and seemed to look from left to right to make sure we were finished. Once he was sure his eyes popped right open and he decided that he would be social! His nurse came back and was talking to the doctor and as soon as he heard her voice he closed his eyes as tight as he could get them. I laughed and called him a lil stinker and his nurse came over and I told her what he did. She started talking to him and when he realized that she wasn’t going to mess with him any longer that he would open his eyes and be social with her also. It just amazes me at how smart he can be at times!

He has been doing well on the vent. They restarted his updrafts and initiated chest physiotherapy today. He scared his Momma good for the third time today! After work his had a few heart rate drops while I was touching him. I heard the alarm and looked over my shoulder to see his heart rate in the 30’s. I’ve never seen his heart rate this low. Needless-to-say my heart rate may have hit 200+!! He felt like his lungs may have been gunky and they were. The updrafts work to thin the mucus that is in his lungs (while he was on the oscillator they were unable to give updrafts). Chest physiotherapy uses gentle taps to the outer chest/back to help loosen the same gunk that builds up on the lining of the lungs. When this gunk is loosened it has to be suctioned from his lungs to prevent pneumonia. His body is doing exactly what it should during both these therapies. The thing that keeps you on your toes is that the tub can become clogged if a bit of gunk gets on the end and it causes his sats to drop and his heart rate may drop also. When suctioned the vagus nerve is stimulated and it causes a brief drop in heart rate. This is a normal response I’m used to seeing it all the time in the unit on adults but it’s hard watching your son’s heart rate dip to the 30’s!!

Ryan spent some quality time with Gammie today during lunch. Mom was able to change her first diaper and take his temperature!! I wish I could have seen the smile on her face!! Last night her special anniversary present arrived in the mail!! Mom and dad spent 30 years together and the 19^th would have been their 30^th wedding anniversary. We wanted to do something extra special for her.

She has worn dad’s wedding band on her neck since his passing. Dean found a wonder shop called Things Remembered. They customize everything from jewelry to classes and even picture frames. I had an idea to put an engraved saying with dad’s wedding band and dean found this wonderful pendant that held our birthstones with an engraved pendant behind it.

It turned out amazing! There are 8 stones and 8 in our immediate family who was touched by my father. The 8 of us as it stands now is Dad, Mom, Dean, Myself, Alesha, My step-son Justin, My angel Jackson, and our newest addition Ryan. It had the perfect number of stones! Mom was smiling from ear to ear and one of the first things she told me this morning was how perfect the pendant fit with dad’s ring. I’m so glad we were able to find a way to complete mom’s special necklace!!

                Thirty Years Together....Together Forever in Paradise

We love you Gammie and Papa!!!

I fall more and more in love with this little man every time I see him!!

Ryan is doing AMAZING! His feedings have been increased to 12.5mls every 3 hours. They increased his calories to 22. His blood gasses were good this morning. He has been having a CO2 (carbon dioxide) in the 50’s and today he was down to the 40’s. The doctor was able to decrease his rate on the vent to 33! His oxygen saturation has been doing well also. When is he stimulated his sats drop less and less each time. Right now he is staying no less than 80% and often he stays in the 90’s.

He is now in a size bigger diaper! He was in the tiny tiny Barbie doll diapers and now he “fits” in the bigger white diapers!! It was so neat to see him in his snuggly today and realize that he now fits in the bigger size diapers!!!

I wasn’t able to touch him much this weekend but today we were back to our ‘normal’ routine. Ryan held his temp beautifully today and we had his ‘house’ open for longer than an hour! He never had a temp drop!

He seems to love to interact. I’m not sure what I’m going to do tomorrow when I go back to work. He has gotten used to Gammie, Sissy, and Mommy spending lunch with him. Here he is one of his favorite places. . . .In all of our ‘arms.’

His weight was down slightly last night. He now weighs 630gram. That is 1lb 6oz. This is a normal drop in weight. We were told once premies are transitioned from IV nutrition to oral feeds only that they often have a small drop in weight.

On the other hand he has grown!! The nurse measured him while we were in with him and he measured 12 ¼ inches!!! He has grown a ½ inch in one week!!! I cannot tell you how much he amazes me every day!!

I was able to pick Ryan up and hold him in my hands for just a bit today! When his nurse changed his snuggly and his sheet she allowed me to help.

I selfishly “stole” a kiss while I held him!

Ryan had his first cloths on today! This micro-premie onsie still swallows him whole!

We had such a good visit with Ryan today! I have to be honest. I needed today. Tomorrow I am returning to work and have been dreading changing our routine. I will be within just a few minutes away if I’m needed but it is still the principal of the situation. I hate that I have to care for other things instead of being available for him whenever needed. I know this will be the first of many times that I will have to be away from him . . . I’m just so thankful that we had a wonderful nurse who encouraged us to spend a good amount of quality time with Ryan today!!

Ryan had another restful night! His feedings have been increased to 11.5mls every three hours. He is tolerating the conventional vent beautifully. His last IV was taken out of his right arm today. They wrapped his arm with gauze to make sure it didn’t bleed when the line was discontinued.

Ryan spent some time this afternoon with Gammie while Dean and I attended a birthday party for Dr. N’s sons. Ryan has started opening his eyes wide and keeping them open longer. During these times he blinks his eyes and is trying to focus instead of just opening his eyes and closing them. She said he was just a looking at her as she talked to him!

Dean and I visited a few hours later but Ryan was more sedated. I’ll be honest it made me sad that we weren’t able to interact with him as we had during the week.

We did have a pretty good visit with his Auntie Lesha and Auntie Debbie this evening. Auntie Debbie has never seen him with his ‘house’ open so she was treated!