Perfect Love

I put this together to express my appreciation for my Savior. His love is perfect. 

Updates

We sit down with the doctor and the knot in my stomach gets tighter. I'm nervous to see what he has to say, what updates he will give us.

As he pulls up the latest ultrasound on Will's brain, my heart starts to pound. The images pop up on the computer screen and he starts to explain the latest findings. 

The ventricles are smaller.

The cyst is smaller.

The texture of his brain looks normal, whereas before, it looked abnormal. 

I breathe a deep sigh of relief. 

More miracles .. and I can only thank my Heavenly Father.

The doctor continues and tells us there is one thing that is still concerning. There is a significant amount of fluid in the space between his brain and the skull. What does this mean for him? They don't know. Only time will tell. 

We move on and talk about everything else. 

The doctor goes through each system and gives us a full update on how everything is looking. 

Will's lungs are getting better. He is doing well on the new ventilator! He is digesting milk and is pooping without suppositories! His kidneys are functioning and he is peeing ok. His liver looks good. 

I start to realize how blessed we truly are. My heart swells with the deep love I have for our son. I look over at his tiny frame and marvel at his strong-willed spirit. We are so blessed!

What could make this day better? Holding my little man. 

As the nurse gently places him against my chest, I feel a burst of joy. I sit caressing his baby soft skin and breathe in his sweet smell. I am in LOVE.

 I realize now all the things I took for granted with my first two babies. I held them the first day. We were able to take them home from the hospital with us. I nursed them! All of these things flood my mind as I sit here snuggling my little guy. I want to be grateful for every single moment I get with him. I don't want to take anything for granted ever again. 

After 3 precious hours, it's time to place Will back in the incubator. 

My only consolation is that I get to hold him tomorrow.  

Switching over

They made the switch! His first two blood gases have shown that he is tolerating the ventilator OK. So far so good! Hopefully he'll keep it up.

Oh and did I mention I get to hold him today? It's been a few weeks. I can't wait to snuggle my little guy for a couple hours.. Pure heaven!

Good days

Will is down on his oxygen requirement. The doctors are even going to switch him from the oscillator to a traditional ventilator! Big step for my little man. I'm a bit nervous because last time they made that switch, he went downhill pretty quickly and they had to put him back on the oscillator after two days.  We'll see what happens. 

I have been feeling more hope the last two days. Will seems more comfortable.. less agitated. He usually gets pretty mad when anyone messes with him. It's actually pretty cute because he flings his scrawny little legs and arms all over the place. :) But he has been a little more calm lately. 

We will be meeting with a group of doctors and nurses tomorrow evening to lay everything out on the table. Whew.

Thank you all for your continual love and prayers! 

Roller coaster

January 25th 6:30 am

I wait on the phone and tears start falling. Images of my baby having seizures flood my mind and I can't make them stop. My palms start to sweat and my heart is racing as I wait for the Doctor's update.

He finally picks up and tells me it's not good. My heart can't quite understand what my ears are hearing. He continues and tells me that we have the option to discontinue support if we wish. What?? I'm sure I didn't hear him right. My voice catches as I stutter a goodbye and hang up the phone. As I walk numbly to my room and fall into bed, his words tumble in my mind and I try to make sense of them. I start sobbing as I relay the conversation to my husband. We hold hands and pray like we've never done before. 

9:30 am

We drive in silence. There is a horrible desperation hanging in the air as we make our way to the hospital. I hold Tyler's hand like a lifeline. I don't know if I can face what the day might bring. 

We arrive at the NICU and I see my baby lying there in all his tiny cuteness. 

And I feel my heart break.

The nurses bustle around us and we reach our hands through the openings of Will's incubator. The feeling of helplessness almost overwhelms me.

We talk to the Doctor and he explains that our baby will continue the anti-seizure medication for the time being. He can't get an MRI done until he's completely off ventilation, which won't be for another few months. So... we wait. No answers. No reassurances. 

The tears don't stop. I didn't know I had so many. 

We drive home and go through the routine of brushing our teeth and getting ready for bed. It's such a normal thing to do.. it feels weird. 

January 26th

I slowly wake and for a brief second, the horror of the day before is not in my thoughts. But then it all comes crashing back and I desperately want to go back to sleep. 

Today is Sunday. Time for church. 

I shower and get the kids ready and we miraculously make it on time. I go through the motions of smiling at people, chatting, telling everyone "things are Ok" when they ask. But things are not OK. I attend the last hour and feel a glimmer of peace. I can't even remember what the lesson was about.

After church, the kids and I make cupcakes. It feels sooo good to be in the kitchen with my two sweet ones, baking together. 

As Tyler and I enter the NICU in the evening, there is a different Doctor working. I suddenly feel anxious to get his perspective on Will's outlook. We talk with him and he gives us a lot of hope. He admits that Will very well could have significant mental problems. But he may not. Time will tell. 

After our talk, the nurse takes the top off of Will's incubator. Oh my sweet baby! I put my face down next to him and nuzzle his soft belly, breathing in his scent. I am in heaven. I wash his hair and change his diaper and I can't think of one thing I'd rather be doing. I lay my head next to him again and sing him quiet songs. This is how it should be. Always. 

We leave the NICU and I am floating. 

We pray before bed and thank Heavenly Father for such a miraculous little boy. No matter what happens, he is ours forever. I will always be his mama. 

Another step back

Will's been having seizures for the last three hours. I don't know what else to say except please continue to pray. Love you all..

Waiting

Who would have thought someone could get excited about their baby reaching the 2 lb. mark? Will is 2 lbs!! Hooray!

I loved doing his care today. Whenever I change his diaper, I can't help but chuckle when I see his little bum cheeks. They're just so cute and tiny! He looks like a little frog! I can't wait for the day when I can blow raspberries on his fat rolls. :)

The doctors don't really have any news. Which is good I guess. We're hoping to have a boring couple of weeks and let him grow and get stronger.

It's amazing how much love I feel for this little man. I love to sit by him and reach my hands through the openings of his incubator. I feel his soft skin and sing quiet songs. It's a sacred time between me and my little one. I long to open up the top and scoop him up in my arms. That day will come, I have to have faith that it will. He is so strong and so many people are praying for him.

It's quite humbling. 

Strong-willed Warrior

Will means a "strong-willed warrior". Can any name be more perfect for my little man?

Hearing his cry at birth is one of my most cherished moments. It pierced right through to my soul.

Fast forward two weeks.

Tonight, Tyler and I sat next to Will's tiny frame and marveled at his perfectly shaped fingers. Will held my finger tightly as he continues to cling to life.

The Doctor explained again some of Will's problems he is dealing with.

He has been battling Pulmonary Interstitial Emphysema in one lung, and the other lung is having a hard time staying inflated. Both lungs have fluid in them. He also has Patent Ductus Arteriosus in his heart. These two things alone are actually fairly common in premature babies. But in Will's case, the PDA is causing his lungs to have more fluid in them. Will also has what appears to be a hemorrhage near one of the ventricles in his brain. The ventricles are also measuring big. The medication used to help the PDA can cause the hemorrhage to worsen. But the doctors don't really have a choice.

Will just finished the round of medication for the PDA in hopes to help the lungs at well. We found out tonight that the medication closed the PDA by 40%! The doctors seemed pleased.

Now is the waiting game. We need the little man to gain weight and get stronger.

Before Tyler and I left tonight, we held hands and said a prayer. I felt a peace wash over me and we pleaded, yet again, for our Heavenly Father to protect Will through the night while we are gone. I know the nurses take good care of him, but I love knowing he has angels standing watch as well.

Good night, my sweet one. Keep being my strong-willed warrior.