When It Rains..

Some people say when it rains it pours....

After this week....I have felt more like when it rains....it pours...then turns into a hurricane....and then it turns into a giant flash flood. 

Days have been hard. So hard. Each day has felt like a whole new and almost overpowering wave of the unexpected. 

Blow #1

At the start of this week....David and I were so hopeful for little Adalyn and her bottle feeds. She was up to a little over 50% of all of her feeds orally! She was loving eating from the bottle and getting stronger in learning how. She had a swallow study this week just to make sure that she wasn't aspirating any of her food....and to see the pathway of her swallow. 

During the study....they found that Adalyn has been aspirating some of her food. Because of this...we had to stop all oral feeds...and get things in order for a G-Tube next week. We were crushed. Not because of the G-tube....we know that the G-tube will be so much better for her than the N/G tube...she hates that and pulls it out.....We were crushed because she enjoys her bottle so much.. To take that away from her was awful. 

The nurses and OT's cried with us. They have seen how hard Adalyn has worked. How much she loves it.... 

Blow #2

With Adalyn's brain anomalies, from the beginning they have told us she is at risk of seizures. Seizures that could potentially get so severe that they cannot be controlled by medicine. We had been praying so much that she wouldn't have to go through that...

However...a few days ago, we began to notice seizure activity. She would fixate her eye,  jitter for about 15 seconds....and drop her oxygen They decided to do an EEG to see. Watching them stick all of the wires on her little head was heart breaking. Holding her while she kept screaming until she exhausted herself to sleep....knowing there was nothing we could do made us feel so incredibly helpless. Watching her sleep after...all covered in wires made us just want to take her and run away from all of this...and pretend this was all just a bad dream.

As it would turn out, she was having seizures. 

They started her on anti-seizure medicine. The first dose sedated her for a good day and a half. They say after a few weeks, she won't be so sleep from the medicine, that her body will get used to it. 

Even after the first few doses....she has still had a few seizures. They increased the medicine today in hopes to control it. 

Blow #3

This wave has felt like it will overpower me...almost more than I can feel to bear. 

David has been having really bad stomach pain the past month. We attributed it to stress....thinking it was ulcers (we could have been more wrong!) He decided to go to an Insta-Care clinic this week. For him to say that he needed to go to the doctor meant he should have gone a long time ago. 

At the clinic....they found fluid in his liver. And lungs. And abdomen. 

They sent him back up to ER at the U for more tests. As it would turn out.....David is in acute heart failure.

Those words have almost threatened to bring my world tumbling down this week. One of the valves in his heart has grown too weak to continue to work properly against the pressures....and has caused severe fluid back up all over. Because of the way his heart is.....this is mostly reversible for him. 

So....David was admitted to the hospital immediately. They want him to loose twenty pounds of fluid. It has only been one day and he as already lost ten! 

After he looses the fluid, they will go in through with a catheter and replace the valve. 

Meaning both David and Adalyn will be having surgery next week. 

I still feel like I don't even know how to begin processing one ounce of this week....or even begin to type how I feel. My heart aches in more ways then I ever could have imagined. It currently partly lies on two separate floors of the hospital. 

The NICU nurses.....our family....and friends who have been there this past week have carried me through in so many ways, They have cried with me....made me laugh....and somehow kept reminding me that I can do hard things. 

I feel like my steps have never been more unsteady in my life. Sometimes I pray for the strength just to get through minute to minute. Some moments.....I just want to hide under a blanket and cry. Other moments I feel so lifted....that somehow....someday....this will all be okay. 

Through all the of this.....I know somehow there is a purpose. A reason. A silver lining of hope. 

We have to believe that. 

It is a tender mercy.....at least we have been up here when Adalyn's seziures started. At least we were at the best place possible for David to have this surgery...

Mostly for now... we just keep telling ourselves we can do hard things. It is in no way easy. But we're somehow moving forward. 

Updates will come as I have time to post them,. 

Hopefully you all know how grateful we are for each of your prayers and support!