The Fear

Fear never really goes away; sure, it becomes less of a constant feeling, but it's always there...lingering in the back of our minds. At times it pushes its way to the forefront...today was one of those days. I was awoken from my sleep to the sounds of alarms, many alarms. Within minutes our tiny room was swarming with respiratory therapist and nurses...this was more than just our assigned medical personnel. I followed the protocol for parents in the hospital...get out of the way and let the medical team work. 

Drake was not moving air clearly, he was laboring with every breath, and his saturations were dropping. He was requiring 1.5L of O2, up from his usual .25L, and even with that he was struggling. They were bagging him, and an emergency trach change as next. Even with the bustling sounds of medical equipment and staff, it was eerily quiet at the same time. I was quiet, too. Silent actually. Praying this would correct the problem and my baby boy would be ok. 

The change was made and he began to calm down. The sound of air moving through his lungs was improving. Finally I was able to hold him, comfort him, and reassure him. During rounds the doctor and I discussed possibilities...was this the start of a new infection? Would we be sent back to the PICU? Was this another case of one step forward and two steps back? These fears are more than just thoughts in our heads. They are internal, gut wrenching feelings of fear. So, we pray. More than our daily prayers. Prayers for healing; prayers for strength. 

Labs were drawn and we waited. No news is good news...at least in the hospital. His CRP, which measures for inflammation, was only slightly elevated; his teething alone could cause this. His white count was only slightly elevated also. So now we wait, and we watch him.

He seems better and he looks better! Surely this was only caused from his teething. He is back down to only .25L of O2, full of energy, and full of smiles. All good signs! So for now, despite our frightful morning, the fears recede. 

Kennedy on the other hand experienced her 1st party. Gran and Poppy took her to a birthday party for our friends' one year old son. She had a wonderful time, and it was good for her to finally interact with other children! How I wish I could have seen this! I'll be there next time...we all will. 

Tummy Time!

He loves his new "loner" chair/stroller/wheelchair!

Grasping a toy with both hands!!! Such an accomplishment! 

Just hanging around.

Feeling much better!

Thanks for fixing my hair, daddy! Great job!

Teething means needing assistance with my hands. Another great job, daddy!

Ready to go to the party!

She found a toy! (Sorry baby...that's for the birthday boy.)

1st ride in a little red wagon! And she got to ride with the birthday boy! 

Possible Hangup

Insurance is a headache...we met with the Care Team late this afternoon and found out that our insurance company has up to 15 days from today to process our "out of network" as "in network." Since our much anticipated discharge date is scheduled for exactly one week (7 days) from today, this was not the news we were expecting. It is possible that it will not take that long, but we need to be prepared for the worst case scenario. I can not complete my 2nd rooming-in requirement until we have our home ventilation supplies; therefore, this is a definitely a possible hangup. This seems a bit ridiculous because surely it is costing them more for Drake to be hospitalized each day than it would cost for our home equipment. 

On a brighter note...Drake is doing quite well! He isn't sleeping well at the hospital, but he is doing much better with his respirations. Today he was able to complete two 4hr trials off of breath support from the vent. Tomorrow he will do an 8hr trail, and it will be followed with a blood gas to check his CO2 level. This will be the true test to see how his body is handling things. If we have a good report, he will move to some time periods during the days of being completely off of the vent. Ideally, we will be able to move Drake to only needing the vent support at night; at least that is our goal.

Lisa is with Drake tonight at the hospital, and Brian and I enjoyed a fun filled evening with Gran, Poppy and Kennedy! We can't wait to have Drake back to enjoy evenings like this with all of us!

Finally getting some sleep!

Loving daddy's rooming-in day!

Loves climbing in the bouncy seat for baby cousin Elizabeth! 

Ready for some football!!!

"Who" is looking cute?!!!

Poppy & his girls!!!

Checking out everything! 

We are ready to have him home!

Thank you for the pretty dress, Aunt Mere & Uncle Aaron!

Playing the tambourine! 

Breakfast with mommy! She clearly loves jam! 

Ready for bed!

Rooming-In

I have successfully completed my first "rooming-in" as "caregiver #1." I have two of these to complete (1 down & 1 to go) and Brian (caregiver #2) has one. Each "room-in" is a 24hr period where the parent provides total care for the child. Meaning...we request and administer all of his medications around the clock (8am, 12pm, 1pm, 4pm, 6pm, 8:30pm, 12:30am, 4am, 7am) and we give his various respiratory treatments around the clock (7am, 11am, 3pm, 7pm, 11pm, 3am). We also do all of his daily trach care, feeds, diapers, bath, ect...Obviously, there isn't much time for sleep. Most parents do their rooming ins right before discharge, but we decided to go ahead and get them out of the way. One less thing to worry about. So far his faster wean off of the methadone is going well; although, he was up until 2am this morning! If he continues to do well, our discharge date of April 1st is a real possibility!

The nurses were a little surprised when I pulled out my personal color coded medication chart for Drake. It seemed quite reasonable to me and it worked great! They said it was definitely a teacher thing. I'm going to take that as a compliment :) 

I would like to do my 2nd room-in this week; however, the 2nd room-in must be completed with our home equipment, and right now we don't know when it will be delivered to Our Children's House at Baylor. We still have plenty of time before we go home, so I will do my second room-in as soon as our equipment arrives. It will be nice to have our own equipment for a couple of weeks in the hospital so that we can get familiar with everything. 

Drake's newly discovered ability with grasping is fun to watch! This is a skill we have been working on for quite some time, and it is exciting to see him using his hands! He even grabbed my St. Patrick's Day beads last night during FaceTime so daddy was able to see it, too! One of the toys they have in the hospital for him to use is an electronic toy tambourine. I've already been searching for one online for him to have once we are home. I've never seen him show such a preference for a toy! 

We are still doing the best we can with our balancing act between time at the hospital with Drake and time with Kennedy at Gran & Poppy's. It doesn't get any easier, but knowing all of us being together again is on the horizon does makes it bearable. Only 14 more days!!!

Finger in his mouth!!!

His favorite hospital toy!

Tummy Time!

Even grasping his monkey lovey in his sleep :)

Holding hands with cousin Jacob! 

Our little comedian during FaceTime! She is constantly making us laugh.

Life Interrupted

 We are a month into Drake's hospitalization and as eager as we are to get him back home, we are trying our best to be patient with the process. This afternoon we met with the Care Team to discuss his progress, goals and his tentative discharge date. As of right now, we will hopefully be taking our baby boy home on April 1st...not the date we were hoping to hear. Brian and I are scheduled to be cleared with all of our trach trainings and 24hr total care rooming-in days by March 23rd. We were actually called "over achieving" parents during our meeting...we are going to assume that was a compliment. His extended stay is due to being weaned off of the methadone. His 1st scheduled wean was to be completed on April 8th, so the 1st doesn't seem as bad now. Drake will let us know if the faster wean is going to work, so we will be praying he handles this well.

Gran is going to bring Kennedy down to see Drake later this week, and we think this is going to be good for both of them. Drake's extended hospitalization has been difficult on her, too. We are lucky to have Gran & Poppy taking care of her, but not having her mommy, daddy & bubba with her daily has been taking a toll. She has been regressing; this is much like you would see with a young child when a new baby is born into the family. It is most noticeable when trying to get our once chatterbox to use her words. We know once we are all back home again, she will be back to talking our ears off in no time. 

The good news...Drake has maintained his saturations on 1L of oxygen support, and his CO2 levels have been in the "normal" range for several days now. We honestly never thought his CO2 levels would reach "normal" range. Over the next few weeks, they will continue to try and wean his oxygen support and vent settings. Even though it is going to take a little longer than we had hoped, our life will pick back up this spring.

LoVe seeing his sweet smile again!!!

Enjoying having mommy & daddy for the evening!

Thanks for the encouragement, daddy!

Working so hard!!!

Zonked out after his bath :)

Going...

Going...

Gone!  Out like a light! 

Love holding this girl!

Brian holding our new niece, Elizabeth 

The Taste

It isn't a news flash that our senses can evoke emotionally charged memories. We've all experienced moments when an unexpected arousal of a sense transforms you back in time. The "smell" of floral soap that floods my mind with flashbacks from my grandma's house as a child. The "sound" of a particular song that immediately takes me back to the summer of 2000 driving down the beach with the windows rolled down.  I guarantee Brian can name that song and that moment, too! That's the summer we fell in love. The other night as I was settling in to my chair in the PICU, I made a hot cup of tea. The smell isn't what got me...it was the "taste". The moment I swallowed the first sip, it conjured up all of our NICU memories. This particular tea, Tazo calm tea, is what we drank so many nights while we were at Presby. I immediately called Brian to tell him what I had experienced, and he understood completely because the same emotional connection was attached to his sip of tea the night before. It's interesting how our minds work. 

Today Drake was transported to his new facility at Baylor Our Children's House. How long we will be here is still unknown at this point. We have been told anywhere from 2-6wks. His pulmonologist are working diligently to get his CO2 numbers down into normal ranges before we are discharged home. We are praying for a short stay, but we are of course willing to stay as long as necessary for Drake's best interest. 

Lisa is staying with Drake tonight for his 1st official night at BOCH (Baylor Our Children's House). Kennedy has been full of smiles, giggles and silliness since Brian and I arrived this evening. Gran & Poppy said that Kennedy really needed this dose of mommy and daddy. The truth is...we needed this dose of Kennedy. When I laid her in bed tonight she looked at me with a sweet smile and said, "I love you!" I said, "I love you, too!" I'm sad that I won't be here in the morning when she wakes up, but she is in good hands. Oh, how I can't wait to be back home with both of my babies!!!

Settling in at BOCH

All smiles during his transport!

LOVE having my smiley boy back!!!

Here we go!

Snuggles with mommy!

It's so hard leaving this little girl.

Loving time with daddy!

This is the best medicine! 

Cherishing evenings when I can give this litte goofball a bath!

Snuggles!

Holding my new niece, Elizabeth, for the 1st time!!!

The Price Family...Uncle Aaron, Aunt Meredith, Jacob & Elizabeth!

Just helping my Poppy with the cows.

Sweet dreams little buddy!

"Night, night! I love you!"