Balancing

Having twins is a daily balancing act on a good day; as I would imagine it is for any parent with more than one child. However, the attempted act of balancing time between one in the PICU and one at home (at Gran & Poppy's) is impossible. As desperately as I want to be in two places at the same time, obviously that is impossible. Letting go of control and relying on others for Kennedy's daily care and needs is difficult, and entrusting Drake with a new nurse every 12hrs is unacceptable. We are so fortunate that Kennedy is able to be with my parents, and that they know her daily routine. We are also blessed to have Lisa as our home nurse who has gone above and beyond staying with Drake allowing us to spend some much needed time with Kennedy. 

Since Drake's tracheostomy surgery on Thursday, so many doctors and nurses have been concerned with our emotions about life with a trach. Much to their surprise, we are handling that aspect very well. If a trach is what he needs to breath and have a better life, then that is what he needs...and we adjust. Brian and I are ready to learn what we need to know for daily life and care so that we can get our baby boy back home. Our concern since his surgery was and still is the pneumonia. Although he isn't out of the woods yet, we are pleased with the progress he has made so far. 

His 1st trach change will be done by his surgeon and that will take place either tomorrow or Thursday. We will be present for this procedure, as we will be learning for his future weekly trach changes at home. Gran, Poppy & Lisa will be learning trach CPR tomorrow evening here in the PICU. Brian and I will be learning this weekend. They like to keep the class sizes small and the weekend works better with Brian's work schedule. Today they began weaning Drake off of the paralytic medications. A smile popped on my face as soon as he squeezed my finger! I was surprised how quickly he began moving his appendages once his meds were weaned by 0.1ml. Once his trach has been changed by the surgeon, they will bring him completely out of the paralyzed state. We are preparing ourselves for an angry baby once this happens. He will still be on pain medication, so pain is not a worry...but we don't think he is going to be very happy about the trach or the ventilator. Hopefully he will show everyone that he doesn't need the ventilator. He started back on his Pediasure last night and tolerated the tiny feeds really well; so today they increased by 5ml every 4hrs. By tomorrow he will be on full continuous feeds of 40ml per hour. We were told his morning chest X-ray still looked a little "fluffy" on the right side, but looks to have improved from yesterday. I guess "fluffy" is better than "hazy" in doctor terminology.

Tomorrow morning Brian and I will be meeting with the person in charge of Our Children's House at Baylor. This is where Drake will be transferred once he is pneumonia free. At this facility we will be living on a floor dedicated to trach patients and learning trach care. This is a transitional environment to prepare families and make them feel comfortable meeting their child's needs before going home. This will be much less restrictive than the PICU, and Kennedy will be able to visit her brother!  

For the next several weeks, our beam will be teetering in Drake's direction because he will be requiring more of our time while we learn his trach care; therefore, we are going to need to have a very special mommy-daddy-Kennedy day once we are settled back in at home. 

Holding mommy's finger today as they begin to wean the paralytic meds.

Working on healing his little lungs.

Dragging daddy around Gran & Poppy's!

Apparently she has missed daddy and has so much to show him :)

Snuggling with daddy before night-night.

Face-timing with my family! Not the best snap-shot of Kennedy...she was busy talking :)

The collage that I put up in his room so that his nurses could see Drake as we know him...happy & healthy. 

That Moment

The past few weeks have been filled with several moments that have made me stop in my tracks. Some moments filled with pure happiness and others consumed with fear. Just a few weeks ago we sat in our house, just the 4 of us, and my heart was filled with absolute joy. Nothing exciting...nothing special...just our little family at our home together and it was wonderful! Last Thursday when we were preparing the laundry basket for the babies to sled, Kennedy sat so still and patient as she waited for us to provide enough support for Drake with blankets and pillows. It was at that very moment that I realized our little girl has been given the gift of patience far beyond her 19 months. And then last Monday evening, the moment hit me like a title wave...I knew it was time to take Drake to the hospital. The realization that he needed more support than we could provide from home was hard to swallow, but a necessary realization in order to help him heal. Here we are 8 days later and still in the PICU(Pediatric Intensive Care Unit)...luckily getting better every day! 

Today's update:

Drake has been successfully weaned off of the vapotherm and onto a regular cannula. This morning he was on a flow of 4L and this evening he is down to 3L. Every day we are noticing slow and steady progress toward his recovery. So far there has not been any talk of moving us from the PICU to the Pedi floor, but we have high hopes that he will be ready for the move in the near future. The doctor ordered an EKG this morning because Drake's heart-rate has been fluctuating between extremes. When he is awake (and agitated) his heart-rate is extremely high and when he is in a deep sound sleep it is extremely low. We are going to assume that no news is good news, because no one came in to go over the results with us today. At 1pm Drake and I were wheeled down for a GI test. The doctors wanted to make sure his nissen was still in tact from his previous surgery and that he was not refluxing into his lungs. The results showed that his nissen is still very much in tact and refluxing into his lungs is not an issue. He enjoyed listening to his music today and playing his favorite game on the iPad (baby finger). His game helps build the concept of cause and effect with him as he is learning to use his hands. Even the slightest movement with his hand will make a picture appear and a noise sound. Poor little guy was awake all day long without a nap and struggling with his 4 new teeth coming through his gums. Two of the four have broken the surface and he finally fell sound asleep about 7:45pm. We hope and pray he is able to fall back asleep after his breathing treatment and cpts at 10pm. 

Hanging out with Daddy in the PICU.

I'm here for you, little buddy.

Somebody likes the suction device! This could be good news for future dentist appointments. 

This makes it difficult to suck on my hand! 

Sleeping angel! 

I love you, baby boy! 

Getting better and stronger every day!

Sweet dreams!

Playing his favorite game on the iPad.

Mean muggin' - she was out of chocolate covered strawberries. (I think it is safe to say that Gran & Poppy are spoiling her!)

Please, may I have some more? 

The Flow

Despite our best efforts, Drake was unable to maintain his oxygen saturation levels at home on O2. He was admitted to the Pediatric ICU at Medical City in Dallas on Monday evening. 

I don't think anyone could nor should ever get used to the ever constant flow of activity with their child being in the ICU! Nurses, doctors, respiratory therapists, and the list continues. Unfortunately, when you experience this as much as we have, there is a certain numbness to the environment.  You have reached that point when you find yourself doing things that are typically reserved for skilled nurses and when you don't ask the nurse one hundred questions every time they walk through the door. 

I am happy to say that Brian made it out of Florida on the first flight out to help give myself and Drake's nurse an extra hand...to get some much needed sleep and nutrition!

Drake has been on a constant flow of Heliox at a very high setting; a blend of helium, oxygen, and a heated vapor. Without going into the details we now know, this gas mixture permeates the lungs easier. They have been coming in every three hours to change the tanks and these tanks are very big and heavy. This has been doing great things to keep his saturation levels where they should be. We are so glad this is working well; the doctor said that if they have to intubate someone that was on a ventilator as long as he was, it is very difficult to ween them off again. We pray that he continues to show improvements on the Heliox and intubation is not necessary. 

Trying to squeeze in a short nap before another RN, RT or MD come in to work on him.

Taking a look around his room.

Sweet nurse Lisa helping with a breathing treatment! Have I meantioned that we love her?!!!

Poppy sent us a picture of Kennedy tonight. I miss her SO much!!!

Just a little girl hanging out with her Poppy! 

Kennedy patting Drake on the back this weekend at home. She was trying to help with his cpts. 

I have no words! :)

Snow day fun last week!

"Mom, is all of this really nesesary?" 

Pure excitement! 

Sneezes, Sniffles & Coughs...Oh, My!

Poor little Drake is suffering from what we believe to be allergies with this ever changing Texas weather. Allergies seem to be playing havoc with adults, too; therefore, it isn't a big surprise that they are hitting Drake so hard. Unfortunately, something as simple as seasonal allergies for anyone else quickly turns into a respiratory infection for Drake. With the possibility of a dreaded hospital stay on the horizon, we are battling this with our full infantry. He is receiving around the clock breathing treatments every 4hrs, his steroid inhaler twice each day, zyrtec, and cpts. We are closely monitoring his oxygen levels in his blood to make sure he doesn't need cannula assistance. So far...so good! It has been 3 months since he has required this type of intervention to combat a respiratory infection, and those 3 months were wonderful! This too shall pass.

Kennedy seems to have the same issues, but on a much smaller scale. Through the sneezes, sniffles, and coughs, Drake is still working hard with this daily therapies and Kennedy is playing hard. Drake's OT suggested Kinesiology Tape for the back of his neck along his neck and back muscles. She placed some on him on Friday to see if it would make a difference with his head and neck control. Immediately upon implementation of the tape I noticed a huge difference. Drake's nurse, Daddy, Gran & Poppy have all noticed a vast difference as well. I have been communicating daily back and forth with the director of the Snowdrop program in the UK for Drake's reassessment. So far, I have sent him 15 videos and answered all of his questions. I love that the questions he asks about Drake are specific to him and not just generic like we receive at other doctors. It is finally nice to be able to answer, "Yes! He does do that!" 

Drake is up to 23# now and quickly filling out the hand-me-downs from cousin Jacob. He can actually wear 12-18 months without any room to spare!  Kennedy has reached 19# and is wearing 9-12 month clothes. 9 month fit perfectly and 12 month clothes are still too big for now...she just needs a little more time. She is a very healthy eater; therefore, growing at a healthy rate has not been a problem.  

Outstanding head lift! And he held it up for almost a minute!!!

This smile!

Head control! 

Headed home to Tyler! Each looking out their respective window. (Don't worry...we were stopped at a red light) 

Escaping from the baby play area we created at Gran & Poppy's!

Sweet boy!

Watching the Super Bowl...well, at least the commercials! 

Working out like daddy! (That is indeed a dog toy :)

Wearing a stethoscope like my Poppy & Uncle Chuck. Gotta go check on my patient.

Because some days are just pajama & boots kind of days!

Daddy & Kennedy playing their funny face game!

Are you saying there isn't any growing room in these?

Really mom, another picture? 

Working hard during PT!