Wednesday, December 26, 2012

Home Sweet Home!! December 26th, 2012

Blake has been home a week and I have cherished and thoroughly enjoyed every minute of it. I have taken forever to write this post because I have had my hands pretty full juggling both boys, medical equipment, appointments, sleepless nights and the chaos of the holidays. Even when I get some down time, I am way too exhausted to type up an update, let alone even think of something intelligent to say. But I was able to sneak in a two hour nap earlier so I think I have enough energy to finish a post finally!

So backing up to the night before we brought Blake home, Patrick and I stayed the night at the hospital for a trial run in the "nesting" room.  The company who supplies us with Blake's home oxygen tanks and apnea monitors met up with me earlier that day to show me how all the equipment works and made sure I knew each piece like the back of my hand. Staying the night would help us figure out all the equipment by ourselves that way if we had any questions, there would be a nurse near by to give give us a hand or answer any questions. The "nesting" went great! Blake was super easy. Only fussing when he was hungry and sleeping in between feeds. I was a little nervous about everything but having the opportunity to take care of him with a nurse just down the hall really eased my mind.

When the morning came, I was beyond excited. Luckily, Blake had his primary nurse the day of his discharge. I would have been really sad if we didn't get to see her before we left. Kathy, his nurse, went above and beyond for our little boy. She was basically Blake's NICU mama and I am so thankful that she was his primary. Not only was she there to answer every one of my million questions, but she was like my own little therapist when I needed to vent or talk about any fears I had throughout this whole journey. She saw us through all the ups and downs and she went out of her way to make sure that we were okay. You can tell that she genuinely loved Blake and knowing that made it a little easier for me to leave him there day after day for the 126 days of his NICU stay. I really hope she knows just how much of a difference she made in our lives and I am so thankful for her!

Discharge took a few hours but that was okay with me. I wanted to make sure I had every question answered before we were finally on our own. I had been fantasizing about the day my little angel could go home and the day was finally here. For 126 days, I walked up to the hospital entrance and saw new mother's being wheeled out to their cars with their newborn babies buckled into their car seats. I walked through the lobby and saw the ecstatic family members waiting to welcome the newest edition to the family. I walked past the Stork's nest and saw all the beautiful chubby pink babies laying in their little beds while more family fawned over them through the glass windows. And everyday, I imagined what it would be like when it was finally my turn to take my baby home. What it would feel like to see my baby in his car seat as we were wheeled down to our car. How it would feel to have people congratulate us on how far Blake has come. And finally, I always imagined how amazing it would feel to finally walk through our front door, set down our bags and for the first time in 126 days, have my family be together under one roof.

As we waited for the paperwork to get finished, all the nurses, doctors, and therapists who ever cared for Blake at one point or another came in to say their goodbyes and congratulate us. They were so happy to see him finally be well enough to go home. All I could do was smile and be thankful.

When it was finally time to leave, I was brought a wheel chair and they sat Blake, who was all cozy in his car seat, in my lap and we moved towards the door. All the emotion that I had felt through this 126 day journey flooded to the surface and I became a blubbering mess. I was so happy to finally leave with my baby but I was so sad to leave all the NICU staff behind. They all became such a huge part of my life and I was so thankful for each and every person who helped Blake get to this point. I think I even saw a few of the nurses and staff members get a little teary eyed as we all said our goodbyes. They told me to keep them updated with his progress and to visit them after RSV season and of course I agreed. And when the rounds of hugs and best wishes ended, the doors opened and Kathy wheeled us out to meet Patrick at the curb with our car. I don't think I will ever be able to express how appreciative I am of all those people. They saw me at my worst and were there to share every one of Blake's milestones with us. They truly became apart of our family and they will forever be in my heart.

Saying goodbye to Kathy was even harder than I had thought it would be. She parked us at the curb and helped us load Blake and all his equipment into the car and we did a big group hug before saying our goodbyes. Everything seemed to happen so quickly and before I knew it, we were driving away with Blake. Finally.

The first day was a little rough. The medical equipment company delivered the rest of Blake's tanks after we got home. He now has one huge stationary oxygen tank next to his bed in our room, a medium sized tank that can be wheeled around on a little cart and several smaller backpack sized tanks to use for travel. He also has an apnea monitor that straps across his chest and alarms very very loudly when he has a drop or high raise in his heart rate or he stops breathing. Luckily, the only times it has gone off are when he cries himself into a fury and when the belt shifts a little bit to the point where the electrodes aren't in the correct spot. I usually only use the monitor at night when we are sleeping or the rare occasions when we have to leave the house, like to his doctor appointments. Other than that, I just have to worry about lugging around his oxygen when we move about the house.

Ashton has been the perfect little brother. He hasn't shown any signs of jealousy which is great because I was really worried about how Ashton may have reacted to sharing his parents. He loves Blake and is always talking about him or wanting to kiss his him or "tickle" his feet. Its very cute and it definitely makes my job a little easier since he is behaving nicely towards Blake.

We have been busy with appointment after appointment. Blake met his pediatrician and she wants to see him every couple weeks for the first few months to keep track of his weight and progress. We have had two home visits from his in-home nurse. She weighs him and just checks up on him. He has gained half a pound already since he has been home which puts him at 6 pounds 6 ounces. And on Thursday, a developmental therapist will be coming to our house to see where he is developmentally and give us some insight as to what to expect from him these next few months.

I think it is finally safe to say that we have adjusted pretty well to having Blake home. I went out and invested in a Moby wrap to carry Blake around in and it was definitely worth it. Blake loves being all snuggled up close to me and it gives me free hands. Speaking of being snuggled, Blake loves to be held. He is a very good baby as long as he is fed on time and held when he wants to be held, which is pretty much all the time. But that is A-okay with me! We have four months of not being held to make up for so I will be more than happy to hold him any time he wants. After everything this poor child has been through, he deserves to be spoiled.

Every time I look at his sweet little face, I am instantly reminded of how far he has come. I could watch him all day and never get bored. Blake has taught me to never take anything for granted. Just four months ago, he was a tiny, fragile little baby with all the odds against him. He was a measly pound and a half and he pushed through it all. His strength is remarkable. I am overjoyed with love and happiness because of this child and I feel like I am a better mother and person because of it. Now that he is home, the weight of the world is off my shoulders and I can focus on being the very best mother to both of my children. Having them both under the same roof is the best feeling ever. My family is my world and I love having us all together like it should have been all along.  

This won't be my last post. I will still update you guys on all his progress. Even though we are finally home, Blake still has many more milestones to reach and we want to share them with you. You were there with us through all the heart ache, therefore, you all deserve to share in on all the happiness as he continues to progress and reach milestone after milestone. Thank you so much for being with us on this journey of ours. Your prayers made a difference and brought our little trooper home. We love you all!

On our way home from the hospital!

Loves to snuggle <3


Moby wrap

Cuddling with Daddy

Snoozing in one of his favorite spots!

My little monkey

Merry Christmas!

Fell asleep during tummy time

After bath time

The sweetest little miracle ever!

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