I have for whatever reason been reminded the last few days just how far I have come in this life. It started yesterday as I was driving around, alone which is rare, and had my i phone blaring it's downloaded songs. We all know I have a love of all things rap and r&b. It's always been there. I find it quite impressive how the singer can get the lyrics to flow like they do and I always find the beat to be somewhat electric, it makes me smile and start to dance. I also love, love, love country music. Odd combo, I know. However, country music has been pushed to the wayside since we had the miscarriage and lost Tadem.
Friday, April 30, 2010
Monday, April 26, 2010
Thursday, April 22, 2010
Tuesday, April 20, 2010
Monday, April 19, 2010
Today has been an emotional day for me. It's like I held it together all week and now as my son's second open heart surgery journey comes to a close, my emotions took over. It's pretty cool how Mama's can keep it together when they really, really need to only to lose it when things are all said and done. As always in hospitals, you meet so many people. Some doing better than you and some doing much worse. If I had a dollar for every time one of the nurses, doctors or parent/family member of another child said how Paxton looks so amazing we would be rich. For being a single ventricle baby, Paxton really and truly has made this all look like a cake walk.
Friday, April 16, 2010
A work of God, my little man is. Truly and honestly, he blows my mind. Some would say why are you posting a picture of him in that condition. I say because no body can grasp all that he has been through unless you are in the thick of it. This picture takes my breath away. He is six months old and this is the second time he has gone through this. I post this picture because my dear friends if you think you are having a bad day. Look at this baby. If you think you've got it bad, look at this baby. Then look at how he has recovered in 3 days. My son, could teach the entire world a lot about happiness, fight and spirit! He has every reason to be a cranky baby and yet look at him. He teaches me every day to remember what is important. There isn't a whole lot he gets upset about. It's like at 6 months he already knows not to sweat the small stuff and at 30 years old I strive every single day to be just like my son!
The medical update:
Paxton is off of oxygen and breathing room air at exactly the rate he should be. Between 80 and 85 percent saturation. Healthy hearts saturate at 100 percent. This will always contribute to him tiring more easily. He had his chest tube pulled. Two very big lines pulled and he remains with only one central line. He is tolerating feeds, while not as much as before surgery, he is still eating a good amount. He is on zero i.v. medications and if you look at my last post, that in and of itself is a miracle. His lungs are still really wet, the doctor is actually surprised by this. Most babies would have cleared by now. They are not going to put a chest tube in, but rather continue watching it as it has not gotten any worse, it's just not gone either. As I write this, he is passed out snoring, such a beautiful sound when I think of where he was just 3 days ago.
We will be moving to the step down unit later today! Step down unit is the last step before home. That's not to say we are outta here tomorrow or anything, it just means he's not nearly as critical, which is awesome! Because Wednesday he was still critical! Before long, I just know he's gonna bust outta this joint and we will be on the journey home, with two open heart surgeries under his belt and a whole heck of a lot of love surrounding him and the world as his oyster!
I will keep you updated!
A big thank you to Nana Kimmie for all she has done for our little man! I'm pretty sure she's ready to run away with him forever! She loves him so much ; ) She has also allowed me to go get some rest and gets whatever I may need so I can be here with Paxton.
Thank you also to my BFF "Eyeween" for taking the older two boys while Dave was up here for Paxtons surgery and recovery. The boys are pretty much ready to pack up and jump ship to be on yours they had so much fun! Knowing my other loves were taken care of meant so much!
Thursday, April 15, 2010
Wednesday, April 14, 2010
Yesterday after surgery we were able to finally see Paxton around 2 pm. He was still out from anesthesia so we stayed a few minutes then went to go grab some lunch. By the time we returned he was a mess. Lots of crying, moaning and irritability, not so much from pain as he was on so many pain meds I'm not sure pain was possible, but more from the effects of a LOT of morphine and versed. I think he was a little freaked out by how it made him feel. He was also experiencing what they call a "Glenn Headache" (the bi directional glenn is the name of his surgery) and the headache is caused by the repair the surgeon made to his heart to allow more bloodflow in the upper part of his body instead of the lower. The blood now drains from his head into his lungs and sends oxygenated blood to his heart. The headache was intense and that paired with the amount of drugs he is on just really threw him over the edge.
Tuesday, April 13, 2010
Monday, April 12, 2010
We spent four hours in pre op today. Ekg's, blood tests, chest x rays and the likes. It seemed to go on forever yet our baby boy handled it like well... a rockstar! He has every reason in the world to be a cranky, crabby baby only he is the complete opposite. He smiled, talked and flirted. He continues to show us what happy truly means.
Sunday, April 11, 2010
Thursday, April 8, 2010
Lots of things have been going on here at the West house. Easter was so much fun with two little boys who have clearly begun to understand holidays and what special treats might be in for them. It melted my heart to hear their fat feet slapping the tile as they searched the house still groggy from sleep for the Easter baskets that were left for them.
Watching the joy on their faces as they searched the yard for hidden Easter eggs with their friends. Running as fast as could they could to get them all. Sometimes stopping to crack one open for a jelly bean or two. Or realizing that Mason dove into a chocolate easter egg so quickly he forgot to take the foil wrapper off (cringe...)
Oh to be an innocent child again where counting candies was the mission for the day.
We gathered for family pictures, the likes of Paxtons next surgery looming before us made me feel an intense need to get us all together. The mission was a tough one, trying to get 5 sets of eyes staring at the camera all at once was not easy.
Then again, it's the moments unplanned that make for the best family photos. The raw love a Mother has for her children is nearly palpable.
How freaking blessed am I...
God never gives us more than we can handle and this Easter I realized that I am pretty honored to come to the realization that not only does HE feel that I can handle three boys, HE also feels that I can handle one of which is pretty darn sick. I feel proud. When I look at these pictures I realize we are all right where we are supposed to be. I realize that while we are most certainly not a perfect family, we are pretty darn amazing. We don't give up. We fall down, but we get back up. Together, we can do anything.
Happy First Easter Paxie. Happy Third Easter Moo Moo, Happy Fourth Easter Austi and a Big Happy Easter to my husband who continues to help guide me through this journey.
I wonder where we will be next year at this time...
Wednesday, April 7, 2010
It is early morning. As exhausted as I am, as much as I know I should be sleeping, I can't. My mind just will not shut down. Paxton is now sleeping with me in our bed instead of his cradle and I find myself just staring at him. I kiss him constantly and he shuffles and sighs in his sleep when I do. I am hoping if I just come to this dang computer that has been here for me from the day we found out he was sick and let it all out then maybe my mind will rest. I am terrified. I know this isn't the worst of the three surgeries, but it is still open heart surgery. I know recovery is said to be quicker, but I cannot stop the what if's. Paxton has me wrapped around his little finger like no other. I can't explain the dependency that is there when you have a sick child. I can't explain how not knowing if we would ever see him be born makes you never take a moment for granted. How knowing that one day at a time is all you really have. I am told he will be significantly stronger after this surgery. He won't be nearly as blue and he will have a lot more energy. I am happy for him to feel better. He is so extremely stoic, my little man. He only melts around 7 at night and I am guessing it's because he is due for all of his meds at 9 and just starts to not feel well come then. He is the epitome of strength and that blows me away. How did I get so lucky to be blessed with this amazing little boy...He teaches me so much every day and when I look at the one dimpled smile that spreads across his face every time he sees me, I think this can't be over yet. Paxton has so much to give and he will be just fine. While I clearly can't stop the thoughts that cloud my head and scare me out of my whits, I try to keep it together for my other two boys and for my husband. We have big plans, our little family and Paxton will be right in the thick of them. He has to be...