Wednesday, November 21, 2012


We are officially the new kids on the block in NICU A wing. I miss the PICU D wing. I mean, I don't miss the open floor, the in and out craziness, the noises and lack of privacy....I miss the people. I have never had to spend more than a few days in a hospital before, so I have never really understood the medical field in the way I do now. Nurses are special people. Their job takes special care, insurmountable amounts of energy, long long hours, deep knowledge of pharmaceutical matters, what meds mix or don't mix with each other, which meds are given at what time, chart this, chart that, add and subtract this and that, change this line, clean that diaper....etc etc. that is all for one patient. In the PICU each patient gets their own nurse. They are in that critical of a place that they need that special care. Sometimes though, nursing staff is low and some nurses get two patients, with high needs for attention and they gets swamped and it is amazing to see how much of a team they are up there, the way the help each other out, etc. It simply amazes me at how much they handle on any given day. Through every hurdle Noah faced and conquered (with God leading the way) they got us through it, loved on Noah, took care of him and even me sometimes. The long talks, the comforting words, "we've got this, no worries, go rest"...anytime I called to check on him they would not complain, but just let me know all was well, what the plan for the day was, and sometimes what was wrong and not going well. Most moms don't get to go home at night and sleep 8+ hours. Sometimes I feel guilty about that and then I remember the other sacrifices I'm making as a mom and getting sleep at night is actually not something to feel guilty about. I finally feel like maybe I've earned it just a bit. I'd gladly give up watching my child go through 2 open heart surgeries, numerous IV's, ventilator, feeding tube, wound vacs, no clothes, not holding him for a month and a half, etc in order to have sleepless nights with a healthy baby at home. So, I don't worry about getting sleep at night as much anymore, because I know I can't take care of him in the capacity that he needs, but he is in the care of nurses that can. I try to sleep and rest so that I can at least be functioning and aware during the day to take on the all the information and keep moving forward with him. I know I don't have to carry the load alone or at all, I know to lay my burdens down at the foot of the cross, but this whole journey IS my cross I'm to bear right now. When he says, "take up your cross and follow me"....he means it. Back to nurses. I miss Jill, Laurie, Floyd, Jennifer, Aly, Dr. Duncan, Dr. Meyer, even Dr. Gemeli. They do an outstanding job. From post op, through cardiac arrest, through multiple weeks of no progress, swelling, then the pacemaker, etc. They never gave up on my son. They never got too tired to care for him, cheer him on, help him in every way possible. They got us through the dark times and celebrated through the great times. The cardiac wing of the PICU at Cook Children's Hospital in Ft. Worth is hands down the best place our Noah could be. But, here we are, in a new part of this journey in the NICU and we have new nurses, new dr's (besides our cardiologists) new rules, new schedule, new rounding times, new everything. again. Lord knows we're weary of it all, but He continues to sustain us. So, I pray that the nurses in the NICU love their job as much as our other nurses do. I pray blessings over each of them here because it can be a hard job, full of long days, nights, little sleep, lots of orders, very little thank you's, poop, throw up, blood, etc. Thank a nurse if you know one, be gracious to them when you need them, don't complain, but use manners. Be thankful for them and be patient with them. I'm forever thankful for our nurses, especially in the PICU cardiac wing because in another couple of months we will see them again after surgery 2 and then again after surgery 3. So, we'll be back with them again and I'm just thankful that since we have to be back, we know we will be in good hands.
There is not much to update on Noah today, except that we are waiting on blood cultures to come back since he had that little bit of blood in his stool yesterday. The xray came back ok they said. They stopped feeds, have him on iv fluids, antibiotics and are now waiting. He is sleeping sweetly. I am not bothering him because yesterday was just terrible for him. They moved him over here and had to get him settled in, which took awhile, then they had to stab at him for an hour or more to get blood drawn. So, he NEEDS and has EARNED a day of sweet sleep. It is nice to just sit in his room, quietly and let him rest, allow myself to unwind and just enjoy the day together. Amidst the stresses and frustrations, God gives us both green pastures.

So, Nick, Ava, Dad and Mother are coming down tonight. Mom and Dad are going to hang out with Noah tomorrow for Thanksgiving (still can't believe it is tomorrow). Nick, Ava and I will be together with the Kings and other family from both of their sides. I'm making my mimi's dressing and crescent rolls and I'm thankful I get to carry that on. I need to make them, for her, (even though she has the best seat for thanksgiving ever, next to Jesus) for myself and just because. Remembering her over the last few months has been a big source of encouragement for me through this whole thing, but I do have my moments when I wish I would miss her call and she would leave me a long silly message. I'm thankful for her legacy in me and will be happy to share her food with this new side of the family that God has given us.
We're thankful that Bob(nick's dad) and his wife Carrie will be able to come to town for part of the weekend. We are glad Carrie will get to meet Noah and Bob will get to see him again. All sewn up, and much better than when he left the last time.

Please just keep praying for Noah:
this blood in stool issue to be resolved
for him to be able to start learning with a bottle next week
for his entire digestive system to function properly
for his cardiac output to be enough to sustain him in order to eat well off of a feeding tube.
for his oxygen saturation to remain in the 70's to low 80's.
for his bruises to go away (that one's for momma)
for his hair to grow back (that one's for momma too) seriously, he has patches of shaved hair...sheesh.

for travel safety for my family
for my pops, mom and aunt dawn as they go through this first big holiday without Mimi.

Thanks to ALL who participated in the fundraiser last weekend. WOW. We cannot put into words how much we appreciate and love each and every one of you. We are blown away by God goodness and his love through all of y'all. Amazing. thank you can't be said enough. I hope and pray that you can catch just a glimpse of how thankful we are.

I suppose that's all for now.
love you all.

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