Let It Rain

It's 1:00am. I had to get up to pump. Bleh. Yet, I'm so glad I can do this for Noah, so I press on. :) I couldn't go back to sleep though, so I'm downstairs at the computer desk at the Ronald McDonald House, updating y'all on where we are at and what's been going on...this might be long and hard to follow. Bear with me.

It's raining. Hard. Like, a big thunderstorm with thunder and lightening. Wind too, like at home. It's nice. Thankful for rain to cool things down and refresh them. Of course in Ft. Worth this might just mean lots of humidity tomorrow, no refreshment about that. haha. O well, I'm thankful anyway. The jeep needed a good power wash.

Poor Nick, the first time we have slept in the same room, much less the same bed, in about a week and I wake him up snoring, then I didn't wake up to hear my alarm going off to pump. Ugh. I feel bad. Someday, we'll be back in a routine and I won't be so bothersome at night. He's so sweet about it all though. I'm thankful for a husband who is gracious and patient with me. (with everything) Truly. He has been so amazing through this entire process. He has let me be mad, upset, confused, angry, sad, happy and excited about the smallest things. He calls me beautiful, he misses me being at home. He takes care of Ava so much and so willingly. He's so excited to have her back at home with him starting tomorrow evening. We make a team and that is what marriage is. Honoring the Lord, worshiping him, through our union. Being a team for him is the highest goal of marriage. I think we do a decent job of it. I truly believe that God has so many things in store, not only for our family of 4, but for the two of us. We have gotten to a level of depth lately, by force and by choice, that it is a comfortable settled in feeling. It feels right, it isn't always easy, but it is worth it. We sacrifice when needed and give when it's hard. We go without and we endure large loads as well. I'm thankful to be on team W and to be submitted underneath Nick in all the things God takes us through. I love being Nick's wife.

I also love being Ava's mommy. I dread tomorrow as they drive off. :( I cannot imagine the next few weeks without my silly Ava smiles, her goofy laughs, her saying "hi" to everyone in the hospital. I just cry every time I think about her not being near me. I have not been apart from Ava for longer than overnight since she was born and I am truly needing prayer to stay strong and get through tomorrow without a total breakdown. I feel like such a whimp and yet at the same time, I feel like I've become stronger than ever the last month through all we've been through, why can I not get a grip? Ava will be more than taken care of. Her daddy adores her and will take wonderful care of her each morning and night and during the day she will have wonderful care at home mon-wed with our family friend coming over to watch her and thursday-friday she will get to go play with and be taken care of by another family friend. She will be ok. She will not forget who I am. She will thrive and even grow during the next few weeks that we are apart. God loves my baby and I trust that he has her best interests in mind and she is more than a sparrow to him. She is precious and she will be ok. I have to believe that for myself as well. He loves me, he has my best interests in mind, I will be ok and taken care of and I am not abandoned. I have a lot to learn and grow through this week. I can feel it.

So, the logistics update...
Obviously nick and ava are leaving tomorrow. They are going back with Katrina and James, who came down with nick friday night. My parents are going home as well. Staci went back to N Carolina yesterday. This is our last night at the Ronald McDonald house. I feel that since I will be by myself, we should let a family who needs the space have the room we have been using and I can go back to staying with Stacey and Kevin, (nick's cousin and her husband). It is not too bad of a drive from their house to the hospital, so I think it will work fine. I can go back and forth as I please. I can stay at the hospital if I want, go to their house if I want, etc. I'm so thankful for a place to call "home". God's provision is always steady.

Noah James has had some good days lately. :) We're thankful! He is tolerating my milk well.YAY! He get 2 cc's an hour. He has been off the pacemaker since 7 am and that is great! yay! They continue to go down on certain meds. Some he still needs. He only has one drain left from having 3 post surgery to help drain fluid from his chest. He does not have a central line anymore. His picc line is still doing well in his hand and the other IV changes from foot to hand, depending on the time of day it seems. He got clean bedsheets and a bath after we left tonight. He keeps peeing and pooping well. ha. :) He opened his eyes and had a good time with his daddy tonight. They enjoyed catching up I think. He is getting better with his pacifier each day. I think that is a huge step and will help him to adapt to a bottle later. :) yay!
My concerns today were his swelling. They are pumping a lot of fluid into him by necessity. He has quite a few meds still, the regular iv fluids, fats, calories, etc. They increased his diuretics some to help get the fluid down, time just also helps that. I just ask for extra prayers in this dept because the more he de swells, the easier it will be for him to have the wound vac taken off, the vent to come out, etc. Things will just be better when he can stay less swollen. I love his cheeks, but they have been a little too chubby.

I suppose that is all for now. I might be updating again after the family leaves. Probably need an outlet for all my emotions. :( then again, I might just be crawled up with my blankee in Noah's room, soaking up the quiet and aloneness....I'll play it by ear.

Again, thank you for your love, for keeping up with us, your prayers. My how we have felt the millions of prayers being said for Noah. We are truly humbled, blessed and loved. Praise Him, for he is so good.

much love,
shaina

Time Gone By...

Yesterday marked a month that Ava and I have been gone from home. Sheesh. It seems like less than that and it also seems longer than that. I miss my bed, I miss my kitchen, I miss Ava having her own room, her own space to run around, gosh I even miss my own bathroom. I miss my United and all my people I know there (partially from working there and partially it's just my grocery store and pharmacy), I miss my CHURCH, I miss just running into people I know. Many people hate Amarillo/Canyon and get far away, and I understand that, but it is home and I miss it. I truly miss it and its flatness, its stink, the way I know where everything is, the fact that it is mine. I just miss it. I think at some point I'll actually miss some of what's down here too. A few of the nurses, such easy access to chick-fil-a (there is one in the cafeteria here), the way that I am getting sleep while I'm down here, the quiet time that I get when I sit in Noah's "room" with him for hours. I will miss that at some point when we get home. But, I can say right now that I have never missed home like I do now. All that to say....home isn't ever going to be the same, once we do get back and settled in. Not because we will have 2 children now, that is change enough, but because one of our children will forever have a heart defect. The surgeries he has and will undergo correct the heart so he can live and thrive, but he will live with the effects his entire life. He will most likely always be on some kind of heart medication, he will go to routine appts through out life for maintaining healthy heart function, he will live with different needs and different struggles. Our home life, our life in general will never be the same. But, it doesn't mean that it will be bad. Hard, yes at times. Blessed, always. I think of all the changes we will need to make in our daily life. I can't just pack the kids up and go to the store one afternoon or run to see a friend or have a play date for Ava with someone. We will be very secluded in our home for quite awhile, taking turns going to church, my time alone and out of the house will be to the grocery store most likely. haha. We will have to strictly limit visitors and the length of time they can stay over. If you want to meet Noah at all in the first year of his life, you will need a flu shot and a whooping cough vaccine. There will be constant hand washing and antibacterial gel all over the house. I've never had to check O2 saturation before, daily and to be monitoring his coloring, his overall demeanor along with O2 sats etc. blah blah blah... so overwhelming to me, when it is all laid out like this. Sheesh. How will we ever adjust and adapt? Then, I go up to see Noah, look at him, touch his head, hold his hand and realize...I don't care what it takes, he's coming home with us, we will get through whatever lies ahead for our family, we will make the adjustments necessary for him to thrive at home and we will be thankful for ALL the hardships and craziness because we have our Noah with us and we could not be more proud of him or thankful for him.

Doesn't God feel the same way about us? I know he does. He doesn't give up, he doesn't quit, he doesn't get overwhelmed at all it takes to get us to come home. He delights in us, in our struggle, in our needy-ness, he wants to do everything to make sure we are well taken care of and thriving. He deeply cares. He knows that we are completely helpless without him and that doesn't scare him away from taking us in, making us his own and never giving up on us.

I am thankful that He never gives up on us. I am grateful that we are never left alone, to figure it all out for ourselves with no direction. We don't realize the support and help we have in our savior until we actually seek it out. It never run outs, runs dry or fails us. Yet, as Christians, sometimes, a lot of the time, I feel like we don't even ASK for help from our Father. We complain, we gripe, we go tell our best friend, we worry and we waste away, while the Spirit is there waiting to cover us and help us. We HAVE to ask though. I have caught myself complaining to God, but never asking for His hand in my life. I have had such a shift in my faith the last few months(since we found out about noah's condition), but the last 2 weeks have thrown me deeper into the waters of His character and when the saying, "Deep cries out to deep" is thrown around in worship songs here and there, it has become a reality to me, because each time I don't think I can get any deeper into his Word, his love, his covering, his grace, I go another level deeper. I'm addicted. I would NEVER want my child or any others to have to go through what we are going through. Ever. It is hard, it is more than hard, it is absolutely terrifying at times, but I know that it has brought me to a level in my relationship with Christ, that I would never go back either. I truly treasure the time spent, in the Word and in prayer, in the quiet as he sits with me. I am thankful for it and I need it so much.

If there is any reason that we are going through this, it is simply for the fact that we are walking closer than ever to the Lord. That is enough of an answer for me, now. It has taken awhile, but I am coming to terms with the fact that there is not a solid black and white answer for why we were dealt this hand, but if the only reason is because it as drawn us to the Father......well, ok then Lord. Thank you. Truly thank you. As hard as it is to be thankful for this struggle and hardship....thank you Lord. I am certain that you are being glorified and honored through my son. He's yours anyway.

blessings,
shaina


p.s. an update: Noah has had some good days the last couple of days. He is making some strides in his recovery and is resting well, healing slowly and just being so sweet. He has had a couple of things taken off, like his central line and an iv. He is no longer cathed, so he gets diaper changes and they weigh the diapers. He is on the pacemaker for stability. He has an underlying rhythm but it is not as stable as they would like yet. He has gone down on some of his meds over the last few days and they are slowly tryingn to wean him off of the ventilator. all good things. all thanks to the Father, the prayers he has answered from all the people lifting Noah up and such amazing medical care. we are blessed. thank you to everyone who is praying. We will never be able to thank each of you enough. Y'all bless us daily. thank you so much!