So, Noah is doing pretty good. He enjoyed seeing his sister and being held by his daddy this weekend. Nick said Noah studied him for about an hour before dozing off to sleep. Those two have a lot of catching up to do.
The latest with Noah is that they are sure that he will be getting the g-button feeding tube. You can google it. Basically it is an opening where Noah can get his feedings by tube directly into his tummy. There are a lot of good things about this for Noah. Most all heart patient babies get these, there are many reasons for that. Basically heart patient babies need more support in feeding because their hearts are working so hard in general that they have a hard time digesting without having heart function drop. So, with Noah being 4 months old already and him having a large aversion to anything oral right now. The best step for him is this button. The catch is that they are trying to decide if he needs a fundoplycation or not. (google it as well) This will help him to not throw up. (Chanci Henderson, if you are reading this, I know you are an expert, so I hope you don't get offended by my lack of proper spelling or words usage) haha. I know a lot of people have had terrible times with this, but we are at a place where this must happen for Noah to go home and begin to thrive. We must trust our doctors and they are so incredible. We do know that we can begin to have a normal life for the 4 of us soon if he gets this done. We could possibly be home by the end of the month if things go ok. So, I ask you to pray for wisdom for our doctors as they do one more test tomorrow to decide on the fundoplycation. Please pray for Noah. He has had a stressful few days. This whole weekend he has been fussy and uncomfortable. There is some possible fluid build up on his right side, so he will get an xray tomorrow to check. He needed to go back up on oxygen today to help get his saturations up. He de-sats a lot when he is mad and uncomfortable, so they gave him some extra support. They got a PIV in since his other one quit working, so they can continue IV meds when needed. He got to get some stuff off his head today. All the monitors and the IV came out that was on his head. Please lift Noah up so that he can recover quickly from the gbutton surgery (final surgery until he is 3 years old we pray) and then we can make our way upstairs to begin our journey home. Truly, I am just humbled, terrified and excited all at the same time. I cannot even begin to imagine what life will be like in a matter of weeks. I just know that even with a button, we can find a new normal. Noah will be able to wear clothes again, work on tummy time, play time, he can learn to eat cereal, puree's and other soft foods, learn a sippy cup, be held as much as he wants, get constant love and attention from his sissy, the 4 of us CAN BE TOGETHER. Noah loves to watch his daddy and sissy. He will just be thrilled when we get home to see them interact and laugh. We will all be together and we will all learn together. I will update here as we know more. Lots to learn before we get home. Please pray for strength and peace of mind as we learn. Pray that Nick can get the amount of time off work to learn and bring noah home when that time comes. Pray for all the details to work out, for us to be clear minded and refreshed as we begin the next phase of this journey. Also, pray that things at home will be ironed out and worked out for our arrival. There are things that need to be done. Our home needs a good deep cleaning, we have some things that need to be sold, etc. So pray for stamina for us as we prepare. We are still weeks out from getting anywhere close to home, but my goodness the word home is just a miracle to even be saying right now. Praise God!!!! Thanks and love to all!
shaina
Monday, February 4, 2013
Friday, February 1, 2013
What An Interesting Day
My day has been (or I should say was, since it is 1:15am as I begin this blog)interesting. My mind has been constantly turning and processing. I'm not quite sure I will ever fully understand any of this journey we are on, but God is very purposeful in his timing and in his ways of communicating with me. (especially recently) I suppose I am at a place of hightened awareness of God, his character, his ever present awareness and care. Today started out like any other day. I got up, got ready, grabbed breakfast, got to the hospital, made it in time for cardiac rounds, played with Noah, visited with the nurses, got through regular rounds and even got to hold Noah for a little while before my friend Christi came up to visit. We went to lunch and got a pedicure. Such a nice outing. I am thankful for the opportunity to get out and enjoy myself with such a longtime friend and sister in Christ. Thanks, CT.
We were getting pizza at Pie Five. (a good, local place in the DFW area). We got to the check out and they ended up having a communication issue and had to re-run my card, but the guy at the register didn't tell me he cancelled the whole thing and would re-charge me for everything. sheesh. Anyway, I got frustrated inside. I had to remind myself that people make mistakes. Thanks Lord. I can always use a reminder, I am such a harsh judge sometimes. Ouch.
So, we get to the nail salon and get comfortable in our massage chairs as the nail techs are working on our pedicures....I glance across the room and spot a "country" guy (I say country because he was in a plaid long sleeved shirt, wranglers, boots, you know, looked right out of amarillo in a nice nail salon in ft worth) haha... sitting in a chair, next to a massage/pedi chair and he seemed bored. I mean, generally most guys are quite bored if they are asked to sit in a nail salon for any amount of time, much less the whole time his lady is getting a pedicure or manicure or both. Well, this particular fellow was accompanied by his mother. She was obviously aged quite a bit and you could also tell she happened to have some sort of demintia or alzheimers as well. She was aware, but distant. She needed help getting on and off the pedi chair and needed some pillow support to help sit her up enough for a manicure. She had her hair combed pretty with a little clip to pull some back out of her face. She had a pretty blouse on and seemed content. You could tell she was enjoying what appeared to be a weekly or bi-weekly trip there. I guess what struck me at first was that her son (or possibly grandson) was with her. It would seem natural for a daughter, granddaughter or sister or other female family member would bring her, but it was so sweet to see her male family member, most likely son, bring her in for some pampering. I began to think about all that mother and son or grandmother/grandson relationship must have looked like years ago.... pancakes on saturday mornings, story time at night when he was little, her being at every ball game when he was growing up, come rain or shine. The occasional girl conversation on how to look, act and smell like around a girl. :) All those things began to make me smile as I made up this life story about them, without ever knowing them or saying a word to them. The woman and I caught eyes at one point and smiled at one another, I guess even in her mental state, noticed I was staring. She was just happy and was so thankful to have her son/grandson there to take care of her and escort her. It made me think about the fact that I have a son. I have what will, I pray, grow into a lovely relationship. I am excited and thankful to have the opportunity to have a son and all that comes with it, bodily functions and all. :) haha. I also became convicted of the moments before at lunch when I would have had an attitude with the clerk, possibly in front of my boy someday. I don't want to be that mom that has to constantly apologize for my language or behavior. I know I will make mistakes and he will see that and I will have to apologize and talk things through. We will disagree and argue. We will not always get along. He will see me fail. What I pray happens is that he will see God's grace and mercy flow and he will have an example of what God's faithfulness looks like. I pray that he will respect me and care for me because he was shown those things, so that when I am too old to drive, too feeble to get in and out of my own chair, that he will find pleasure in serving me, loving me and showing me grace as he was taught. I pray that he and I can have that relationship because of God's goodness. That leads me to the last part of my interesting day...
A precious new born baby girl went to be with Jesus today. She left this earth, as a few days old, and entered into eternity in Christ's warm, loving and cozy arms. She was very sick. Her heart and lungs had many problems. I did not meet her family. They were quite busy today. Sort of a hurry up and wait kind of game. Watching her parents walk in and out of the cubicle, walk the hall, come back, go, sit awhile, talk with dr's, go walk around, come back, etc. That process felt so familiar as we had waited just a few weekends before, to see if our Noah would make it to surgery or not. I knew, just a tiny bit, of what that momma was feeling. Just a tiny bit. Nick and I had the conversations we never wanted to have or thought we would need to have. But, there I was tonight, holding my Noah. I could not let him go. I literally sat there, with him in my arms, swaddled in his blankee, for 3 hours+. I just sat, held him, caught glimpses of what was going on a few doors down with the baby girl. There were doctors in and out, a priest, family, hospital personell, etc. It was a difficult time. I just held and held my baby. I knew that I was blessed, priveleged, and ever so thankful to have my baby, all warm, pink and cozy, in my arms in that moment. I truly know that God uses moments like these in this journey we are on, to bring me back down to the realness of just how fragile life is. Oh, how I pray that I do not lose sight of the delicate life we live as we get home and get settled back in, someday. Lord, keep me aware and sensitive to these moments.
Last, there is a special lady here at Cook's who is my angel. I call her my angel because God precisely places her in my path at the EXACT times I need his touch. Truly. This woman called me when I was pregnant to schedule our tour of the hospital, appt with Dr. Tam, etc. She helped get me aquainted with the staff, the process of things, kept me informed of what I could expect, as best as she could. Throughout this 4 month journey since Noah was born, she always comes at the strangest times, to anyone looking from the outside. She would come by our room and visit occasionally and check in. See, she is a clinician for the cardiology dept and she keeps tabs on a lot of hlhs patients and everything. So, she keeps up with us for her job, but there is more to it. She is a Christian woman. She is not afraid to express that. She knows how to explain things and reassure. She is single, no children. Her work is her life. She takes care of elderly parents in between the work load and she has expressed to me, without realizing it, her longing for children, even though she will never have them. I told her she has many many children, including mine that are "hers". She is a special woman. One afternoon I was struggling with everything and with the lack of Noah's progress, I was sad and lonely. Janet showed up that afternoon. We talked, the nurse and I both asked her questions (she is an RN so she knows the ins and outs of noah's condition) but we were asking questions and I was just sceptical about a lot. She reassured me. She gave me hope. She proceeded to buy me a frappucino at the hospital's Starbucks and that was something she did not have to do. Just out of the goodness of her heart, she loved on me. She showed up again, at an odd moment the weekend we were waiting for Noah to get to surgery. She had the most convicted spirit about her, that Noah would be fine. He would come through surgery. He needed the Glenn procedure and he would do well. I have to say that I questioned her and doubted her, but she gave me the courage to fight some more, even in the weariness of it all, she gave me hope. She was Christ's hands and feet to me. She was his words spoken out loud. Then again last night. I was feeling off. Waiting for today to come, waiting to see my hubby and daughter, Noah is at a slow place with feedings/speech etc. She was here late last night, as she often is and we were able to visit. She was able to answer some more questions, reassure me that I would be capable of taking care of this boy at home, that we would have a new normal, but it would be our normal and it will be good. She is an angel. She is our precious friend and mentor. I am so thankful for her.
So, my weird day, ended up being a great day. When we walk around ready to learn, ready to recieve, ready to be aware and open to lessons and blessings. God delivers. Be ready! Be willing. You might be that Jesus to someone. You might be that angel. Just be available and obedient. God will do the rest.
Love y'all.
Shaina
We were getting pizza at Pie Five. (a good, local place in the DFW area). We got to the check out and they ended up having a communication issue and had to re-run my card, but the guy at the register didn't tell me he cancelled the whole thing and would re-charge me for everything. sheesh. Anyway, I got frustrated inside. I had to remind myself that people make mistakes. Thanks Lord. I can always use a reminder, I am such a harsh judge sometimes. Ouch.
So, we get to the nail salon and get comfortable in our massage chairs as the nail techs are working on our pedicures....I glance across the room and spot a "country" guy (I say country because he was in a plaid long sleeved shirt, wranglers, boots, you know, looked right out of amarillo in a nice nail salon in ft worth) haha... sitting in a chair, next to a massage/pedi chair and he seemed bored. I mean, generally most guys are quite bored if they are asked to sit in a nail salon for any amount of time, much less the whole time his lady is getting a pedicure or manicure or both. Well, this particular fellow was accompanied by his mother. She was obviously aged quite a bit and you could also tell she happened to have some sort of demintia or alzheimers as well. She was aware, but distant. She needed help getting on and off the pedi chair and needed some pillow support to help sit her up enough for a manicure. She had her hair combed pretty with a little clip to pull some back out of her face. She had a pretty blouse on and seemed content. You could tell she was enjoying what appeared to be a weekly or bi-weekly trip there. I guess what struck me at first was that her son (or possibly grandson) was with her. It would seem natural for a daughter, granddaughter or sister or other female family member would bring her, but it was so sweet to see her male family member, most likely son, bring her in for some pampering. I began to think about all that mother and son or grandmother/grandson relationship must have looked like years ago.... pancakes on saturday mornings, story time at night when he was little, her being at every ball game when he was growing up, come rain or shine. The occasional girl conversation on how to look, act and smell like around a girl. :) All those things began to make me smile as I made up this life story about them, without ever knowing them or saying a word to them. The woman and I caught eyes at one point and smiled at one another, I guess even in her mental state, noticed I was staring. She was just happy and was so thankful to have her son/grandson there to take care of her and escort her. It made me think about the fact that I have a son. I have what will, I pray, grow into a lovely relationship. I am excited and thankful to have the opportunity to have a son and all that comes with it, bodily functions and all. :) haha. I also became convicted of the moments before at lunch when I would have had an attitude with the clerk, possibly in front of my boy someday. I don't want to be that mom that has to constantly apologize for my language or behavior. I know I will make mistakes and he will see that and I will have to apologize and talk things through. We will disagree and argue. We will not always get along. He will see me fail. What I pray happens is that he will see God's grace and mercy flow and he will have an example of what God's faithfulness looks like. I pray that he will respect me and care for me because he was shown those things, so that when I am too old to drive, too feeble to get in and out of my own chair, that he will find pleasure in serving me, loving me and showing me grace as he was taught. I pray that he and I can have that relationship because of God's goodness. That leads me to the last part of my interesting day...
A precious new born baby girl went to be with Jesus today. She left this earth, as a few days old, and entered into eternity in Christ's warm, loving and cozy arms. She was very sick. Her heart and lungs had many problems. I did not meet her family. They were quite busy today. Sort of a hurry up and wait kind of game. Watching her parents walk in and out of the cubicle, walk the hall, come back, go, sit awhile, talk with dr's, go walk around, come back, etc. That process felt so familiar as we had waited just a few weekends before, to see if our Noah would make it to surgery or not. I knew, just a tiny bit, of what that momma was feeling. Just a tiny bit. Nick and I had the conversations we never wanted to have or thought we would need to have. But, there I was tonight, holding my Noah. I could not let him go. I literally sat there, with him in my arms, swaddled in his blankee, for 3 hours+. I just sat, held him, caught glimpses of what was going on a few doors down with the baby girl. There were doctors in and out, a priest, family, hospital personell, etc. It was a difficult time. I just held and held my baby. I knew that I was blessed, priveleged, and ever so thankful to have my baby, all warm, pink and cozy, in my arms in that moment. I truly know that God uses moments like these in this journey we are on, to bring me back down to the realness of just how fragile life is. Oh, how I pray that I do not lose sight of the delicate life we live as we get home and get settled back in, someday. Lord, keep me aware and sensitive to these moments.
Last, there is a special lady here at Cook's who is my angel. I call her my angel because God precisely places her in my path at the EXACT times I need his touch. Truly. This woman called me when I was pregnant to schedule our tour of the hospital, appt with Dr. Tam, etc. She helped get me aquainted with the staff, the process of things, kept me informed of what I could expect, as best as she could. Throughout this 4 month journey since Noah was born, she always comes at the strangest times, to anyone looking from the outside. She would come by our room and visit occasionally and check in. See, she is a clinician for the cardiology dept and she keeps tabs on a lot of hlhs patients and everything. So, she keeps up with us for her job, but there is more to it. She is a Christian woman. She is not afraid to express that. She knows how to explain things and reassure. She is single, no children. Her work is her life. She takes care of elderly parents in between the work load and she has expressed to me, without realizing it, her longing for children, even though she will never have them. I told her she has many many children, including mine that are "hers". She is a special woman. One afternoon I was struggling with everything and with the lack of Noah's progress, I was sad and lonely. Janet showed up that afternoon. We talked, the nurse and I both asked her questions (she is an RN so she knows the ins and outs of noah's condition) but we were asking questions and I was just sceptical about a lot. She reassured me. She gave me hope. She proceeded to buy me a frappucino at the hospital's Starbucks and that was something she did not have to do. Just out of the goodness of her heart, she loved on me. She showed up again, at an odd moment the weekend we were waiting for Noah to get to surgery. She had the most convicted spirit about her, that Noah would be fine. He would come through surgery. He needed the Glenn procedure and he would do well. I have to say that I questioned her and doubted her, but she gave me the courage to fight some more, even in the weariness of it all, she gave me hope. She was Christ's hands and feet to me. She was his words spoken out loud. Then again last night. I was feeling off. Waiting for today to come, waiting to see my hubby and daughter, Noah is at a slow place with feedings/speech etc. She was here late last night, as she often is and we were able to visit. She was able to answer some more questions, reassure me that I would be capable of taking care of this boy at home, that we would have a new normal, but it would be our normal and it will be good. She is an angel. She is our precious friend and mentor. I am so thankful for her.
So, my weird day, ended up being a great day. When we walk around ready to learn, ready to recieve, ready to be aware and open to lessons and blessings. God delivers. Be ready! Be willing. You might be that Jesus to someone. You might be that angel. Just be available and obedient. God will do the rest.
Love y'all.
Shaina
Tuesday, January 29, 2013
4 Months of Noah....
I want to let you know that some of these pictures I have not posted online because there are some private things on here, but now that we have gotten through these parts of the journey, I feel that we can share with you, prayer warriors, some of Noah's milestones. You'll notice I put some of his pictures with his scar, also known in the cardiac world as his "zipper". This was very private to us at first and now it is his symbol of life and God's constant hand on him. Please know that we appreciate your prayers for Noah and us. We could not and cannot continue down this path without your prayers. Love to all! Enjoy!
Shaina
Birthday and day after!
post norwood surgery
post pacemaker surgery
no more ventilator!
headed to the nicu!
first smiles for mimi!
First real outfit
First bottle
First Christmas
My hero!
Smiles for mommy!
Talkin to sister on the phone
Go Cowboys!
sweet snuggles
tummy time and bouncy fun
grins!
Family time
Sister love
post Glenn surgery
Starting to feel better each day!
Thank you all for your support and love! Someday each of you will meet Noah and he will know just a tiny bit of how much he is truly loved.
Thanks!
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