So, just thought I'd fill you in on how we are and what we've been up to. We are good...tired but good :). Selah is staying healthy and growing...as you can see in the pictures. We weigh in at the doctor this next week but her last weigh in she was 10lbs, 12 oz. She's been having some reflux (spit up) over the past few weeks so we're trying to adjust her feeds to see if we can decrease that. I know babies spit up but I get scared because I don't want it going down her trach (airway, lungs, etc). Other than that she's good. She is a fun baby..silly like her daddy and tempermental like her mommy...can I get an Amen from those of you who truly know me :). We are in the process of trying to figure out where we might meet with Craniofacial Teams for her surgery. We are looking at Dallas, Arkansas, and Birmingham. We're just praying doors open and close where they need to and that we just see God's hand leading us in His direction.
So...according to the title of this blog I promised some information on our recent adventures. Let me start by saying that we require an additional amount of "stuff" when we venture out...seven bags I believe...her diaper bag, emergency kit bag, suction equipment bag, monitor (heart rate, oxygen), feeding pump, milk bag, and my bag with pumping equipment...plus her car seat and stroller. So, those are our "routine" items for when we decide to take an adventure out. Now onto the adventures...
When Spencer is home we now try to get errands done. I will ride in the back with her in order to keep eyes and hands on her...readily available to act...keep her from pulling on her trach, in case she spits up and needs to be suctioned, etc. So we tag-team it when he's home. We haven't had Selah out in the public, except for a doctor's appointment, until here recently. We talked to our pediatrician though and he recommended going ahead and starting to get out with her. Her first public outing was to the chinese restaurant...so mom and dad could get some sushi...thankfully that was a smooth time. Since that went well we decided to give church a try. We have missed being there and were ready to go as a family. We got ready and had her in her "Sunday best" and loaded in the car when the spit up began. She soaked her dress and required and unexpected and rushed wardrobe change...in addition to the fact that we were concerned about her being okay..so a bit of a tiring and eventful start. Then we were on the way to church when I realized I didn't have her matching head band or bib...to the newly changed dress...to which daddy said "it will be okay" but mommy knew how crucial it was to making the outfit, lol. We made it though and what a blessing it was...an answered prayer...to bring her to church...to come as a family with the precious baby we prayed for. So, those have been our two adventures with the three of us. Now...just the two of us...
Spencer is balancing a lot between the firehall, military, and tile work and he is having to be gone a lot. For the most part Selah and I have been hanging out at the house. We have some visitors and her therapists that come into the home but mostly it's the girls...plus the "boys" aka dogs. All that to say...Selah and I haven't ventured out on our own yet. I have been concerned about it because I am not in the back seat with eyes and hands on her. But, Spencer is having to be gone so much here lately and will continue to be over the next few weeks...so I recently decided to give it a try. My brave and confident spirit stems from six consecutive days without leaving the house or without having any visitiors. I prayed about it and gave myself a pep talk and to my suprise a newfound peace and confidence filled me...I also was stir crazy. :) So, Selah and I set out...not too far now...to the closest McAlister's...about 10 miles away. We made it there and back safely...thankfully. To my suprise, the only mishap is that when loading her carseat...less than gracefully...I pulled her tubing to the feeding pump under the car seat...therefore the tubing became disconnected from her g tube extension...what that all means is the milk no longer went into her g tube and into her stomach but instead through the tube and into the bottom of the car seat and onto my seats. Not only did I not give sweet Selah her feed but I also drenched Phoebe (my 4runner) with what Spencer lovingly refers to as "hooter milk"...hope that's not too crude...:). I have to say though that other than that it was a nice outing and it was refreshing...got a taste of it...so we'll see what's next. :)
Now this is just too funny that I have to share...funny now that I am looking back. A few weeks ago Spencer was gone to Jackson for a week. His mom (Donna) came down for two nights to stay...thankfully. We had a nice visit and it was uneventful. On the morning that she was going to head home though...oh me! I was getting Selah started with her seven a.m. feed when a loud bang on the front door scared me. At the same time, literally, she began projectile vomitting...streams of repeated vomit...coming out of her nose. So, I am hearing the door and at the same time trying to stop her feeding pump and running across the house to her room to get the suction equipment. I, needless to say, was terrified at the amount of vomit that was coming out and was trying to keep it from going down her trach. I must also add that the dogs are going crazy because of the knock at the door...which I still hadn't answered. I yelled for Donna and she went to the door...it was the pest man...he was going to spray outside. Now, our security system was still in alarm mode from the night before so it goes off...extremely loud. But, I am oblivious to it as I am tending to Selah..who is continuing to vomit. His mom gets the pest man taken care of and comes to assist me...it took two of us. For about and hour and half Selah vomitted...projectile and streams of it coming out of her nose...it was traumatizing for all of us...she cried and I cried but Donna was calm...thankfully. In the middle of this we hear another loud knock on the door and this time it was the sheriff. In the midst of caring for Selah I ignored my ringing phone...which was the security people from when the alarm went off. Since I didn't answer they sent out the law enforcement. So, Donna, standing in her bath robe with her bed head...but still beautiful...had to explain in a hurry so she could get back to helping me. I also need to add that the dogs, who haven't been let outside yet, are still going crazy because of another knock at the door. Donna got that taken care of and rushed back to help me. A few hours later the vomitting had calmed down along with our nerves. I talked to the doctor and we got a "plan" in motion. Selah recovered, as did I, and we survivedour first "tummy bug."
Well...not sure if that's as entertaining to you as it has been for us...:). I just wanted to share a little of what we've been up to here lately. During these recent adventures and in our moments throughout our days at home, God has reminded me to laugh...at myself, at the circumstances, at each other, and to not be so serious and intense...oh, I can get wound tight too. God's protected us along the way and I do have to say it's good to laugh and see that in all of it there are blessings....thank you for your prayers and support!
Much Love!!!
Sunday, August 14, 2011
Friday, August 12, 2011
More Pics...:)
Thursday, July 21, 2011
Change In Plans
Hi,
We've been doing good...Selah is getting bigger and staying healthy. It is time for me to post some more pics...if I can remember how. :) So, there's been a big change in plans. We had her first phase of the jaw distraction surgery scheduled for this coming Monday, July 25. The surgery has been cancelled though. We got a call from a nurse at the surgery clinic and she informed us that one of the doctors involved in the surgery is no longer employed at UMC. This doctor would have performed the surgery with one other doctor, who is still at UMC. Without them working together though the surgery isn't possible. The clinic is hoping to have another specialist join them in the fall but they aren't certain. So we are not sure what we will do from here. We are going to look at other locations with Craniofacial Surgery teams and just see what we find. We're praying for doors to open and close where they need to and for us to know God's leading in what to do.
I do have to admit that when we found out the surgery was cancelled I was relieved...for many reasons. I know that the sooner we begin the surgical process that the sooner we will move towards hopefully opening up her airway and eventually hoping to remove the trach. But...I just hate the thought of having her go through more hospital stays and the pain and risks involved. We've had good experiences with UMC and the doctors we've seen but I wasn't sure about proceeding with the surgery there. The craniofacial "team" involved in this surgery is small and hasn't performed a jaw distraction on a severe a case of Micrognathia as Selah has or on a child as young as her. I know they are competent and knowledgeable doctors but I do want them to have more experience with this procedure under their belt...specific to the severity of her case and her young age. I had been wanting to seek second opinions. I just had been praying about a peace about proceeding with the surgery and I haven't had it. I've dreaded it and the upcoming surgery date has been "looming" over me. I've just not had a good feeling...deep in the pit of my stomach. I didnt know if it was a true lack of peace or just fear of the surgery and all it entails for Selah. So, I've had faithful prayer warriors praying on our behalf too and it does seem that this door has closed...at least I believe it has. So, we are just praying and asking for God to lead us in His way. For now we are enjoying having Selah home and all the sweet moments with her. We value your prayers and support so much....thank you! Much love!!!
"And without faith it is impossible to please God because anyone that comes to him must believe that he exists and that he rewards those who earnestly seek him." Hebrews 11:6... After we found out about the surgery cancellation I tried to take some time with God. I prayed and asked him to let us see his hand at work and where he is leading. He led me to this verse and spoke to me that if we keep truly seeking him in faith and trying to obey and trust (earnestly) that he will take care of it all...he is faithful!
We've been doing good...Selah is getting bigger and staying healthy. It is time for me to post some more pics...if I can remember how. :) So, there's been a big change in plans. We had her first phase of the jaw distraction surgery scheduled for this coming Monday, July 25. The surgery has been cancelled though. We got a call from a nurse at the surgery clinic and she informed us that one of the doctors involved in the surgery is no longer employed at UMC. This doctor would have performed the surgery with one other doctor, who is still at UMC. Without them working together though the surgery isn't possible. The clinic is hoping to have another specialist join them in the fall but they aren't certain. So we are not sure what we will do from here. We are going to look at other locations with Craniofacial Surgery teams and just see what we find. We're praying for doors to open and close where they need to and for us to know God's leading in what to do.
I do have to admit that when we found out the surgery was cancelled I was relieved...for many reasons. I know that the sooner we begin the surgical process that the sooner we will move towards hopefully opening up her airway and eventually hoping to remove the trach. But...I just hate the thought of having her go through more hospital stays and the pain and risks involved. We've had good experiences with UMC and the doctors we've seen but I wasn't sure about proceeding with the surgery there. The craniofacial "team" involved in this surgery is small and hasn't performed a jaw distraction on a severe a case of Micrognathia as Selah has or on a child as young as her. I know they are competent and knowledgeable doctors but I do want them to have more experience with this procedure under their belt...specific to the severity of her case and her young age. I had been wanting to seek second opinions. I just had been praying about a peace about proceeding with the surgery and I haven't had it. I've dreaded it and the upcoming surgery date has been "looming" over me. I've just not had a good feeling...deep in the pit of my stomach. I didnt know if it was a true lack of peace or just fear of the surgery and all it entails for Selah. So, I've had faithful prayer warriors praying on our behalf too and it does seem that this door has closed...at least I believe it has. So, we are just praying and asking for God to lead us in His way. For now we are enjoying having Selah home and all the sweet moments with her. We value your prayers and support so much....thank you! Much love!!!
"And without faith it is impossible to please God because anyone that comes to him must believe that he exists and that he rewards those who earnestly seek him." Hebrews 11:6... After we found out about the surgery cancellation I tried to take some time with God. I prayed and asked him to let us see his hand at work and where he is leading. He led me to this verse and spoke to me that if we keep truly seeking him in faith and trying to obey and trust (earnestly) that he will take care of it all...he is faithful!
Tuesday, July 5, 2011
Say Cheese!!!
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| Daddy's Girl! |
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| This is the life! |
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| Selah in her Fourth of July outfit |
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| First family picture since coming home...minus the 'boys" (Stud and BB) |
Tuesday, June 21, 2011
Daily Armor...Brighter Days
"Be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take up the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occassions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints."
Ephesians 6: 10-18
This is such a powerful and practical section of scripture. It's the "Armor of God" and here lately I try to pray it over myself, Spencer, our marriage, friends, family, etc. daily. I pray it out loud, claim it out loud, and visualize it over who or what I am praying for. I've read and prayed through asking God to speak, and he has shown me the power and need for it...especially in these past few weeks.
We have been home a few weeks now...yea! As I mentioned in an earlier post, it has gotten better :). We are tired but as I understand...welcome to parenthood :). We have gotten more of a routine and that helps. Selah seems to be adjusting well and it is truly a blessing to have her here at home! There are still moments though that I wish for us to be able to get out of the house together or to be able to go and do how we used to. There are moments where I wish things were "easier" for Selah now and in the future. This is not a complaint by any means...just human nature I think...but I am truly thankful for this experience. It has been adjustment though. Due to hormones, sleep deprivation, anxiety, and more, the first week or so was pretty rough. Things have gotten a little more settled and less "intense" too...emotionally that is. My "bestie," Jill, has been fabulous at talking me through some of the emotions and feelings and has really helped in reminding me that I am "normal"...thank you friend, love you! I know that we have been covered in prayer also and we can truly say thank you and that it makes a difference. The calls, texts, meals, visits also show your support and have been a blessing...thank you!
Despite the abudance of love and support though, darkness has tried to take over, and I am sure as we journey on, will try again. What I mean by darkness is feelings of isolation, loneliness, fear, anxiety, selfishness, jealousy, sadness...despair. Now these feelings may all be justified and normal but none of them are of our Heavenly Father...especially when they're prolonged and consistent. They have been battling for my mind, heart, and spirit though...and it's a fierce battle. I can only say I have been less than pleasant to live with...just ask Spencer :). Anyway, as I have try to "deal" with all these feelings and "darkness," I continue to fail...trying to win this battle on my own is just not working. As I've taken time to seek God and listen and look for him, he has yet again led me away from "my ways and thinking" to his. He has been teaching me the importance of this "battle" and clothing myself or equipping myself with his armor, his truth, his power, his strength...making my thoughts "captive to him." He has taught me that although these feelings are normal, they are not healthy and not of him. He has led me to daily, throughout the day, pray and claim his armor over myself, my mind, my entire being. My thoughts, behavior, reactions, desires become transformed and as I have responded to his leading, a lightness has began to fill me and his joy and hope and peace have begun to fill me again...leading to brighter days. This "battle" is something he is using to teach me that I cannot combat the feelings, the circumstances, or anything else solo...only in his power and strength...suited up in his mighty armor.
Now praying the armor and visualizing during prayer may seem like a strange concept but there is power in it. Praying it out loud and claiming it out loud has power that Satan cannot defeat. It is something that I often forget, but God has been reminding me, that the treasures in my life are "worth" it...my mind, my spirit, my marriage, my family, my friends. As this has been occurring, the tension has lessened between Spencer and I, there is true joy in looking into Selah's beautiful eyes as I care for her, there is hope where things seemed so hopless, there is joy where there is sadness, there is an awareness again of the amazing blessings and support surrounding us....his Spirit is working on transforming the "dark" into "light" in me...only by me yielding to him.
...On another note...:)
Selah's jaw distraction surgery is set for July 25th. Anxious, worried, sad...are only a few of the emotions battling for my mind and thoughts when I think of this surgery and the ones to come. She is home, settled, growing, doing "good" with her trach...so why "mess" with this...going through my mind. The thought of her being in the hospital and hurting breaks my heart. But it is recommended to proceed with the procedure in hopes that it will open up her airway. So it is something I am truly trying to give to God...don't even know the words to pray about it...just silently come before him and lift her up.
We also have a "loaner" hearing aid she is wearing temporarily...yes she's rockin an aid on a soft pink headband that has "demo" on it...we're truly thankful for the opportunity to borrow it!!! :)We are not sure the extent of her hearing loss so we are not certain what hearing aid and methods will benefit her best. As she grows and further testing is done, we hope to find out more. So, for now we're letting her wear this aid and trying to see how she responds.
So that's about it for now. We still go to some doctor visits and just hang out at home...keeping her out of that "unsterile" public, lol! We are truly thankful to be home!
Thank you for your love, prayers and support!!!
Ephesians 6: 10-18
This is such a powerful and practical section of scripture. It's the "Armor of God" and here lately I try to pray it over myself, Spencer, our marriage, friends, family, etc. daily. I pray it out loud, claim it out loud, and visualize it over who or what I am praying for. I've read and prayed through asking God to speak, and he has shown me the power and need for it...especially in these past few weeks.
We have been home a few weeks now...yea! As I mentioned in an earlier post, it has gotten better :). We are tired but as I understand...welcome to parenthood :). We have gotten more of a routine and that helps. Selah seems to be adjusting well and it is truly a blessing to have her here at home! There are still moments though that I wish for us to be able to get out of the house together or to be able to go and do how we used to. There are moments where I wish things were "easier" for Selah now and in the future. This is not a complaint by any means...just human nature I think...but I am truly thankful for this experience. It has been adjustment though. Due to hormones, sleep deprivation, anxiety, and more, the first week or so was pretty rough. Things have gotten a little more settled and less "intense" too...emotionally that is. My "bestie," Jill, has been fabulous at talking me through some of the emotions and feelings and has really helped in reminding me that I am "normal"...thank you friend, love you! I know that we have been covered in prayer also and we can truly say thank you and that it makes a difference. The calls, texts, meals, visits also show your support and have been a blessing...thank you!
Despite the abudance of love and support though, darkness has tried to take over, and I am sure as we journey on, will try again. What I mean by darkness is feelings of isolation, loneliness, fear, anxiety, selfishness, jealousy, sadness...despair. Now these feelings may all be justified and normal but none of them are of our Heavenly Father...especially when they're prolonged and consistent. They have been battling for my mind, heart, and spirit though...and it's a fierce battle. I can only say I have been less than pleasant to live with...just ask Spencer :). Anyway, as I have try to "deal" with all these feelings and "darkness," I continue to fail...trying to win this battle on my own is just not working. As I've taken time to seek God and listen and look for him, he has yet again led me away from "my ways and thinking" to his. He has been teaching me the importance of this "battle" and clothing myself or equipping myself with his armor, his truth, his power, his strength...making my thoughts "captive to him." He has taught me that although these feelings are normal, they are not healthy and not of him. He has led me to daily, throughout the day, pray and claim his armor over myself, my mind, my entire being. My thoughts, behavior, reactions, desires become transformed and as I have responded to his leading, a lightness has began to fill me and his joy and hope and peace have begun to fill me again...leading to brighter days. This "battle" is something he is using to teach me that I cannot combat the feelings, the circumstances, or anything else solo...only in his power and strength...suited up in his mighty armor.
Now praying the armor and visualizing during prayer may seem like a strange concept but there is power in it. Praying it out loud and claiming it out loud has power that Satan cannot defeat. It is something that I often forget, but God has been reminding me, that the treasures in my life are "worth" it...my mind, my spirit, my marriage, my family, my friends. As this has been occurring, the tension has lessened between Spencer and I, there is true joy in looking into Selah's beautiful eyes as I care for her, there is hope where things seemed so hopless, there is joy where there is sadness, there is an awareness again of the amazing blessings and support surrounding us....his Spirit is working on transforming the "dark" into "light" in me...only by me yielding to him.
...On another note...:)
Selah's jaw distraction surgery is set for July 25th. Anxious, worried, sad...are only a few of the emotions battling for my mind and thoughts when I think of this surgery and the ones to come. She is home, settled, growing, doing "good" with her trach...so why "mess" with this...going through my mind. The thought of her being in the hospital and hurting breaks my heart. But it is recommended to proceed with the procedure in hopes that it will open up her airway. So it is something I am truly trying to give to God...don't even know the words to pray about it...just silently come before him and lift her up.
We also have a "loaner" hearing aid she is wearing temporarily...yes she's rockin an aid on a soft pink headband that has "demo" on it...we're truly thankful for the opportunity to borrow it!!! :)We are not sure the extent of her hearing loss so we are not certain what hearing aid and methods will benefit her best. As she grows and further testing is done, we hope to find out more. So, for now we're letting her wear this aid and trying to see how she responds.
So that's about it for now. We still go to some doctor visits and just hang out at home...keeping her out of that "unsterile" public, lol! We are truly thankful to be home!
Thank you for your love, prayers and support!!!
Thursday, June 2, 2011
Home Sweet Home
Hi!
We are now home in Hattiesburg...yea! We've been here going on two weeks now...I think. We are so thankful to be home. Selah seems to be adjusting to her new environment. She is still gaining weight and growing. She is doing well with her trach and g tube also. We are going to Jackson a lot for follow up doctor visits. Our days consist of caring for Selah and going to doctor appointments. She has different equipment set up here at the house that is necessary for her to have daily. Spencer has gotten creative and figured out ways to make all the euipment more "portable" so we can move it around the house with her. This has helped...to be able to leave her room. We are still trying to figure out a routine and schedule...not sure if you ever get one just right. She is sleeping pretty good. Her days and nights may be mixed up a little. We have her in our room at night set up with her equipment and we are playing around with not taking sleep "shifts." We are just trying to figure out what is safest and will work...it is nice to lie down beside Spencer at night rather than just passing by him as we take our "shift." So, we are good, just trying to take it day by day.
The first week was emotional, sleep deprived, exhausting...shall I go on :). We are feeling a little better though and things seems less "intense." We are truly thankful to have this precious baby here with us and we just have to remember that in the "moment." We've had so much support from our family and friends and we are truly thankful!
The next "step" for Selah is the jaw distraction surgery. We are looking at having this done in July. It is a hard decision...to think of putting her through more surgeries, hospital stays, etc. We are just getting her home and settled and to think of taking her right back is hard for me. But, we want to do what is best for her. The doctors recommend going ahead now, July, and proceeding with the surgery. The hopes are that it will extend her lower jaw out enough to open up her airway. If her airway is opened up enough then we can possibly look at the trach coming out (eventually) and having her breathe on "her own." If this was successful then we hope that she'd also be able to feed on "her own" and be able to have the g tube taken out. So, this first surgery is to try to accomplish that. It will be a gradual process.
She will have to have further surgeries as she grows and develops. Her jaw is underdeveloped and they say will not grow as she does. This will have to be corrected as well as if her teeth are affected. So, really this will just be addressed as she grows. For right now we are looking at trying to open up the airway.
We will also meet with the doctor about her hands and the options for that. She doesn't have a thumb on either hand. We will look at the best optons to handle this and the timeline. We are waiting on getting financial approval through Mediacaid for Disabled Child Living at Home. This program is based on the child's disability and will help pick up the financial bills/expenses that insurance doesn't cover. She has to be ruled eligible to receive it though. We have applied and are waiting to see about that. We hope and pray she will be eligible and we can go ahead in ordering her hearing aids and taking care of other needs.
So right now I think that is where we are at. We look at pictures of Selah when she was first delivered and how far she has come already. We hold her now and look at her beautiful blue eyes and are truly blessed. When the moments of uncertainty or "why" hit, I try to remember all the blessings in where we are at right now. God has been reminding me not to miss out on all the "sweet moments" along this journey. I read this morning about Abraham and his story. I concluded reading about how despite the unanswered questions and unseen pieces of the puzzle, he had faith and he was blessed. I pray that in this part of our story and Selah's that we like Abraham walk in faith and continue to cling to God's promises and hope.
"Yet he did not waver in unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised." Romans 4:20-21
We truly value your support and prayers...thank you, we love ya!!!
PS The "boys" are home...Stud and BB...and thankfully that is going well...answered prayers! :)
We are now home in Hattiesburg...yea! We've been here going on two weeks now...I think. We are so thankful to be home. Selah seems to be adjusting to her new environment. She is still gaining weight and growing. She is doing well with her trach and g tube also. We are going to Jackson a lot for follow up doctor visits. Our days consist of caring for Selah and going to doctor appointments. She has different equipment set up here at the house that is necessary for her to have daily. Spencer has gotten creative and figured out ways to make all the euipment more "portable" so we can move it around the house with her. This has helped...to be able to leave her room. We are still trying to figure out a routine and schedule...not sure if you ever get one just right. She is sleeping pretty good. Her days and nights may be mixed up a little. We have her in our room at night set up with her equipment and we are playing around with not taking sleep "shifts." We are just trying to figure out what is safest and will work...it is nice to lie down beside Spencer at night rather than just passing by him as we take our "shift." So, we are good, just trying to take it day by day.
The first week was emotional, sleep deprived, exhausting...shall I go on :). We are feeling a little better though and things seems less "intense." We are truly thankful to have this precious baby here with us and we just have to remember that in the "moment." We've had so much support from our family and friends and we are truly thankful!
The next "step" for Selah is the jaw distraction surgery. We are looking at having this done in July. It is a hard decision...to think of putting her through more surgeries, hospital stays, etc. We are just getting her home and settled and to think of taking her right back is hard for me. But, we want to do what is best for her. The doctors recommend going ahead now, July, and proceeding with the surgery. The hopes are that it will extend her lower jaw out enough to open up her airway. If her airway is opened up enough then we can possibly look at the trach coming out (eventually) and having her breathe on "her own." If this was successful then we hope that she'd also be able to feed on "her own" and be able to have the g tube taken out. So, this first surgery is to try to accomplish that. It will be a gradual process.
She will have to have further surgeries as she grows and develops. Her jaw is underdeveloped and they say will not grow as she does. This will have to be corrected as well as if her teeth are affected. So, really this will just be addressed as she grows. For right now we are looking at trying to open up the airway.
We will also meet with the doctor about her hands and the options for that. She doesn't have a thumb on either hand. We will look at the best optons to handle this and the timeline. We are waiting on getting financial approval through Mediacaid for Disabled Child Living at Home. This program is based on the child's disability and will help pick up the financial bills/expenses that insurance doesn't cover. She has to be ruled eligible to receive it though. We have applied and are waiting to see about that. We hope and pray she will be eligible and we can go ahead in ordering her hearing aids and taking care of other needs.
So right now I think that is where we are at. We look at pictures of Selah when she was first delivered and how far she has come already. We hold her now and look at her beautiful blue eyes and are truly blessed. When the moments of uncertainty or "why" hit, I try to remember all the blessings in where we are at right now. God has been reminding me not to miss out on all the "sweet moments" along this journey. I read this morning about Abraham and his story. I concluded reading about how despite the unanswered questions and unseen pieces of the puzzle, he had faith and he was blessed. I pray that in this part of our story and Selah's that we like Abraham walk in faith and continue to cling to God's promises and hope.
"Yet he did not waver in unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised." Romans 4:20-21
We truly value your support and prayers...thank you, we love ya!!!
PS The "boys" are home...Stud and BB...and thankfully that is going well...answered prayers! :)
Monday, May 2, 2011
Tired and weary...yet humbled
Hi!
We are going on week 4 in Jackson...seems like it has been much longer than that. We are truly thankful for the care Selah is receiving. We are thankful for the opportunity to stay at the Ronald McDonald house. We know we are blessed but this seems to be the point in this part of the journey where we are battling growing tired and weary. Our days are staying pretty busy. They consist of going back and forth between the RMCD house and the NICU. We are now training on providing care for Selah...her trach, g tube, general care, etc. We are talking with the team about when we may possibly go home...maybe a few weeks. We are trying to take in all the information and process all that we will need to do in order to care for Selah. At times it has been overwhelming and honestly freaked me out. She is in such a controlled and sterile environment now. the thought of taking her out of it and having it in our hands is scary. But, they are trying to give us the experience and training we need in order for us to feel comfortable. We are also trying to meet with some of the different specialist that she will need. We will meet with the doctors on Wednesday to discuss the jaw distraction surgery. We aren't sure what it will entail or the timeline really so we hope to get these answers and more at our visit on Wednesday.
Selah has still been doing pretty good. She seems to be tolerating her feeds well and is slowly gaining weight. She seems to be having less trouble with her respirations...not breathing as rapid. Unfortunately her hair is not looking to much better :(...she is still beautiful though. The ENT and audiologist did talk with us about hearing aids for her. She does appear to have a significant hearing loss in both ears...in the severe loss range. So, that is something we will follow up on...be ongoing visits. I do believe she is comforted by us when we talk to her so I know there is some hearing there. We will just see as she grows what all is going on.
So, that is what is happening as of now...I think that's all :). As I mentioned earlier, I have struggled with being a little, no a lot, tired and weary lately. We haven't been sleeping much so that doesn't help. I tend to try to take it all in and then my mind races with thoughts and questions and concerns. I also have not been taking the time to get away with God and just talk to him, pray to him, read his word...I can tell too. I picked up my devotional and Bible today and the word I read was exactly what I needed to hear and applied to exactly the situation, the thoughts, the concerns on my mind and heart. As I tried to soak it in all, the "stuff" seemed to fade away. Oh how I miss this personal and intimate time with our Heavenly Father. I tried to let it all out to him, mostly just in an unspoken plea for him to hear it all. As I tried to listen and just be, He reminded me of his word in Matthew 11:28-30...going to try to paraphrase..."Come to me all who are tired and weary and I will give you rest. Take my yoke upon you and learn from me for I am gentle and my yoke is easy and my burden is light." I read these words of truth and knew God was reminding me to not stop "coming" to him. I need this time with him...life and sustainment for the soul. He knows I am tired and he knows I am weary. He knows all the "stuff" and he wants me to keep "bringing" to him. As I did and do, his peace and hope fill me again. All the stuff that seems to be a burden are things that he wants to use...to teach me, to strengthen me, to refine me, to bless me.
I started thinking about all the things I have been so overwhelmed and worried about and he began to bring to light all of the false and unnecessary concerns related to that. I was reminded again that his hand continues to be on us and on Selah. His hand continues to be mighty to save and all powerful. His hand continues to bless and show compassion and grace. I began to realize how truly blessed we are.
In the past few weeks we've seen many families who don't have their baby anymore. These different families who have been clinging to the hope that their baby will get better or "make it" only see their precious baby's life fade away. These families watch helplessly as their precious little one's ends. We've seen it all too much and close and it is heartbreaking. Our hearts ache for these families and we just try to pray for comfort over them...I often don't even know what to pray...just a silent prayer of mercy and hope over them.
As I was reminded of this I realized that I need to be so thankful for the blessing of precious Selah...a miracle, an answer our prayers.
Thank you again for all your continued support and prayers...we are so humbled. Much love!!!
We are going on week 4 in Jackson...seems like it has been much longer than that. We are truly thankful for the care Selah is receiving. We are thankful for the opportunity to stay at the Ronald McDonald house. We know we are blessed but this seems to be the point in this part of the journey where we are battling growing tired and weary. Our days are staying pretty busy. They consist of going back and forth between the RMCD house and the NICU. We are now training on providing care for Selah...her trach, g tube, general care, etc. We are talking with the team about when we may possibly go home...maybe a few weeks. We are trying to take in all the information and process all that we will need to do in order to care for Selah. At times it has been overwhelming and honestly freaked me out. She is in such a controlled and sterile environment now. the thought of taking her out of it and having it in our hands is scary. But, they are trying to give us the experience and training we need in order for us to feel comfortable. We are also trying to meet with some of the different specialist that she will need. We will meet with the doctors on Wednesday to discuss the jaw distraction surgery. We aren't sure what it will entail or the timeline really so we hope to get these answers and more at our visit on Wednesday.
Selah has still been doing pretty good. She seems to be tolerating her feeds well and is slowly gaining weight. She seems to be having less trouble with her respirations...not breathing as rapid. Unfortunately her hair is not looking to much better :(...she is still beautiful though. The ENT and audiologist did talk with us about hearing aids for her. She does appear to have a significant hearing loss in both ears...in the severe loss range. So, that is something we will follow up on...be ongoing visits. I do believe she is comforted by us when we talk to her so I know there is some hearing there. We will just see as she grows what all is going on.
So, that is what is happening as of now...I think that's all :). As I mentioned earlier, I have struggled with being a little, no a lot, tired and weary lately. We haven't been sleeping much so that doesn't help. I tend to try to take it all in and then my mind races with thoughts and questions and concerns. I also have not been taking the time to get away with God and just talk to him, pray to him, read his word...I can tell too. I picked up my devotional and Bible today and the word I read was exactly what I needed to hear and applied to exactly the situation, the thoughts, the concerns on my mind and heart. As I tried to soak it in all, the "stuff" seemed to fade away. Oh how I miss this personal and intimate time with our Heavenly Father. I tried to let it all out to him, mostly just in an unspoken plea for him to hear it all. As I tried to listen and just be, He reminded me of his word in Matthew 11:28-30...going to try to paraphrase..."Come to me all who are tired and weary and I will give you rest. Take my yoke upon you and learn from me for I am gentle and my yoke is easy and my burden is light." I read these words of truth and knew God was reminding me to not stop "coming" to him. I need this time with him...life and sustainment for the soul. He knows I am tired and he knows I am weary. He knows all the "stuff" and he wants me to keep "bringing" to him. As I did and do, his peace and hope fill me again. All the stuff that seems to be a burden are things that he wants to use...to teach me, to strengthen me, to refine me, to bless me.
I started thinking about all the things I have been so overwhelmed and worried about and he began to bring to light all of the false and unnecessary concerns related to that. I was reminded again that his hand continues to be on us and on Selah. His hand continues to be mighty to save and all powerful. His hand continues to bless and show compassion and grace. I began to realize how truly blessed we are.
In the past few weeks we've seen many families who don't have their baby anymore. These different families who have been clinging to the hope that their baby will get better or "make it" only see their precious baby's life fade away. These families watch helplessly as their precious little one's ends. We've seen it all too much and close and it is heartbreaking. Our hearts ache for these families and we just try to pray for comfort over them...I often don't even know what to pray...just a silent prayer of mercy and hope over them.
As I was reminded of this I realized that I need to be so thankful for the blessing of precious Selah...a miracle, an answer our prayers.
Thank you again for all your continued support and prayers...we are so humbled. Much love!!!
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