We saw Caroline's pulmonologist today and received the official diagnosis. NeHi. No, not a soda drink. Neuroendecrine hyperplasia of infancy. Today I feel at rest with a diagnosis. We are so grateful that this lung disease is treatable with oxygen support and she should outgrow it by the age of 5. Caroline has a little cough today so she had a chest x ray and we are doing a two night oxygen/heart rate study for the next two nights since Caroline's heart rate monitor has been going off during the night. We will also repeat her sleep study next month to determine if her night time oxygen requirement has changed any since July.
A family friend lost his son right after birth on Saturday and our hearts grieve for their family. I will never forget the fear I felt when I told Jay on July 5 that I felt like Caroline was slipping away or the aching my heart felt when I surrendered Caroline's life to the Father in remembrance of Abraham's desire to love God even more than his own son. Still, I have such great joy and delight in seeing Caroline smile, roll over, and giggle every day. I wish I had words to comfort our friends who have lost their sweet boy. All I know is God's grace really is sufficient. I know they will have the deep privilege to experience this.
Last week before we received Caroline's final diagnosis, I wrote this but never had the chance to publish the post. I pray this encourages you or someone you know to trust in the giver of such grace that we have experienced as more than sufficient. And in that, I too will boast. (2 Cor. 12:9).
(From Wed., Sept. 5)
I don't like not knowing what is going on. I don't like feeling out of control. I don't like feeling anxious. I don't like uncertainty. I don't like wondering if maybe they found something else and it's not such a good prognosis. And then I am reminded of a friend's statement before he took his family to Africa to serve as missionaries, "Lord, help my unbelief."
Many years ago I sat on the front row in a Prison Epistles class taught by a really good looking young professor and yes, I got an A in the class. This professor equated anxiety to sin stating that Jesus explicitly tells us, "do not be anxious about anything," (Matt. 6) and yet, our wandering hearts resort to such anxiety as the first response to anything out of our control. I still fight this professor regarding the sin definition but I do think my anxiety reflects the condition of my heart. It's not just anxiety, it's unbelief.
Jesus explicitly tells us to not be anxious but to believe instead. To believe in what? To believe that everything is going to be ok? To believe the test results will change, the marriage will magically look like the Brady's, the wandering child will return and apologize for the hurt he's caused, or the desire for just one more smoke will cease? Or maybe it's to believe like the little engine that could, "I think I can, I think I can" and receive the results we want. I don't think Jesus is asking us to believe in such things we can see, but instead he is asking us to believe in the things unseen and to believe in Him, the great I Am. (Heb. 11).
So, today, I take my anxiety, unbelief, and sin (if you will), to the great I Am. I don't get it, I don't understand, and oh how I want some definite answers, but I declare that I do believe in Jesus Christ, the Maker of the Universe in whom we live and move and have our being who being fully God, came to Earth as a lowly being and surrendered Himself to the cross for my unbelief, for my anxiety so that on the third day He could rise overcoming fear, anxiety, and even death. We put our hope and our belief not in circumstantial change, but in the One who is so much bigger than our circumstances. Jesus, help my unbelief! Thank you that there is no magic quantity of faith you require and that Your will is not changed based on what I can muster up. I place my trust in You, God of heaven and Earth who was and is and is to come. To You be all glory in my life and in the life of our family.
P.S. The professor is my husband so it's ok I called him good looking.
Thursday, September 6, 2012
Tuesday, August 28, 2012
Home Sweet Home & Preliminary Results
Although Caroline was released by the surgeon 23 hours after her surgery, we ended up staying another 2 nights. Caroline wasn't eating well and had a lot of congestion. We found out on Saturday afternoon that the blood panels from the biopsy showed that she had rhinovirus, a cold. This explained her congestion and lack of appetite. Caroline received IV fluids for another 12 hours and then she began eating well again. We were released Sunday afternoon to come home.
Caroline is still tender around her incision sites but overall she is doing very well. She gave her grandad (Jimmy) her cold, but she is recovering from that pretty well too. We are thankful that she has not developed a fever and the cold has not really worsened her existing condition.
The pulmonologist called today with the preliminary pathology reports. Because the pathologist is not a lung pathologist and interstitial lung diseases, especially those we are looking at, are so rare, he does not feel comfortable making a certain diagnosis. He told our pulmonologist that it does look like NeHI to him (there are too many neuroendecrine cells in the interstitium, the pathway from the air sacs to the red blood cells) based on the control he has. He does not have an exact age match to compare her lung with so he is sending the slides to the expert pathologist in Denver to make the final call. In short, it looks like NeHI, and nothing else, but she won't have the official diagnosis (or not) until later this week.
There are only 500 current cases of NeHI worldwide. In all the cases diagnosed so far, no treatment for the rapid breathing symptoms has proven helpful. Oxygen support is required variably for each case but they all "outgrow" the symptoms by age 5. This disease was just characterized and named in 2005 so long term effects are not fully known, but current case studies show zero long term effects.
All in all, we feel relieved. If the expert pathologist confirms that Caroline does have NeHI, we can rest assured knowing what is going on and that she will out grow it. We will have to be diligent to not let Caroline get sick but she will be eligible for RSV vaccinations in addition to the normal immunizations.
We are still on a journey with God and grateful to be through this part of the wilderness. We know for certain God has taught us so much through this and we are different because of His work and His goodness. We are truly blessed that the disease Caroline seems to have really is manageable and all talks including words and phrases like, "progressive," "life expectancy," and "lung transplant" are now off the table. We are fully aware that many of the families we met at the hospital and through other blogs cannot say this. We do not pretend to have words for them, but instead we commit to pray for them. We know God has the whole world in His hands, even the little bitty babies.
We sing this song with new meaning:
Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Is Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Copyright Matt Redman, lyrics to "Never Once"
Thursday, August 23, 2012
Biopsy Complete
The biopsy and bronchoscopy went well. It took about 2 hours, a little longer than normal because they struggled to get an IV started and had to put it in her femoral (?) artery (inside of her upper thigh). The surgeon went 2 cm deep into her right lung and clipped 2 pieces. He also flushed her lungs with saline and drained them to send that fluid for testing. Caroline resumed breathing on her own after the procedure and did not need to go to ICU. She has a drain tube that will be in for a day or two and her IV Is still in. She is on pain medication and has been eating well. She is obviously uncomfortable but she is sleeping a lot allowing the pain medication to help her recover.
The surgeon said Caroline's lungs and airways look anatomically/architecturally right (as we expected). The test results will trickle in Monday and through the week. If we do not get a diagnosis, we will at least rule out many possibilities and move forward with the steroid trial.
My mom (Kay) and Cyndi King, the Preschool Minister from Matthew Road Baptist Church where Jett attends preschool, stayed with us today, the Addisons visited and the Grimes provided us with dinner. We know many more were praying for Caroline and we are so appreciative. Caroline is doing very well and We hope to be home by Monday. Our friends, the Gandy's, welcomed their baby boy into our world today. They have joined many of us on this parenthood journey. A journey with a lot of joy, laughter, tears, frustration, anxiety, and more. Along this journey we are reminded that God too is a parent who loves His children madly. Just as He gave His son for His glory, we are encouraged to do the same. To love our kids madly, but to seek God's glory above all. Jesus, give us grace to do this, to learn to love YOU and seek your glory first.
The surgeon said Caroline's lungs and airways look anatomically/architecturally right (as we expected). The test results will trickle in Monday and through the week. If we do not get a diagnosis, we will at least rule out many possibilities and move forward with the steroid trial.
My mom (Kay) and Cyndi King, the Preschool Minister from Matthew Road Baptist Church where Jett attends preschool, stayed with us today, the Addisons visited and the Grimes provided us with dinner. We know many more were praying for Caroline and we are so appreciative. Caroline is doing very well and We hope to be home by Monday. Our friends, the Gandy's, welcomed their baby boy into our world today. They have joined many of us on this parenthood journey. A journey with a lot of joy, laughter, tears, frustration, anxiety, and more. Along this journey we are reminded that God too is a parent who loves His children madly. Just as He gave His son for His glory, we are encouraged to do the same. To love our kids madly, but to seek God's glory above all. Jesus, give us grace to do this, to learn to love YOU and seek your glory first.
Biopsy Complete
The biopsy and bronchoscopy went well. It took about 2 hours, a little longer than normal because they struggled to get an IV started and had to put it in her femoral (?) artery (inside of her upper thigh). The surgeon went 2 cm deep into her right lung and clipped 2 pieces. He also flushed her lungs with saline and drained them to send that fluid for testing. Caroline resumed breathing on her own after the procedure and did not need to go to ICU. She has a drain tube that will be in for a day or two and her IV Is still in. She is on pain medication and has been eating well. She is obviously uncomfortable but she is sleeping a lot allowing the pain medication to help her recover.
The surgeon said Caroline's lungs and airways look anatomically/architecturally right (as we expected). The test results will trickle in Monday and through the week. If we do not get a diagnosis, we will at least rule out many possibilities and move forward with the steroid trial.
My mom (Kay) and Cyndi King, the Preschool Minister from Matthew Road Baptist Church where Jett attends preschool, stayed with us today, the Addisons visited and the Grimes provided us with dinner. We know many more were praying for Caroline and we are so appreciative. Caroline is doing very well and We hope to be home by Monday. Our friends, the Gandy's, welcomed their baby boy into our world today. They have joined many of us on this parenthood journey. A journey with a lot of joy, laughter, tears, frustration, anxiety, and more. Along this journey we are reminded that God too is a parent who loves His children madly. Just as He gave His son for His glory, we are encouraged to do the same. To love our kids madly, but to seek God's glory above all. Jesus, give us grace to do this, to learn to love YOU and seek your glory first.
The surgeon said Caroline's lungs and airways look anatomically/architecturally right (as we expected). The test results will trickle in Monday and through the week. If we do not get a diagnosis, we will at least rule out many possibilities and move forward with the steroid trial.
My mom (Kay) and Cyndi King, the Preschool Minister from Matthew Road Baptist Church where Jett attends preschool, stayed with us today, the Addisons visited and the Grimes provided us with dinner. We know many more were praying for Caroline and we are so appreciative. Caroline is doing very well and We hope to be home by Monday. Our friends, the Gandy's, welcomed their baby boy into our world today. They have joined many of us on this parenthood journey. A journey with a lot of joy, laughter, tears, frustration, anxiety, and more. Along this journey we are reminded that God too is a parent who loves His children madly. Just as He gave His son for His glory, we are encouraged to do the same. To love our kids madly, but to seek God's glory above all. Jesus, give us grace to do this, to learn to love YOU and seek your glory first.
Wednesday, August 22, 2012
Biopsy scheduled
Tomorrow morning Caroline will have a lung biopsy. We check in at 9:45am and the procedure will be around 11. We have read it takes 30-60 minutes. Caroline will probably go to the ICU for precaution and then will be back on the pulmonary floor for 3-5 days. The pulmonologist has told us we may not get any answers and that is because the medical field is just naive to these types of newly characterized/named lung diseases. If the lung biopsy does not provide us with a clear diagnosis, the pulmonologist will begin a trial of steroid treatments.
We are praying Caroline handles the anesthesia well and that her pain be very minimal and controlled well. We pray the surgeon (Dr. Mendelson) gets exactly what is needed. We pray for Caroline to feel comforted by her Maker when she's away from us and in the care of others. We pray she knows she is loved and that we can care for her well during her recovery. We do pray for a diagnosis as well, something to provide us with direction and knowledge for her future. Nonetheless, we know Jesus holds Caroline's future if we understand and can predict it or not. We also pray for Jett, that he would also be comforted when he fears mommy and daddy being away for a long time. We pray God protects his mind and his heart. We pray for each physician, nurse, tech, and housekeeper who will care for us over the next few days. We pray they will see Jesus in us and in Caroline's bright eyes.
Thank you for praying for us!
We are praying Caroline handles the anesthesia well and that her pain be very minimal and controlled well. We pray the surgeon (Dr. Mendelson) gets exactly what is needed. We pray for Caroline to feel comforted by her Maker when she's away from us and in the care of others. We pray she knows she is loved and that we can care for her well during her recovery. We do pray for a diagnosis as well, something to provide us with direction and knowledge for her future. Nonetheless, we know Jesus holds Caroline's future if we understand and can predict it or not. We also pray for Jett, that he would also be comforted when he fears mommy and daddy being away for a long time. We pray God protects his mind and his heart. We pray for each physician, nurse, tech, and housekeeper who will care for us over the next few days. We pray they will see Jesus in us and in Caroline's bright eyes.
Thank you for praying for us!
Friday, August 17, 2012
Pulmonology Appointment
What a joy this week has been! Caroline is so full of joy and she has started squeeling so loud you could probably hear it a block away. Her little personality is shining through a little more each day and it is strong, silly, sweet, and pretty much heart melting. Jett has also had a great week enjoying time with mommy and baby sister. He takes great care of Caroline, always wanting her to wake up to see what he is doing.
Today we visited Dr. Rivera, Caroline's pulmonologist at Children's. It only took Jay making many phone calls to physicians, nurses, and hospital administration to get us in on priority. :-). Dr. Rivera recommended we move forward with a lung biopsy to hopefully determine a diagnosis or at least continue ruling out diseases. She will personally call us Monday afternoon with the date and time she schedules with the surgeon. She will be in the operating room with Caroline and will perform a bronchoscopy before the biopsy is performed and if she sees something that could possibly be causing Caroline's issues, she will immediately call off the biopsy.
Upon exam today, Caroline appeared to be getting better. Her respiratory rate was only 58 and when Dr.Rivera first saw Caroline on July 26 it was 108. I explained to Dr. Rivera how Caroline has periods of time when she does so well and then a few hours later she almost appears manic. Her chest caves in almost an inch deep on the sides revealing her tiny little ribs and she breathes 90-95 times per minute. When Dr. Rivera listened to Caroline's lungs, her comment was, "she is very loud.". Not only is Caroline's breathing audibly loud, it is also loud inside her chest. She is our little "song of happiness" (like her name's meaning) inside and out.
I don't know exactly what Dr. Rivera is looking for on the biopsy and I prefer it that way. I trust her greatly and if I knew more details, I would be tempted to google all the outcomes. If I did that, well....that just wouldn't help my anxiety level.
The biopsy is not a benign procedure. In fact, I have been fearing this for over a month now. Caroline is not in any pain right now. Discomfort, yes, but she really doesn't know any different. After she wakes from anesthesia from the biopsy, she will be in pain. They will give her pain medication and will keep a chest tube in to drain the biopsied area of fluid. I am avoiding the thoughts about seeing Caroline experience pain. I am trying to just trust the Lord to carry me as he carries her because this will be the hardest thing we've experienced so far.
Still we are grateful knowing Caroline is good hands. Not ours, not the doctors', But Jesus', the Great Physician. We pray for the many families who experience childhood conditions, sicknesses, and diseases with their children. We are thankful that from what we know we are looking at treatable diseases. We know many families do not have that assurance and somehow they too have to learn and trust God's goodness. Would you join us in prayer for the moms, dads, grandparents, friends, and families of the children around the world who are also asking God for their child's healing? Would you join us in gratitude for the eternity our Lord Jesus Christ is planning for us where all is made new and whole and every tear is wiped away? If you don't know our Lord, would you invite Him to show Himself to You? He is faithful and His greatest desire is for you to experience Him.
Today we visited Dr. Rivera, Caroline's pulmonologist at Children's. It only took Jay making many phone calls to physicians, nurses, and hospital administration to get us in on priority. :-). Dr. Rivera recommended we move forward with a lung biopsy to hopefully determine a diagnosis or at least continue ruling out diseases. She will personally call us Monday afternoon with the date and time she schedules with the surgeon. She will be in the operating room with Caroline and will perform a bronchoscopy before the biopsy is performed and if she sees something that could possibly be causing Caroline's issues, she will immediately call off the biopsy.
Upon exam today, Caroline appeared to be getting better. Her respiratory rate was only 58 and when Dr.Rivera first saw Caroline on July 26 it was 108. I explained to Dr. Rivera how Caroline has periods of time when she does so well and then a few hours later she almost appears manic. Her chest caves in almost an inch deep on the sides revealing her tiny little ribs and she breathes 90-95 times per minute. When Dr. Rivera listened to Caroline's lungs, her comment was, "she is very loud.". Not only is Caroline's breathing audibly loud, it is also loud inside her chest. She is our little "song of happiness" (like her name's meaning) inside and out.
I don't know exactly what Dr. Rivera is looking for on the biopsy and I prefer it that way. I trust her greatly and if I knew more details, I would be tempted to google all the outcomes. If I did that, well....that just wouldn't help my anxiety level.
The biopsy is not a benign procedure. In fact, I have been fearing this for over a month now. Caroline is not in any pain right now. Discomfort, yes, but she really doesn't know any different. After she wakes from anesthesia from the biopsy, she will be in pain. They will give her pain medication and will keep a chest tube in to drain the biopsied area of fluid. I am avoiding the thoughts about seeing Caroline experience pain. I am trying to just trust the Lord to carry me as he carries her because this will be the hardest thing we've experienced so far.
Still we are grateful knowing Caroline is good hands. Not ours, not the doctors', But Jesus', the Great Physician. We pray for the many families who experience childhood conditions, sicknesses, and diseases with their children. We are thankful that from what we know we are looking at treatable diseases. We know many families do not have that assurance and somehow they too have to learn and trust God's goodness. Would you join us in prayer for the moms, dads, grandparents, friends, and families of the children around the world who are also asking God for their child's healing? Would you join us in gratitude for the eternity our Lord Jesus Christ is planning for us where all is made new and whole and every tear is wiped away? If you don't know our Lord, would you invite Him to show Himself to You? He is faithful and His greatest desire is for you to experience Him.
Wednesday, August 15, 2012
Happy at Home
We are very grateful to STILL be at home! Caroline has been doing very well at home with the oxygen support while eating and sleeping and has not had any new or worsening symptoms. She had her four month well check yesterday with her primary pediatrician and despite everything going on, Caroline is growing and developing perfectly. She is in the 50th percentile for her weight (where she's been since she was born) and the 70th percentile for her height. She has not missed any major milestones even though developmental delays would be considered normal for her. We are very grateful and continue to pray for her absolute healing.
On Monday morning Jett said, "Mommy I'm happy." I said, "great! Why?" He replied, "because we are all home together now." That pretty much says it all for us.
We are still waiting to get an appointment with our pulmonologist to develop a diagnostic and treatment plan from here. Although we are anxious to get answers, we are cherishing every day here at home knowing we could be back in for procedures at any moment. Thank you for continuing to pray for us!
A couple of weeks ago Jett said he wanted to talk about Caroline. We talked about how God made our bodies and how we breathe automatically without even thinking about it. I told him that Caroline's lungs are hurt and she has to work harder than us to breathe. I told him the doctors are so nice and are working very hard to help Caroline. Then I said, "but you know who is even smarter than the doctors?" And Jett replied, "Jesus!" I said, "that's right! That's because..." Well, I was going to say, "because Jesus was there when Caroline was made...;" however, Jett interrupted and said, "because Jesus is alive!"
As I walked down the stairs thinking about our conversation, I began thinking about the fact that Jesus is Alive and that fact being the center of our hope. The words to the old hymn, "Because He lives" came to my mind. I couldn't remember the lyrics to the full song, so I looked them up. See the lyrics below (especially verse 2).
On Monday morning Jett said, "Mommy I'm happy." I said, "great! Why?" He replied, "because we are all home together now." That pretty much says it all for us.
We are still waiting to get an appointment with our pulmonologist to develop a diagnostic and treatment plan from here. Although we are anxious to get answers, we are cherishing every day here at home knowing we could be back in for procedures at any moment. Thank you for continuing to pray for us!
A couple of weeks ago Jett said he wanted to talk about Caroline. We talked about how God made our bodies and how we breathe automatically without even thinking about it. I told him that Caroline's lungs are hurt and she has to work harder than us to breathe. I told him the doctors are so nice and are working very hard to help Caroline. Then I said, "but you know who is even smarter than the doctors?" And Jett replied, "Jesus!" I said, "that's right! That's because..." Well, I was going to say, "because Jesus was there when Caroline was made...;" however, Jett interrupted and said, "because Jesus is alive!"
As I walked down the stairs thinking about our conversation, I began thinking about the fact that Jesus is Alive and that fact being the center of our hope. The words to the old hymn, "Because He lives" came to my mind. I couldn't remember the lyrics to the full song, so I looked them up. See the lyrics below (especially verse 2).
God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
And then one day I'll cross the river,
I'll fight life's final war with pain.
And then as death gives way to victory,
I'll see the lights of glory and I'll know He lives.
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
And then one day I'll cross the river,
I'll fight life's final war with pain.
And then as death gives way to victory,
I'll see the lights of glory and I'll know He lives.
When I read the lyrics, I began to cry with joy at God's great provision for me. We don't sing this song at church and I really didn't grow up singing it either, but God brought it to my mind, directed me to look up the lyrics, and spoke to me so pointedly. God is so good.
Jesus, thank you for the sweetness there is in holding our newborn baby. Thank you for the calm assurance we can have that all of us, including Caroline, can face uncertain days because You live. Because YOU live, we can face tomorrow. Because YOU live, all our fear is gone. Because we know YOU hold our future, this life is worth the living, all because YOU live.
Saturday, August 11, 2012
Going home, Round 2
We heard back from Denver! Dr. Gelfand, our pulmonologist from this week, read Dr. Deterding's email response to me this morning. (Dr. Deterding is the nation's expert on NeHi in Denver). She reviewed Caroline's CT scan and general history and said it is "atypical" for NeHi and requested more information to help the doctors here. So, it still could be NeHi, but it could be something else too. Caroline's diagnosis today is "chronic interstitial lung disease." Dr. Gelfand suggested we go home for the weekend and see Dr. Rivera, our first pulmonologist here who is the lead on these types of childhood lung diseases, as soon as she returns from her cruise. :-) Dr. Gelfand also gave us exact directions for talking to him directly if we have any problems getting to Dr. Rivera or if Caroline gets worse at home.
For three days Caroline has only required oxygen while sleeping and eating. She still works hard to breathe as seen in her labored and rapid breathing when she's awake. She's not better, but she is stable and we feel confident caring for and monitoring her at home.
We are very excited about being home all together even if it is just for the weekend or week. She will most likely have a bronchoscopy next so this is not our last hospital stay. We have made many friends and recommend this hospital 100%. We are grateful for the care we have received and all of the support our friends and family have provided as well. We know beyond a doubt that Jesus has sustained us and will continue to do so. Thank you from the very bottoms of our hearts for praying for our family. We have felt great peace and comfort and Jett has been a rock star through it all too. He tells us that Jesus makes Him brave and oh how we see it and believe it.
We still have a long road ahead but we know who is leading us and trust Him. I read earlier this week that "understanding will never bring us peace." Peace comes from our right standing with God and leaning NOT on our own understanding. Jesus is the prince of peace because He sets us right with the Father. I think we seek an emotional peace to make us feel better but I don't know that it what we should be seeking. I think we should be seeking the Prince of Peace, Jesus Himself, and then trusting Him, leaning not on our own understanding, and then letting Him direct our path.
Jesus, give us Your perspective. Show us how to love You and Your people more. Keep us aching for eternity with You where all things are made new and whole. Thank you for setting us right with the Father and for being Prince of Peace and Emmanuel, God with us.
We will continue updating this blog even though we are home. Thank you for your continued prayer support!
For three days Caroline has only required oxygen while sleeping and eating. She still works hard to breathe as seen in her labored and rapid breathing when she's awake. She's not better, but she is stable and we feel confident caring for and monitoring her at home.
We are very excited about being home all together even if it is just for the weekend or week. She will most likely have a bronchoscopy next so this is not our last hospital stay. We have made many friends and recommend this hospital 100%. We are grateful for the care we have received and all of the support our friends and family have provided as well. We know beyond a doubt that Jesus has sustained us and will continue to do so. Thank you from the very bottoms of our hearts for praying for our family. We have felt great peace and comfort and Jett has been a rock star through it all too. He tells us that Jesus makes Him brave and oh how we see it and believe it.
We still have a long road ahead but we know who is leading us and trust Him. I read earlier this week that "understanding will never bring us peace." Peace comes from our right standing with God and leaning NOT on our own understanding. Jesus is the prince of peace because He sets us right with the Father. I think we seek an emotional peace to make us feel better but I don't know that it what we should be seeking. I think we should be seeking the Prince of Peace, Jesus Himself, and then trusting Him, leaning not on our own understanding, and then letting Him direct our path.
Jesus, give us Your perspective. Show us how to love You and Your people more. Keep us aching for eternity with You where all things are made new and whole. Thank you for setting us right with the Father and for being Prince of Peace and Emmanuel, God with us.
We will continue updating this blog even though we are home. Thank you for your continued prayer support!
Thursday, August 9, 2012
Beginning Week 3
Today we feel like we are making a little progress, a little backwards but we still consider it progress. We have been waiting patiently to have an expert in Denver review Caroline's case and CT scan. We found out this morning that the CT scan was never actually received in Denver. We were told it was sent two weeks ago, but the important thing is the CT scan was re-sent this morning.
The doctor this morning asked me why I was so nice and wasn't mad at everyone for not knowing how to make Caroline better. I told him I figured being mad wouldn't make anything better and we are actually very grateful. Caroline is getting better and re-sending the CT scan means progress. The doctor thanked me for our gratitude and patience and promised me he is doing everthing he can for our baby who is a rare case of an already rare group of diseases.
We know that every day is a gift from God. We also know that we have been asking God to direct our paths as we trust in Him. We even prayed that in our wedding vows. We know God has directed our path here. We have been able to get Caroline back to the same level of support we were originally giving her at home and we have had many spiritual conversations with nurses and doctors. We hear Jesus' heart now,
"Steep your life in God- reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met. Give your entire attention to what God is doing RIGHT NOW, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:31-34, The Message.
So we wait patiently again uncertain of what this expert will say. If she says it's clear to her Caroline has NeHi, we go home almost immediately back on oxygen and focusing on keeping her well. If the expert cannot make a diagnosis, we move forward with more diagnostic procedures.
Many have asked how they can pray for us:
1. Pray for Caroline's healing. We are totally good with her waking up from a nap completely healed and we know God is able! We also trust God to use the physicians here (& in Denver!) to determine a diagnosis and provide her with the best treatment that allows her to breathe comfortably, stay well, and keep growing.
2. Pray for Us, Jay & Brittany - I (Brittany) have been very blessed with several opportunities to go home or spend time doing other things with Jay and Jett; however, my heart aches in a way I've never experienced before when I have to leave Caroline. That same heart ache happens when I have to say goodbye to Jett. I know God's grace is made perfect in our weakness and always saying goodbye to one of my babies is my biggest weakness right now. Pray for Jay as he continues to lead our family in two different locations. What an amazing man he is serving his wife, son, and daughter. Our family is tremendously blessed to call Jay Harley husband and daddy. Pray for his continued strength and wisdom as we all depend on His strength right now.
3. Pray for Jett - Pray that God would guard His mind and heart as his little world has been rocked. I know God is allowing my sweet baby boy to experience His nearness during this time when mommy and daddy are away. If you know Jett, you know he is a creature of routine and expectation. What a lesson in trusting God our little 3 year old is learning! Pray God protects Him and teaches him how CONSTANT, FAITHFUL, and CONSISTENT HE IS amidst our ever changing lives and circumstances. Pray Jett feels loved and safe.
4. Pray for Jane, Jett & Caroline's "JJ" - Jane was here for hospitalization one and has been here for almost the entire two weeks we have been here this time. She has provided for and loved Jett so well. Pray she feels near to the heart of God as she so unselfishly serves her son and our family. Pray that God would bless her and Jimmy (Jett & Caroline's "didi").
5. Pray for our family, friends, doctors, and nurses - Pray that the light of Jesus would shine so brightly that He would be magnified and we would be made less. Pray that He would be made famous.
The doctor this morning asked me why I was so nice and wasn't mad at everyone for not knowing how to make Caroline better. I told him I figured being mad wouldn't make anything better and we are actually very grateful. Caroline is getting better and re-sending the CT scan means progress. The doctor thanked me for our gratitude and patience and promised me he is doing everthing he can for our baby who is a rare case of an already rare group of diseases.
We know that every day is a gift from God. We also know that we have been asking God to direct our paths as we trust in Him. We even prayed that in our wedding vows. We know God has directed our path here. We have been able to get Caroline back to the same level of support we were originally giving her at home and we have had many spiritual conversations with nurses and doctors. We hear Jesus' heart now,
"Steep your life in God- reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met. Give your entire attention to what God is doing RIGHT NOW, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:31-34, The Message.
So we wait patiently again uncertain of what this expert will say. If she says it's clear to her Caroline has NeHi, we go home almost immediately back on oxygen and focusing on keeping her well. If the expert cannot make a diagnosis, we move forward with more diagnostic procedures.
Many have asked how they can pray for us:
1. Pray for Caroline's healing. We are totally good with her waking up from a nap completely healed and we know God is able! We also trust God to use the physicians here (& in Denver!) to determine a diagnosis and provide her with the best treatment that allows her to breathe comfortably, stay well, and keep growing.
2. Pray for Us, Jay & Brittany - I (Brittany) have been very blessed with several opportunities to go home or spend time doing other things with Jay and Jett; however, my heart aches in a way I've never experienced before when I have to leave Caroline. That same heart ache happens when I have to say goodbye to Jett. I know God's grace is made perfect in our weakness and always saying goodbye to one of my babies is my biggest weakness right now. Pray for Jay as he continues to lead our family in two different locations. What an amazing man he is serving his wife, son, and daughter. Our family is tremendously blessed to call Jay Harley husband and daddy. Pray for his continued strength and wisdom as we all depend on His strength right now.
3. Pray for Jett - Pray that God would guard His mind and heart as his little world has been rocked. I know God is allowing my sweet baby boy to experience His nearness during this time when mommy and daddy are away. If you know Jett, you know he is a creature of routine and expectation. What a lesson in trusting God our little 3 year old is learning! Pray God protects Him and teaches him how CONSTANT, FAITHFUL, and CONSISTENT HE IS amidst our ever changing lives and circumstances. Pray Jett feels loved and safe.
4. Pray for Jane, Jett & Caroline's "JJ" - Jane was here for hospitalization one and has been here for almost the entire two weeks we have been here this time. She has provided for and loved Jett so well. Pray she feels near to the heart of God as she so unselfishly serves her son and our family. Pray that God would bless her and Jimmy (Jett & Caroline's "didi").
5. Pray for our family, friends, doctors, and nurses - Pray that the light of Jesus would shine so brightly that He would be magnified and we would be made less. Pray that He would be made famous.
"Thank you for praying for me and my family! Don't worry about me, Jesus has me in the palm of His hand and it is so good to be here." Love, Caroline :-)
Tuesday, August 7, 2012
From Jay, Sunday 8.6.12
Well, I am going to make an attempt to write an update.
We had an eventful afternoon with a good meeting with the pulmonologist. We discussed next steps for after we hear back from the expert team in Denver. At this point, we really need to hear from the Denver team as their response will guide the next steps. We are grateful for their willingness to review Caroline's case. Please pray that we get a response soon.
As we walk around the hospital, we are consistently reminded how blessed we are and thankful we can be for our current circumstances. As we have said many times before, there are many families who are experiencing much much more difficult circumstances than we face today. I respect those families greatly.
I read Philippians 4 this morning. We are learning to be content in our situation and trusting God for His purposes and desires for our family. We are now in the midst of trying to live the declaration we used at the end of a talk at Connect Church in March and at the end of a talk at ServantU at DBU in July.
The declaration: God is really big, I am really small, and His greatness compels me to fully surrender my needs, wants, desires, plans, stuff, money, relationships, significance, past, present, and future completely to Him. I will trust and pursue Him fervently if He gives abundantly, and I will trust and pursue Him fervently if earthly delight is removed from my life or never given to me.
We would rather live this at home with no difficulty going about our normal family life. For this time, we get to live this in a room on the pulmonary floor at Children's Medical Center. We try to live with extreme trust and faith in God during conversations about lung biopsies, anesthesia, and impedance probes.
As we spend a lot of time at the hospital, we watch a lot of Olympics and do a lot of reading. I read the book "Bonhoeffer: Pastor, Martyr, Prophet, Spy" by Eric Metaxas. I flew through this biography on one of my favorite theologians and heroes of the faith. Upon finishing that book, I decided to read Metaxas' biography on William Wilberforce called "Amazing Grace."
This book was the basis for the movie of the same name on Wilberforce. I recommend the book and the movie. Wilberforce was a British politician who was a brilliant orator and had profound impact on British society by leading and persuading the country to abolish the slave trade.
Wilberforce is not portrayed completely accurately in the film as in reality, he was only 5ft tall and was often ill throughout his childhood. I tell all that to say that this biography reminded me that lung disease nor any other problem or disease defines us. God can and does use the small and the sick for His purposes and maybe even to change the world.
Our prayer for Jett and Caroline has always been for them to be used by God to change the world for His glory.
We had an eventful afternoon with a good meeting with the pulmonologist. We discussed next steps for after we hear back from the expert team in Denver. At this point, we really need to hear from the Denver team as their response will guide the next steps. We are grateful for their willingness to review Caroline's case. Please pray that we get a response soon.
As we walk around the hospital, we are consistently reminded how blessed we are and thankful we can be for our current circumstances. As we have said many times before, there are many families who are experiencing much much more difficult circumstances than we face today. I respect those families greatly.
I read Philippians 4 this morning. We are learning to be content in our situation and trusting God for His purposes and desires for our family. We are now in the midst of trying to live the declaration we used at the end of a talk at Connect Church in March and at the end of a talk at ServantU at DBU in July.
The declaration: God is really big, I am really small, and His greatness compels me to fully surrender my needs, wants, desires, plans, stuff, money, relationships, significance, past, present, and future completely to Him. I will trust and pursue Him fervently if He gives abundantly, and I will trust and pursue Him fervently if earthly delight is removed from my life or never given to me.
We would rather live this at home with no difficulty going about our normal family life. For this time, we get to live this in a room on the pulmonary floor at Children's Medical Center. We try to live with extreme trust and faith in God during conversations about lung biopsies, anesthesia, and impedance probes.
As we spend a lot of time at the hospital, we watch a lot of Olympics and do a lot of reading. I read the book "Bonhoeffer: Pastor, Martyr, Prophet, Spy" by Eric Metaxas. I flew through this biography on one of my favorite theologians and heroes of the faith. Upon finishing that book, I decided to read Metaxas' biography on William Wilberforce called "Amazing Grace."
This book was the basis for the movie of the same name on Wilberforce. I recommend the book and the movie. Wilberforce was a British politician who was a brilliant orator and had profound impact on British society by leading and persuading the country to abolish the slave trade.
Wilberforce is not portrayed completely accurately in the film as in reality, he was only 5ft tall and was often ill throughout his childhood. I tell all that to say that this biography reminded me that lung disease nor any other problem or disease defines us. God can and does use the small and the sick for His purposes and maybe even to change the world.
Our prayer for Jett and Caroline has always been for them to be used by God to change the world for His glory.
Sunday, August 5, 2012
Weekend Happenings
We received one of 3 surfactant deficiency test results Friday. Praise God test 1 was negative! At that time Caroline was on 5 L oxygen support at 24 %. We weren't sure if her set back was because of that horrible probe, a viral pathogen, or disease progression. BUT NOW she's back to 2-3L at 21%. 21% is the same percentage of oxygen that we all breathe normally so she is just getting pressurized room air through her cannula. This is good because it means we are closer to going home and staying further from the ICU.
I finished the previous paragraph and Caroline dropped her oxygen saturation and had to be bumped back up to 4 L at 24%. 11:15pm and getting a new chest xray. I am So thankful God is in control and I do not have to worry. Again, God is in control and I do not have to worry.
A friend (Melissa) commented tonight on how un-phased Caroline seems to be through all of this. Melissa said Caroline is un phased because God is un-phased and God is able.
God IS able. Able to heal. Able to make peace. Able to transform. Able to make whole. God is able because of who He is. God is healer, peace maker, transformer, and restorer.
God I praise You because of who You are. God I praise you because You are healing Caroline and one day She won't even need these old lungs because she will have a heavenly body and will dance and sing and be free with You, our Maker, our King. Jesus would you bless Us with many days with Caroline. Even more so, Jesus would you continue to be so near to Caroline that she would experience you even as a 4 month old infant. Thank you Jesus for calling children Your Kingdom's pride and joy. I know You hold our baby in Your big hands and she is blessed to experience You. Thank you Jesus for being so near to my broken heart.
"Now to Him who is ABLE to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be all glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen." Ephesians 3:20
I finished the previous paragraph and Caroline dropped her oxygen saturation and had to be bumped back up to 4 L at 24%. 11:15pm and getting a new chest xray. I am So thankful God is in control and I do not have to worry. Again, God is in control and I do not have to worry.
A friend (Melissa) commented tonight on how un-phased Caroline seems to be through all of this. Melissa said Caroline is un phased because God is un-phased and God is able.
God IS able. Able to heal. Able to make peace. Able to transform. Able to make whole. God is able because of who He is. God is healer, peace maker, transformer, and restorer.
God I praise You because of who You are. God I praise you because You are healing Caroline and one day She won't even need these old lungs because she will have a heavenly body and will dance and sing and be free with You, our Maker, our King. Jesus would you bless Us with many days with Caroline. Even more so, Jesus would you continue to be so near to Caroline that she would experience you even as a 4 month old infant. Thank you Jesus for calling children Your Kingdom's pride and joy. I know You hold our baby in Your big hands and she is blessed to experience You. Thank you Jesus for being so near to my broken heart.
"Now to Him who is ABLE to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be all glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen." Ephesians 3:20
Friday, August 3, 2012
I need you more
Friday, August 3, 3012
The probe finally came out yesterday at 4, Praise God! I don't think Caroline or I could have handled it for even thirty more minutes. Yesterday was the hardest day we have had yet during this hospital stay. Because Caroline struggles to take air in already, having this tube (about the diameter of a toothpick) down her nose and throat exacerbated the problem. She was either crying with tears of distress or sleeping all day. She is normally such a peaceful easy baby, so to see her in obvious discomfort and frustration made me feel almost equally the same. Caroline had been weaned to "room air" (no support) while awake and only 1 L during feedings and sleeping; however, she really started struggling with the probe tube and had to be put on 5L oxygen support round the clock. After the probe was removed at 4 yesterday, Caroline did not show any improvement and as of this morning, she is still working pretty hard to breathe even with the high level support.
Last night Gretchen (a close friend) was here with me and we talked some about worshiping God through trial. My baby is sick and not getting better and my heart has the deepest ache missing Jett. I choose to worship my savior Lord Jesus Christ not only because He is good but because He is holy. I think we can slip down a very slippery slope when our worship is dependent on what God does and not just who He is. I was asked once, "who is God to you today?" Although I understand somewhat the answers intended for this question, the reality is God is the same today as He was yesterday and will be forever. God is Holy, God is good, and everything He does is good. "But as for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all your deeds." Psalm 73:28
Caroline's attending pediatrician just came in and told me that the surfactant tests came back "somewhat normal" meaning not enough abnormality was seen to call it the cause of her respiratory symptoms. No, I don't know what that means or what our next steps will be. Dr. Cannon, our pulmonologist, should be in shortly to explain it all. I am grateful (we didn't want these tests to show a deficiency) and nervous all at the same time, but I just wrote it, and I still believe it.
God is Holy, God is good, and everything He does is good. "But as for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all your deeds." Psalm 73:28
My prayer today -
[ Lyrics from: http://www.lyricsmode.com/lyrics/l/lindell_cooley/i_need_you_more.html ]
The probe finally came out yesterday at 4, Praise God! I don't think Caroline or I could have handled it for even thirty more minutes. Yesterday was the hardest day we have had yet during this hospital stay. Because Caroline struggles to take air in already, having this tube (about the diameter of a toothpick) down her nose and throat exacerbated the problem. She was either crying with tears of distress or sleeping all day. She is normally such a peaceful easy baby, so to see her in obvious discomfort and frustration made me feel almost equally the same. Caroline had been weaned to "room air" (no support) while awake and only 1 L during feedings and sleeping; however, she really started struggling with the probe tube and had to be put on 5L oxygen support round the clock. After the probe was removed at 4 yesterday, Caroline did not show any improvement and as of this morning, she is still working pretty hard to breathe even with the high level support.
Last night Gretchen (a close friend) was here with me and we talked some about worshiping God through trial. My baby is sick and not getting better and my heart has the deepest ache missing Jett. I choose to worship my savior Lord Jesus Christ not only because He is good but because He is holy. I think we can slip down a very slippery slope when our worship is dependent on what God does and not just who He is. I was asked once, "who is God to you today?" Although I understand somewhat the answers intended for this question, the reality is God is the same today as He was yesterday and will be forever. God is Holy, God is good, and everything He does is good. "But as for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all your deeds." Psalm 73:28
Caroline's attending pediatrician just came in and told me that the surfactant tests came back "somewhat normal" meaning not enough abnormality was seen to call it the cause of her respiratory symptoms. No, I don't know what that means or what our next steps will be. Dr. Cannon, our pulmonologist, should be in shortly to explain it all. I am grateful (we didn't want these tests to show a deficiency) and nervous all at the same time, but I just wrote it, and I still believe it.
God is Holy, God is good, and everything He does is good. "But as for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all your deeds." Psalm 73:28
My prayer today -
I need You more
More than yesterday
I need You Lord
More than words can say
I need You more
Than ever before
I need You Lord
I need You Lord
More than yesterday
I need You Lord
More than words can say
I need You more
Than ever before
I need You Lord
I need You Lord
More than the air I breathe
More than the song I sing
More than the next heartbeat
More than anything
And Lord as time goes by
I'll be by Your side
Cause I never want to go back
To my old life
Right here in Your presence
Is where I belong
This old broken heart
Has finally found a home
And I'll never be alone
More than the song I sing
More than the next heartbeat
More than anything
And Lord as time goes by
I'll be by Your side
Cause I never want to go back
To my old life
Right here in Your presence
Is where I belong
This old broken heart
Has finally found a home
And I'll never be alone
[ Lyrics from: http://www.lyricsmode.com/lyrics/l/lindell_cooley/i_need_you_more.html ]
Wednesday, August 1, 2012
Joining God
A couple of years ago Jay encouraged me to read Experiencing God by Henry Blackaby. I remember when the book first came out and my aunt and uncle were reading it in their home group. (Weird, the things I remember - I think I was just a little freaked by the picture of Moses on the cover of my aunt's work book so it stuck in my mind). I began reading the book and could not put it down. In the book Blackaby says God is at work and we are to look for Him and join Him. After a day or two in the hospital the first round I told Jay that I just don't want to miss what God is doing, I don't want my vision to be so clouded by Caroline's sickness that I miss out on what He is doing. On the seventh day that we were in the hospital a nurse asked us if we wanted to move to a bigger room. We wondered why it took seven days, but hey, we were still excited. We moved to our new room and spent the night there. The next day when we were told we were being discharged I began packing up. I looked across the hall and saw that Jay was in another room praying for someone. I immediately began to cry in great joy.
Heaven and her mom Jamie were in the room across the hall from us. They had just arrived to Children's via Care Flight from East Texas. Heaven had gone to the ER in East Texas with pain and fever and was told she had two tumors on her kidneys. Heaven was terrified. Jamie was terrified. Jay had seen Jamie (mom) in the hall and Jamie told him Heaven was crying so without being asked and without a chaplain's badge, Jay entered Heaven's room to encourage and pray for her. I heard Jay's prayer from across the room. "Lord, this is not new news to you, you know what Heaven is going through and you are our healer." Jay's prayer came from a deep place from within the both of us, a place we had been for eight days.
The next day I had to return to the hospital to pick up Caroline's compound prescriptions. While I waited, I visited Heaven and Jamie. I learned that Jamie herself was on a liver transplant list and she had lost her job and her fiancee within a week of their hospital stay. Jamie told me she was scared. I began to cry because I could literally feel her pain...the deep fear of losing a daughter. I told her about our first night when I felt like Caroline was slipping away and that I was afraid I wouldn't see her awake again. Our mom hearts melted together and we were able to minister hope to each other in that moment.
It is so clearly obvious that it was God who moved us to that bigger room on the day that Heaven was admitted. I told Jay that if our entire hospitalization was for us to have the opportunity to meet and pray with this family, it was absolutely worth it. Of course, I don't want my daughter to experience pain or discomfort; however, I understand that even her existence isn't for herself - its for the glory of her Maker. That is kind of hard to say without feeling a tinge of guilt, but we signed up to journey with God regardless of the cost. I want my kids to know that this journey with God won't always be surrounded with fields of daisies. This journey has places with really tall rocky mountains that you can't see around. . But we aren't on this journey alone. In fact, this journey isn't about us at all. This journey is about the One who designed it. I pray our kids recognize this and experience the abundant life Christ offers in our humility and recognition of His glory. I pray this recognition drives them to join God in His great work.
And PS, Heaven was released a few days after us and is expected to fully recover and heal back at home.
Heaven and her mom Jamie were in the room across the hall from us. They had just arrived to Children's via Care Flight from East Texas. Heaven had gone to the ER in East Texas with pain and fever and was told she had two tumors on her kidneys. Heaven was terrified. Jamie was terrified. Jay had seen Jamie (mom) in the hall and Jamie told him Heaven was crying so without being asked and without a chaplain's badge, Jay entered Heaven's room to encourage and pray for her. I heard Jay's prayer from across the room. "Lord, this is not new news to you, you know what Heaven is going through and you are our healer." Jay's prayer came from a deep place from within the both of us, a place we had been for eight days.
The next day I had to return to the hospital to pick up Caroline's compound prescriptions. While I waited, I visited Heaven and Jamie. I learned that Jamie herself was on a liver transplant list and she had lost her job and her fiancee within a week of their hospital stay. Jamie told me she was scared. I began to cry because I could literally feel her pain...the deep fear of losing a daughter. I told her about our first night when I felt like Caroline was slipping away and that I was afraid I wouldn't see her awake again. Our mom hearts melted together and we were able to minister hope to each other in that moment.
It is so clearly obvious that it was God who moved us to that bigger room on the day that Heaven was admitted. I told Jay that if our entire hospitalization was for us to have the opportunity to meet and pray with this family, it was absolutely worth it. Of course, I don't want my daughter to experience pain or discomfort; however, I understand that even her existence isn't for herself - its for the glory of her Maker. That is kind of hard to say without feeling a tinge of guilt, but we signed up to journey with God regardless of the cost. I want my kids to know that this journey with God won't always be surrounded with fields of daisies. This journey has places with really tall rocky mountains that you can't see around. . But we aren't on this journey alone. In fact, this journey isn't about us at all. This journey is about the One who designed it. I pray our kids recognize this and experience the abundant life Christ offers in our humility and recognition of His glory. I pray this recognition drives them to join God in His great work.
And PS, Heaven was released a few days after us and is expected to fully recover and heal back at home.
Hospitalization 2 - (July 26-current)
"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
Psalm 27:13-14
On Thursday, July 26, we took Caroline back to Children's Medical Center ER. Caroline had been progressively getting worse requiring more oxygen and night and newly needing it during day time naps. She was also struggling when she was eating (gulping & squealing). Getting back to the ER is a whole other story in itself. We had major issues with the scheduling personnel at the pulmonary clinic for which we were apologized to by hospital administration (and given some mints and free valet tickets)! At the ER we saw Dr. Rodriquez (ER doc) and Travis (Resp Therapist) again. We felt very blessed to see them again because they remembered Caroline and knew her history. Caroline was breathing 108 breaths a minute. I dare you to try to do it - its her unique special trick! She was considered to be in moderate respiratory distress. Dr. Rodriquez almost immediately told me we would be admitted. After four painful IV sticks, Caroline finally got some calories via the IV and we were admitted. She was not allowed to eat almost all day because she was at such high risk for aspiration. Apparently when you breathe 108 times a minute its hard to swallow down the right tube. Caroline was put on 4 L of oxygen support, more than she had ever been given, and after a few hours, her respiratory rate slowed down and her oxygen saturation level stayed where it needed to be. We asked Dr. Rodriquez if he had made a final diagnosis (jokingly). He said he believed we were looking at a primary lung disease. Her chest x-rays could be read as normal but when you look closely and consider everything, she clearly had a primary respiratory problem. Dr. Rodriquez stated that the pulmonologist agreed with him.
Although we were sad that we had progressed from "reflux" to "lung disease" over the course of just a few hours, we also felt as though we were given answers that could provide a clear direction. We also felt the providence of God because Dr. Mann, one of Caroline's pediatricians from her previous hospitalization, saw Caroline's name come up on the admission request, so she requested her to be put back in her care. By 4pm, we were in a room - a bigger one from last time and ready to stay the night.
Dr. Rivera, a pulmonologist, saw Caroline the next morning (Friday). She explained the lung diseases they were considering and told us we could expect to be in the hospital for a few weeks to 1 month. They believe Caroline has a type of childhood interstitial lung disease which is a group of rare lung diseases found in children. Caroline had blood drawn and that blood was sent to an outside lab to be tested for surfactant deficiency. For more information, see: http://www.child-foundation.com/childrens-interstitial-lung-disease/surfactant-mutations.
The pulmonary team is also considering a different type of ChILD, NeHi. For more information, see: http://www.child-foundation.com/education/NEHI.
Both disease are rare. Neither are considered life threatening. Both are treatable.
Since being here, we have learned a lot about both possible diagnoses. The pulmonary team here is consulting with the nation's experts on these types of diseases. They are in Denver, CO. Currently (as of 8/1/2012), Caroline is very comfortable. She no longer needs oxygen support all day - just when shes sleeping. She is still giggly, playful, happy, and stinkin' adorable. Today she had an impedence probe placed in her stomach via a small tube down her noat and into her throat. This probe is looking at her reflux which is a symptom of both diseases and can become worse with oxygen support.
This probe is hooked up to this little machine box that we use to mark when she coughs, eats, sleeps, or has increased respirations. It is quite stressful trying to hit a little button every time she coughs, and she is still struggling to get used to the feeling of having this tube down her throat. She will have this for the next 30 hours, meaning mama has to watch and record her every little movement.
Sometimes I feel pretty alone in this. Caroline has become such a part of me. I am the only one who knows what each little noise means, the differences between her cries, and if she seems to be working harder to breathe. Sometimes I get very frustrated because of this - feeling a lot of weight and pressure. Today I have to remember, I am soooo not alone. I am never alone, just like Caroline is never alone.
The first or second night we were hospitalized during round one, I was having a hard time going to sleep. I started to pray but before any words could even come out, I heard God say, "Brittany, I AM." I imagined Jesus in a physician's coat right by Caroline's bed and everytime I began to worry it was as if He didn't allow those thoughts to process. Instead I heard Him say, "Brittany, I AM."
Thank you God, that You are the Great I Am. You are the creator and sustainer, and all things are from you, through you and to you. When I doubt or am tempted to be overwhelmed with my circumstances, remind me that you are the I Am. The same yesterday, today and forever. The great and mighty One who calls Caroline by name. You care for her far more than the birds or the flowers and they never worry about their next meal or what they will wear.
And again...
"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
Psalm 27:13-14
Psalm 27:13-14
On Thursday, July 26, we took Caroline back to Children's Medical Center ER. Caroline had been progressively getting worse requiring more oxygen and night and newly needing it during day time naps. She was also struggling when she was eating (gulping & squealing). Getting back to the ER is a whole other story in itself. We had major issues with the scheduling personnel at the pulmonary clinic for which we were apologized to by hospital administration (and given some mints and free valet tickets)! At the ER we saw Dr. Rodriquez (ER doc) and Travis (Resp Therapist) again. We felt very blessed to see them again because they remembered Caroline and knew her history. Caroline was breathing 108 breaths a minute. I dare you to try to do it - its her unique special trick! She was considered to be in moderate respiratory distress. Dr. Rodriquez almost immediately told me we would be admitted. After four painful IV sticks, Caroline finally got some calories via the IV and we were admitted. She was not allowed to eat almost all day because she was at such high risk for aspiration. Apparently when you breathe 108 times a minute its hard to swallow down the right tube. Caroline was put on 4 L of oxygen support, more than she had ever been given, and after a few hours, her respiratory rate slowed down and her oxygen saturation level stayed where it needed to be. We asked Dr. Rodriquez if he had made a final diagnosis (jokingly). He said he believed we were looking at a primary lung disease. Her chest x-rays could be read as normal but when you look closely and consider everything, she clearly had a primary respiratory problem. Dr. Rodriquez stated that the pulmonologist agreed with him.
Although we were sad that we had progressed from "reflux" to "lung disease" over the course of just a few hours, we also felt as though we were given answers that could provide a clear direction. We also felt the providence of God because Dr. Mann, one of Caroline's pediatricians from her previous hospitalization, saw Caroline's name come up on the admission request, so she requested her to be put back in her care. By 4pm, we were in a room - a bigger one from last time and ready to stay the night.
Dr. Rivera, a pulmonologist, saw Caroline the next morning (Friday). She explained the lung diseases they were considering and told us we could expect to be in the hospital for a few weeks to 1 month. They believe Caroline has a type of childhood interstitial lung disease which is a group of rare lung diseases found in children. Caroline had blood drawn and that blood was sent to an outside lab to be tested for surfactant deficiency. For more information, see: http://www.child-foundation.com/childrens-interstitial-lung-disease/surfactant-mutations.
The pulmonary team is also considering a different type of ChILD, NeHi. For more information, see: http://www.child-foundation.com/education/NEHI.
Both disease are rare. Neither are considered life threatening. Both are treatable.
Since being here, we have learned a lot about both possible diagnoses. The pulmonary team here is consulting with the nation's experts on these types of diseases. They are in Denver, CO. Currently (as of 8/1/2012), Caroline is very comfortable. She no longer needs oxygen support all day - just when shes sleeping. She is still giggly, playful, happy, and stinkin' adorable. Today she had an impedence probe placed in her stomach via a small tube down her noat and into her throat. This probe is looking at her reflux which is a symptom of both diseases and can become worse with oxygen support.
This probe is hooked up to this little machine box that we use to mark when she coughs, eats, sleeps, or has increased respirations. It is quite stressful trying to hit a little button every time she coughs, and she is still struggling to get used to the feeling of having this tube down her throat. She will have this for the next 30 hours, meaning mama has to watch and record her every little movement.
Sometimes I feel pretty alone in this. Caroline has become such a part of me. I am the only one who knows what each little noise means, the differences between her cries, and if she seems to be working harder to breathe. Sometimes I get very frustrated because of this - feeling a lot of weight and pressure. Today I have to remember, I am soooo not alone. I am never alone, just like Caroline is never alone.
The first or second night we were hospitalized during round one, I was having a hard time going to sleep. I started to pray but before any words could even come out, I heard God say, "Brittany, I AM." I imagined Jesus in a physician's coat right by Caroline's bed and everytime I began to worry it was as if He didn't allow those thoughts to process. Instead I heard Him say, "Brittany, I AM."
Thank you God, that You are the Great I Am. You are the creator and sustainer, and all things are from you, through you and to you. When I doubt or am tempted to be overwhelmed with my circumstances, remind me that you are the I Am. The same yesterday, today and forever. The great and mighty One who calls Caroline by name. You care for her far more than the birds or the flowers and they never worry about their next meal or what they will wear.
And again...
"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
Psalm 27:13-14
Tuesday, July 31, 2012
God of the Journey
"I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds. I will be glad and exalt you; I will sing praise to your name, oh Most High." Psalm 9:1-2.
A month ago or so Jay was asked to preach at our church for a few Sundays. Jay asked me what I thought he should teach about. I had recently (meaning about a year ago), re-read through Genesis and Exodus. I felt like I had learned so much about the character of God and His holiness as I followed Moses and the Egyptians through Exodus, so I told Jay, "how about Moses.". I didn't know then how we would live through each sermon on our own family's journey.
The pulmonologist said Caroline's lungs just didn't "look right." He said her right lung looked partially collapsed, had some "cloudy" areas as seen in her chest x-rays, and had some mucous plugs in the airways. He said he would like to see how she does over the course of the month to see if the lung would heal itself. His theory along with the other physicians' was that she has silent reflux (she has NONE of the normal symptoms - like spit up) and was "micro aspirating" into her lungs during the reflux episodes causing the lung damage. We were discharged on Friday, July 13, eight days after our admission, with a diagnosis of tachypnea (rapid breathing), night time hypoxia (low ox saturation), and GERD (reflux). We went home with an oxygen tank and were instructed to continue her reflux medication and give her 0.25 L oxygen at home at night time like they were doing during her hospitalization. We were instructed to wait for phone calls regarding follow up appointments with the GI and pulmonary clinics.
"I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds. I will be glad and exalt you; I will sing praise to your name, oh Most High." Psalm 9:1-2.
A month ago or so Jay was asked to preach at our church for a few Sundays. Jay asked me what I thought he should teach about. I had recently (meaning about a year ago), re-read through Genesis and Exodus. I felt like I had learned so much about the character of God and His holiness as I followed Moses and the Egyptians through Exodus, so I told Jay, "how about Moses.". I didn't know then how we would live through each sermon on our own family's journey.
So, our most recent stop on this journey primarily involves our now 3 1/2 month old sweet baby girl, Caroline Elizabeth. Caroline was born at full term, she stayed in our room at the hospital, ate vigorously, appeared to be healthy, and was discharged with me in 24 hrs. From the very first night, Jay and I discovered that she was a noisy breather. She grunted all night long on night 2 and we ended up pushing her in her bassinet into the bathroom! Caroline's name means "song of happiness" and we called her funny noises her little songs. She also ate very loudly, always gulping and squeaking. We read about funky newborn reading in our baby milestone/development book so we never thought anything about it. At 2 months, I intended to tell her pediatrician about her grunting but forgot and thought it was truly fine. On July 3, 2012 a dear friend, Carol Addison, babysat Caroline while Jay, Jett (3 yr old big brother) went to the water park. Carol noticed that Caroline's chest was retracting when she would breathe and she seemed to breathe rather fast. She didn't scare me but encouraged me to notify my pediatrician just in case something was not quit right. We watched Caroline that evening and the next day thinking maybe she was catching a cold or something. We considered calling the on call pediatrician but decided we would wait until after July 4 to see how she was doing.
Caroline is an extremely happy and content baby. I stress that because sweet Jett just struggled a bit more and was quite a bit louder (I type this with a smile remembering his squeals). Caroline did not develop any additional symptoms and just continued to be happy and smily. She was even starting to coo. Oh Thursday, July 5, I called our pediatrician thinking I was going to hear her say, "it's norma;" however, she said we needed to immediately go to Cook Childrens in Ft. Worth or Childrens Medical Center in Dallas depending on which was closer. I began crying as I threw stuff in a bag and got Jett dressed. Jay rushed home from work and we left for Children's in Dallas.
I cried a lot on that car ride but tried to keep my composure so I wouldn't scare Jett. I kept staring at Caroline so unsure of what was going on. I felt terrible guilt for not recognizing that my baby was sick. I was nervous, anxious, and afraid. I remember thinking, "I need to release her to the Lord, I need to trust Him." I honestly wasn't overwhelmed with peace and I didn't "feel" much of anything, but I do remember saying, "The Lord gives and the Lord takes away, blessed be the name of the Lord." I remember telling myself to focus on Him, to trust Him, to remember His goodness, and to know He is near regardless of my feelings.
We arrived at the hospital and were put in the asthma triage area first. We were immediately seen by 2 respiratory therapists, two physicians, and several nurses. After a general assessment, they moved us to a "critical care" room. There we met Dr. Rodriquez. They asked tons of questions and proceeded with a chest x-ray. The chest x-ray was initially read as normal. From there they did a heart ultrasound and an EKG. All normal. Dr. Rodriquez said he didn't know why she was breathing so fast and why her oxygen saturation level was dropping spontaneously so he had Caroline admitted.
That night, I went in and out of crying and uncertainty. I felt very overwhelmed. Caroline was extremely tired from the busyness of the day and all the tests so she conked out around 4pm and only woke up to eat at 7 and 10. At 10pm, I told Jay I felt like she was slipping away. Jay and I had watched 2 seasons of"Children's Med Dallas" which was a local TV special on the hospital where we were. We watched these families stay with their sick children and empathized greatly for them, never imagining we would one day be one of those families. I don't think I've ever felt the type of pain I felt that night when I truly thought my baby was about to see Jesus. I didn't even want to verbalize what I was thinking because I didn't want to scare Jay. I asked God for mercy. I asked God for healing. I asked God for time. I asked God for days. I asked God for composure. I asked God for peace. And then, I told God that I would choose to trust my baby with Him because at that point I really knew through experience my sweet Caroline was never truly mine. I have always been good at saying that to people, but I had to really recognize it now.
The night passed and I didn't sleep much because I just stared at the monitor all night. The next day came with another set of tests. All normal.
Another night, another day, more tests. All normal.
And then 6 more nights, days, and tests. All but 2 normal.
On the Wednesday night before Caroline was discharged (the first time), she had a sleep study done to look at her sleep cycles and oxygen requirements. Caroline had only gone 2 out of 6 nights not needing oxygen support. The sleep study showed some mild apnea (breathing pauses) and hypoxia (low oxygen saturation). After seeing the sleep study results, the pulmonologist ordered a high resolution CT scan.
Jay and I both felt like Caroline had something other than reflux. The GI drs had also put Caroline on an hypoallergenic formula that she hated! Thankfully we were able to discontinue it when she started to lose wait. She would barely drink it and it was $38 for a week's supply... Jay's parents had come in town to stay with Jett and we sent them home thinking they may need to return if Caroline got worse or required hospitalization again.
We were happy to go home although I still felt nervous every day. The nurse told me that because I was the mommy I would know if Caroline was getting worse. I kept thinking, "but I didn't know she was sick in the first place!" I told my cousin, Jenny, this (she has a son with a heart defect who required surgery at just a few days old). She told me I needed to trust the Holy Spirit to empower me with that supernatural knowledge. The two weeks that we were home were filled with ups and downs for me. A friend encouraged me with Isaiah 26:3, "You will keep in perfect peace those whose minds are steadfast, because they trust in you." This was and is my prayer...
"Lord Jesus, keep my mind steadfast and keep my eyes fixed on you. It seems as though I can't help but wander. I don't understand the resistence in me that keeps me from seeking you. Is it fear? Is it pride? Whatever it is, Lord Jesus, break it in me so my mind can be steadfast and my heart can trust in you. Thank you for your perfect peace, keep me near, keep me close, I cannot stand on my own. Please Lord Jesus, don't let me miss out on what you have for us during this time! You are good! You are at work in our lives and in Caroline's! Even though her body is tiny, you Lord Jesus are using her to impact the world around her! I've always said it but now I know it, you truly don't wait for a child to reach a certain age before you begin your work in him/her! You are good! Yes, Lord Jesus, I WILL trust in you!
Again...
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