The Lord spoke to my heart at a divine appointment on Wed. I realized we are in a spiritual battle and we really need to fight with prayer and pray for divine healing. Each doctor we go to sends us to another one, we take one step forward and THREE steps back, Aiden was healthy and now he's sick too, Abigail now sees four different specialists (Gastro, Cardio, Neuro, Phys Ther.) and the issues are seemingly multiplying, our dog is very sick, our computer broke, I have an infection, and our dishwasher broke. I do not believe that Satan is under every rock but I do beleive he is real and is attacking us. The enemy is crafty in all his ways and he wants nothing more than to steal our joy and make us inneffective. Fall is starting and it is nearly impossible to focus on the hearts and minds of the college students we are influencing when we are at the doctor for 5 hours a day (literally- this is not an exaggeration- we have waited this long to be seen TWICE), 3 days a week. Not to mention seeking to lead them spiritually and have time to be around/share our lives with the lost. Please join with us in prayer against the evil one and his subtle (or not so subtle) workings in our lives. Join us as we go to the GREAT PHYSICIAN and ask for DIVINE HEALING that her doctors absolutely cannot explain. That the world, and all who have heard our story, will give Him all the glory for the miracles He has done!
If you are willing to commit to joining us in prayer, please comment with a "yes" on the comment page- or email me at knelson27@gmail.com.
"Finally 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 & against the spiritual forces of evil in the heavenly reams."
Ephesians 6:10-12
"Your ways, O God, are holy. What god is so great as our God? You are the God who performs miracles; you display your power amoung the peoples."
Psalm 77:13-14
Thursday, July 23, 2009
More doctors, more tests...
Update- Aiden had a minor surgery on Monday to determine the cause of his belly issues. They scoped him and biopsied his esophogas, stomach, colon, and rectum. We have yet to get the complete results but they did find evidence of a milk/protein intolerance. I have stopped nursing and am weaning myself off of the pump. It was a sad and difficult decision but the Lord has given me a peace about it. He is a different baby on the formula- doesn't cry all the time and actually sleeps! (I really didn't know that babies aren't supposed to cry ALL the time- I have never been around a "normal" (not sick) baby!)
Abigail went to the neurologists on Wednesday for her arching and her neck. She only turns her head to one side and always has her head overextended and her back arched severely. The neurologists said she has torticolis- the muscle is too short in one side of her neck and she will need physcial therapy. She also has Plagiocephaly- her cranium is assymetrical. You can physically see it even- one ear is further up than the other. He ordered a CAT scan to check for tumors and and neurological damage from seizures, ect. and to see if her skull is fused together yet. If it is- we have a more serious problem. If not, she can wear a special helmet to help correct it. He really didn't have a clue on the arching of her back.
Please pray the the CAT scan comes back normal, that her arching is nothing and will resolve itself, that her neck is easily fixed, and that the assymetry would be correctable. Pray for Aiden that his results come back normal.
"Blessed is the man who perseveres under trial, because when he has stood the test, he will recieve the crown of life that God has promised to those who love him."
James 1:12
Wednesday, July 15, 2009
Tuesday, July 14, 2009
Aiden allergy and Abigail syndrome?
Many people have been asking Ben and me the latest with the babies. We are so thankful to the Lord for them and are thankful to so many of you for praying for us!
Aiden has been very fussy and inconsolable for a week and a 1/2 now. This is normal behavior for Abigail, but not for Aiden. He's normally very content with someone holding him or his paci. Lately he cries constantly and makes these faces like he's in the worst pain. We took his stool in on Friday and they found a lot of blood in it. The dr. wanted to see him immediately- so we took him in on Friday night to Providence Hospital, they did labs and found that his blood count was very low. The doctor said he had been bleeding internally for well over a week. They changed him to Abigail’s hypoallergenic formula temporarily and we are scheduled to see the GI specialists on Friday to determine the cause. It's very possible that he has developed a milk/protein allergy (the same one Abigail has). Please pray for him-that he feels better, that the bleeding is not a serious problem, and that it is easily treatable. Pray for us for wisdom- the only way I could continue nursing him is to go on a strict vegan diet which we are not sure is the best thing for my health (I already have a calcium deficiency and osteoporosis in my back) and my stress level (cooking from scratch, reading labels, ect.) However, I would be very sad to stop nursing him and the formula is very expensive.
Abigail went to the heart dr. today and they increased her lasix, the medicine they treat the symptoms of her heart disease with because she was breathing rapidly and sweating. She has been arching her back horribly for a month, and throws her head back constantly. It is very unnatural. We thought it was because of reflux, but we took her in to the hospital last week to test her PH level and it came back negative. The cardiologists was concerned and wants her to see either a genetic specialists to determine if she has some sort of syndrome (commonly seen in conjunction with her heart condition) or a developmental specialists to see if she needs some sort of therapy to help correct her spinal development. Please pray for this issue- that it is nothing serious at all and will be treatable or will resolve itself. Also please continue to pray for her gut- that her stools will soften and we will get her on the right formula and medication.
Lastly, please pray for us. After 2 ½ months of sleepless nights, long days in the hospital (or traveling back and forth between two hospitals), the emotional rollercoaster of being in the NICU, getting used to 2 newborns, and now with Aiden sick as well- we are worn down. Our bodies and our hearts have recently really been feeling the effects of this trying and difficult season. Please pray for us- for physical strength and perseverance, for emotional stability, and for spiritual sensitivity. That we would have spiritual eyes to see all that the Lord is teaching us through our circumstances. That we would feel the Lord’s presence and rest in His strength when we have no more of our own. Pray that our marriage would strengthen and that we would be patient and kind with one another- that our character would be developed as we are “refined by the fire”.
Aiden has been very fussy and inconsolable for a week and a 1/2 now. This is normal behavior for Abigail, but not for Aiden. He's normally very content with someone holding him or his paci. Lately he cries constantly and makes these faces like he's in the worst pain. We took his stool in on Friday and they found a lot of blood in it. The dr. wanted to see him immediately- so we took him in on Friday night to Providence Hospital, they did labs and found that his blood count was very low. The doctor said he had been bleeding internally for well over a week. They changed him to Abigail’s hypoallergenic formula temporarily and we are scheduled to see the GI specialists on Friday to determine the cause. It's very possible that he has developed a milk/protein allergy (the same one Abigail has). Please pray for him-that he feels better, that the bleeding is not a serious problem, and that it is easily treatable. Pray for us for wisdom- the only way I could continue nursing him is to go on a strict vegan diet which we are not sure is the best thing for my health (I already have a calcium deficiency and osteoporosis in my back) and my stress level (cooking from scratch, reading labels, ect.) However, I would be very sad to stop nursing him and the formula is very expensive.
Abigail went to the heart dr. today and they increased her lasix, the medicine they treat the symptoms of her heart disease with because she was breathing rapidly and sweating. She has been arching her back horribly for a month, and throws her head back constantly. It is very unnatural. We thought it was because of reflux, but we took her in to the hospital last week to test her PH level and it came back negative. The cardiologists was concerned and wants her to see either a genetic specialists to determine if she has some sort of syndrome (commonly seen in conjunction with her heart condition) or a developmental specialists to see if she needs some sort of therapy to help correct her spinal development. Please pray for this issue- that it is nothing serious at all and will be treatable or will resolve itself. Also please continue to pray for her gut- that her stools will soften and we will get her on the right formula and medication.
Lastly, please pray for us. After 2 ½ months of sleepless nights, long days in the hospital (or traveling back and forth between two hospitals), the emotional rollercoaster of being in the NICU, getting used to 2 newborns, and now with Aiden sick as well- we are worn down. Our bodies and our hearts have recently really been feeling the effects of this trying and difficult season. Please pray for us- for physical strength and perseverance, for emotional stability, and for spiritual sensitivity. That we would have spiritual eyes to see all that the Lord is teaching us through our circumstances. That we would feel the Lord’s presence and rest in His strength when we have no more of our own. Pray that our marriage would strengthen and that we would be patient and kind with one another- that our character would be developed as we are “refined by the fire”.
Tuesday, July 7, 2009
3 weeks!
Abigail has been home for 3 weeks now! I must say, it is MUCH MORE DIFFICULT having 2 babies at home verses just 1! "my hands are full" is an understatement :) Not to mention having one that is quite sick! But it is so much better than her being at the NICU! Aiden is doing well and his apnea spells are getting less and less. Abigail cries alot and has many issues- we go to the cardiologists and GI specialists almost once a week to monitor her heart's swelling and her belly. Since we've been home, they have found blood in her stool twice and had to switch her formula and her meds. There have been several times when we have almost gone to the ER since she has started vomitting and screaming inconsolibly for hours at at time. Each time we've called Children's and Women's and done what they have instructed us to do to help. Please continue to pray for her belly. She is still not having regular stools and we can't seem to find a medicine that works well for her. She is also extremely irritable and having some other symptoms the dr.'s can't figure out. She is pretty upset most of the time which is why I'm so thankful people have been coming over to help me hold her (which can be quite difficult to do while I'm nursing Aiden!)
Overall, life has been very good. The Lord has been so gracious to us over these past 2 1/2 months. He has granted us supernatural strength and preseverance when our bodies should have given out weeks ago! He has given us supernatural wisdom and insight when we needed to make critical decisions for her. I have had so much joy in being a mommy! It is so obvious it is what we as women are created to do! It is so much fun just loving on them. I have been overwhelmed by the compassion and generosity of others. My friends and church family have served me in so many ways- meals, their time, cleaning my house, holding babies, the list is endless. I'm overwhlemed with gratitude. One of the reasons we are doing so well is through the prayers and help so many have offered to us. Thank you Lord for the body of Christ! So many have truly placed my need above their own.
The Lord has also been showing me how committed he is to me by walking us through this extremely difficult season. He is stripping away things both in myself and in Ben to make us more like himself. Although this is a painful process- it is well worth it for He only wants to free us from our sin and shame. My prayer is that I would have eyes to continue to see why He is taking us through the fire and what he is trying to cleanse me from.
"I lift my eyes up to the hills, from where my help comes from ...my help comes from the Lord"
Friday, June 12, 2009
Good news and bad news
The Lord has answered our prayer! They did a small surgical procedure on Abigail in order to obtain four biopsies of her esohpagus, intestines, and colon. They found an overgrowth of bacteria in her stomach and also a mild milk protein allergy that could have been causing her intolerance to food. The bacteria is being treated with an antibiotic. The GI doctor switched Abigail off of breast milk to a hypoallergenic formula called alimentum. This formula is already broken down so that Abigail’s sensitive stomach can digest it. After this switch her belly has looked much better and she has been keeping her feeds down. This is great news! The neonatologists were very skeptical that these minor problems could cause such dramatic symptoms. We believe the Lord has heard all the prayers and has moved on our behalf!!! Please pray that she continues to tolerate her feeds.
The same day we got the news about the mild allergy we also got news that Abigail has heart disease. She has a hole in her heart called an ASD (atrial septal defect) that leads to congestive heart failure. This is a hole between her right and left upper chambers (atrium) of the heart which allows unoxygenated blood and oxygenated blood to mix which forces her heart to work overtime reoxygenating already oxygenated blood.The cardiologists said that the hole is of “moderate” size and therefore will likely require surgery to close it. If the hole was small it would likely close on its own. The heart issue prevents her from taking greater volume of feedings because the more liquid she takes on the harder the heart and lungs work. They are giving her a diuretic called lasix to help with her fluid retention. The doctor said he thought she would need surgery within the first year of her life which would be done up at UAB. The doctor did say that there is a small possibility that the hole may close on its own. Please pray 2 things regarding her heart. 1) That she will begin to grow. The lasik helps keep her fluid levels down but also slows down her weight gain. 2)Please pray with us that as Abigail begins to grow that the ASD will close on its own and that she will not require open heart surgery. If she adjusts well to the lasik and begins gaining weight she may be able to come home the first of next week. YEA!!!
Lastly please continue to pray for Katie and me. The 6 weeks of driving back and forth to the NICU multiple times a day is taking its toll on both of us. I am simply amazed at how well Katie has handled this whole thing. Please continue to pray for perseverance and strength as we face the rollercoaster of emotions. Pray that we would continue to find peace and rest in our heavenly Father. We are starting to embrace the reality that Abigail’s health issues are not going away in a few weeks but will be with us for quite a while. As we embrace this fact, we continue to affirm to one another that God was not obligated to give Abigail to us but has done so simply because of his grace and goodness. Please pray that we would continue to trust Him and his wisdom as we care for her in these challenging times knowing that our judgment is often cloudy and marred by what we see but his wisdom is always perfect and good.
Thank you all,
Ben
P.S. Aiden is doing pretty well. He has had some apnea spells but overall is good and weighs a whopping 7.2 lbs!!!
From Katie- I have strongly sensed the Lord's gracious hand upon us the past 6 weeks that she's been in the NICU. There are days we don't feel as though we will make it another hour, but somehow He gets us through and even gives us joy in the midst of it. Now more than ever "the Lord is my refuge and strength, an ever present help in trouble". He has granted us such grace physically, emotionally, and spiritually, He has used the body of Christ to pour out His love and concern for us through others. I'm so very thankful. - Katie
The same day we got the news about the mild allergy we also got news that Abigail has heart disease. She has a hole in her heart called an ASD (atrial septal defect) that leads to congestive heart failure. This is a hole between her right and left upper chambers (atrium) of the heart which allows unoxygenated blood and oxygenated blood to mix which forces her heart to work overtime reoxygenating already oxygenated blood.The cardiologists said that the hole is of “moderate” size and therefore will likely require surgery to close it. If the hole was small it would likely close on its own. The heart issue prevents her from taking greater volume of feedings because the more liquid she takes on the harder the heart and lungs work. They are giving her a diuretic called lasix to help with her fluid retention. The doctor said he thought she would need surgery within the first year of her life which would be done up at UAB. The doctor did say that there is a small possibility that the hole may close on its own. Please pray 2 things regarding her heart. 1) That she will begin to grow. The lasik helps keep her fluid levels down but also slows down her weight gain. 2)Please pray with us that as Abigail begins to grow that the ASD will close on its own and that she will not require open heart surgery. If she adjusts well to the lasik and begins gaining weight she may be able to come home the first of next week. YEA!!!
Lastly please continue to pray for Katie and me. The 6 weeks of driving back and forth to the NICU multiple times a day is taking its toll on both of us. I am simply amazed at how well Katie has handled this whole thing. Please continue to pray for perseverance and strength as we face the rollercoaster of emotions. Pray that we would continue to find peace and rest in our heavenly Father. We are starting to embrace the reality that Abigail’s health issues are not going away in a few weeks but will be with us for quite a while. As we embrace this fact, we continue to affirm to one another that God was not obligated to give Abigail to us but has done so simply because of his grace and goodness. Please pray that we would continue to trust Him and his wisdom as we care for her in these challenging times knowing that our judgment is often cloudy and marred by what we see but his wisdom is always perfect and good.
Thank you all,
Ben
P.S. Aiden is doing pretty well. He has had some apnea spells but overall is good and weighs a whopping 7.2 lbs!!!
From Katie- I have strongly sensed the Lord's gracious hand upon us the past 6 weeks that she's been in the NICU. There are days we don't feel as though we will make it another hour, but somehow He gets us through and even gives us joy in the midst of it. Now more than ever "the Lord is my refuge and strength, an ever present help in trouble". He has granted us such grace physically, emotionally, and spiritually, He has used the body of Christ to pour out His love and concern for us through others. I'm so very thankful. - Katie
Tuesday, May 26, 2009
Brokenhearted
After many babygrams, xrays, ultrasounds, and other tests, the dr.’s still had no idea as to why Abigail is not tolerating food. They started feeding Abigail again on Saturday in order to get stool samples to test for an allergy. They were hoping after all the tests that possibly it was just immaturity of the bowels causing her belly to swell and become so distended and that this time she would tolerate it. Last night (Mon pm) they called us to say they had to stop her feeds again. We went in today and met with the neonatal specialists. He believes she has an obstruction of the bowels- which can only be fixed with surgery. However, at this point they cannot tell where the obstruction is (& have no hard evidence that’s what it is) & cannot do surgery until they can pinpoint it. The danger with surgery is that 1- she’s a one month old in unstable condition and 2- it causes scar tissue which can cause more blockage which would need to be fixed w/ more surgeries. He tried to prepare us by acknowledging our frustration now- and saying it will probably only get worse as we continue to walk through this. She will probably be in the hospital for 2 more months (devastating for mommy and daddy to hear) if everything were to go well. He is working w/ a GI specialists & and now a pediatric surgeon to try to understand what is going on with her. While we were there today I watched them start an IV ten times in her feet, arms, and head. Every time they stuck her, her tiny veins would blow. She has bruises and wounds all over her from all the IV’s, PIC lines, blood samples, and test they’ve done on her. She looks horrible. As I listened to her piercing cry and watched them hold her down to stick her once again, the verse the Lord brought to mind was “He was pierced for our transgressions, he was crushed for our iniquities, upon him was the punishment that brought us peace, and by His stripes we are healed.” My heart is broken over my little girls suffering and the thought of possibly losing her, and as I sat in the NICU and wept I was baffled more than ever that the Lord crushed His only son for a sinner like me. It must have brought Him such grief and pain. I wish so badly that I could take it for her, that I could be sick instead of her, but I can’t. There is nothing I can do to make it better- which is one of the hardest things. Ben and I are heartbroken, and sometimes we feel like we are drowning, but we cling to the One who is carrying us and petition for a miracle. Our prayer is that the Lord would divinely intervene and heal her fragile body. That no surgery would be necessary and she would miraculously begin to tolerate feedings. Please join with us in this prayer. If it be God’s will for surgery, please pray the dr.’s will have wisdom, find the blockage easily, and be able to treat it effectively.
“Fear not, for I have redeemed you. I have called you by name, you are mine. when you pass through the waters, I will be with you; and the waves, they will not overcome you….” Isaiah 43
Monday, May 25, 2009
My greatest comfort is that when I can't hold Abigail- He is; when I can't comfort her- He can; when she is sad, lonely, scared, & in pain- He is there for her, holding her, and loves her even more than I do. Thank you Lord for your presence both with us and with her at the NICU. You are our strength, our rock, our shelter & fortress- we run to you.
Tuesday, May 19, 2009
Pray for Abigail
Please pray for Abigail-Her condition has worsened. They had to stop her feedings, put her back on IV fluids, & put a tube down her throat to constantly pump her stomach. The dr.'s can't figure out what's wrong with her. She either has an infection, an obstruction of bowels (which they would fix w/ surgery), or she's intolerant to food (not sure how to fix this). We are very worried & emotionally overwhelmed. It's so hard to watch my baby girl suffer-she gags constantly because of the tube and she just cries and cries because she's hungry. There is nothing we can do to console her. However, it's even worse having to leave her there alone then it is to listen to her cry. It has been so taxing trying to pump every 1 1/2 hrs, feed Aiden every 3 (and learn how to take care of a newborn for the first time), and make the trip up to the NICU (which usually takes about 5 hours everyday by the time we drive 1 hr, pump 2x there, and see her). Sometimes I'm so upset when I get home from the NICU that I want to quit, but I know I can't because Aiden needs me too. My heart is constantly torn. We are exhausted and desperatly need the Lord's grace and mercy to make it through each moment. The past 19 days have definitly been the hardest thing He has ever walked me through...I find myself playing the what-if game or second guessing myself alot. Mostly though I'm just so sad she's sick.
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