After Jonah's dressing changes, Gerry and I went back there to see him. All of a sudden milk started coming out his nose and mouth, and he began choking. We called for help but all of the nurses were busy at the time. I had to yank Jonah up and lean him forward to keep him from choking, and finally someone came to suction his nose and mouth. He had pulled his tube out again, up into his throat, and it was choking him.
I told them not to put the tube back in unless they could figure out a way to secure it. How can I go home and sleep if I know the same thing could happen again?
Later on tonight, they will be putting in another PICC line - this time in his neck. They will suture in to try to secure it better. As you can imagine, this is very hard on me - thinking of Jonah having to be sedated, messed with (yet again), and then having a PICC line in his neck. With how strong he is and how much he thrashes around, I'm just so afraid that he will rip it out too, stitches and all. I HATE the idea of having something in his neck like that. It makes me feel literally sick to my stomach. I'm just waiting on a call from Matt to talk to him about it, so we can make the final decision. I had asked them to wait to see if he would eat at his 8pm and 11pm feedings, but at eight, he only ate 21 cc's. He needs the PICC line for added nutrition (back to the Hyporal), pain meds, and antibiotics (should he need them again). Along with it, though, comes a higher risk of infection. I know it's necessary until they can find a solution for the eating and pain issues, but I just hate the idea of it, plain and simple.
Another reason for the PICC is that right now they are giving him things through his umbilical line (pain meds, antibiotics, sugar water), and with that, there is a big risk that he could get blood clots in his toes. With the PICC, they would just be able to use the umbilical line for blood draws and to monitor his blood pressure and heart rate.
Please be in prayer for Jonah tonight as he gets his PICC line. Terrified is what I feel more than anything, and I'm just so tired. It's so hard to make these decisions when everything seems to have so many risks.
I need to learn to be his advocate without feeling like I have to be in control - that it's all on my shoulders.
Please pray that all of Jonah's issues will begin to resolve, starting with nutrition. He can't get better (or even close to going home) without eating. If we could get him eating, he would be able to get rid of a lot of the lines, and they wouldn't have to put the feeding tube back in(which will probably be put back in tomorrow if things continue as they are).
Thank you for praying for Jonah. He is one brave, strong little boy. His mommy, on the other hand, is feeling very helpless and weak.
Wednesday, March 11, 2009
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113 comments:
Patrice, withouth personally knowing you, I can safely say you are one of the strongest people I know. Your courage and faith in God and yourself will help pull you through. God has a plan and will see you through. Jonah is so beautiful and strong. Continuing to pray. Dawn M.
I'm praying that God will get Jonah over this hurdle and that he keeps you strong during all of this. Sending lots of love and prayers from Florida.
I don't want to pretend I know what you are going through... this is more than anyone can imagine. BUT I just wanted to tell you that you are stronger than you even know. To all of us out here in the world, you are a pillar of strength and an example. I know that probably feels weird but no one knows how to deal with this kind of thing and the fact that you are doing it with grace, dignity and a healthy dose of God... well, like I said, pillar of strength. Keep praying, doing and believing. God is with you.
I have been reading about your sweet family and beautiful little boy for a few days and I can't say how moved and awed I am by your faith and surrender. Though many times it is difficult to see, our wonderful Creator has you safely cradled in His hands. You and your Jonah are in my constant prayers.
"But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged"
-Natalie Grant "Our hope endures"
Cling to God right now Matt and Patrice, rely on his strength and know he never leaves your side.
I will let you know before I come by soon...Jennie
Saying prays right now. I don't know you personally, but we think of you and precious Jonah thoughout our day. I think the hardest thing is having to watch your baby be in pain. You are an amazing Mama! EAT JONAH EAT!!
Hey Patrice,
I found your blog and have been following daily and praying for you and your family and sweet Jonah. Tonight I am praying that God's peace which surpasses all understanding would guard your heart and your mind in Christ Jesus! I also am praying over you that you would lie down and sleep in peace for You alone, O Lord, make us dwell in safety. I trust that the Lord is holding you and carrying you through this but know it is still so difficult. You are one amazing person and a true testimony to so many people. Little Jonah himself is going to have one amazing testimony! Please know your family and precious Jonah are being lifted up daily in TN. Much love, Christy Dillon
Hi Patrice,
I am a friend of your sis-in-law, Kim. I have been keeping up with you guys through your blog even before Jonah was born. Congratulations on being a mommy again! He is so precious! The latest pictures are so encouraging because he looks so healthy and just so sweet. I am so glad you are able to hold him now. My oldest son was born 8 weeks early and with a cleft palate, so I can understand your elation mixed with fear and anxiety. We had feeding issues, too and had to use the Haberman until he was 14 months old! It was such a joyous day when that feeding tube and all of the other lines came out. Plus, he had 3 surgeries before he was 2 yrs old. They definitely know how to take care of little ones at Brenner's. We spent a few nights there too.
I am sharing all of this to let you know that although, not exactly the same, I understand the feelings you are having and wanted you to know I am praying for you and Matt and Jonah. Soon, you will be taking him home with you and cuddling up with him in your very own home!
love,
Rainy
Oh sweet Patrice. I wish I had the words to make what you are going through better. This really sucks and I want you to know that I think of you and little boy and your family each and every day. Do try to take care of you. You come first (I know you see Jonah as first because you are a wonderful mom like that!). By taking care of you, you will be taking care of Jonah. I hope you are able to get some sleep. I hope Matt feels better. And I hope that precious little Jonah is free of pain.
Thank you for the updates. I cannot tell you how much I appreciate you taking the time to share with all of us.
Kimberly
WI
My grandfather is in the hospital right now and this is the verse I shared with him today...
"You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Trust in the Lord forever, for the Lord, the Lord is the Rock eternal."
Isaiah 26:3-4
praying for you and your baby. I have been following your story since he was born and wanted to leave a note for you today. I'd give you a hug if I could. :) God Bless You.
Oh, you sweet child. I will be praying for you, for your strength mentally and physically, and for little Jonah.. for his healing...
Although I'm just a stranger who happened upon your blog a few days ago, be assured that we will be praying for health for Jonah; for comfort and reassurance for you and Matt; and for wisdom and talent for the doctors and nurses caring for him. God is with you. I pray that he will heal Jonah and give you all strength as you weather yet another trial.
It's amazing how strong mommies are asked to be. You can do this. I believe that you can. I am certain that at times you feel so helpless, but you will be given what you need during this time. Just keep pressing forward for your little man. If you guys can get through these first months, you all can get through anything! Be strong, Patrice! My prayers are with you.
Oh Patrice! My heart goes out to you and to Jonah and poor Matt who can't even be there.
I think of your family ALL the time and will pray extra hard tonight for Jonah and especially for you and Matt.
Its ok to be overwhelmed, its ok to be stressed and unsure. Take a deep breath, say a prayer or five and press on. GET SOME SLEEP! I know that that is easier said than done, but you need your sleep as much as Jonah needs his food!
Still praying!
Janel
Okay, so ummm, Patrice in the comment above where I left out a word...it was suppose to say ...I think of you and your little boy. Not just little boy. Don't want you to think I am giving him a new name.
Sorry, my dear,
Kimberly (again)
I'm praying for your peace and strength. I know this seems impossible, but hang in there~
Amy D.
I started reading about and praying for Jonah after reading about him on MckMamma's blog. I have posted about him on my blog and have asked others to pray. I want you to know that I am praying for your son. I have a 13 month old son and cannot imagine being in your shoes. But know that Jesus knows what you're feeling. He's the only one who can - but who better than He?
Patrice, you are one of the strongest people I know. You are not in control, and yes that is the hardest part. God is, though and you have to continue to trust in him. I know it is hard. You try to get some sleep tonight--Jonah is very strong and I will pray that God will get Jonah through this road bump. You get some rest because Jonah needs for you to be STRONG, physically, mentally, and spiritually!
Much Love,
Leigh
Patrice,
As far as pain management goes, Ativan was our miracle drug. Lydia was on morphine and oxycodone, but not until she received Ativan on top of the others, did I see relief. It is actually not even a pain med. It is a anti-anxiety drug. Its major side effect is antinausea...which helped with her tummy issues.
I am still praying for Jonah to be healed and I keep thinking about Minnesota's bone marrow transplant for EB babes.
It is such a long road for him and you and Matt. God hasn't left you for a moment. Moment by Moment.
Liz
Praying so much for you all. Jonah is such an incredible bubba and you are doing so well with everything that has happened.
Every time I see pictures of little Jonah my heart melts!! He is one gorgeous bubba and you can tell from the pictures he is warrior!!
Praying and praying and praying!!
Luv singingmama
Your amazing little boy is what will keep you strong!!
In the new pictures that you've posted he looks really good, and I just love the mohawk!!
Dear Heavenly Father,
Please watch over Jonah and the doctors and nurses that our taking care of him. Let their hands be steady and guide them to do the right procedures to help Jonah be able to get well so he is able to be home with his loving parents. You are a healing God and a loving God and I ask that you will continue to give Patrice courage and strength and please heal Matt so he is able to return to the hospital to be with his family. We thank you for making Jonah a fighter and we give YOU all the glory. In your precious Son's name we pray.
Amen.
My daughter (with RDEB) had to have a PICC line for the same reasons when she was about 2 weeks old. They couldn't get one in her without her skin just peeling off, so they ended up doing a thing called a "broviac." I don't know if that is an option for Jonah, but it was basically a central line and it was sutured in. It scared me so much for her, and every time they had to change the bandages surrounding the broviac I was terrified. Fortunately it all worked out well for Ella. The key to making it work and keeping her from pulling it out was that it was constantly covered and secured. I would recommend a tubular dressing called Tubifast. It's much softer than the surgilast that you all are currently using and holds things in very secure. There is a tape by the same company that makes the Mepitel and Mepilex and it's called Mepitac. I have several boxes and would be happy to send you a few. While this still has to be removed very carefully, it is easier on EB skin than other types of tape.
As far as being Jonah's advocate without being in control, you are his mom. Your motherly instincts are stronger than you know, and if something doesn't "feel" right then it probably isn't. If you have questions about ANYTHING there is an entire EB network out there that is ready to help. Most of us have been exactly where you are. My daughter was 34 days old when we brought her home from the NICU at our local Children's Hospital. It was the happiest day of my life!
Katie
Mom to Ella, 20 months old with RDEB
Patrice - I want you to know how very hard we are praying for you, Jonah and Matt - for answers to how to best treat Jonah, for NO INFECTIONS, for healing for Matt, for wisdom for the doctors, for a miraculous healing for Jonah, for a CURE for EB, and for peace and rest for you and Matt - keep the faith, you are doing a great job! You are a wonderful Mom! - We love you all and wish we could give you big HUGS and somehow make things better!
Patrice, Matt, and sweet little Jonah... you are in my prayers more that you know! I think of your family multiple times daily, and pray for strength, peace, wisdom, and HEALING!! I am confident that our God will meet all of your needs and answer all of our prayers. Get some much needed rest, I am praying for Jonah tonight as he gets his picc line, for EATING, and for peace that passes all understanding for you. Lots of love from SD. Emily
You got it-- Ill pray as soon as I get off here.
You are incrediably strong, and God knows that. You are strong b/c you let God be your rock... God gifted you with such a wonderful, beautiful, precious little boy because he has a plan...we may not know it, but he does... Off to pray now!!!
PRAYING NOW AND WILL THROUGH THE NIGHT! He is your constant source of stability, He abundantly provides safety and great wisdom, and He gives this to all those who fear Him. Isaiah 33:6
Peace & Hugs! and much love! Aimee
Dear Patrice-
Over the last few days I have been following your blog religiously. My best friend wrote about your situation and I wanted to read and pray for baby Jonah. My family has been praying for your sweet baby boy each and every day. I believe that Jesus WILL heal your baby boy. I am already praising him for the life he has planned out for the three of you. Also, keep trusting your instincts regarding Jonah's care. I was proud that you asked asked the nurses to hold off inserting any tubes so you could try to feed Jonah. I am praying that you, Matt, and Jonah will have a restful sleep that can only come from the Spirit in a time like this. God Bless!
praying for you tonight, especially for Jonah's eating and pain management. i can only imagine the toll this is taking on you and matt--be strong, knowing that you have thousands of others cheering you on, and--most importantly--an amazing God whose strength and power is more than we can even comprehend.
love you, chica.
Praying, praying, praying for precious little Jonah. Oh Lord, please heal this sweet baby! Praying for you and Matt, as well... comfort, healing, strength, peace, wisdom...
"...Do not be afraid or dismayed, for the Lord your God is with you whereever you go." ~Joshua 1:9
Love,
Katy
Weak is never a word I would describe you as. You are very strong and brave. It is not easy having our children sick, and so helpless. Remember too, that you just gave birth a short time ago. You are full of hormones, and your body is exhausted. I know it is really hard, but remember to rest. You will be no good to your baby if you are ill.
Praying for his healing
Praying for you right now!
Angie Schurter
Dear God,
Be with this famly tonight as they deal with making desicions that seem to have so many risks. We know with You Lord that everything will work as you have ordained. Lord give Patrice rest. Ease her troubled heart Lord! Lord, give Jonah the strength he needs to fight this horrible disease. And Lord please let help little Jonah begin to eat! Lord you said where two or more are gathered and ask in your name it SHALL be done. There are so many people praying for this little angel! Hear our cry, and give this family the good news they need! They are faithful God, and have continued to call on You for their son. Anwer their prayers Lord!
"I will not be afraid of the terror by night, nor the arrow by day. For the Lord is on my side; I will cling to Him always."
This verse of song/scripture flew into my thoughts while reading your post tonight. I know you are scared. I can't imagine the intense emotions you are feeling. However, I am praying that the Lord would continue to give you and these nurses and Dr's great wisdom with every single decision being made. You're doing great. Things are going to be ok. We are all praying, Patrice...rest in that tonight. You're so loved. It's all going to be ok.
Oh precious Patrice, you are stronger than you know. Your darling Jonah get's that from you :) You may be tired and weary, but I imagine the greatest of warriors get weary and tired too. I am praying detailed prayers as you have requested...it's a blessing knowing how to pray. Thank you for taking the time to give us those details (how big or small). May the perfect love of Jesus cast of ALL fear in Jesus name! May peace and trust flow over you like warm water.
I am praying for little Jonah as well as you and your entire family. I hope that everything starts to get better every day. I have never commented before, but have been reading ever since I saw your blog link from MckMama. You are all in my heart, especially little Jonah.
Megan
I'm praying that everything will go smoothly tonight and Jonah will rest well. Hoping that everything will resolve and he'll be home in your arms in no time.
Hope you are able to catch alittle rest..I know you must have the world on your shoulders right now. You're in my thoughts and prayers!
Praying for Jonah!
Did you update how your husband is feeling? Did he fight off whatever you thought he may be coming down with?
Dear Heavenly Father...
Heal this sweet child. Help him to start eating and getting the nutrition he needs without all of these intrusive lines. Oh, God, please hold Patrice. Give her supernatural wisdom and strength. We praise you that she was right there with Jonah when he needed her.
She needs rest... Your rest and physical rest. Heal Matt NOW so he can be back at the hospital.
God, please we beg You to do a miracle and heal Jonah completely. Do it for Your glory. Please pour out Your grace and mercy on this situation.
Be with the doctors and nurses and give them understanding and accuracy. Help them know how to control Jonah's pain.
Thank you that Jonah is strong and that He is a fighter.
I pray that as prayers are going up as incense to your throne room from around the world that we can help Patrice continue to hold up her hands in praise to You just as Moses was able to do with the help of his friends.
In the Name of Jesus Christ, we beg you to intervene and do a miracle for the eyes of all the world to see!! Oh, God, please, please heal this precious child.
In the mighty name of Your Son, Jesus-
Amen.
"You are my God and my deliverer.
O my God, do not delay."
Ps 40:17
"Answer me, O Lord,out of the goodness of your love;
in your great mercy turn to me.
Do not hide your face from your servant;
answer me QUICKLY, for I am in trouble."
Ps 69:16,17
Patrice and Matt,
May the Lord Himself comfort you and enfold you in His loving arms today. He is Yahweh Rophe - the Lord who Heals. He is there and is catching your tears in His bottle. Your faith and love in and of Him is a great testimony to so many, many people. The Lord has put your precious family on the hearts of many to pray and seek His face for Jonah. I stand in awe of your surrendered life. He will see you through. He loves you, Matt, and precious Jonah. May the God of all HOPE fill you with all joy and peace.. Romans 15:13. Rest in the shadow of His wings. Love in Christ, Debbie Proffitt
Oh, Patrice....I cannot even begin to imagine what that was like for you. We were blessed that Carson never had to have the tube. Hopefully, without that tube down his throat and as they work out is meds, a perfect balance will be found--enough meds to control that but not so much to interfere with his being able to eat. We will continue to pray for you.
Kristy
I can't imagine your fear and anxiety.
As a mother we have a variety of jobs: teacher, friend, disciplinarian, obsessive worriers, etc. However, our most important job is to LOVE our children. You are giving your baby exactly what he needs from you - a mother's never ending love. Trust in God and the army of doctors and nurses - He is guiding them. May The Peace of The Lord be with you, your family, and your sweet baby.
Patrice,
With all the technology we have these days, I am sure there is an affordable way you can monitor Jonah while you are away. A webcam maybe?
I hate to suggest it because I can see how you could stay transfixed on it while youa r ehome and not sleep or rest. But if it is what may help ease your fears and help you feel secure, it is worth a try, right?
We're praying for your family, and for the doctors and nurses to be hypervigilant with Jonah.
Patrice -
Just wanted to encourage you...Keith and I were talking and we both believe that it was a HUGE turning point for Carson when we started being present for his wraps. We were able to talk to him and rub his head (he still loves that!). It seemed to calm him and us. Also, the doctor started letting us do his wraps soon after....and I think that made all the difference in the world. It was hard (probably the hardest thing I have ever done in my life), but it seemed to help Carson.
Kristy
patrice, i think about you and pray for you and jonah all through the day. you are strong and you can, and will, get through this.
sending lots of love and prayer from washington,
heather
I am so sorry for all that you and those close to Jonah are going through, and of course the battle he is fighting so strongly.
May this be true of you in the days to come: “I prayed for this child, and the LORD has granted me what I asked of Him.” I Samuel 1:27
As with Jonah, find rest in God's healing hands.
Keep forward momentum...there will be delays, but keep going. You can do it...Dear Heavenly Father, we lift up Patrice, Matt and Jonah and ask for your grace and to give them strength today and comfort as parents who are limited in what they can do to ease their son's pain.
Glory be to God. Remember, "be still and know that I AM!"
Regarding pain management, I suggest trying to stick with one medication for a while. It will take his body time to get use to it. also many with EB who use pain medication also use anti-anxiety and/or anti-itching medication along with it. One anti-anxiety medication is versed. Its typically given to people before they have surgery. Atarax is one for itching. Maybe give those a try to see if that makes things a little easier.
I know its a little late now, but you can place mepilex lite (the thin brown foam) on his cheek and then tape to tube to the foam. You can use regular tape as long as it doesn't touch his skin.
Hope this helps
Praying you'll be able to find that balance!
PS--in the state of GA today, legislators began moving a bill about EB through the legislature...to study it!! I shared Jonah's story and conveyed how important awareness is!
Praying for you and your sweet family, and that Jonah discovers food!
I have been following your story from Iowa. I posted your link on my blog and have had some of my friends now following you and praying for you. You have to stay well so you can be there for your baby. Keep your eyes on God and on the end product of all these trials....a well little boy who gets to come home to live. Praying...Carol
Praying with you! My heart breaks for you and little Jonah; he is such a fighter!
You are very strong. We are praying for you, Matt and Jonah.
Jonah is a beautiful baby! Thank you for sharing pictures with all of us strangers. I will pray for you all again tonight.
My husband and I have agonized over difficult medical decisions for our baby and I know how hard this can be. I'm so thankful that the Lord is holding my sweet baby girl in his hands and protecting her. He is doing the same for your beautiful Jonah. I am praying strength and peace for you tonight and rest and comfort for your baby boy.
I'm praying- for all those things... I've already checked the blog once, and just felt the need to check again and leave you some encouragement.
Luke 8:40-48. You can read it if you'd like, but the main part is: the woman who had been bleeding for 12+ yrs straight presses in close to Jesus in the midst of a crowd and touches the hem of his coat. He asks, "who touched me?... I know the power has gone out from me" She let him know it was her, in a trembling action, fell at his feet. He replied, "Daughter, your faith has healed you. Go in peace."
I know you are in the midst of more challenges than I have ever faced our could ever understand, but I promised God that I would pray for others who are too exhausted to pray for themselves any longer.
And that is what me & my family are going to do for you... Please know that when you are too weak to go on, I will continue to lift you, Matt & your precious Jonah up to our Great Physician for healing!
Blessings & Prayers from Washington,
Amy
M&P, I haven't commented in a few days because I feel like a broken record sometimes. I just want you to know that we are still praying for you, still aching with you, still gazing adoringly at every picture of Jonah. No one ever sported bandages and tubes better than your little man ... he should be the model on all the packaging. You continue to inspire me, you continue to amaze me, and you continue to challenge me to amp up my faith.
Oh honey....my heart aches for you! As a social worker in a NICU, I can only understand partially your pain...never understanding fully what it would be like to be the mother of a baby in the NICU for a long period of time. My oldest was in the NICU for a short period of time and this was hard enough.
Lord, please put a hedge of protection over Jonah, his mommy, daddy, grandmas, grandpas, aunts, uncles and cousins. Please provide peace tonight for all of those that have been touched by Jonah. Please allow his PICC line to go in smoothly without any complications.....we love you and praise you Lord...thank you for being our ultimate Healer
I love what Amy B wrote
I heard about your family through MckMamma's blog. I've been reading your updates and praying for you guys daily. May you feel God's love and peace as you deal with these difficult times.
dear Patrice and Matt, have just read your blogs and wanted you to know that prayers are covering you from myself and family here in sydney, Australia. What a wide prayer fire for your gorgeous little son!!! Cathy M
Oh, no - y'all are not weak! This is all just too much new information and experience at one time. You had never even heard of EB until just recently .. .. you can't expect to know how to deal with all this instantly.
I'm sure that you would certainly prefer not to have to "learn as you go", but I'm afraid that's what you're going to HAVE to do. It stinks, darn it!
You and your entire family have all of us out here in blogland praying and thinking good thoughts.
Take it easy on yourselves. I think you are both handling this so well. You have more strength and faith than you think you do!
Find something positive to focus on for a little while. Like that darling hair-do on your little doll. Nothing like good thoughts to make good things happen!
Praying for you all,
Grannie in Florida
Patrice. your words tonight remind me of my feelings 12 1/2 years ago. Though my situation was completely different, there are similarities. My daughter was born with a bowel obstruction and had surgery when she was 2 days old. We spent 23 days in the NICU dealing with pain meds, NG tube, PICC lines, HyperAl, wild hands that grasped and pulled out tubes that shouldn't be pulled. I remember the heaviness of that time, the wondering when/if life would ever be normal, the deep pain of watching my tiny baby in pain. I remember and I see how ever so much more distressing and serious Jonah's diagnosis is than ours was then.
So, I pray, knowing a tiny inkling of the emotions you've expressed.
Father God, be near, be present. You are the giver of life, the God of the infinite universe and the God of the smallest divisions of the smallest atoms. You know each and every cell of Jonah's tiny body and you love him. Father I ask you for a miracle, not because we deserve one or even because we want one, but because of your GREAT love for us and your infinite mercy toward Jonah. I ask for strength and health for Matt and Patrice as they walk these days in the NICU. I pray that everything they do or say will bring glory and honor to your Name, and that your Spirit would guide them in wisdom in knowing when to advocate and when to trust their doctors' knowledge. Amen.
much love, Karina :o)
I have been reading along and havent posted until tonight. While I do not have a child with EB; my first baby was born in 2004 prematurely due to pre-E and came down with an infectious disease(contacted from a nurse/Dr IN the NICU) when she was 3 days old. She was transfered to a larger NICU. The infection ran through her organs and "burned" her intestins,colon and stomach to the point where she did not absorb nutrition. We did not even know what infection shegot for 3 weeks. She was int he NICU for 3 1/2 months (she was born a 35 weeker) She was on Hyperal the entire time. She was also NPO(no food) for 3 of the 3 and 1/2 months off and on. Obviously, she went through PICC lines and after we knew she would be there for a long time she received a central line near her heart.
So my question is..why wont they let Jonah just be on Hyeral through the PICC line? Why do they HAVE to have a feeding tube in? Cant they just suppourt his nutrition through the hyperal and him trying to eat? My little girl never had a feeding tube(except a couple of times in the very beginning) in and her main issue was eating/not gaining weight etc etc. for 3 1/2 months. Along with a micro-colon and ulcerative colitis. Im wondering if you can speak with the ENT or gastro Dr.s and ask them if he can be suppourted by the hyperal for his nutrition. This might also make him a little bit more interested in eating since he wont be getting a continual dose of food into his stomach from the tube? Especially since no one knows at the time what it is doing to his esophagus? And he keeps ripping it out anyway.
Just thinking out loud here : ) My prayers are always with your family and sweet Jonah.
Your family continues to be in my thoughts all the time. As a mom of a special needs son and a NICU nurse, this is all too familiar. It sounds like you are getting some great advice from other EB moms. One suggestion I have for when Jonah comes home is to have an angel care monitor. Its basically an apnea monitor that doesn't require EKG leads which will tear up his skin. They sell it for $75 at babies r us and it will keep you from worrying about him while he sleeps with his pain meds and spitting up episodes. Its just a pad/sensor that goes under his mattress so nothing will be touching his skin. Stay positive and don't be too hard on yourself. You are doing an incredible job.
You are stronger than you think Patrice. I don't know you personally, but I am always encouraged when I come here and "read" your attitude. You have thousands of people praying for you...God will give you the strength and comfort to get through this.
I will be praying for Jonah tonight and especially for you. I can't imagine having to leave him there, hoping he'll be ok. But you'll be ok, I'm praying you'll be ok. And I'm praying that baby Jonah will be strong.
God bless Jonah and your family!
Patrice and Matt, I don't know you personally but I feel like I go through each pain and heavy heart with you with every word you type. Know that I am praying hard on my knees for Jonah to take his feedings more and regularly so all these tubes and invasions of his body will disappear. He is so lucky to have such a wonderful mommy that loves and cares for him, that protects him and guides him and will do anything for him. When you are lost and can find no strength, look to us to lift you up and look to Him to lift you higher. You will not fall for we will all catch you. All of our love to your sweet lovely adorable son, Jonah.
I came upon your blog for the first time today. My heart is breaking. I am praying for you and your little one. God be with you! He is Jehovah Rapha our healer. I have no doubt He will heal your little guy, in His timing. I am praying for strength for you.
Dear Heavenly Father I pray for Jonah right now. Please Lord, surround his little body with your presence and love right now. Please give him strength to endure this. Give his body the energy that it needs to fight this condition. Jesus I pray and believe in faith that only YOU are our healer, and I pray for you to annoint this child with your name, Jehovah Rapha-our healer! I pray and believe this in your precious son's name, Jesus!
Dear Lord, I also pray for Jonah's mommy and daddy right now. You know what they are going through. Surround them with your love, and give them an extra measure of grace to endure. Please give them energy to continue on, and strength and hope to do so. I pray and believe that Jonah's condition will improve on a daily basis. Jesus, I thank you in advance for the prayers that you are going to answer. In your precious sons's name, Jesus! Amen.
Believing and trusting,
Nicole
From "Footprints In the Sand" (with liberties):
...But we have noticed that during
the most trying periods of our lives there have only been one set of footprints in the sand.
Why, when we needed you most, you have not been there for us?"
The Lord replied, "The times when you have seen only one set of footprints in the sand, is when I carried you, all three."
Mary Stevenson
Patrice, Matt and Jonah: I am sure that Ms. Stevenson would not mind the changes to her poem under these circumstances. Please remember that no matter how alone and hopeless you feel, how much pain Jonah is in, how sick Matt is, and/or how tired both of you are, God is there. He is carrying all three of you when you are too tired to stand any longer, too impatient to endure one more step backwards, too insecure to handle one more emergency alone, too much in pain to eat or even cry, too sick to be with my wife and child and so totally exhausted that you don't know for sure where the next breath you need to take will come from. God will give you the strength you need to handle all of these things.
However, he also tells us to remember that our bodies are his temple and we must take care of them. Patrice, particularly you right now, have to go home and get some much needed sleep. I'm not talking about just a couple of hours. I'm talking about getting a sleeping pill from somebody, preferably your doctor, and sleeping until you wake up on your own and feel as rested as is possible under these circumstances.
I did not intend to write a book but I have come to think of you as a part of my family and I worry about all three of you. Though we are not related through blood, we are through Christ and since I am an "older" (somewhat) woman, that gives me the right to instruct you in how to be a good wife and mother. I will go for now. Hopefully you are sleeping and that's what I intend to do as soon as I sign off.
God Bless you to Heaven and back,
Love to all,
Aunt Joyce
Patrice, you have amazing strength and Jonah is very lucky to have such an amazing Mommy! He is just precious.
Thank you for updating so much.
PS I am digging the mohawk!
prayers sent
and thank you for keeping all of us updated
even though most of us don't know you personally, we feel that we are close to you, matt and jonah through god's grace and power
Patrice you ARE a very very strong woman, I know you feel weak but look at all you are going through and the last two days with out Matt. I am praying for that icky bug to leave him so he can be back at your side and give you comfort and strength. I will continue to pray for you all. You have bestowed such a blessing on us all by allowing us to love on Jonah as he heals. Thanks for this blessing, I have seen God's glory everyday increasing my faith and yearning for him. What a great evangelist Jonah is, I am sure many are being won to Christ through his story!
Stay Strong we are all Praying for you!
Cindy
Patrice, sweetie...you are so strong and you will make it through this, too. It's so hard right now, and you have so much to worry about and so much to learn in order to care for Jonah. But in time you will learn it, and in knowledge comes a lessening of fear, and as the fear lessens and the knowledge grows, you find the strength you have hidden underneath it all. (It's there, sometimes you just don't realize it until you look back in hindsite.) It takes strength to hang in there, to go through so much with your child, but every time you ask, God will give you something to boost that strength. Something to remind you that life is good, even when it is hard. It may be something major, or it may be something minor...you just have to see it for what it is when it's given. For me, as odd as it may sound, it's the sky. On days when I have felt that I just couldn't do it (whatever the 'it' was at the time), that life was so dark, God has always given me a boost with something visual...a beautiful sunrise, a colorful sunset, or beautiful clouds to look at. (Maybe He chose that medium because I love photography so much and am a very visual person.) By looking up and seeing the beauty that He has put in the sky, I somehow realize that it WILL get better, that this is just a momentary trial, and that I AM strong enough to get through it. For you it may come as a card from a stranger, words from a friend, an embrace from a loved one, or an eye-snuggle from your baby. It could be anything, so just keep your eyes and heart open to receive the boost of strength. Hang in there, hon, and don't forget to breathe...slow and deep breaths really can help, too...
Jonah was practically the first thing I thought of this morning. I have said my prayers and shed my tears for him. I think of him often. God bless Jonah.
Jonah and you are in my prayers!
Praying so very hard for Jonah and for you and Matt!! You are constantly on my mind!! God will take care of all of you and help hold you up and keep you strong!! Please know that we will continue in our prayers and that we love you guys!! I pray that today will be a better day!! Love you!!
Praying for you and your sweet baby boy. I can only imagine how painful this must all be. It breaks my heart to know that someone so small has to endure things that are so painful. I hope the doctors and nurses gain the wisdom and guidance to treat him successfully. Hang in there and continue to be strong. You are doing such a great job and you are a Superstar when it comes to Motherhood. God is continuing to guide you and we are all praying for him to get well enough to go home with you.
You say you feel helpless and weak, but to us reading this, you are one of the strongest people I can say I know. Your baby is so beautiful. I continue to pray for sweet little baby Jonah and for Matt's speedy recovery and strength for you. God is so good!! Take care
Patrice--I just wanted to let you know we are STILL praying. A friend told me last night at church that they read your blog everyday. That her girls had taken this sweet baby boy of yours on to pray for as a family.
God hears...and He knows all that little Jonah and YOU are all dealing with.
Persevere.
Jonah is in our prayers
I just blogged about sweet Jonah I hope thats ok I'm making ya'll my 1st featured Family.
Praying that you will feel a renewed sense of strength. It's so difficult to deal with medical care because, unfortunately, the doctors are sometimes learning as they go. No one really knows how to handle every single issue that comes up, and I imagine that with a child it's even more puzzling. Jonah is so blessed to have you as his mommy and Matt as his daddy. I pray that you will have the wisdom you need to make decisions no parent should ever have to face. I pray that Jonah will EAT. I pray that Matt recovers soon so he can be by your side.
--Kelley in GA
Have been praying so much for you! Jonah is beautiful! I find it disturbing that when he was choking, "all of the nurses were busy"? It was basically a code blue situation - why didn't someone come running when you called for help? Wasn't there, so I can't say for sure, but it seems to me that someone should have dropped what they were doing to come help or immediately summon help for you. Sheesh.
Praying for all of you...
www.colesfoundation.com
This is a place you can go for support and prayers.
I'm praying for Jonah today!
Praying..
I have said a prayer that the personal pressure you are feeling while being your sons personal health advocate is lifted a bit.
While it's no easy task, I am sure you are making the best possible decisions for your son. God will not let you falter here.
Both my kiddos were in the NICU after they were born, and my son, our first born, was there while my husband was 600 miles away in basic training. Luckily I had my family around to help, but it's not quite the same as not having my partner in life with me to help with the decisions.
Don't be afraid to ask the drs questions (try to not ask the nurses, most of the time they just don't know) do not let them make you feel like you are a hassle.
If you have any questions or just want to vent or grieve about NICU life, please feel free to email me and we can chat by phone or email if you'd like.
Give Jonah big kisses from all your now-loyal readers.
I can't imagine being in your position. I will pray for wisdom for you and Matt, and that Jonah will start eating more. I wouldn't want the tube back in either. So scary!
I read your blog every day Patrice and wish I had answers for all of the difficulties you are going through. After dealing with my cancer battle last year, I can tell you to give everything over to God. Be honest with him and let him know you need help in making the right decisions, etc. I know you would give anything to switch places with Jonah b/c as adults we can take a lot, but to see our little ones in pain it is a hard pill to swallow. Be strong and when you're feeling alone, remember that there are thousands of people praying for your family daily. I hope you have an awesome day today. Jonah is lucky to have a mighty mom like you!
Dear Sweet Patrice:
I was just reading our Legacy for today with Paul and just wanted to share this with you...today's topic was "Conditioning-Renew your strength".
"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth, He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases power of the weak. Even youths grow tired and weary, and young men stumble and fall; but THOSE WHO HOPE IN THE LORD WILL RENEW THEIR STRENGTH. THEY WILL SOAR ON WINGS LIKE EAGLES; THEY WILL RUN AND NOT GROW WEARY, THEY WILL WALK AND NOT BE FAINT." Isaiah 40:28-31
...Most importantly, he reminds us to keep our eyes on Him - to trust in Him completely. He is still on the throne and His ways are sovereign...even when we can't fully understand His plan.
Praying for renewed strength for you (and Matt) today and as you continue on this journey with precious Jonah!
I love you!
Aimee
I found this prayer on another website and I think it says exactly what I would pray.
Lord, please wrap your loving arms around Jonah and his parents today so that they may feel your peace and your love.
Father, I ask you to take Jonah's hand in Yours, and walk with him through this trying time. Make calm his heart and keep him without fear. Guide now, I pray, the minds, hearts and hands of the doctors and staff who will minister to him, that the blessing of health may be restored to Jonah. Dear Jesus, in Your precious Name we ask for a complete healing for him.
Lord, we know that everything is in Your time and for Your purpose so I pray that the name of Jesus be lifted up and glorified in this. We bow before you, Lord, giving you thanks for who You are, and what You are doing for Jonah right now. In your precious Name, we prayerfully ask these things.
Amen
May God bless you and your family richly for the stand you have taken to trust in him no matter what and to share the gospel through the toughest trial in your life. You know God's plan is perfect and he works everything for good to them that trust and believe in him, even though sometimes we would rather our own will be done. But wouldn't it be a blessing to find out that someone had come to know Christ for the first time, or had restored their fellowship that had been lost, all because of your sweet little boys. Your family has touched many people. You have been a true blessing to me.
~Ashlea~
Patrice, Is there a love offering set up for you guys? I want to do something for you since I can't be there to even give you a hug. Can we just send monetary gifts to the address on your blog?
Today is a new day! It's time for a positive turn-around! Your last few blogs have shown how sad, frustrated and tired you are and it breaks my heart! I seems like since Matt has gone back to work and is not there, is when I noticed your frustration and more sadness. Does his work offer any kind of donated leave or short term disability? I can't imagine having to face each day with all of the decisions and set backs w/o him by your side. I sure hope he is feeling better too. At least it was a way for him to get some much needed rest.
Praying hard for all of your request. It seems like in reading your blog comments that there are more people that have experience with this and are offering some good advice. I guess it's just a trial and error thing with each individual and Baby Jonah is surely proven he is quite the "unique" little trooper and individual and wants things done his way! I wonder where he gets that from?????
Love you and hope today will bring some good news your way:)
Nancy:)
A woman from your church lead me to your blog and your story. I'm praying for all of you and make sure to add your special requests.
I can't imagine how hard this is. You are so much stronger then you realize. God is with you holding you, Matt, and Jonah up in his glory.
Much love and blessings,
Rachel
Darling Patrice
My heart is aching for you and Matt - and for your beautiful, precious Jonah. I am continuing to pray for you all so much, that the Lord will give you rest and give Jonah all the comfort and blessings he needs - God bless you so much.
Lots of love to you all
Jenny
Praying for you and Matt, Patrice. God is faithful, and God is so much bigger than ALL of this! May He give you wisdom and rest, and a peace that surpasses all understanding.
He is using Jonah (and the rest of your family) in mighty ways, that are not even completely visible to you.
Your baby boy is beautiful, and an amazing miracle. I continue to check on you all several times a day, and pray every moment that I can.
With love & hugs from Michigan,
Beth
We are praying for Jonah every day. You are such a great mom. He is blessed to have you by his side.
I know it is hard but you might want to consider a G-tube. Nutrition is a life long issue with EB. Our son (RDEB) went through the same thing. His mouth was so sore from oral feedings and it only was making the mouth blisters worse. He was also aspirating. He got a G-tube in his stomach and it has been wonderful. He can still eat by mouth but he is not dependent on it and no more lines. In meeting other children with EB - the ones with G-tubes are in much better condtion physically. Our family continues to pray for you.
The Fischers
I am praying for little Jonah. Praying that God would do a miracle and heal his little body. He is a beautiful boy! Praying for peace for you, too.
Reading all the heartfelt posts to you makes me cry, especially as a mom and knowing the pain you, and especially Jonah, are going through. You've got lots of blog followers who don't know you, myself included, and more prayers being said than you can imagine.
P.S. Just checking in for my daily read and wanted to add how INCREDIBLY CUTE Jonah is!!!
First time visiting. I'm praying for your baby right now.
patrice you are anything but weak! your strength through the past year has simply amazed me. although i don't know why i am amazed, i always knew how terrific you are! lots of love & prayers for you all....
Isaiah 40:31
"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
I wish I was closer so that I could come and give you a hug! ((((((Patrice)))))) Praying for you all.
Patrice,
Praying that Jonah's feeding issues resolve soon!!
Keep your head up Mama! You are doing a great job, making the best decisions possible, and doing everything in your power to help your sweet boy! When you feel overwhelmed by the responsibility of it all, hit your knees! God is with you through this whole journey, you are NEVER alone! Find strength to continue from Him!!
Sending prayers!
Dearest Patrice and Family,
Jonah is beautiful and looks so much like his mom ~ especially his mouth - You and your family have been in my prayers for many days. Your faith and courage are strength to all mothers. Take care. I will pray for Matt to be well and for your specific request for Jonah. God is with you.
Dear Mama Tricey,
You are a wonderful mom! You stay by my side and comfort me when I hurt. You pray for me and everybody who takes care of me each day. I know that this is hard for you and Daddy, but I love you very much! Thank you for loving me so!
Love,
Jonah
P.S.
Auntie Amy sends love and prayers
<3
Patrice,
I am a friend of Katherine and Grayson in Birmingham. I am a nurse and also have a cousin who was born with a liver disorder which caused him to require some nasty tasting formula for all his life, until he got a liver transplant 2 years ago. I believe it has already been suggested, but I would highly recommend a PEG tube, which is a semi-permanent feeding tube that bypasses the nose and mouth and goes directly into his stomach. My cousin had one for 11 years and is was such a blessing for the whole family. No struggling to get the child to eat or take medicine, very little worry about it being pulled out, knowing that he is getting enough nutrition, and really one less thing to worry about for the parent, especially since I know you are worried about what inserting the feeding tube time after time is doing to his esophagus. I don't know if such a procedure can be done on Jonah as this time, I don't have very much experience with infants. I just know that if I had to choose between the feeding tube and a PEG, I would choose a PEG, plus it would help his little sweet face heal up, too. You are doing a great job being his advocate.
Praying for you in Birmingham,
Lisa Oakman
Patrice:
Our Lord will be with us through all things. He is watching over Jonah. God is watching over him. You are the care taker here on earth, but God is the overall caretaker. Your strength and caring motherly ways is the way that Jonah will know that he is loved and cared for. God will give you the strength when you think there is no more and he will show you what that "Little Man" will need to survive. Our faith in God is also our strength in God.
Keep climbing the mountains!!!!!!
Robin and Paul Cummings
Patrice and Matt:
I check your blog every day for Jonah (formerly Cletus the fetus:) and family updates. I can't get thru reading without praying, crying and then being thankful.
Jonah is sure a tough little guy. He is unaware that his parents are warriors.
Fight on.Cling to to the warrior servant king that we serve together.
We like ya'll have laid claim to Jonah on God's behalf.
huggs
You know who it is:)
Patrice, I have lifted you up in prayer and am so confident that the Lord is going to resolve these issues. I hope that you start to feel some peace soon.
Alison
Patrice and Matt,
So many prayers are being offered on behalf of your family - and God has placed you in our hearts. We look forward to each entry you write and feel the burden to be prayers warriors for you. Your Jonah is constantly being interceded for with love and persistence. Donna Coe
Patrice, I saw your note about the breastfeeeding...my son has no where near the issues Jonah has, but he did struggle to breastfeed. I found that if I pumped a little first to get my milk to let down, he was wouldn't give up because the milk flowed instantly and he didn't have to work for a few minutes with no milk. Just a thought....
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