tag:blogger.com,1999:blog-8191367444095035928.post5966783545363782699..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: jonah - sunday, march 22ndPatricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-8191367444095035928.post-67498444379041508962009-03-24T13:40:00.000-04:002009-03-24T13:40:00.000-04:00I found your website through another friend's blog...I found your website through another friend's blog. Your little Jonah is so precious. He is gorgeous. I can't even begin to imagine the journey that you guys are traveling right now. I just felt compelled to leave a comment because the Lord placed a scripture on my heart to encourage you with. It is one that really ministered to me as we traveled on our own difficult journey. I have twin girls that were born 12 weeks early at 1.5 and 2.5 lbs. Praise God that they are healthy and thriving girls, but we struggled with a lot of unknowns while they were still in the womb. The verse I want to share is Deuteronomy 32:4. "He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is he." I had to keep reminding myself that God is perfect and He does no wrong. It is not in His character to mess up. As hard as it is to watch your baby boy fight for his life, God didn't create Him wrong. He was created perfectly. My prayer for you is that you look at Jonah and see God's perfect work. I know that that might be hard to hear, but I hope that it may have encouraged you, if even just a tiny bit. I'm praying for you.Laurenhttps://www.blogger.com/profile/16573372921278898660noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-57257385994455660102009-03-24T12:38:00.000-04:002009-03-24T12:38:00.000-04:00He has really healed up so much! What a precious a...He has really healed up so much! What a precious and beautiful face! You have every right to be proud, he is amazing. Your courage is awesome! I love the verse from Isaiah! So true! HUGS!!!Amiehttps://www.blogger.com/profile/00683645220792694348noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-54624800570245530732009-03-23T23:31:00.000-04:002009-03-23T23:31:00.000-04:00Jonah is so precious and is always in my prayers. ...Jonah is so precious and is always in my prayers. I hope that you will be able to bring him home soon. He looks so cute in his cloth diaper! I had wondered if you had thought of cloth diapers for Jonah. I love them for my baby b/c they are so soft.Bishop's Momhttps://www.blogger.com/profile/07448327542518038889noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-85558142399580046412009-03-23T21:22:00.000-04:002009-03-23T21:22:00.000-04:00What an amazing story you have. My heart goes out ...What an amazing story you have. My heart goes out to you, your husband, and little one. Praying God's best for your entire family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-36467337926128012352009-03-23T20:44:00.000-04:002009-03-23T20:44:00.000-04:00he is adorable!he is adorable!mommahttps://www.blogger.com/profile/00817409011684856251noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-29499464959654021432009-03-23T19:48:00.000-04:002009-03-23T19:48:00.000-04:00He is so very precious! Praying for you.He is so very precious! Praying for you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-53749327069960628402009-03-23T16:33:00.000-04:002009-03-23T16:33:00.000-04:00I am so excited over your continued answered praye...I am so excited over your continued answered prayers! You don't know me but I was asked to pray for you guys by a friend. I hadn't checked to blog in a couple of weeks and I am astounded at how good Jonah is doing. Praise the Lord for every step in the process. You have my continued prayers. I hope you get to bring him home soon!<BR/><BR/>Christie - Raleigh, NCAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-36775502265604171912009-03-23T15:35:00.000-04:002009-03-23T15:35:00.000-04:00OH, by the way, I think the fundraiser idea mentio...OH, by the way, I think the fundraiser idea mentioned in one of the first few comments of this post is a fabulous, fantastic idea. I know there would be SO many people helping to spread the word of it and donate as well!Susanahttps://www.blogger.com/profile/12594529717250616264noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-20930052949116437822009-03-23T15:34:00.000-04:002009-03-23T15:34:00.000-04:00I hope your push to bring Jonah home soon is 100% ...I hope your push to bring Jonah home soon is 100% successful. I completely agree with the infection risks as long as you are at the hospital. I will pray for this for you and pray that Jonah will continue to do well enough each day for this too, along with all the other prayers I offer in behalf of you, Jonah and Matt continually each day. I am so relieved each day to see posts such as the ones as of late. You are in my thoughts and my heart more than you could ever realize. I have never had a situation like this that isn't "close to home" so to speak touch and affect me in a way as your family has. Sending so much love to you, Jonah and Matt and, of course, daily prayers too.Susanahttps://www.blogger.com/profile/12594529717250616264noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-51148451122058308992009-03-23T14:46:00.000-04:002009-03-23T14:46:00.000-04:00Once again, Jonah is just so beautiful! His precio...Once again, Jonah is just so beautiful! His precious little face is looking so good. I hope you're able to get him home soon.Wendyhttps://www.blogger.com/profile/10970403017997953649noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-45333661604005983912009-03-23T14:01:00.000-04:002009-03-23T14:01:00.000-04:00He is so sweet!!Nana did a great job making that c...He is so sweet!!<BR/><BR/>Nana did a great job making that cloth diaper!! Go Nana!! Love it!<BR/><BR/>Praying for Jonah and for you!!Bethhttps://www.blogger.com/profile/03530920615259170825noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-5132564817131250202009-03-23T13:40:00.000-04:002009-03-23T13:40:00.000-04:00Praying for baby Jonah and your family!Praying for baby Jonah and your family!Hilaryhttps://www.blogger.com/profile/10534316401164334926noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-2537954906173542872009-03-23T13:18:00.000-04:002009-03-23T13:18:00.000-04:00I encouraged you to keep moving towards home but I...I encouraged you to keep moving towards home but I am not reccommending that you do it against medical advice. I'm sure your doctors want your family home together too. Take the time to set up a good plan for Jonah, you will be so busy when you get home that you won't have as much time to work on supplies, insurance issues etc. We will keep praying for you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-71327144199021826632009-03-23T13:13:00.000-04:002009-03-23T13:13:00.000-04:00I am not sure how I came across your blog, but I a...I am not sure how I came across your blog, but I am praying for you and your son. But in one of your posts you asked about less blisters (where you stopped the gauze) while I know it is totally different, my son was burned in a propane explosion and we had to do the wound care just like you are doing with your son, we had a layer called "burn pad" , then gauze, then the netting. But the burn pad we would put in the aquaphor and play cut and paste and place this directly on the skin, then the gauze. This allowed the cream to get in there and work, rather than being absorbed into the gauze. The burn pad was amazing! It made bandage changes less painful because it would not dry out and stick to the skin. If you go to my blog and click the label “Blessings” you can see what burn pad kind of looks like. It is what was sticking out of the gauze of my sons’ bandages. I hope this helps if you have any questions please feel free to email me, bbkdavis@msn.com We were in the Burn Center at the University of Utah.Mama & Papa Grizhttps://www.blogger.com/profile/07917661009460250431noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-79850448587928563942009-03-23T12:47:00.000-04:002009-03-23T12:47:00.000-04:00He is looking better every day.Love and Prayers to...He is looking better every day.Love and Prayers to/for all.<BR/>2ShoesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-30634013425991740782009-03-23T12:45:00.000-04:002009-03-23T12:45:00.000-04:00Hi Patrice,I am a NNP in a NICU and want to ask yo...Hi Patrice,<BR/>I am a NNP in a NICU and want to ask you if you were definately told that Jonah would have to be put to sleep to have a broviac placed. I have seen very many babies have them placed at the bedside by the pediatric surgeon. In my experience, it is very rare that a baby needs to go to the OR. Usually a baby is given a local anesthetic, along with something like morphine or ativan. Perhaps it is not possible for him to get a local injection? If the issue comes up, be sure to ask. My impression has been that you don't want him put to sleep which is why I am contributing this. Also, to comment on someone's suggesting to take him home against medical advice( AMA)- sometimes insurance will refuse to cover the hospitalization.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-71330272649044757852009-03-23T12:30:00.000-04:002009-03-23T12:30:00.000-04:00Nana's are the best! Hugs and prayers coming your ...Nana's are the best! Hugs and prayers coming your way!<BR/><BR/>Many Blessings,<BR/><BR/>AmandaWatts Familyhttps://www.blogger.com/profile/07656275442592867289noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-86285098113479007932009-03-23T11:49:00.000-04:002009-03-23T11:49:00.000-04:00Always praying for your family! God is good! Jon...Always praying for your family! God is good! Jonah is adorable!<BR/><BR/>KamiKamihttps://www.blogger.com/profile/10799215346270649943noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-69869097397870633572009-03-23T11:32:00.000-04:002009-03-23T11:32:00.000-04:00I am one of your many blog-followers! I just have ...I am one of your many blog-followers! I just have to say...He is growing so much. He is looking better and better with every passing post. I am praying for you and him. Stay strong and God Bless.The Hill Familyhttps://www.blogger.com/profile/05607085945506278592noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-19024655452627225452009-03-23T11:20:00.000-04:002009-03-23T11:20:00.000-04:00You can take Jonah anytime. It called signing him...You can take Jonah anytime. It called signing him out AMA...Against Medical Advice. It just means you cal sue the hospital if something happens to Jonah at home. Its something doctors and nurses will NEVER tell you you have that option. I almost had to do that with my daughter. The day I went into do it, the discharge papers were waiting for me to sign! <BR/><BR/>It would be a good idea that is week you find a wound care supplier i can give you some names if you don't already have some.<BR/><BR/>2- get a home health care nurse set up and make his 1st appointment with his pediatrician. That's something most hospitals require for all babies.<BR/><BR/>If you can do all that by Thursday and the go in there Friday and tell them you are ready to take him home!<BR/><BR/>The longer he is in there the bigger chance he will get MRSA and that is something you don't want!Sara Denslawhttps://www.blogger.com/profile/09625588629095084632noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-25453908352483578962009-03-23T10:48:00.000-04:002009-03-23T10:48:00.000-04:00I am still praying and praying for Jonah's health....I am still praying and praying for Jonah's health. For his infections to clear up and for him to get a clear Non-Herlitz diagnosis. I praise all the progress he has made. I use cloth diapers on my baby and they are so flexible. Check out Precious Dignity. I know from experience that the woman Deanne is an absolute sweetheart and could custom make you some diapers for Jonah. http://preciousdignity.myshopify.com/<BR/><BR/>I haven't seen you post about Jonah not wanting to take a bottle so that sounds very promising. Keep up the hard work with pumping. I have nursed both my girls and know it is a labor of love to be pumping and bottle feeding but know that YOU are keeping him so healthy. Much love and prayers,<BR/><BR/>Karen in BostonAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-18030928788760905132009-03-23T10:28:00.000-04:002009-03-23T10:28:00.000-04:00Patrice, we are still praying relentlessly for Jon...Patrice, we are still praying relentlessly for Jonah. Praying for no infection, praying for a short hospital stay, praying that God holds this sweet boy close during the weaning from Morphine process and praying you will be homeward bound soon. And as always praying for a downright miracle in healing and long and posperous life with your boy. I love this boy as if he was my own. I honestly feel God brought me to your blog. Following this journey has changed my life and made my heart grow by leaps and bounds. I will always be proud to call myself a mother and woman of God next to you, Patrice. You are nothing less then amazing.<BR/><BR/>Much love,<BR/>MelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-56779895110935525202009-03-23T10:19:00.000-04:002009-03-23T10:19:00.000-04:00Keep moving toward getting home - the longer he is...Keep moving toward getting home - the longer he is in the hospital, the greater risk of infection. AJ got MRSA in the hospital before he was able to get home. It's just another thing that a child with EB does not need. I'm so happy you are moving closer to that day and that Jonah is doing so well.<BR/><BR/>Barbara and AJ (RDEB 15 months)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-18164186850945706032009-03-23T10:07:00.000-04:002009-03-23T10:07:00.000-04:00I'm confident you can care for your sweetie at hom...I'm confident you can care for your sweetie at home! I'm praying he goes soon and no infections! Honestly, this blog family is full of prayer warriors!nancygraycehttps://www.blogger.com/profile/05288996419936475583noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-33180621355147315442009-03-23T10:01:00.000-04:002009-03-23T10:01:00.000-04:00Every time I see pictures of Jonah I think he is c...Every time I see pictures of Jonah I think he is cuter than the last time I saw him!! Thank you for sharing and I'm so glad he is having more good days. I am praying for you to get him home, for his infection to clear and for a great week!!!<BR/><BR/>Hugs and prayers!Juliehttps://www.blogger.com/profile/11768340545226910759noreply@blogger.com