I have to tell you guys - unwrapping him every night is a remarkable gift. We are literally watching God perform a miracle right in front of our eyes. Every night his skin looks better and better. His arms and hands are currently completely blister free, although we continue to wrap them for fear of leaving them unprotected. He has beautiful skin. I don't know if it's really the most beautiful skin in the world or if I just have a new appreciation for skin. It could be the aquaphor. :) His legs are looking much better, although I think his left knee may be permanently scarred. It looks healed but is still a purple color. His upper thighs are looking much better, and he's only getting isolated blisters now on his legs and feet. We thought about just putting mittens on his hands tonight and not wrapping them, but I'm worried he will rub his fingers together and cause more blisters. Wrapped he's limited in motion and encumbered. Unwrapped he's at risk. I dunno.
Grandaddy (Matt's dad) arrived today, but Kim (Matt's sister) didn't make it after all because all the flights from NY were canceled... weather I think. I know she's bummed, and we are too. Peyton (my brother) and his wife, Amy, and kids will be here at some point this weekend as well as my parents. I love having all our family around, and it's especially nice having the extra hands. It usually takes three people to change his diaper. One to hold the paci, soothe, and keep him from scooting off the table, one to prepare his butt patch and do the cleaning and aquaphoring, and one to lift him gently by the knees to put the diaper under. Shwoo. (And I probably don't have to tell you guys this, but breast-fed babies poop A LOT.)
We have a busy week next week, and I'm not looking forward to having to lug Jonah around town - he's not the biggest fan of the car seat, nor am I. We have several appointments next week including OT and the ENT (on Thurs). His stridor has not been nearly as bad these last couple days (although he's having a lot right now as he sleeps and I type). I usually don't notice it except right after he eats. He gulps no matter how much I try to slow him down. He's quite the voracious eater for the first couple ounces and then he tends to wimp out at the end. I'd still like to see him eating more - back to the 90 or 100 cc's (at least 3 ounces) he was eating at the hospital. He's probably averaging 60-70 cc's at this point. His current weight is 8 lbs 4 oz - just in case you were wondering.
The weather is supposed to be beautiful here this weekend, so if it's not too windy, we plan on taking Jonah to Gabe's spot for the first time. I'm excited. I haven't been out there since right before Christmas, and I'm dying to get back. I hope the ducks and geese are back. It's so pretty, and I know Jonah will want to spend many an hour there. I hope it will help him feel more connected to Gabe somehow. I miss Gabe a lot these days. We're approaching what would have been his one year birthday (April 22nd). It's hard to believe it's been a year. As I do all these baby things with Jonah, I just imagine having done them with Gabe. I hope he's proud of us. He makes me want to be a better person. I can't wait to tell Jonah all about him.
Here are some pictures from today.
Time with daddy. It looks like he's smiling in a lot of these pictures, although he's not - at least not in reaction to anything yet. I guess a few more weeks?
Tummy time on the sofa. He raised his own head and put his arms under himself like that. Too cute.
Another sweet one. This blister on his face started out tiny. We've drained it three times. I think it's finally done growing. Poor thing. Takes up the whole side of his face.
79 comments:
I love that baby.....he is precious. You stay in my prayers.
I am so glad to see and hear that Jonah is doing so well.. I will keep the prayers coming. He is so beautiful!!
Keep up the good work Patrice. I know it is overwhelming, but you will soon find the best routine. One day you will look back and say how in the world did I do all that I did. God gives you that extra strength. You are doing a great job and Jonah looks wonderful, loved the pictures. Have a great week-end with your family, so sorry Matt's sister did not make it. Prayers continuing for all of you, especially regarding his appointments next week. May God Bless and keep you all.
I love seeing these pictures of him at home with you guys. Thank you Lord for taking care of Jonah.
Hearts, Hugs and Prayers for all your family as they travel and as they meet and greet Jonah. I'm sure it will be a great weekend for all and a real eye opener at the sametime. You are doing a great job and I know Gabe is looking down saying "mommy you are awesome!" I can't imagine all the emotions and feelings you are going through and all the pressure of dealing with everything day in and day out but you are so strong and doing so good. I will pray for you continual strength.
Hearts and Hugs
Marie
He is beautiful, and yes, boys can be beautiful:-)!! It is a miracle that his skin is looking so much better. An answer to prayers. My sweet children, ages 3 and 9, pray for Jonah's skin each day on their own and it is a wonderful thing to hear the sincerity in their voices. Yes, I'd look for those smiles from Jonah in the next couple of weeks and they will light up your life unlike any other!
I see Matt got a haircut too!
Our family continues to pray for Jonah daily, very specifically and will especially this next week. Please let us know of any specific prayer requests. If it's any consolation, my one-year-old still cries in his carseat almost the whole car ride, have no idea why.
Hoping you enjoy time with your family this weekend and as always praying for each of you.
Much love from my heart to yours, Matt's and sweet Jonah's.
Hey, cutie. It sounds like God's still doing crazy good things. You're looking so good too! (And so handsome. :))
Amanda
(Oregon)
glad he is doing better
I just stumbled onto your blog and have read every post today. I just wanted to tell you that Jonah is a gorgeous baby. Reading your story is inspirational. Your whole family will be in my prayers.
Patrice,
He is so so so handsome. I wish I could kiss those cute checks!!! He has such pretty eyes too. I just love him! We pray for him daily and are so glad that his arms and hands are getting better. Thanks you for sharing pics with us; we love them!!! Oh, my baby cries in his carseat a lot too! When the car is going he is alright, until we stop at a stoplight and then he goes crazy.
Hey guys. He is so very darling. I look at his sweet little face and I know he has a story to tell us. Pretty soon he will be talking non-stop and you will be like, when did this happen? Enjoy every minute of every day because it goes by so very fast. I am so glad he is home and he looks like he is settling in very well. I hope that you are getting rest too as hard as it may be. We look forward to seeing you in a couple of weeks. You continue to be on our hearts and in our prayers. ALL of you.
Much Love,
The Bright Family
What a handsome little guy! So glad that your days at home are going well - we'll keep praying for you all!
SW WI MOMMY
Gabe is very proud of you both! Jonah is so stinkin cute!! Give him lots of snuggles from all of us. Have a great time with your family.
Many Blessings,
Amanda
You all make me smile.
Love and prayers as always.
2SHOES
He is so stinkin cute!! Don't you just want to eat him!!
You guys are doing a great job!!
He is beautiful.
Amen, 5 weeks already, I am so glad to see him very well. keep up the great work, and I'll keep up my daily prayers for Johan.
What a sweet, precious face. I am always so glad to hear when Jonah is improving. You all are in my prayers each and every day. Have a wonderful weekend!
Oh Patrice,
How that boy has stolen my heart. I have something to send you all soon, just wanted to wait until after he was home. We are still praying and sending lots of love. Thank you for letting us be a part of your journey. I know we all feel blessed by knowing Jonah in this special way.
Much love
Mel in Arkansas
He is just so beautiful. So happy for you.
He is doing really well!!
I always laugh when I hear new parents saying "tummy time"
My second son was born around the first year we were told not to lay babies on their stomachs to sleep-
(1994)
but they never told us tummy time was important!!-
I never did it!!
I guess after a few years they realized it was important-
Jonah looks so cute during his tummy time!
Patrice - just a note on draining blisters, I don't use needles, I use a little pair of cuticle scissors to cut a little slit in the blister, that way it doesn't fill back up. Make sure that you pop them as soon as you see them, that way you can catch them when they are small.
I am so glad that his hands and arms are blister free! That is so amazing and such great progress!!!
Janel
I will continue to pray. I love seeing the pictures!! He is beautiful!!
Sweet, sweet baby boy! Jonah is looking so great! Love to see updates :)
In my thoughts and prayers!!
He is absolutely beautiful. Praying for you all and especially precious little Jonah every night.
i love the tummy time on the couch picture. Jonah is such a cutie. So glad things are going well at home. we will keep praying...
the last picture is precious!! natalie began smiling "meaningfully" at 5 1/2 weeks... so this should be any day now :) so wonderful...
~Kimberly (Randolph) Waller
Hi Jonah! You are looking so happy and healthy, and we are so thankful. Your big eyes just make me melt, and your little grin puts one on my face! Keep propping that head up and working those arm muscles... you've got a whole house to crawl in and explore in a few months! We are looking forward to coming back to NC in July and possibly visiting you; Casey can't wait to meet his new friend! Give your mommy and daddy hugs from us! Love you, Chris and Jessie and Casey
I just love those pictures ... he has the cutest little face! Glad to hear the blisters are slowing down and not causing him so much trouble.
I would have to agree with make-ip becoming a luxury. I don't have time to look in a mirror let alone stand still long enough to put on make-up.
He is just beautiful. I've been reading daily, but think I've only commented once, but oh my, your boy is just gorgeous and so tough!!! I'm so glad his blisters seem to be healing up. He looks SO much better to me!
I have been following you and Jonah for a couple of weeks now and I just want to say that you are AMAZING and so is he. What a precious little guy he is. I admire you for your tenacity and grace. My son was born at 23weeks 2days gestation. Non viable. Miraculously he is now a rather chunky 8 month old who is thriving and becoming such a wonderful little boy to know! These babies are special and I DO believe in MIRACLES.
He is beautiful!
I love that tummy picture where his arms tuck under his head. Every new thing he does is such a gift. I will pray that he grows into a healthy man. Heidi, coral springs, florida
Jonah is absolutely beautiful! He is looking great! And those smiles might be the real deal. My daughter started smiling "on purpose" around 5 weeks old. I think he just wants you to know that he's happy!
Precious. Priceless. I'm in awe of the mighty, healing hand on our Father. What a mighty God we serve!
Jonah is such a beautiful little boy...those pictures are just precious. You and Matt are doing an awesome job. I am so glad you pushed to bring Jonah home...look at the healing that's taken place since then! He looks so happy and at peace. Prayers still going up for all 3 of you.
Its so amazing how God works! I'm so glad to hear his skin is looking better each day. Jonah, you're still in my prayers, buddy! You keep surprising mommy and daddy!
You and Matt are incredible. I simply LOVE your writings although they make me cry a lot. I quickly grew to love all three of you so much. Jonah is a PRECIOUS gift from our loving GOD. And as always he knows best and therefore gave Jonah the absolute, positively, without-a-doubt most wonderful, loving, God-fearing parents ever . . . there's just now doubt. I love you all. Oh, and the picture where Jonah put his arms under his head lying on his belly . . . priceless . . . partly because HE DID IT HIMSELF and partly becuase he's just SO SWEET AND CUTE AND OH, I COULD JUST KISS HIM!!!! So happy that his is at home! Prayers still coming your way.
With Love, Kisses for Jonah and Prayer,
Sandy Moore
King, NC
Patrice,
I know I keep telling you that I won't give you more advice, so I promise this is it...propably not but I'll try.
Just to let you know on the bath, keep doing what you're doing. We tried to give Ella a bath fully naked when she was about Jonah's age and it was a complete disaster! She did a ton of damage to her skin. After that we would put her in a tub but with her bandages on (which is what most parents do). It wasn't until she was over a year old that we started taking off her bandages for a bath. And even then we would take the arms off for one bath, then during the next bath we would take off the legs. Its just been the past few months that she's gotten completely naked for her bath, and she's almost 2. Those are just my 2 cents.
Katie
He is just so beautiful!!! My kids smiled for the first time at 4 weeks. we would only get one or two a day, but now at 7 weeks my little guy smiles at us a lot!
I'm so happy that you are pumping your breastmilk for him--keep it up. It will help him so much as he battles those blisters!
He is SO adorable!! Glad things are going so well & you guys are settling into a routine.
He is TOO TOO TOO cute. I love to see him.. thanks for the pictures.
SO GLAD to hear the news of Jonah's blister-free arms and hands, and of the improvements on his legs and feet. You are obviously doing a great job! While I do believe in the power of prayer, you have both put a lot of effort toward this - learning how to do his wraps as well as the other daily activities (feeding, diaper changes, etc.) in a way that he can tolerate. While you have shared your frustrations, your strength, patience, and gratitude show through to me EVERY DAY. Thank you for your fine example of faith through trials. Hoping all of the appointments go well next week, and that you get to visit Gabe's spot. From the way you describe it, I can't imagine Jonah wouldn't want to spend lots of time there. My son certainly enjoys being outside - especially if there are ducks and geese around! - I'm sure Jonah will, too.
Continuing to pray...
I love the last picture!! Jonah is gorgeous!! I'm so happy his hands are better. You're always in my prayers.
Awww...I love the pic of him with his face lying on his arms...they're all cute, but that one just reaches out & grabs you, you know? I can't wait for the day we get to read a blog about his first real laugh...that is a sound that goes straight to the core of a parent, in a very good way. It's like any and all bad things that may have come before get completely wiped away for an instant. Hopefully the family will all be able to get there this weekend and spend some time with ya'll.
I've hesitated to put anything here about what's going on in our lives this upcoming week because this is your place, your blog, and it should be all about Jonah. But, if you don't mind and you guys have an extra second, would you add my Bryson to your prayers this week, too? He's having yet another surgery on Tuesday...hopefully it'll just be outpatient and over with quickly and all will be fine, but still, it's surgery, which is scary no matter how major. Matt & I talked about it at work, so he can explain it...I won't go into details here. But I would appreciate the added prayers if you have a second.
Keep up your smiles, your hopes & dreams, your prayers, and your camera...we all love these posts and pictures of Jonah...he is so precious, and through this blog we all get to feel like we're a part of his life....
I tell ya..I just love this little guy. I never knew that I could have so much love for a little baby that I have never really seen or held. Maybe it is just that we are all part of God's family and that is why I love him so much. I am so glad that his body is doing such amazing things on it's own. God is good!! I think that you are such a wonderful mom and hope to one day meet you and little jonah and let our children play together. I will continue to pray for our Lord's hands healing his body as only He can. Keep up the good work mama!! God sure knew what He was doing giving that sweet baby to you guys. Jer.29:11
Hi,
I am a speech therapist who has been following your blog. What a precious little boy you have and his skin is looking great! I love the photo of him resting on his hands...adorable!
I just wanted to comment on the stridor after he eats. Are you keeping him upright at least 30 minutes after eating? He could be refluxing and keeping him upright (when possible) at as close to a 90 degree angle as possible for 30 minutes will help. The stridor occuring mainly just after he eats makes me wonder if he is aspirating reflux possibly (not meaning to cause more worry in you.) Wanted to share my immediate thoughts as an SLP.
Oh! Those eyes! And that smile! Jonah's simply enchanting!
I've not read all the comments, and perhaps you already know this, but...
A Dr. told my mother when she was having her baby "wimp out at the end" that the first few ounces of a mother's milk are very sweet and low in nutrients (apparently, this is a God-designed appetizer to coax the baby into eating). Mom was told that just before nursing her baby, she was to pump a little bit of her milk first (discarding it), and then feed the baby. This helped to ensure that the little one wouldn't fill up simply on the sweet milk.
I hope that helps.
I'm praying for you and read your blog often. :)
so delicious
BEAUTIFUL BOY!! I continue to be amazed by your strength and will (not to mention little Jonah's!).
Patrice and Matt, I can't get over how cute this little guy is and he's changing so fast! You both must be so proud!!! It sounds like you are doing great at managing everything, and I know this is God working - although there was never a doubt in my mind what awesome parents you would be! Jonah is blessed beyond comprehension to have you guys in his life, and I'm so glad God chose you to raise him. I was just wondering, seeing as he's doing so well, can we get more pictures of all the healing you speak of? I know you don't want to offend anyone, so perhaps it's not a good idea...just wondering! And hey, we want to come visit but know you have lots of family coming round right now - we'll wait for a good time for you :) LOVE YOU BOTH!!!!!!!!!!
He is too cute! So glad to see him improving. Hope you enjoy your time with your family. Still praying!
He is so handsome! Glad things are going well at home! Jonah is always in my thoughts!
I love the pictures. He's getting so big and is such a cutie.
Just wanted to share with you that I have a baby with significant sucking issues and teh strider you talk about is something we had to deal with early on (It got better around 8 wks) Anyway, we switched bottles until we found one where our baby wasn't gulping so much. It helped a ton!! We ended up on the playtex bottles, but I have also heard that Dr. Brown bottles are great. When Levi doesn't gulp during feedings we notice a significant improvement in his reflux, his breathing and his gasiness.
I'll be praying for you all, as always.
What a cutie! I am praising God that he is improving and that you are feeling more confident in his care. Praying for your busy week coming up. Thanking God that you will be able to spend time with family coming in.
He is just so beautiful. I'm so glad he's home. However, I'm sad it takes so many of you to change his little pants. I know how difficult it is with a newborn, but factor in his condition and I can only imagine how stressful and difficult it must be. I continue to pray for your little man and hope he continues to thrive at home. I'm actually at our local library checking in on him and precious Stellan since our house is under construction and my computer is not hooked up right now! Had to get my Jonah and Stellan fix! Take care sweet family and I'll keep the prayers and sweet thoughts headed your way. Don't get too overwhelmed with your appointments...God has a hand in it all and gives you only what you can handle. Enjoy your beautiful weekend together as a family.
Precious pictures... thanks for sharing them.
just thought I'd mention that some breastfed babies stop pooping all the time as they get a little older. All four of mine started at about two months old to go only once every week or two, so that might make diaper changes a little easier. God bless.
Love love love the pictures. Patrice, I can see your smile as you type your post. How wonderful that he is doing well.
Kimberly
WI
Awww, Jonah is beautiful. Thank you for sharing his pictures...I don't think I can choose a favorite - they are all great! So happy to hear his skin is healing, and the dressing changes have gone well. Sounds like you are all settling into a routine and things are running a little smoother. Enjoy the time with your family this weekend (I know they all will have fun spoiling sweet Jonah!).
Gail
Annapolis, MD
I am most certain that your beautiful Gabe is beyond proud of his parents and his miracle brother! No doubt in my mind our heavenly Father, too, is proud of you both as well! Thanks for continuing to be an inspiration! We continue to pray daily and are so thrilled to hear you are seeing God's miracles on his hands and feet (all over, really) daily!
Blessing & Prayers
Amy in WA
he's so beautiful!
Blisters or not Jonah MUST be the most adorable baby EVER born! He does look as if he is smiling in the most recent pics:)
Praying that you all were able to enjoy this BEAUTIFUL weather today!
Much love and continued prayers!
Bless your sweet longing heart - - I have no doubt that your precious Gabe is very proud of his mommy!
Hugs-Aimee Pence
You are in our prayers ! Johah is the most precious baby so cute!!
I found your blog just after Jonah was born. I am privileged to be able to pray for your little boy. He is beautiful, I don't know if you normally call boys beautiful, but he is. I love to see updates and learning new ways to pray for you, your husband and Jonah.
Take Care and God Bless.
<><
SWEET BOY!!!!!
We all love you.
Go, baby, Go!
Love to hear that you are able to think about less wrapping, but I understand your hesitance to change anything.
He is adorable. After reading about the diaper changes, I had to question myself. Why does it sometime take two of us to change my toddler's diapers? Because it is so rotten, smelly, stinky and so much of it. Gotta love being a mom.
Glad to "hear" the ease in your voice in these last few posts. I know it isn't easy, but it sounds like you are doing well.
Jonah is so precious and changing so much. It is such a miracle about the healing of his skin. Still continuing to pray for that little angel and you and Matt and your families. I know Gabe is so smiling down on you and Matt with his little brother and so very proud of you both and what a fighter his little brother is. Continuing to pray for you all.
He is adorable! Asking God that you get to keep on seeing improvement after improvement until he doesn't need bandages anymore!
Hope you enjoy the time with your family. Jonah is the sweetest thing in the pictures. I know you love him dearly and are in awe of God's handiwork each time you look at him. Thankful that his skin is doing better!
Awww, he is so precious, and it's so great to hear that he is doing so well! You should really be proud of all of your hard work. Having a newborn is tough stuff, and all of the extra work you have to do must be exhausting. You 2 are GREAT parents, and Jonah is such a lucky little guy. I'll still be praying for more healing, and uneventful bandage changes.
He is so beautiful!! THank you for sharing those pics!
Daisy (alabama)
I shall pray for you and your faimly to have strength to be patient and consderiate while going through trying times with Jonah.He is a blessed little boy who has a miracle to tell one day for the lord. My cousin ALissa Whitt asked for everyone to pray for you and check out your blog and i have to say not being sure what I was going to find just seeing that happy little baby boy is so comforting and yes I'm the same way I cried just reading about him. God bless you all. Check out Aaron and Amanda Crabb they co wrote a song together called Miracle and that is truly what you have is a miracle. I will pass your blog onto Amanda and have her take a look and pray to and every where she goes she will have them pray for little Jonah.
Oh Patrice, he is just so beautiful! I am just so blessed to have come to know of baby Jonah, and your family. To have been a part of such an amazing movement of prayer, watching God's hand on your family, and seeing sweet Jonah looking so well now. It's just so incredible.
I will continue to have him in my prayers every day.
He is so precious! I love that last picture of him - so beautiful!! I hope you enjoy time with all your family & the extra hands! Jonah continues to be covered in prayer:)
I just found your blog and I wanted to say hi. I had a baby boy too on February 28, 2009. His name was Joshua Michael Hall. He had a condition called sirenomelia. We had him for 2 hours before the Lord took him. I will be praying for your Jonah.
I know you've heard/read it over and over...Jonah is absolutely adorable. These latest pictures are really starting to show some his personality thru his expressions. They are gorgeous.
What a beautiful little guy. Thoughts and Prayers.
I am a new reader of your blog, I followed off and on when you first gave birth to your precious baby boy from a different blog I read, but today I just HAD to comment and tell you how remarkable Jonah looks! I almost couldn't believe it was the same sweet lil guy! I am so happy for your family and hope that this just keeps getting better! He's amazing, truly amazing :)
So beautiful! Love the one with his little arms under his head!
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