This was right before we went to bed. It was falling pretty hard.
Yesterday was super cold and really windy so we didn't venture out. At all. I did take a shower but stayed in Jonah clothes all day and didn't put on makeup. It was awesome.
But today I was ready to get out, so we bundled Jonah up (much to his dismay) and went outside. He was not happy. I think he would have liked being outside but HATED having so many clothes on. I put shoes on him for the first time too (several sizes too big so they wouldn't blister his ankles), and I don't think he was diggin' that either.
After we came in I decided to make Chicken and Rice Soup. And then I had leftover chicken so I decided to make Chicken Tortilla Soup too. I had no idea how to make it so I looked it up on allrecipes.com. It was so good.
Here is the recipe:
Ingredients:
2 skinless, boneless chicken breasts
1/2 teaspoon olive oil
1/2 teaspoon minced garlic
1/4 teaspoon ground cumin
2 (14.5 ounce) cans chicken broth
1 cup frozen corn kernels
1 cup chopped onion
1/2 teaspoon chili powder
1 tablespoon lemon juice
1 cup chunky salsa
8 ounces corn tortilla chips
1/2 cup shredded Monterey Jack cheese (optional)
Directions:
1.In a large pot over medium heat, saute the chicken in the oil for 5 minutes. Add the garlic and cumin and mix well. Then add the broth, corn, onion, chili powder, lemon juice and salsa. Reduce heat to low and simmer for about 20 to 30 minutes.
2.Break up some tortilla chips into individual bowls and pour soup over chips. Top with the Monterey Jack cheese and a little sour cream.
I think I would add a can of black beans if Matt liked beans. I'm actually surprised it didn't call for them. I think that would be tasty.
I think we got about seven to eight inches, but I never heard a final total. Our road hasn't been scraped yet, so the melted slush has refrozen. It's really slick and nobody really knows how to drive in the snow here. Who knows when school will be back in session. If our neighborhood is any indication, it could be a while. It's really pretty but I'm about done being homebound.
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Operation Jonah Eat is on hold. Today didn't go very well, and the second try of solids made him puke up one of his bottles, so I ended up chickening out and giving him four bottles anyway. I just can't take the 162 to 216 calories (not that I'm counting) away from him until I'm sure he'll eat. I know I can't expect a change after just one day, but I started having my doubts today and changed my mind. I think I'm not going to worry about it right now. I'm going to talk to his pediatrician at our next appointment. Thanks for praying. Maybe pray for more bravery and trust for me. :)
His diaper area is still super rough. Today was another bad day, and he is crying every time he urinates. It's heartbreaking, and there's nothing we can do. I hate it.
29 comments:
Patrice, I just came across your blog and wanted you to know that I am so touched by your story. I was initially attracted to your blog because of your pictures of Jonah in the NICU. My twin girls were born early and one spent 66 days in the NICU and the other 80 days. All of that to say, whenever I see NICU pictures, I can't help but read those children's stories! I am praying for you and your husband and for little Jonah and am so blessed to keep up with your story and watch our awesome God work in your life. Blessings to you all!
He looks so cute in all the winter warm stuff!! Reminds me of the kid in The Christmas Story that can't put his arms down!!! And although I notice it everytime, I keep forgetting to say I think Jonah has the most beautiful blue eyes!! Lucky boy! Hoping he eats well for you....
I am so sorry. I really hope his area gets better and that soon he will not be crying every time he urinates. My sweet baby had a really bad diaper rash that made her scream every time with some spots bleeding, so I cannot imagine what the blisters feel like. I will pray his area gets better and that you get some good advice from the pediatrician.
Y'all got twice as much as we did! Our pictures look about the same with Brecken - buddled up so much that he couldn't move. He wasn't too thrilled either, but we got cute pictures right? :) Jonah is so precious. The pics are adorable.
For the few short days Garrett was with us, we laid Vaseline Gauze on his tiny little boy part to keep them from rubbing against the diaper and to keep pee off the wounds. I honestly don't remember how well it worked but it seemed to work for the short time we did it.
Look at his EYES!! they are so bright and beautiful!
That snow looks amazing! Glad I live in "sunny" Florida! haha!!
Still praying - nothing worse than having your downstairs broken out!
Don't fret the solids, he is doing amazing and when he's ready he will let you know - maybe he just doesn't like baby food, but would really like actual adult food? (I mean, I don't think baby food is all that appealing - maybe he has a sophisticated pallet?)
J :)
What great snow! We got a few flakes here and there, but mostly just rain and a lot of wind. UGH!
Jonah looks so sweet in the snow - I was reminded of Randy in A Christmas Story, too! ("I CAN'T PUT MY ARMS DOWN!") I'm so sorry about his diaper area and will continue to pray for him. Can you use Desitin and Aquaphor at the same time? Also, do you think he might have a urinary tract infection? (Not to add yet another worry to your long list!)
Hope you all get good rest, and that Jonah will eat well tomorrow.
Love,
Laura
Awww, poor little guy! It would break my heart to see him crying every time he urinated too. That just sucks! I'm sorry :( I will pray it heals quickly and stops bothering him.
I love all of the pictures of him in the snow. He is such a cutie in his snow pants!
~Amy
Ive never commented befor but have been following for a long time... I dont know if you can use it or not but have you ever tried bag balm? its thick like aquaphore(sp?) but from experience useing it on my boys its was great at helping bad open sore diaper rash.. If anything it would protect his skin so it doesnt burn when he wets...
My girls never did eat baby food. They nursed pretty solidly until close to a year, then I would let them have TINY bites of whatever we were having. Before long they were eating real food. Jonah looks adorable in the snow pictures!
Love, love, love the photos! We'll keep praying for jonah & his eating (& your bravery!)
-Valerie in GA
Yeaaaaa, his face looks realy good=)
I really don't know if this could work, but I'm sure a paeds nurse could tell you: depending on exactly which bit of Jonah's bits (so to speak!) is sore, a Texas (‘condom’, or external) catheter might help. Nothing goes in anywhere, it's not invasive... just a little sheath with a tube coming from the end, I thought it might help to keep Jonah dry while he's working on healing up. Poor little dude, I can only imagine how much that must suck.
He looks absolutely darling in his snowsuit... I remember the Simpsons doing a winter episode at some point where Maggie's snowsuit is so bulky that she makes a perfect 5-pointed star with head, arms and legs completely immobilised. Hilarious.
All the very best - especially with the eating!
Becca xx
Is it safe to use Lanolin on his blisters? That's the stuff nursing mothers put on their nipples if they get cracked, it is so pure that it is safe for newborns to 'eat' (get some when they nurse). It is like vasoline, but much thicker.
Big prayers continue!!!
Your soup sounded awesome!!
It is funny my babies never liked being bundled up either. The hardest was going out in the car seat. They would feel very confined. I would open their coats to let them air out a bit. Jonah is soooo cute. He has such a precious innocent face. Your pictures are beautiful.
We had chicken bog yesterday. My kids had not had it before and I "forced' them to try. I have three new converts! WooHOO! Love the snow pictures. Hate the ice part. Praying for you. Don't give up too soon on the eating plan. Maybe smaller bottles but still 4 of them? Then he would have empty feeling. Maybe try feeding solids half way between bottles, when he is getting hungry but not so hungry he gets upset with changes. Just a thought. Hang in there! Jennifer in Southeast, NC
While Jonah may not have enjoyed being all bundled up he looks ADORABLE!!!! Such beautiful pictures! I have the same chicken tortilla soup recipe and it is AMAZING! It's from the cookbook Desperation Dinners which also has some good stuff in it. I also make rice and serve the soup over rice and put the cheese on top and it's good that way too!
May have to try your Chicken Tortilla Soup recipe.
I have to second the idea of consulting an experienced pediatric nurse for protecting Jonah's little boy parts. Another thought is geriatric nurses - they become real experts in skin care as the majority of elderly in long-term-care settings have incontinence/toileting issues, and many of the better nurses have really developed superior methods for skin care/protection and healing of skin breakdown wounds. (There is a whole pharmaceutical industry devoted to these issues.)
I'm not exactly sure how to contact someone in your area, as each state's health care system is structured differently. But surely there is someone who has some help to offer. Where I live, I would start by contacting the Area Agency on Aging and ask about Nurse Practitioners who specialize in Wound Care.
Best wishes to you all, as always,
WendyBee
He is one cute snow bunny!
I hope he's doing better today, in all respects.
Blessings.
Hang in there Patrice! Jonah looks wonderful in his little snow suit and big boy shoes! Was he standing on his own?! (Go Jonah!!) I am so sorry about the eating and the down below areas. I have no advice, only prayers to offer.
I love his snow "bunny" outfit & I loved seeing those top teeth shining in one of the pictures.
I am praying for his boy parts to heal quickly & stop burning & hurting when he wets. Poor baby, but to look at this face & eyes you would never know he had a pain in his life. He is one happy looking handsome fellow.
Love & prayers for all of you
Patrice,
I love the pictures of Jonah, he so cute.
I will be praying for his diaper area to heal. I no it so hard to watch your son in pain and you cant do nothing for him.
Take care.
Christina
He looks so adorable in those pictures! What a cutie. Praying for his poor boy parts.. wish I could pass some of my extra appetite on to him!
Jonah is SO cute in these photos! Thanks for giving me my Jonah fix. Praying for you guys (every day)!
Love from TN,
the Gladstones
Read your post this morning while being snowed in here in Durham still too!! Had me thinking about Chicken Tortilla Soup all day so I made some...but used a different recipe from Recipe Zaar. It was sooo good and perfect for this snowy weather.
Hi Patrice,
I haven't read all the comments but I wonder if leaving Jonah's little boy parts to "air out" is an option? I know when our daughter had horrendous diaper rash, that was something that seemed to help. Of course, I don't know if that is an option with EB but thought I would make the suggestion. Praying for Jonah and thankful that God cares about even these "small" things that are so big to us!
Jen
I hope Jonah's bottom heals soon. I cant imagine how painful that would be! :(
I have your soup recipe simmering downstairs as I type. I took your advice and added the black beans. I cant wait to try it. Oh my it smells YUMMY!!!
You are all in my thoughts and prayers daily. Give Jonah lots of gentle hugs and kisses for me! :)
The snow day pictures ROCK! Jonah looks so dang cute in his snow gear!
That is one "bundle of joy"!!!! Jonah, you stole my heart buddy and one day I'm going to meet you in person!
Love & Prayers,
Sandy Moore
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