Friday, April 10, 2009

jonah - friday, april 10th

Jonah is not doing so well today. He's supposed to take 500-550 cc's in a 24 hour period, and he only ate 273 in the last 24 hours. He's really stuffy and lethargic. He's not laboring to breathe, but he's just congested sounding and really sleepy. He has a hard time taking a bottle because he can't breathe through his nose very well, and he'd rather sleep than eat. He doesn't have a fever. I'm not sure what's going on. Maybe just a cold. I don't know if that's a big deal with EB babies or not. The pediatrician's office is closed until tomorrow morning when they have their sick clinic hours. He's drooling a lot more than usual, which would seem to mean that it hurts to swallow, although that's just a guess.

Mom stayed last night to help with Jonah, so I definitely slept more last night than I have been, although I feel my eyes closing as I type this post. It's rainy and dreary here today, so I know that makes me sleepier. Matt's dad got here this morning, so he and Debbie watched Jonah while Matt and I went and grabbed some lunch at Fubbruckas and then went to Target for some Easter basket shopping. We then came straight home, because the Journal photographer came at 2:00. She's coming back at 8:00 tonight for Jonah's dressing change.

I'm feeling pretty down today, but only because Jonah's feeling down. I typically feel what he feels. I'm sad for him. I hate that he hurts.

52 comments:

Anonymous said...

Im sorry. It really sucks that he hurts and you don't know why. I can't imagine your frustration but hopefully by later tonight/tomo morning he'll sound better. If not you'll have to go in. Your allowed to be sad and tired. Just know your being carried by Jesus.
I hope you get some rest soon and update later if anything changes.
=(

Monkey Tots said...

Praying for you. keep your spirits up, Jonah can pick up on that, you guys are warriors and will get through this with HIM!

Janna Lynn said...

Aw...well, I hope and pray that you BOTH feel better as the day continues and that he'll eat better, too! You're in my thoughts and prayers and there's LOTS of LOVE! *hugs*

Rhonda said...

Praying for sweet Jonah and hoping he feels better soon.

Leslie Baker said...

Hopefully it is just that...a cold. And hopefully a cold is not a big deal to an EB baby. My 2 year old currently has a cold and has absolutely no appetite...even for his favorite foods. I hope this is the case with Jonah and that he recovers quickly. I hate to hear that you are down...but completely understand. Stay strong Mommy...he's a fighter just like you are!

Anonymous said...

Maybe it is just allergies to be out yesterday to go to the doctor. The pollen is blowing. Hope he feels better before the night is over. Glad to hear that you & Matt got some one on one time, but I guarantee you the conversation was 100% Jonah. Keeping all of you in my prayers. Praying for a better day tomorrow with the sunshine.

Love to all of you..

Wanda Durham NC

Ronda said...

I hope Jonah feels better soon, and you too. I read your site everyday and your faith really amazes me. Have a happy Easter!

Anonymous said...

What a blessing that you were able to spend some one-on-one time with your sweet husband. It feels so good just to get outside. Is it possible to use a nasal aspirator on Jonah? That may help to open him up to breath better. Or can you use a cool air vaporizor with an EB baby? Sometimes that helps.
Praying for relief for all of you.
Sandy W.

Raising Olives said...

I'm sorry and praying that he feels well soon. Smart to remember the rain, that always affects my moods as well.

Blessings,
Kimberly

Rebekah said...

Oh, I think about Jonah all day. I think we would take his pain on in a second. It just isnt fair. Im so sorry Patrice. You are such an amazing women, and your husband an amazing man. Jonah is blessed to have you as his parents.

Sara said...

colds can be a big deal to an EB baby because you can't suction their nose out like a non-EB baby. Even though you said he doesn't have a fever, what is his temp? A lower than normal temp can be very bad in an EB baby. If its below 97, then there could be cause for alarm. Also EB babies that have blistering in their airway do have great difficultly eating. Is he waking on his own to eat? (even if its a little). If you have to wake him, then that's not good either. I hope he's just tired from his outing yesterday.

Anonymous said...

by the way, the ped's office should have an on-call number that you could call & ask if you should be worried about Jonah not eating? Never, Never hesitate to call them, that is why they are there
I am sure everyone in that practice is familiar with Jonah's history.

Peace of mind would help you greatly.

Love & prayer, Wanda Durham NC again

Erin said...

Oh, you have been through so much and are still going through so much. It is normal to feel down an overwhelmed. I will be praying for God's strength.

Tara and Chris said...

I hope that Jonah feels better soon. My 8 month old is also fighting a cold for the past couple days. I can only imagine your worry. Keep your spirits up!!

Anonymous said...

Praying for you. These things cycle along. All new parents feel this, the weather "helps", he feels bad. Just take care of what you can take care of. Rest in God. So glad that you did take time to go to lunch and shop. A break helps. Keep watch but trust in the Lord. Remember, it is Friday but SUNDAY is coming! I can hardly wait to celebrate!
Jennifer in Southeast, NC

Millie said...

It is so hard to see our babies hurt! I'm so sorry that Jonah is hurting. I'll be praying for both you and Jonah
Millie and Colin-HLHS

Jill said...

Of course you are down. and weary. and frustrated. Thanks for your honest posts. I wish I could hug you.
I love you Patrice and am praying for rest and strength.

Lavonne said...

When I read your last paragraph, I had one thought...your motherhood journey is just beginning. That feeling just hurts deeper as they grow older.

Today of all days you experience the heartache that Mary felt as she watched her Son in pain.

Lifting you up in prayer.

mom2calebnmicah said...

I am so sorry that you are struggling and that it is so painful for you as you watch your littlest member suffer. I'm really praying for you. I check for updates several times a day.

okay...as if you hadn't heard 100 other scenarios and received far too much unsolicited advice...

Since I don't really know any more about your situation then what I have read, and I know far less about your baby's situation than you...I just thought I'd mention something that we went through with our baby who did not have Jonah's condition...

Our little guy got his first tooth when he was very itty bitty and wouldn't eat, slept a lot, cried alot and drooled a lot. It's not very likely and doesn't happen all the time, but I thought I might share our experience to give you another possibility.

When you are parents, it's always something and I wanted to encourage you to keep your chin up. There are so many of us praying for you and your whole family.

God Bless...

teacheroftwos said...

Jonah will be healed in Jesus name AMEN!

Anonymous said...

Awww, sweet, sweet Jonah. Praying he feels better and he able to breathe better so he can eat. Make sure you continue to get as much rest as you can...praying the sun will come out this weekend and make everything brighter!

Gail
Annapolis, MD

JeanneCrochets said...

My thoughts and prayers are with you. Thank you for your continuing faith in God. You are a blessing in disguise.

Jeanne

Donna said...

I am so sorry it has not been a good day today. It is the hardest thing when your child is uncomfortable/in pain not to be able to make that change quickly. (Have gone through much with my almost 16 yr old that has chronic pain issues among other things-not EB- but understand a bit about what a mom feels)Even though you are tired HE will carry you and the many prayers for you as well. I pray that Jonah's dressing change will go well this evening for you and you will all be able to sleep well tonight. Maybe the dreary weather is effecting Jonah as well...tomorrow is a new day...may it be a better one than today.
God Bless you form so cal.

mrsrubly said...

praying for all of you. atleast you got some much needed rest last night. you can pick him up go in the bathroom where's there's a shower and turn it on as hot as it will go. let jonah breathe in that steam. it works better if you can have him sucking on a paci or bottle. that really worked for my 2YO when is was congested. it melts the mucus in the sinuses. good luck. happy easter to you little jonah. i hope dressing change goes great tonight.

Watts Family said...

Are you able to use a bulb syringe and saline drops for his nose. If you can, that will help clear it out. He won't like it when you do it but it will help. Sounds like he is congested. Crazy weather will do it to ya. We are still praying for y'all!!

Many Blessings,

Amanda

The Mind of a Mom said...

This is my first visit to you blog and I have to say your little soldier is a cutie patootie!! It broke my heart that he is in pain, no child should have to be in pain and no mom should have to feel helpless in making her baby feel better. I hope that he gets to feeling better soon
Prayers are sent your way
Take Care
Happy Easter

Anonymous said...

When babies/kid are congested, they do tend to drool a lot. Their mouths are open so that they can breathe...

Continuing to pray for your family!
Lots of love from WI!!

Sara

Hannah said...

Bless your heart sweet sister in Christ... I've been reading and am amazed at how strong you have been through these last several weeks. Praise God for HIS Strength to carry you through times when you feel your weakest.

As we think of His death and resurrection, be reminded that we have access to the same power that raised Him from the dead. Resurrection power is ours through Christ and the Spirit! Praise God!

May your heart be courageous because of HIM! May your home be filled with joy because of HIM! We live because Jesus is ALIVE! Oh that you might be carried today, by HIS strong Hands.

Loving the God who is Mighty to Save!

Sandy Moore said...

We ALWAYS hurt when our children hurt, no matter how old the are. I'm so sorry for your hurting heart today. I hope tomorrow will be brighter for you.
With Love and Prayers
Sandy in King, NC

momma said...

i am praying that jonah will be feeling better and eating more soon!

Stacey said...

I am so sorry Jonah isn't feeling well, therefore, Mommy and Daddy aren't feeling very good either. I will be praying for Jonah to get rid of this nasty bug and start feeling better soon. I'll pray for him to eat better too, the more he eats the better he will sleep too.
Take Care,
<><
WA

Michael and Hannah said...

I've been praying for Jonah for weeks. I'm sorry that he's having a bad day. (I'm a friend of Alaina's)

Marie said...

Hang in there Patrice! We are ALL saying extra prayers for Jonah's health and your and Matts peace of mind.

Anonymous said...

My little man has a cold right now too. I was just on the phone with the ped. b/c I was concerned about his 105 degree fever. Seems she wasn't too concerned...Anyway, as I rock tonight and hold my really "hot" baby, =) I'll be praying for you guys specifically for the cold since we can SORT OF (I know never completely) sympathize with how that part feels at least.
Daisy (alabama)

precious 3 said...

I'm so sorry Jonah is having a tough day. I am praying for his stuffiness/throat/eating issues to clear up. I am praying this minute for the dressing change that I am sure he is in the middle of. I am glad your family is there to help out, and be a support to you. How wonderful! Yay for datetime! Those little blessings can make such a big difference. God is so good, in the big and little things.

Brandi said...

Praying for you guys! And especially little Jonah. trust your insticts. If they say head to the hospital do it! We moms come equipped with a radar that the doctors don't have.

Kelli said...

Sending a hug and a prayer your way!

Anonymous said...

It always hurts when your baby is sad or sick and there is nothing that you can do for them. Hold to hope this weekend as we celebrate this Easter season that no matter what our Lord has risen!! Thank you for always writing from your heart and know that God is on your side. You are aloud all these emotions that you are having it just comes with motherhood. You are loved by those of us who only know you through writing and pictures. Keep your eyes focused on the one who is worthy of our praise, Jesus!! I thank him for you and your family!!

BIBI said...

Hello. I am new to your blog via Mind of a Mom. I will be keeping tabs with Jonah and praying for him everyday.

I am sorry that today was more so or less making you down. It is good that you get to share your experiences with loved ones and friends.

Tell Jonah that he has made nine new friends. I have seven children and one hubby. We will all pray for Jonah in our daily prayer circle before putting on our nightcaps.

Have a great Easter weekend!

The Burgess Family said...

Praying that Jonah (AND his Mama) feel better soon!!!

Anonymous said...

Patrice, you mentioned the other day that you felt more like a Caregiver than a Mom... you are so a mommy thru and thru! You're not just a caregiver, you're also a sympathizer, a translator (for Jonah), a cook, no I mean executive chef, an entertainer, an envrionmental services techinician, a Linen services techinician, a nurse, a wound care specialist, a project manager, a writer, a photographer, and your newest role - I'll type in code to protect innocent little eyes -- the E.B. (not Jonah's condition and per your Target trip)! Yep -- you are all that and more that makes up a Mommy! Only you are a mommy with more talents required than most and you are so good at it - even if you're down because your baby's down...

We're praying for you all and thinking of you often.

Jon and Andrea Hauser

Kallie said...

I'm so sorry that Jonah's not having a good day. And my heart just goes out to you...that complete exhaustion that comes from caring for a infant! And then on top of that all of Jonah's special concerns! I'm a fairly new mom myself...please know that me & my husband are praying for you guys!

His mercies are new every morning...

Stephanie said...

Oh Patrice, I HAVE A BAD DAY WHEN JONAH IS NOT THRIVING... I cannot imagine what it is like as his mom.
I am so sorry. I know you are so weary, scared, and tired.
I am glad the ENT just saw him and gave him a good report. I am praying for immediate recovery from whatever is causing this.

My heart really hurts for you.
I am so sorry.

Michelle in Va said...

Hoping sweet Jonah feels better soon. I have no experience with EB, but it sounds like he is getting a cold. They are so miserable when they have colds. I know my little guy doesn't have an appetite when he feels bad. This could likely explain the hoarse cry the other nite. Sorry for the unsolicited advice, just trying to ease your mind a little. We, as mommies, feel so helpless when our little ones hurt. Praying for sweet Jonah and for renewed strength for you and Matt. So glad you two got some one on one time today. Happy Easter and take care.

WendyBee said...

Dear Patrice and Matt,
Jeff's and my 1st and 3rd sons (all 3 very early, though not technically preemies), were in the hospital with RSV bronchiolitis. (A common, but not always severe viral respiratory infection that strikes within the first year.) The first one was afflicted at 5 mos. of age, and the 3rd at only 10 days old (after 5 days in the hosp. with severe neonatal jaundice). Now 12 years later, I remember quite clearly the torment of having a sick child. I know that my experience doesn't compare b/c there wasn't the underlying threat posed by EB. I guess I just mean that I can relate a little to the emotional suffering of parenting a sick kid.... My prayer, in addition to healing and wellness for Jonah, so he can get on with growing and charming you to "pieces", is for rest and "peaces" for you and Matt. May this new challenge pass, for all of you.
With love and compassion,
WendyBee

Barbara said...

Prayers for your family...

Erin Hingley said...

Patrice,
I am praying as we speak for God to heal your sweet boy. Whenever my son had a cold as a newborn, he gave up eating first. As a breastfeeding mom this scared the HECK out of me! He always tended to replace nursing with sleeping and I just had to keep telling myself that the body heals when your sleeping...over and over again. I know that in your mind you are always thinking about his needs as an EB baby, but suppose this:

Suppose Jonah didn't have EB and wasn't required to eat a certain amount each day. Would you still be freaked out? I'm guessing the answer is yes, but not as much.

Now, what about all the sleeping? Would that worry you if he didn't have EB? Maybe....

Let me tell you, from my point of view on the other side of the fence, that this seems completely normal for a first cold. I know that whenever Sweet Boy has anything additional that it's a million times worse for him (and you, and Matt, and the family), but he is strong and he will fight this off.

It's your job as his mama to worry for him and want to fix everything, but I really think this is just a "baby thing" and not an EB thing.


Hope you don't mind my unsolicited advice. :-/

Lots of love and prayers,
Erin in VA
youmandwipee.blogspot.com

Anonymous said...

THIS IS A BIG HUG FILLED WITH LOADS OF LOVE. AS MUCH AS I CAN FIT IN AN E-MAIL ENVELOPE. I HOPE YOU ALL FEEL WHAT I'M FEELING.
2SHOES

jEnNy said...

Saying a prayer for you & your little family.
One question: Can you use a humidifier? Maybe it will help w/the congestion?

Our family page said...

You are so precious, hang in there!

Cathy said...

Praying for some strength for you both.

Aubrey said...

Oh, it is so, so hard when they are sick. Just simply awful. I hope he feels better soon.

I just had a chance to see the post with the pictures of his nightly dressings, and it does help so much to see what it involves. Thank you! Now we can pray for all the little parts, too. :)

You're all in my thoughts and prayers tonight!