Thursday, August 13, 2009

frustration

Today has been kind of a rough day. Dressing change went okay, but Jonah hasn't been eating well at all. Yesterday and today he's decided that he's only going to eat if he's asleep. That means he'll eat well once overnight, and then before his morning nap, before his afternoon nap, and before bed (but he typically doesn't eat more at these feedings). When we do try to feed him at other times (meaning he's not so tired he doesn't have the energy to fight), he starts coughing (although he coughs all the time anyway) and gagging. And he finally just ate well for the first time today, and then threw most of it up. So at 9:30 we were downstairs doing a partial dressing change - both arms and his chest piece. And now I'm sitting on the nursery floor while Matt tries to feed him again and get him to sleep.

I'm lucky if I can get him to take 19 ounces in a day. The nutritionist says he should be eating 28-30. He's stopped eating solids completely... just cries any time I try it - no matter what the food.

I'm feeling low today - not defeated, but weak. I hadn't been out of the house since Sunday, so Matt kept Jonah this evening, and I ran some errands. Most of the time that helps, but all I could focus on tonight were the perfect little families with their perfect little kids. And then I walked through the baby clothing section, hoping to find something Jonah could wear, but of course none of it will work - buttons, snaps, seams, zippers, sleeves. And it just makes me so mad. I get so jealous.

It's always worse when he's not eating.

I called the after-hours line, and I may take him to the doctor tomorrow depending on how he is tonight and in the morning. To be honest, unless there's a whole lot they can do for him, I don't really want them poking around in his mouth. That just creates the tongue blisters, and that's a whole other problem.

So please pray for Jonah (again). Every time I feel like things are getting better with the eating, it feels like two steps forward, 50 steps back. Instead of feeling like we're making our way out of the woods - heading in the right direction - I just feel like we're walking around in circles, slamming into trees.

With this disorder, there doesn't seem to be much of a forward progression. It's pretty much just keeping your head above the water.

68 comments:

jennypen said...

You are so encouraging to me as a mother/wife/Christian. I hate to see you frustrated. Hopefully it will make the 'smooth' times that much more joyful. Praying for Jonah to be able to eat really well and for you to have peace and comfort.

Cristi said...

Praying for you tonight. In His Name.

Kelli said...

My heart aches for you!! I pray for your family often! Specifically night for your strength to be renewed!!
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.

anna said...

praying for you.

everytime i write that, it makes me laugh. when i was pregnant, my husband got an email from an elder in our church. at the end of the email, he wrote "praying for your baby." although he forgot to type the r. so he really wrote "praying for you baby." so whenever i type or say "praying for you," i want to say baby at the end.
praying for you baby!

Robyn said...

I am sorry Patrice! I am definitely praying for your sweet little guy tonight that nothing major is going on and he is just being stubborn! Praying for a restful night for all and that Jonah will eat by morning!

Anonymous said...

Patrice,

You have such a wonderful way about you...my heart aches for you when you have one of these kind of days. I think I am speaking for many...if I may...when I say "WE" feel so helpless...I know we can pray...and I know that is a blessing to have so many people praying for you and your family but sometimes I just wish there were more we could do for you. Keeping you in my thoughts and prayers...wishing you a great night of rest and rejuvination.
Wendee in Lewisville

Sunny said...

I am so sorry. :( I want to tell you that my kids never ate that 28-30 oz. Mine hovered around 20-24 at max. mine had severe reflux and did the whole exorcist vomiting. Neocate formula (amino acid based) was all that they could tolerate. It is expensive, but WIC covered it for us.

Have you had extensive allergy tests done? milk allergies cause some of that discomfort that causes kids to reflux and have food rejection. my daughter's constipation and reflux finally resolved after removing wheat and dairy. not sure if any of this helps you, but try not to focus too much on the ounces as long as he is peeing regularly.

Shari said...

My heart aches for you! I am praying and storming Heaven's gates on Jonah's behalf. I wish I had better words.

Becca B. said...

Promise to pray hard for Jonah (and you and Matt). Thnking about you all from Arkansas.

Tricia said...

I am praying for you tonight that you will feel His loving and capable arms surrounding you. That even though you are in the midst of a raging storm, you will feel safe and comforted in God. That you will KNOW you are not walking this road alone. And that you will have sweet rest tonight. Of course, I am also praying that Jonah will eat and is not sick. God bless.

froggieang said...

I'm so glad you are honest with your blogging, it helps us know exactly how to pray for you guys. Question- from all your research, have you found where patterns can be purchased to make clothing for Jonah? I have and interest in helping but can't seem to find a pattern on exactly how to make the clothing so it would not bother or irritate him. Please let me know if you have this info. Froggieang@aol.com I work in Kernersville and often think of you while I am in Target, I smile when I remember some of your "Targetaholic" postings. PS I was getting my oil changed and looked over and saw one of Jonah's magnets on the outside of a carwash in Kville. I turned to my friend and said "look, there's one of Jonah's magnets"...we both read your blog daily and are praying for you all. Don't worry, I am already sporting my magnet. Be still and give it all to God, you have an amazing strengh. Love and prayers!

Ronda said...

Patrice,

sorry if this is a duplicate comment, blogger keeps messing up on me! anyway, i just wanted to say that lots of new moms worry about how many ounces their babies are getting. I don't know anything about EB except what I've learned from you, but I do know that Jonah doesn't know he's supposed to eat 28 ounces a day. So maybe today he just wasn't that hungry? Just hang in there and try not to worry so much. you do a great job everyday and Jonah's so lucky to have you. Praying for you both!

Rose said...

That is so hard! Perhaps he is having a cog growth spurt- which usually makes kids eat tons less? How is his growth? Hang in there, praying for sweet Jonah.

Elissa said...

i, too feel that sense of wishing there were more i could do than pray. but i am doing that now...for rest, comfort and peace!

Stacy aka Fahiima said...

You are such a great mom.

Carrie said...

If I knew you, I would so give you a hug right now! I'm sure nothing I say can help you feel better...so I will just continue to pray for you and sweet little Jonah. One day at a time...

The Allen Family said...

My son has acid reflux & we use the Dr. brown bottles & for some reason when we put some mylicon in his bottles it seems to help. Either that or I just think it does! Also, Dr. Brown makes a pitcher that you can use to mix the formula in & it helps eliminate gas bubbles and so forth.

Also, some babies dont want anything to do with solid food or eating in general when they are getting a tooth in. Maybe he is just getting a toothie! :) Brayden would cry when i tried to feed him solids & would not sleep well at all. Then a few days later, I felt his first tooth trying to pop through!

We are thinking of you & praying!!

Sabrina said...

I am so sorry that you are down! I can not truly imagine what you have go through and witness on a daily basis. No one could go through this and not feel jealousy, Jonah will probably have a lot of moments where he feels jealous of other children. You will be great at helping him overcome them, with your experience. Sorry if this isn't comforting, just trying to find a bright side to your feelings so you don't feel guilty about them tomorrow. I will continue to pray for Jonah and you. I am so sorry you both are having an extra rough day.

Laura A said...

Hi Patrice-

I'm so sorry it's been a frustrating day for you. I'm sorry that Jonah won't eat. Again, I won't even pretend to be qualified to give you advice, but I will say that my oldest (Caroline, who loves Jonah SO much) used to worry me about eating, too. Her doctor told us she should have a certain number of ounces a day, and most days we didn't come close, or she'd just throw it all up. Finally I realized she knew what she needed and let her eat when she was hungry. But Caroline doesn't have the same issues Jonah does, so I don't know if you can apply the same principles or not. I'll just pray for you to have wisdom on what Jonah needs, and that anything that may be hurting him internally will stop.

I wish I could come and give you a hug, but know that I'm praying for Jonah and for you and Matt.

Love from TX!
Laura

PS - we were at Target tonight, and of course I thought of you!

Angela said...

I'm so sorry. I will pray for you and Jonah tonight before I go to sleep.

Anonymous said...

Thanks for sharing your needs with us. This doesn't sound quite right but it makes it so easy to pray for all three of you. You're in my prayers.

Anonymous said...

Hey Patrice,
I think about Jonah often during the day and I read your blog every night. I'm not sure exactly how I found it but I'm addicted to that sweet little boy of yours. In a way I kinda know how you feel as far as being jealous of other mothers. I have two disabled children. My oldest is 9, and didn't walk until he was 4. I homeschool him because of problems we had in public school. We have no diagnosis at all for my oldest son, his name is Kolby. My youngest son Kameron is 5 years old. And only tops the weight chart at around 32 pounds. Which makes me worry all the time. He has mosciac down syndrome, and is being tested for other stuff also. He is missing a small part of his brain, which we thought to be joubert syndrome but come back negative. He is not walking, crawling, talking, or eating table food yet. He still drinks from a bottle and eats a little baby food and yogurt.
I know this has nothing to do with EB. But I just want you to know that I really look up to you. I want to scream sometimes when I see other mothers with there babies. Not that I want there's to be sick. I just want mine to be healthy. I think the ones it hurts the most to be around sometimes is my family. Don't get me wrong I wouldn't trade my babies for all the healthy ones in the world. And I know you wouldn't either. But I do wish that both of our babies had easier lives. I sometimes have asked God if he is punishing me for something I have done through my babies. And even through I know he isn't I still ask when I'm feeling really low or having a bad day.
Sorry I rambled on so much. I have never posted on you blog before, but I pray for all of you daily. And I just want you to know that Jonah is so precious and such a special little boy. And You and your husband are wonderful parents, and Jonah is so blessed to have you both. And I know that you both feel so blessed to have him as your sweet little boy!

kathunt said...

We'll be praying for you guys!

Shannon in Mn said...

Patrice,
Wendee could not have said it better. My little guy never at the amount recommended either. I had the bottle battle as well. Noah just did not like bottles, at all. I tried every bottle and nipple I could buy. Once they can feed them self it seems to get so much better. Try to reach for the light at the end of the tunnel. We all are storming the pearly gates with so many prayers.
Love always!!

Rachaellh said...

Patrice,
I am lifting little Jonah up to the Lord tonight. I pray for rest for all of you tonight. It's amazing how much better things are when everyone gets a little sleep. Praying for Jonah to continue to gain weight. Thank you for continuing to share your joys along with your frustrations. All new moms worry so much and I can't imagine what you go through every day. After my daughter passed away I avoided all places with anything baby related and let me tell you I missed Target so much! I was telling my mom about the type of clothes that Jonah needs and I just started to cry. I know it seems silly since I don't know you, but I feel like in a strange way that I do. I wish so much for Jonah to be healed. Hang in there!

Kat and Crew said...

I want to scream for you! Praying Jonah EATS EATS EATS like a crazy man tomorrow!
I know this is a wild shot, but could teething be any of the problem? Both of my kids stopped bottle feeding and solids when their teeth were bothering them. I know there are so many other posibities with him having EB its hard to know whats going on. Good Luck and God Bless.
We'll keep the eating prayers coming your way.

amber said...

Praying...*big hugs*

Lorraine-bo said...

Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise. - Jeremiah 17:14

Almighty Father in Heaven,
We praise You that You are not surprised by what is going on in Jonah's body. We praise You that You promise Matt & Patrice in Your Word that You will fulfill Your purpose for Jonah and You do not abandon the works of Your hands (Psalm 138:8). Would You bring Your guidance, comfort, and peace to them tonight, O LORD? Would you bring rejuvenation to them and healing to Jonah? In faith and love by the POWER of JESUS Name! AMEN!

Katy said...

Praying for you and Matt, and you precious boy tonight.

"Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with my righteos right hand." (Isaiah 41:10)

The Simmons Family said...

Hey. I don't know if I ever commented, but I read every single post and I pray!! I don't know anything about EB, other than what you write about. I can't imagine the daily frustrations you feel, but you choose to look at the bright side. :) It's inspiring.

My little guy was born with 1/2 a heart and after several open heart surgeries is waiting for a new one. We're always treading water and he'll never be healed. We have that in common.

Some days are better than others. Owen has had that darn NG tube up his nose for 18 months now because he only eats two bites at a time. He has no endurance due to the lousy heart. Anyway... you are doing great!! I love your sense of humor. You find joy in the little things. Jonah has a special place in my heart. He is precious.

Today sounded rough. Tomorrow will be another day. A better day. Always praying for Jonah.

Andrea
owensheart.com

jardinera linda said...

it's sad to read posts like this one tonigh, i'm sure we all hope we could do something better than write a comment or pray to help you through. but there isn't. we can just let you know we think and care about you, and hope this will make you feel better.

At nights like this, i always repeated myself this thought, over and over: "mañana será otro día, mañana será otro día".

Tomorrow will be another day, you will start anew. It soothes the pain, a little.

¡Ánimo Patrice, mañana será otro día!

Sara said...

Prayers for that sweet baby boy of yours, I hope he starts eating a little better by tomorrow. Prayers that you will be comforted by all the love and support you have here, and above.
Lots of love from Texas~

Tribulation said...

Jonah,
I am praying for ya little man, hope ya feel better soon. your momma sure gets worried about you and that's ok. moms are supposed ta get worried. my mom was worried about me too when i fell and got hurt when i was little. she was WAY overprotective and wouldn't let me do alot of things on my own for a while. but we worked it out and now she's even letting me eat my cheerios with milk and a spoon. i know it seems like things are rough, jonah, but you have to remember that God and Gabe and Jesus are all watching out for ya. and you realy need to eat to grow big and get strong. but i am praying for you and your mom. because moms need prayer too,so do dads. and that's ok, specially, if they know who is by their side always, and that is God. well, goodnight jonah and family. it is WAY past my bedtime and i need to sleep.

your friend,

Zachariah, tribulation's 2 yr old son.

Anonymous said...

I pray for Jonah and you everyday. I am so sorry that today was difficult and painful for you as your heart aches with the suffering your precious son goes through. Thanks for openly sharing with us the prayer needs so that those of us in this blog world can lift you all up before the throne of grace, to our almighty Lord! Wish I could help you there but prayer is what the Lord would have us who visit you through this blog do to minister to you.
Thanks for all the darling photos of sweet Jonah too!! LOVE them all!!!
Luann in WA

jackie said...

I'll put little Jonah in my prayers!
Has the weather been hot? Maybe he is just not really hungry. Its frustrating and hard to be a mommy, because you have to know how to fix everything. Having an EB baby, must make it 1000x's harder. Stay strong, and positive. And soon Jonah will start eating more.
And on a lighter note, go get some Chick-Filet tomorrow!

Fat Mama said...

It's okay to be frustrated. God understands and we all do.
My heart aches for you! I will pray an extra prayer just for you tonight.
Keep your head up! He is still so beautiful!

Anonymous said...

Your gorgeous baby IS perfect! Well, none of us are, but he's as close as you can get. Praying for your wonderful family.

Marie said...

Sorry to hear you're having a hard time. I know he's not eating as much as he should, but take heart in the fact that he IS growing, and he's got some chubby cheeks on him that prove he's not starving just yet! You also know from past experience that he goes through these stages (actually all children do) of not eating, then he picks up a little.

I totally get how you would be jealous of other parents. I guess I'd say - most of those parents just take their kids for granted. Parents like you appreciate their kids so much more because are grateful for every milestone. Also I guess you never know what those people are going through...maybe their lives aren't really so perfect!

Anonymous said...

I'm praying several times a day for Jonah. I'll add in prayers for him to eat the amount he needs. **HUGS** ~Jessica

ashpuck said...

I hope Jonah feels better and that your spirits are higher today. I'll be praying for you.

~Ashley

Staci said...

Praying for your family always. One thing I have found that all the advice you get from doctors/nurses and all the books and articles is great...except, the babies don't listen to that advice. They don't know that THIS is what they are supposed to be doing at THIS time. I'm sure it is harder for you not knowing if days like this are due to his EB or just normal baby stuff that he would have been doing without the EB. Praying for your continued faith and for peace in knowing that you are doing the best you can do for Jonah. Worry and frustration go along with the "Mommy" job...I'm so sorry that yours is magnified due to the EB.

brightleigh said...

Patrice,

We haven't stopped praying for you all since before Jonah was born. The fear of the unknown is something that goes along with parenting an infant. It is frustrating, no doubt, but you will get through it. He will eat when he is hungry, and I know you are worried that he won't get the amount he needs, but I can remember Seth not eating the amounts he needed all the time. And looking at the comments on here, I see he and Jonah are in good company. Also, many of the commenters have suggested that teething could be the issue. This could be a possibility and not eating is Jonah's way of dealing with it. You just do A LOT of guessing and theorizing when you are a parent of an infant. I also took Seth to the doctor my share of times and ended up paying for peace of mind. You are a wonderful mama and you are doing a fine job. Jonah and Matt are so fortunate to have you. Love you much.

Kristen said...

"And they were bringing children to him that he might touch them, and the disciples rebuked them. But when Jesus saw it, he was indignant and said to them, “Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” And he took them in his arms and blessed them, laying his hands on them.
(Mark 10:13-16 ESV)

He is holding Jonah, and knows your frustration. I'm praying for you.

bluedotmom said...

praying for you all...

SS said...

Patrice, I had a very bad eater. he wouldn't even eat 20 ounces a day at 7 or 8 months. Sometimes he would barely take 15. It was very frustrating and made me nervous- we watched him drop from 50% to 25% on the weight charts (while his height was 99%!) Know that babies do go through periods of several days where they just won't eat. I know the EB nutrintional needs make this even harder. Hope by this weekend everything is back to normal.

Heather said...

I know you don't feel like you are, but you are such an inspiration to me and I love you for it.

I'll be praying extra-special hard for Jonah's eating and his sores, for your frustrations and letting go, and for all of you to get the rest, renewal of strength and peace you so desperately need.

Heather said...

I'm so sorry, Patrice. I cannot even imagine how frustrating this can all be for you guys. You just want your baby to be healthy! My son has severe reflux and would stop eating solids and stop some of his bottles when he teethed? Can you tell if Jonah's getting some teeth?
Praying that whatever is bothering him stops immediately and that he becomes a little piggy. My heart is broken that you have to go through so much, but I pray God give you new insight and hope.
Heather
SC

Kristi in CO said...

(((hugs))). I will say some extra prayers for you and Jonah today. I can't imagine being in your shoes. Hang in there.

Rachael said...

I don't know if you have checked out Jimmies blog. (I am his mommy) He was a 24 week preemie, While I don't deal with the blistering. Jimmie is also not eating well at all. He takes about 12 to 15 ounces and should take 20 to 21. What I do get down him is mostly with a fight and a struggle. He is falling off his wight curve and not much can be done untill he proves he is losing to much. I am praying for Jonah. I feel some of your pain.
Rachael
racheudaly@yahoo.com http://rachaelsupdateblog.blogspot.com/

Lauren said...

I understand some of your frustration. My daughter who was born weighing 1.5 lbs. is such a picky/finicky eater. Since she was so little when she was born, we are obviously always trying to pump as much formula/solids in as we can, but she just seems to be more interested in other stuff. She went through a 2-3 month period where she would vomit whole bottles or solids. She apparently has a very sensitive gag reflex. She's 11 months old and we still fight with her to eat solids. I'll be praying for Jonah!

Anonymous said...

PRAYING!!!!!!!!

LOVE ERICA

Misty said...

Praying for you sweet Patrice. While I don't understand your situation, I do understand frustration on many levels. God can handle our questions and our pity as long as we don't wallow in it - He has so much more planned for us, so much BETTER than we realize. You don't take one single moment for granted with little Jonah...God will bless you for that. He really does love you...

Frugal Fine Living said...

I just found your website from your button on another blog (Joy). Lifting you, your husband and that precious baby up in prayer! I am grabbing your button to add to my site.

Jane

Kirsten said...

i think it's awesome that you feel you can be honest about the good times as well as the bad on here. we are thinking about you and praying for you all the way up in Washington state.

Karen said...

Could he have some kind of a feeding tube?

If this is a stupid question, I'm sorry! I know nothing about all this.

Coco said...

Patrice,
While my oldest refused all baby food in favor of table food by nine months, my second refused ALL solid food until after a year! He would take it eagerly for a day or maybe two then suddenly start crying and refusing it. I felt like we started and stopped a million times.

My oldest also had severe food allergies as an infant. I can't tell you how many tears I shed watching kids eat cookies and other things he couldn't have. His was a "hidden" disability also which I know sounds selfish but meant that there was very little empathy. I felt very alone and very angry about the things he would miss in his life as a result. Not to mention all the adaptations and changes in our life that came with it.
My point is just to say that you are normal! Even with relatively healthy babies I went through many of the same emotions you seem to deal with. Don't beat yourself up for it. Just let the emotions out, cry when you see those "perfect" children then go home and just see Jonah's smile to remind you that you wouldn't want any of them when you have him!
I've rambled enough but know that you are being prayed for and thought about frequently! Hang in there...

Country Roads said...

Praying that Jonah has a better day. Sending prayers for you and Matt too.

Anonymous said...

I just bought my Jonah magnet and currently Praying for Jonah is written in chalk on our driveway! I know that you hear this all the time and have trouble believing it, but you are such an encouragement to me. I know how much I struggle with the simple things in raising my "perfect" children and can't imagine how I would be able to handle your daily struggles. Being a mother is the hardest job on the planet anyway and having an added issue such as EB just makes it that much harder. It always seems like a guessing game to figure out why they are spitting up, why they aren't sleeping, etc, etc. Please take comfort in the fact that you, Matt, and Jonah are VERY prayed for and very loved. I read your posts every day and every day I wish there was more that I could do for you. I think we'd be friends if we met in person....(I love Target and think I go about 3-5 times a week and Chick fil a is the ONLY fast food we eat!) plus my baby boy reminds me a lot of Jonah (They are 1 month apart). I really hope that today is going better for you and that Jonah is getting exactly what he needs. Praying for you as always!
Terah from Sarasota, Fl
PS Jonah is absolutely perfect! (or at least as perfect as my kids!) :)

Heather said...

Prayers for you this afternoon! I hope your day has been better today.

chinamoon1420 said...

I am sending you a big hug and I am praying for you and for Jonah.

Laura said...

Praying for you now....I am so sorry the forest is so thick right now.

Wish we really knew eachother and I could come and just laugh and cry with you.

Sending love!

Lauren said...

hoping everything went okay today. i've been thinking about you guys today and praying for you.

big hugs--i miss you!

Michelle said...

Patrice, I just want to offer you a big cyber ((((HUG)))). Your honesty is one of the things that I respect so much about you. God bless you and bring you some peace. Prayers for Jonah as well.

katrynka said...

So sorry that things are so troublesome. I totally understand the jealousy. I am 45, and have never gotten pregnant. There are times when it is really hard to see someone with their baby in the store etc. And when people abuse their kids, or do not appreciate them, that is the hardest. Jonah is so very lucky to have been born to parents with the emotional resources and family help etc to be able to give him their all.

Anonymous said...

When I am at my weakest as a mom---worried about things I cannot change---I am reminded of how brave and courageous you are! I know that GOD is big enough to get you, Matt and Jonah throug this rough spot! My 11 year old daughter and I read your blog daily together and pray together for you. You have been such an inspiration to us both to continue to see God!

Tasha said...

Hang in there, the eating will get better. My son, now 2, was the same way he hated eating. We had to get him to sleep/almost asleep to get him to eat. I felt like there was no other baby in the world who didn't want to eat...eating I thought would be one of the easy things. I will continue to pray for your family. I'll especially pray for Jonah's eating to improve.

Anonymous said...

No you don't know me and we will never cross paths, but i have been saying our prayers for you and your family everynight.

Kelly Rose said...

You have every right to feel frustrated...and every reason to be hopeful, too. Jonah is thriving in your care. I hope for more good days than bad for you.

Regarding "perfect" families...let me reassure you that there are none. We all have our issues. There are plenty of children that look "normal" and believe me, they are not. Jonah IS perfect for your family. He was created to be just who he is, just as he is. Take comfort in that, Patrice. Things will get better for Jonah and for you. :)