Thursday, July 16, 2009

catching up

So glad all of you are back. Apparently when I posted the pics of Jonah's first time on the beach, for some reason, that messed the blog up. I could still view it, some of you could still view it, but many were having problems. I have NO idea what it was in that post that threw everything for a loop... it was just a picture post. You could still view it just fine with Firefox or some versions of Internet Explorer, but most IE users couldn't see it anymore. Don't ask me. So anyway, I took that post down, and all is right with the blog again... except that it is missing one adorable post of one adorable baby and his first time on the beach. But anyway, glad to have you back. Sorry for the problems.

Jonah is trying to sleep through the night now. He slept all night five out of the eight nights we were away, and he slept all the way through last night. If he can eat enough before he goes to sleep, he'll make it all the way through, but this week has been an extremely rough week on the eating front. I'm so discouraged and completely frustrated. He used to take one to two ounces before he started screaming and fighting, but now he's screaming within the first five minutes. Sometimes he'll only take about five sucks before it all goes to pot. I don't know if it's reflux or lactose intolerance or an allergy to the milk protein or internal blistering... but it is driving me crazy. Really. Crazy. I'm tempted to just try the Alimentum formula and forget the breast milk end of things, but I'm so torn. I mean, if he's having trouble with milk, then I need to let it go, but we've kept infection away for so long, I just worry about stopping the breast milk. But then again, eating is better than not eating, and the struggle it is for him to eat probably does more harm than good. I certainly don’t want to cause him more pain. I just don't know. I've been in tears about it all the last couple days and have given God a pretty big piece of my mind about it all too. I’m going to try just formula today and see if that makes a difference. It makes me sick that I can’t give him what he needs.

On the diaper front - I'm now using disposables with the elastic cut out inside the cloth diapers. Joy. All the hassle and mess and laundry of cloth diapering while still having to spend money on disposables. It's like the eating thing - all the time and hassle of pumping while still having to buy $25 a can formula.

Can you tell it's been a rough week?

Sorry to be such a downer today, but you guys know this blog goes both ways. I'm not much into sugar-coating things. And some days, as cute as Jonah is and as many smiles as he gives me and as much as he lights up my world - I still get ticked off at the unfairness of it all. But please, please pray for the eating situation. I just feel like I'm reaching my limit and if something doesn't give, I'll go nuts. Literally. We have another GI appointment in a couple weeks, but if moving to formula doesn’t help things, I’ll probably try to move the appointment up.

The beach was fun and more relaxing than our “normal,” and it went a lot smoother than I expected. It wasn't really a typical beach vacation, but I did get to pass Jonah around a little more than usual and Matt's parents would keep him for us in the afternoons. So mostly for me that meant longer showers, getting to read a book, and putting on make-up. The highlight of the vacation: brushing my teeth before 3pm. Just kidding. (Well, kidding about that being the highlight, not so kidding about what time it is before I normally brush my teeth. Disgusting, I know.) We got to go out to the beach a couple times, and one afternoon, Matt and I went to the outlets and did a little "now that I'm finally skinny" shopping. We did spend about 15 minutes in the hot tub one day, but it's a little less relaxing when all you can think is, "I definitely have to take a shower before I can even think about touching Jonah after sitting here in this cesspool of germs." Once the hot tub becomes a cesspool, it's not quite as relaxing or romantic as you'd hope it to be.

I finally went grocery shopping last night. Besides picking up a few items here and there, I haven’t done a big grocery trip since before Jonah was born. Our fridge was pretty empty to say the least. Matt kept Jonah while I went, and I probably spent two hours getting everything (after a stop-off at Chick-fil-A to get a large sweet tea to help sustain me through the task at hand… speaking of Chick-fil-A… Oh, man… the Chick-fil-A sauce. Thank you, Thank you for introducing me. I had no idea what I was missing. I was so unschooled in the ways of Chick-fil-A, but I have learned the error of my ways. Is it bad that I want to value-size my fries just to have more of something to dip in the sauce?)

And finally, on a more serious note, I, along with so many others, am missing Paul today. His service was at 3:00 this afternoon. I didn’t get to go, because I didn’t have anyone to keep Jonah, but they presented live through a webcast here. I would encourage you, if you knew Paul, but were unable to attend his service, watch it. It was beautiful and funny and full of praise and worship… just the way Paul would have wanted it. And if you didn’t know Paul, but would like to know the kind of man he was, I would encourage you to watch it too. The recurring theme of the service: Paul’s passion in life was to really SHOW the love of Jesus. He never stopped living for Christ, cared for people fiercely, never ran out of room to love just one more person. And as his sister said at the service – he was a pretty big guy, but he needed to be that big to hold such a huge heart.


Patti said...

Praying for the eating situation. Jonah has a very special place in my heart and my 10 month old and I pray for him often. Praying that he will be able to digest the breastmilk and get the nutrition that he needs and the antibodies to fight off infections! But most of all, praying for HEALING!!!!

SS said...

Hi Patrice. Glad to hear about Jonah's sleeping. I think you should talk to the doctor about teh breastmilk and how mcuh of a role it will play in keeping infection away. I am not sure they understand 100% how that works- so don't want him suffering through eating and eating less for breastmilk that might not be providing as much protection as you think. Good luck figuring it out!

Wanda Wilkinson said...

Welcome back. I enjoyed all your beach posts & love the pictures. I hope you are/were able to get some of them printed for you to keep.

Wonderful to hear that Jonah is sleeping, better sorry to hear about his eating problems. Praying for his feeding times to get much better, real soon. Glad you were able to enjoy your vacation.
Also, praying for your peace of mind & less stress.

Many prayers & a lot of love sent your way.

Jennifer W. said...

Sorry about Jonah's difficulty eating. I will pray about it specifically when I pray for Jonah. I am glad to hear he's sleeping better-that's wonderful. My one year old still doesn't sleep all the way through. I loved the pictures and wish you hadn't had to take them down! At least we got to see them first. And it's good to know that y'all had a good time at the beach-at least you and Matt got to spend some time alone.

Kelsey said...

What I love about reading your blog is that you are always so honest and say (type) what is on your mind. I am sorry you are having a difficult time right now. I can't imagine how exhausted and frustrated you are. I don't even know you but I wish I could just come over and help take care of Jonah for you so you can have more "Patrice" time. I have two kids and when I get frustrated or tired the best thing for me is getting some alone time and then I am able to deal with the day to day stuff better. By the way, that's awesome he was sleeping better, yay! Anyways, take care!

Sara said...

When Sami was an infant her pediatrician told me that breast milk helps with immunity against viruses,colds, flu, etc... and but doesn't provide a heck of a lot of immunity against bacterial skin infections especially after the first 3-4 months. But I would still ask Jonah's doctor about it before you change anything. Sometimes insurance companies will pay for formula if its medical necessary.

Anonymous said...

I've been following your blog since the birth of Jonah.
I am a Medical in a clinical laboratory, and sometimes have phlebotomy duty. I've been thinking about your nightmare of a visit. It occured to me, that when I draw blood from elderly patients with very fragile skin, that I try to tie the tourniquet around their sleeve..and then not terribly tight. I would never mind if a family member approached me with information about being cautious. Maybe you could have a "sleeve" of some soft fabric with you the next time....and insist that the tourniquet be placed over that. Another thing I do with infants, is to cut the tourniquet in half length-wise. It was always helpful to have one the right size.
Just a couple of suggestions.
I'm sorry that your experience was not better.
JoyLynn Edwards

Samantha @ the Listener's post said...

I hear ya girl on being torn about starting formula. I have two boys, and was unable to nurse either of them very long. With the first I had double mastitis after about 6 weeks, and the second was allergic to any milk product that I drank or ate (no kidding - I accidently ate A bite of a cheeseburger after I started the no-milk diet and he gave dinner back projectile-style). It's a tough, emotional choice to make because it's so hard to give up that special relationship with him that no one else in the world has. It does feel a little like you're "failing" if you can't give him something that seems to come so easily and naturally to other moms, but be encouraged that you are still giving him everything he needs - and in a way that no one else can. You are his only mama and he's gonna love you and need you just as much no matter what!

I know it's tough (and I know that sometimes other people around you might not understand how tough it is), and I'm sorry that it's a decision you're facing. I will be praying for you, and I know that the Lord will help you do whatever you need to do for Jonah's best benefit.

Hang in there - you are a great mom, by the way!

Dana said...

Please don't be too sensitive to this comment but as a one time "first time" mom, I remember "first hand" how easily a baby can sense your stress and frustration. It's just that baby/mother bond. So maybe Jonah can sense your anxiousness at feedings and it ruffles his feathers. And this week was bound to be hard after having all that family around to love on you and Jonah. And to make the time pass pleasantly and quickly with lots to do and talk about. It's hard after vacation, and given your situation, give yourself a break on easing back into life at home:)
That sweet tea had to help you along:)))
Know that our God is big enough to handle it all. We'll just keep asking<3 Hug for your baby bird!

The Gieses said...

Patrice, Thank you so much for the webcast for Paul. We were at the service but didn't get a chance to see all of the slideshow pics before and after. What a blessing his life was. He was larger than life, "outrageous" and will be greatly missed by all.

Melissa said...

Patrice, I will be praying for you and your decision of whether or not to continue with the breastmilk. It is incredibly hard to stop breastfeeding because of the emotion it involves. It's mommy guilt and it's ok to feel that way. I still felt like that after 13 months with my daughter. My son only got bm for 6 months and it was so hard to stop but he actually did better with formula. Hang in there.

EdwinsonFamily said...

I haven't endured your struggle, but I have experienced a my son and a struggled with eating issues because os reflux. I'm a HUGE breastfeeding supporter...BUT I have to say....its REALLY exhausting to pump, much less pump THEN have stressful bottle feedings. That alone can wear a momma down BIG TIME. You've given him a great gift for a good amount of time. IF you decide it's working best with formula, don't beat yourself up. AND also realize that every momma mourns a bit when babe is no longer drinking her milk. I know I was sad....but it didn't take long to get into the swing of a little more freedom!
Praying God guides you gently.
Take care, Joy (in Kansas)

Anonymous said...

Not sure if it applies to Jonah's special infection risks, but my first son was premature, had horrible reflux issues, and was found to have a dairy allergy as an infant. Our pediatrician told us that a mere tablespoon of breastmilk was power-packed enough to provide all of the immunities our son needed daily. We spent his first year feeding him Alimentum, making sure that he received 1-2 tablespoons of breastmilk each day too. I can honestly say that he seemed to be sick less often than the breastfeeding exclusively friends that he grew up around. Could have been a fluke, but we always believed in our hearts that it was that 2 tablespoons of immunity that he received each day :-) The Alimentum really did make a difference in feedings/digestion/reflux issues for us. And the 1-2 tablespoons of breastmilk wasn't enough to cause any major discomfort.

As for getting a discount on the alimentum...since you are a Target lover, they offer the Target VISA which allows you to earn a 10% discount shopping pass monthly. The card can be used anywhere and you just need to acquire 1000 points in order to receive the shopping pass each month. I know people who use the Target card to make all of their monthly purchases and then pay it off in full each month. It ends up costing them nothing and they earn the 10% discount on a monthly basis. If you purchased the Alimentum on a monthly basis you would be able to save tons of money with the 10% discount. And the 10% discount would also cover diapers, groceries...pretty much anything else you shopped for on that day. The best part is that the 10% off discount can be combined with rebate checks and coupons too.

No matter biggest point of advice is to do whatever keeps you, Jonah, and your husband sane. Mothers can drive themselves crazy trying to be "perfect". It is obvious that you love your son with all of your heart. I truly believe that it is that love that "feeds" him best. Praying for your family daily.

Shari said...

I will be praying for Jonah's eating situation. I hear your frustration. And please, Patrice, be easy on yourself if you can't continue to pump or he can't tolerate your milk. The Lord will protect Jonah! I know what you mean though. I had that big decision to make with our youngest when he was so ill. Blessings to you for a better day!

Laura A said...

Hi Patrice- welcome back! We've been on vacation too and I'm just now getting back into the swing of things.

So glad he's sleeping through the night - will pray that it continues! I know how frustrated you are about the eating situation, and I'll pray for that too. Again, I'm nowhere near qualified to give you advice, but I'll just say that even if you have to go "all-formula," that you are giving him what he needs. I'm guessing that eating is also what he needs to fight infection, too - but I know how torn you must feel. I'll pray for you to have peace in whatever you need to do for sweet Jonah. You are a terrific mom!

Anyway, SO glad you love the CFA sauce - it's one of my faves, but my husband hates it (he's goofy that way!) Don't know if your CFA is doing this, but the one near our house is doing "sweet tea Fridays" - FREE sweet tea every Friday! woo-hoo!!

Please give sweet Jonah a big kiss from me, and from my Caroline (she saw all the pics and LOVED them!)

Love from TX!

Tricia said...

It is like I have a million responses to your post today, but bear with me. Cut yourself some slack, please. It is hard and tiring to have a SNC. It is daily. It never goes away. Add to that the exhaustion that comes after a wonderfully relaxing vacation. And then add in grief. Grief becuase you lost someone you hold dear and (probably I am guessing) all the bottled up grief about Jonah's needs is seeping out along with it. So, give yourself time. Cut yourself some slack. Tomorrow will dawn a new day and maybe it will be easier. Maybe it won't. But you will have new grace from your heavenly Father to see you through. I am praying for you. God bless.

Kelsey said...

I left a comment earlier but I forgot to say this. I am so impressed that you have pumped for this long. It takes a lot of time and commitment to do that on a regular basis. Whatever your decision is on whether to continue or not is YOUR decision and you are only doing what is best for your sweet little boy.

Heather said...

Praying for wisdom for you on the eating. Sometimes it's so hard to know what to do.

Jen in Florida said...

I haven't commented before, but our family prays for little Jonah every night. I just had to comment on the chick-fil-a sauce, as I too am a junky. I actually ask for a few extra sauces every time I go, then if it's been too long since I've been to chick-fil-a I can heat up some frozen nuggets and dunk away.

The Charles Crew said...

i will continue to pray for jonah and the eating issues. i have tried contacting you regarding the alimentum, as i have several bottles of the ready made and a can of the powder i would love to send you that i am no longer using. please contact me {} so i can know if this is soemthing you are interested in, i know how expensive the formula is.
jonah's eating issues sound so similar to my daughter's. we tried several different formulas until finding the right one-neocate. will be praying!

Jenni said...

OMG! That sauce is the best! I dip my fried in it too! I could drink it with a straw!

Suggestion: have you tried switching the way you hold Jonah while he's eating? or tried switching rooms, or maybe even popping a video in so he's a little distracted while he's eating?

Elizabeth said...

Patrice, I was thinking about your breastfeeding/pumping situation. I have a 10 month old, and have nursed/pumped from the very beginning, even when my daughter was in NICU, and I couldn't have done it without the support of Forsyth Medical Center. Am I right that you delivered there too? Anyway, they have a nursing mothers support group that meets the 1st and 3rd Thursdays of the month in community room 2 in the Sara Lee Women's Center at 10:30am. It is GREAT on so many levels. First, it gives you a place to meet other moms who are there for support (a lifesaver!). Second, you get to talk FOR FREE to a lactation consultant. Third, it's a hospital=as sanitary of a public place as it gets for Mr. Jonah! Feel free to email me if you want more details-- this group has been a real blessing for me and many of my friends.


Amanda said...

They don't have Chick-Fil-A anywhere nearby here. Which is so sad! Your post made me really want a big lemonade and some waffle fries. Mmm.
I'm praying for you guys tonight. Eat, Jonah. Eat! There's way tastier food in your future. ;)

Sandy said...

I pray that Jonah will eat, eat, eat. I pray that he will get no infection, no new blisters and complete healing for his precious body.

My heart aches for you Patrice. I know what it's like to cry for your child, to feel helpless in a situation, not knowing what to do for him or which way to turn. My prayer for you as a mother is that God will give you wisdom to know what to do ALL THE TIME.

Love and Prayers,
Sandy in King, NC

Anonymous said...

I can totally relate to your feelings about stopping breastfeeding. With my little girl I breasted her until she was 20 months and it was very important for me. Now with Anthony, we had so many issues with his dairy intolerance. I did cut dairy out of my diet but I couldn't keep weight on and neither could he so I finally just had to break down and do Alimentum at 6 months old. I felt really bad and guilty about it, but the truth is that he is doing so much better on it.

The price stinks! I get a case of samples every time we are at the doctors office. They know how much it costs and can sympathize with it.

Oh, and I would recommend trying out the formula for a week and keep pumping. If it makes a difference then you have your answer. If it doesn't then you can decide if you want to continue with the breastmilk or not.

With how much stress you're under doing all of that pumping is a lot of work and sometimes making a choice that will help alleviate that extra stress is the right thing to do and there is no guilt in that.

I pray for Jonah all the time (and for you and Matt!). He is such a sweet little guy and you are such a great mommy to him.


dg darling said...

I'm so sorry that things are frustrating right now. I have a baby that is not a fan of eating and I find distraction helps. If I can get her interested in Baby Einstein then she sorta just doesn't realize she is being fed. Obviously she doesn't have the added challenges that Jonah has (she does have reflux though). Anyway, I hope it helps some. I'll pray for back-up though:)

Pam, mom, honey, said...

so glad you are back, it was kinda weird, a sandy brown screen came up.

Michelle in Va said...

I haven't left a comment in a while, but I do read each and every post and pray each and every day. I know the Alimentum is expensive formula, but if it works, it is worth its weight in gold. My sisters two children were both allergic to milk products and were on the "golden"formula, but once the drs figured out he had a milk allergy and put him on the Alimentum, he was a new baby. With the milk allergy, every time they eat it hurts their little bellies. This may not be the case with Jonah, but it is exactly how my nephew did when they were trying to figure out why he wouldn't eat. I would give it a try, it was a miracle worker in our case. I hope that offers some encouragement. It will take a week or so to tell a major difference. Praying for Jonah to eat and good job Jonah for sleeping thru the nite. God bless!!!! God is so good.

Lindsey Caskey said...

Hi, Patrice!!! I have been reading your blog now since Jonah was born. You are such a strong woman!!! He is so blessed to have you as his mommy! I completely understand you being torn between breastmilk and formula. I just went through the same thing with my 3rd child. I was actually producing milk and she was latching on well.....but screamed 24 hours a day and threw up all the time then had bloody stools. At one month old, 1 day and 12 hours old to be exact I gave her a bottle of Nutramigen as I cried and cried. She was a totally different baby by the time she was one month, 1 day and 13 hours!!! YOu have to decide but it worked best for her!!! I pray for Jonah to start eating better and for peace about your decision!!! Lindsey Caskey

Toni :O) said...

I have no words for your frustration unfortunately, my heart just aches for you and I wish I could make it better. I'll continue to pray for you and your sweet family in hopes the eating issue is resolved. We're all cheering you on and this enormous task of motherhood...hang in there and sending you love and hugs (( )) (( )) for support chicka!

Angela said...

First of all...praying for you and you're little man Jonah as always.

2nd - Go to Babies R Us and buy a package of G Diaper inserts (not the starter pack just the refills). You won't have to cut any elastic and it will fit fine inside the cloth diapers. You gotta do what you gotta do for the little man.

3rd - stick with the breastmilk if you can. For reflux babies the milk is better tolerated and will cause him fewer digestive issues. Every GI specialist we've ever seen says the same thing - breastmilk is best for babies with any type of digestive issues and formula almost always makes it worse. But in the end you have to decide what is best for both YOU and Jonah so don't give yourself too much mommy guilt. I know it's hard, but still...we all do the best we can with the knowledge we have.

Keep up the good work momma. You're doing a great job!

Audrey said...

Really, really, really encouraging you to keep going with the breastmilk. I can't believe that formula could be any better. Good luck!

Erica said...

So sorry to hear about the eating issues. I feel your pain... though I know our situations are very different, we battled eating for 9 months with our son (preemie with horrible reflux). I felt so guilt-ridden about giving up breast milk (I was pumping too b/c Eli never learned to nurse), but after a ton of encouragement from family, friends, and doctors, I switched Eli to Nutramigen (same as Alimentum) and it helped SO MUCH. Even if they are missing out on some immune protection from breast milk, it is worth it to get them eating more comfortably. Plus, not pumping every 2 hours for 20 minutes a pop removed a huge, huge load of stress from my shoulders, and I was able to be a better mom to my high-needs preemie once I stopped. Again, I know our situations are not the same, but I just wanted to encourage you a little that if you do decide to stop breast feeding, it will turn out okay.

Whatever you decide to do, DON'T FEEL GUILTY!!! Guilt is not from God.

Prayers from Dallas, Texas!

Kristy said...

Hi Patrice -

Since you are now using disposables, I would highly recommend the Huggies. They have petroleum in them. They were the only kind we could use on Carson.

We'll keep praying.

Mom to Carson, 6 yo, EBS

K said...

Hi, I'm glad I can view your blog again. Before stopping the breastmilk, which I agree with you in that it's the best thing for Jonah, have you tried a cup or spout cup instead of a bottle? With some spout cups, like the kinds with long soft spouts that don't require sucking (some Avent, I think), Jonah would only have to swallow to eat.

Anonymous said...

Glad to hear Jonah is sleeping through the night. That will help you deal with "life" in general because you will be getting more sleep..hopefully. I don't know if you have tried this or not but when I was nursing, my son couldn't tolerate almost all the proteins that I ate. My pediatrician and I both wanted to keep nursing so she told me to only eat fruits, vegetables and meat and fish. No shellfish and nothing artificial. I flavored things using real herbs or a little salt. No dairy of any kind....When I went to this all "fresh" diet as I called it, it really helped him. My son would start screaming immediately when he started eating. I did drink caffeine free sweet tea and water only. I still drink caffeine free because I am a huge tea drinker. If I drank caffeinated tea, I would be up for days in a row. If you do try this, it will take about a week for your system to get clear of all the other stuff you were eating. You should notice a big difference in a couple of days if you stick religiously to it. I hope this works if you haven't tried it already. By the way, you are providing everything your son needs. He needs you to love him, keep him safe and dry and you can still nourish his soul and also nourish his body. I know it sucks when you may have to stop breastfeeding. Been there. It is heartbreaking. So maybe, if you haven't tried this change it will help. I will pray for your sanity. I can tell you are really frustrated. You are not alone on this journey. I know that the things my son goes through aren't fair either but there is some greater reason he goes through the things he does and I hope one day, in another life, I will learn. Get some sleep, love your son and enjoy your day with him!

Sara said...

Hi Patrice,
I work with a certified lactation counselor here in TX, and from all I've gathered listening to her talk with new mommies and daddies, it is very rare for a baby to be lactose intolerant of breastmilk. Jonah may be intolerant to dairy, but if you have cut all dairy out of your diet, then he shouldn't be getting any. Breastmilk is not considered dairy. I don''t remember if you said that you had done that or not, we see so many new mommies every day I forget who has done what sometimes! I'd be happy to pass along her email to you if you'd like to email with her and see if maybe she can help you with some of the breastfeeding issues and concerns you have. Not sure if she would be able to help, but it doesn't hurt to ask...Please send me an email so I can get Suzanne's email to you, I'd just hate to post it here and have her email flooded with tons of spam or something. My email is maynardspet000(at)yahoo(dot)com.
Also wanted to send my sincerest condolences about your friend Paul. I am so glad you got to watch his service from the webcast, I know you wanted to be there.
Know that you and your little family are loved by many!
~Sara, Kingwood TX

Melissa said...

I just found your blog & have to get to I can't get caught up on Jonah's situation..

But as a Christian mama..I want to encourage you..I will follow up on Jonah's story & pray for you all.

And about breastfeeding..don't give up. It's very hard to relactate..possible, but hard. In the long run, you'll both be better off if you keep breastfeeding/pumping.

My 5mo old was in the NICU for a week and I think it's safe to say her situation wasn't anywhere near Jonah's..but we got thru one hurdle after severe latch issues (very painful) to thrush..

I'm guessing you know of not..please visit. That site is like the Bible of breastfeeding so to speak. Visit the forums too..there's a great one for NICU moms.

There's always the option of donor milk as well..just a thought.

But do a search at Newman has great info on breastfeeding too inc preemies/NICU babies.

I wanted to add that you'd be surprised how many DRs know very little about breastfeeding & have advised mothers that baby is allergic to their milk or that they should quit nursing for A,B & C..

Hang in there! It's's rough..but it does get better. I look forward to learning more about your little man & lifting him up in prayer.

Melissa said...

Also, if you think he has issues with dairy, eliminate in from your diet..will do a world of good if that's the case.

Monica said...

Hi Patrice - I just started reading a few weeks ago....found your blog through another blog through another...i feel a connection to you as my little guy is 2 weeks older than Jonah. My family has been praying for you ever since. A thought on the breastfeeding: he wouldn't be allergic to your milk protein. However he could be allergic to any dairy in your diet that passes through your milk. he could also be allergic to any other number of allergens (corn, wheat, soy, etc). cutting out dairy for a few days would maybe show if this an issue.

Also, have you heard of G diapers? they are a disposable insert in a cloth cover. it sounds like it might be a little less work that what you're doing!

You will be in my thoughts and prayers. As a mama who has found herself on the verge of insanity lately, i can relate to you.


PF said...

Hi Patrice,

We discovered my son had a milk protein intolerance when he was 2 months. We switched to Alimentum and I continued to supplement with breastmilk but I went on a dairy-free diet. We noticed a change within few days. I was in fact told that it takes few days to see a change when you are dealing with milk protein intolerance. Also, my insurance paid for the Alimentum, since the doctor prescribed. Have you tried to ask your insurance? Good luck. I hope Jonah's feeding will be easier soon.

Anonymous said...

My son was having some of the same problems with feeding as Jonah. It turned out that the nipple size on the bottle was too small and he was getting really frustrated. I don't know if you have tried that but I thought I would sugguest. Praying each and everyday for your family.

Anonymous said...

Hey Patrice,

I don't have kids of my own (yet, I hope)...however, my sister has 3 boys and all have had some type of allergy to breastmilk or I guess, what she was eating. She got down to only eating rice with some plain chicken and the boys' tummies still couldn't handle it. She was so excited about doing the natural thing - breastfeeding, etc., but then couldn't. As I was reading your blog today, I remember that pain of hers...imagining exactly what to pray for for you and I remember being there with her. Switching to formula, Alimentum specifically, was the BEST thing for them...They were happier, she was happier. I hope that works for sweet Jonah as well. The good news is, he has gotten breastmilk for you've already given him so much of what he needs...and the formula can supplement what you've already been able to do...then you'll have more time and energy for everything else you do to care for him...that only you can (the same way you do)!

I'm so thankful that ya'll had a good trip, for your family pictures, and for your being able to read a book. :)

By the way, I live in a small town in Mississippi...we are just now getting a chick-fil-a, and I'm so excited!!! The construction is almost through! :) Now, if we could only have a target, I'd be set!


Deanna said...

Please, please don't feel bad if you have to switch to formula. You are amazing for making it this long with all you have to deal with. If the formula makes him feel better and makes it easier on all of you, then it's the right decision (of course, you know that already, obviously!). I understand the guilt that comes from ending breastfeeding, but no one has the right to judge what decisions you make for your family. You ARE meeting Jonah's needs, by taking care of him day in and day out, and by making sure he gets all the nutrition he needs to grow and stay strong! Praying for peace in your decisions...and hoping you continue to get more sleep!

Lorraine-bo said...

I hope that others will somehow be able to see the pics at the beach because they are beyond beautiful. Jonah is a doll and you are a sweet family.

It's good that you share the crummy days, too. It helps us to know how to pray for you.

My sympathies in the loss of your friend. His service sounds very much like my Grandpa (Papa)'s only a few weeks ago. My Papa was only 73. We were told on 4/24 that he had bone cancer and only had about 6 mos left. He was gone only 6 wks later. We had a beautiful, worship-filled Home-going Celebration for him that reflected his life. You can read a little about my Papa on my blog: (June 25 post "Impact"). He was hilarious, warm, loving. I love that he & my Gramma (also 73) both love "modern" worship music and not just hymns. They always tell their friends "we don't believe that God quit talking to & inspiring His children after the hymn books." lol :) I pray that all those affected by your friend's life are comforted and also are inspired to become more Christ-like because of him. I know I desire that in a great way because of my Papa (& Gramma).

I will continue praying healing & the Lord's mercies on Jonah, you, and Matt.

Pella, IA

The Chaney's said...

Hi Patrice! I also struggled with the whole breast milk vs aluimentum thing. I felt like if my milk was hurting how could something from a can help!?! Well, I finally gave in and WOW our son was a different baby. We ended up dropping breast milk at 4 months and though expensive, the alimentum was worth every penny! I hope this gives you some encouragement. We are praying for you in Alabama!

Mommy Attorney said...

Praying for the eating situation. I'm sorry that it is unfair and frustrating.

Re: the beach. I went to the beach with my husband's family when my daughter was 2 months old. It was good, but also bad in many of the ways you described. No more laying on the beach for hours. No more long dinners. We had babysitters, but with breastfeeding and the fact that you know your baby more than anyone, it was hard to just relax and have fun.

All of that to say that I was really depressed about what it meant vacations would be like, but it does get better. You will get breaks. I know that EB will complicate things, but you will be able to shower and brush your teeth before 3 p.m. It doesn't seem like it now, but it will happen.

queenmari said...

i am praying for jonah's eating issues as well as your stress over this. you are a wonderful mommy, and you need to vent when you feel frustrated. we are not here to judge we are here to listen, love and support you.

glad to hear you all made it back home after a good visit to the beach. from the pictures it looks like agood time, even if not the conventional beach vacation--you made it work for your family and this is what is important.


Elissa said...

so sorry to hear about the feeding issues. my son had severe reflux and it forced me to stop nursing sooner than i had hoped. we used that formula for a while. it is VERY strong, so cut it with your breastmilk for a while or he may not take it at all. we all understand that mommy guilt and feeling like their need for us will be gone if we stop nursing. i can't imagine the emotion you face as mine was a single issue that was easily addressed. you will come to a place of peace with it, no matter what your decision is. i second all the comments to check with jonah's doctor about insurance covering the formula, as well as free samples. "MY GOD SHALL SUPPLY ALL MY NEEDS" hang in there!

LisaL said...

So sorry to hear about the eating problems. I would suggest trying the formula for a few days while continuing to pump. That way if there's no difference you can go back to the breastmilk. I can understand the torn feelings you have about wanting to continue to keep him on the breastmillk. I pray that Jonah's eating improves and becomes less stressful for all of you!

Jenny J in CA said...

Hi Patrice,

I have a totally crazy and off-the-wall suggestion for you. Have any other EB families suggested rubbing your milk topically on Jonah's skin? (I know, it sounds weird.) My midwife for my first son was totally convinced that breastmilk healed pinkeye and worked wonders on skin. there are articles about it all over the net, but I don't know much about it to be honest.

If it caused his blisters to heal even a day faster or helped to keep infection away, it might be worth a try?

I'm so amazing with your dedication to pumping up until now. Pumping is so challenging and time consuming and creates even more work for you with more things to wash and steam. I am praying that you can come to a clear conclusion for whether you should continue to pump or not, and that you will be at peace if you decide to stop. I'm also praying that Jonah's mouth and throat are blister free and that is not causing him any pain.

Thanks so for sharing the beach pics- congrats on fitting all Jonah's equipment in the car and making it out there for some quality family time.

You are such a gift to Jonah whether you continue pumping or not. Thank you for allowing us all to go on this roller coaster of a journey with you and for being so open and honest along the way.

Anonymous said...

I forgot to mention one thing about changing your diet. You can't eat eggs either. I hope this works for Jonah and I pray that it is not internal blisters that is affecting Jonah's eating.

Also it is 2:39 Am Saturday morning! Where is your Friday post! I love reading about Jonah every night before I go to bed! Hope he is sleeping good and that is why you are not posting as much now...(because you are sleeping!)

Anne said...

I was wondering why I could only get your blog on the laptop and not the computer I usually use. I thought it was my computer. Glad it's fixed. Jonah is adorable. I don't comment much but I do want to tell you I am praying for your family for strength and healing. Jesus is so good to us.

Dan and Sarah said...

if he has recently grown a bunch its possible he just needs his reflux meds upped. both of my kids went through times where it seemed like they regressed so much and just screamed and screamed all day and we upped their med dosages and things were so much better!!

I pray that that's all it is.

You are such a good momma, and God welcomes all those prayers. So keep taking it all to Him!!

Bethany said...

I didn't read the comments, so forgive me if this has been suggested, but what about continuing to pump and just freeze it while giving him all formula for a week or two to see if that helps anything? If id doesn't help, then you could go back to giving it to him.

Jenny said...

I'm checking in late here, but if he has reflux the ready to feed formula is so much better on him than powder. My daughter and nephew both had to have ready to feed because of reflux.

Surprisingly, it is cheaper at Babies R Us than WM or Target here.

Good luck.