Friday, May 29, 2009

the mid-night musings of a milk cow

Pediatrician Update: Jonah's weight is in the 10th percentile, but Dr. B said he's gained excellent weight from last month to this month. She's very pleased. Something about tickled pink or happy as punch or something. Anyway, it was good. We're going to try giving him an extra dose of Prevacid each day. He was taking half of a 15 mg solutab once a day (so I was just throwing the other half out). Now, I'll half the pill before dissolving it, so that he can have half in the morning and half at night... so he's getting the whole 15 mg, not 7.5. I'm also not allowed to eat or drink any dairy this week and can only use my freshly expressed milk instead of my stock pile to see if he may be lactose intolerant (a common problem with EB kids). We're also going to try feeding him every two and a half hours (instead of three), hoping that he can eat less amounts but more frequently, and that will make him more comfortable. She also checked his mouth and says he has some blistering at the back of his mouth/throat, so that may also be causing him some issues. Instinct tells me it's mostly Reflux after reading so many comments describing the same type of thing. I didn't know there was this "silent" kind that didn't involve lots of spitting up (which is usually not an issue for him). Hopefully the increased Prevacid will help. But then, how will we know if it's the Prevacid helping or the no dairy? Oh man, will I ever get to eat cheese again? Ay, mi queso, como te adoro.
****************************************

So it's 4:30 in the morning, and everyone in my house is asleep, even Jonah. Although he may be learning to sleep through the night (last night he only woke up once... at 4:45), my chest hasn't quite gotten the idea. I feel like a cow... a cow that is very grateful that her son is learning to sleep more, but a cow none the less. (Sorry, boys, for TMI. This is a girly blog... not a boyly one - as my niece and nephews like to say).

Today (yesterday really) was a GREAT day. Jonah, Granny, and I went to Target, through the Chick-Fil-A drive thru (with a feeding in the parking lot), Kohls, and finally Harris Teeter. Jonah was awesome except for being a little fussy and having to be carried in the grocery store. I'm so happy when I can get out with him. Any bit of normalcy immensely raises my spirits. And he's just getting to be so fun these days. I think I'm going to like three months. As long as he had dry britches and a full belly, he was content... lots of smiling and cooing and good play time. I'm starting to enjoy him so much more, and it makes the hard stuff SO much easier to deal with. He actually laughed out loud at Matt two nights ago, but I missed it. I heard it from across the room, but was too busy trying to get the camera turned on, I totally missed it. It was the sweetest sound and the first time he's laughed as far as I know.

Tomorrow (today really), he has a doctor's appointment and then the nutritionist is coming at 2:00. I'm excited to hear what she has to say. Feeding Jonah is a struggle. He's eating enough (for the most part) and definitely gaining weight, but the actual act of eating/feeding is so hard. He'll take the first ounce peacefully, smoothly, and quickly, but then the last two to three ounces is like pulling teeth. He's hungry and rooting around, but he'll push the bottle out of his mouth, arch his back, thrash around, and cry through the rest. Either that or he completely falls asleep. I have no idea why he gets through the first ounce just fine, and then it all goes to pot. This is the primary thing I want to bring up with the pediatrician. It shouldn't be this hard. For him or for us. Frustrating. Plus, it takes him an hour to eat usually, which not only takes up a ton of time, but they say anything over 30 minutes and he's actually burning calories. But what do you do when your kid's still hungry? I'm not going cut him off at the 30 minute mark. Anyway, I'll be glad to talk to both the doctor and the nutritionist about it. I moved up to the level two nipples with his Dr. Brown bottles, hoping that it would help him not get so tired/frustrated. And, my thought process was that if he's only going to give me a good 20 minutes, I want to get the most out of them. Has anybody else dealt with this same thing? It's so hard for me to know what are EB problems versus "normal" baby problems. (I don't know why I feel the need to put that word in quotation marks).

Well, I'm done milking myself now, so back to bed.

Moo. (Er, I mean goodnight)

75 comments:

Anonymous said...

I am glad Jonah had a good day yesterday. I am probably one of the only people that are awake at this hour. I miss you guys, and can't wait to see you soon!


Love,
Sabrina

Brooke said...

That's hilarious, because I'm up pumping, too! (It's 4:30am CST) I have preemie twins (born 11 weeks early) who are now 5 months old. I have had the exact same feeding problem with our little guy (born at just under 2 lbs, now almost 8.5) ... he takes the first 1-2 ounces fine, then it's a huge battle. Just about 2 weeks ago, it got much easier... like he finally decided that he actually enjoys eating! :) I've just chalked it up to reflux/small tummy/prematurity/strong will.... he's still gaining weight, and if he's really hungry, he can eat it all just fine. It's maddening. I'd love to hear what the dietician says! You are not alone!

I've only commented once before... I think you guys are amazing. Your love, dedication, and spirit and truly remarkable. He is a lucky little boy, and just precious! I'm so glad he's doing so well. God bless!

Prayers continuing from TN...
Brooke

Jessica K. said...

I just LOVE the way you write!! Seriously you are gifted!!
Have a wonderful weekend!!

Anonymous said...

sounds like reflux. both of my boys had it and they would start off eating fine and then mid way, they would arch their backs and scream. It was almost like they were "fighting" the bottle. Both took meds and eventually grew out of it. Good Luck!

Alison said...

Hi, it sure is good to know I am not alone at 4 am while everyone in my house is asleep and I get the "milking" done. My son is 5 months old, full term, and pretty normal. For reasons I can't understand, breastfeeding did not work for him. Ugh. Anyway, he had the same issue with his Dr. Brown's bottles around 3 months. He ate just fine for a few ounces and then would reject the bottle. I switched to level 2 nipples and that seemed to help. He still does this sometimes. I try not to stress about it because he is gaining weight like he should and seems otherwise happy. I don't know if that helps you. You're blog helped me this morning at 4 am, Thanks!

Know that you're family is in our prayers here in WA.

Eidan's Mom said...

Hi I have been reading your blog for some time now, and always felt compeled to comment, however until now I felt I didn't know enough about your situation to post a comment that would be beneficial. However, as for your feeding issue. I had the same issue with my son. He was a preemie born at only 3 lbs. 2. oz, and feeding was a big issue, we wanted every calorie to count. They also told us that anything after 30 min. is burning calories, and since every calorie at that little is important this fustrated me to no end because it would take him over an hour to eat. His issue turned out being two fold. He had reflux, which made it painful to eat, which is why he would scream and arch his back with each feeding and he also ended up being allergic to my milk as well as two formulas we tried. Once we got him on the right formula and medicated his reflux, he was still taking an hour to take a bottle. Finally I stuck to my guns and after 30 min. cut him off, I would say with in two or three feeds he realized uh oh, if I don't finish this quick I'm not getting any more. I don't know if this will be helpful at all but I hope in some way it is. At one and half feeding still is our biggest struggle, but I have learned to remain calm and it makes the whole process that much easier.

Anonymous said...

I am really glad Jonah had a good day yesterday. The feeding issue may be because he has reflux. My daughter had it when she was little and now her little sister has it as well. I know it isn't fun. Just talk with his doctor and see what they have to say. Hopefully everything will get better. Hope you guys have a great weekend and I can't wait to read the next post.

Anonymous said...

we had the same issues and like other people have mentioned, it was reflux. My son was put on some medication and it seemed to help. The other thing I tried was switching bottles. He went from the Dr. Browns to the Playtex Nursers with the bags. For some unknown reason it worked really well with my son. Praying you get an answer soon!
Laura

Rebekah said...

A little boy I baby sat would do the same thing. He had very bad reflux so we would just feed him on demand. I think that when he firt started eating and got the first few oz down him he didnt feel hungry any more and wanted to quit, but I didnt want to feed him just a few oz ALL DAY LONG, I wanted him to eat every 3 hours or so, so I would end up taking about an hour to feed him as well. It was all about me trying to get him on a scedule....he did better as time went on but it was so hard. Stubborn little guy. :)

Karen & Shahin said...

I haven't left a comment in a while but am still praying daily for Jonah to get well. My kudos to you for your dedication with pumping. Your milk is probably the one thing keeping Jonah so healthy as it really keeps infection away. I wish I could offer some help on the feeding issues but never bottle fed and had a totally different problem related to over supply.
It sounds like a bit of reflux/small tummy issues. At 3mths old my girls nursed about every 2 hrs. I know some bottle fed babies are on a 4 hr schedule and that is difficult on a little tummy. Prayers that the pedi and nutritionist can help you.

--Karen in Boston

HMPY said...

My dd, now 7 months old, has reflux really bad and she does the same thing. I will say that around 3 months her pediatrician suggested that we might want to start adding 1/2 to 1 tsp of rice cereal to the milk to thicken it just a bit so it would stay on her stomach a little better. Believe it or not, that combined with increasing her dose of Zantac helped a good bit. She wasn't as fussy, but she does still fight the bottle a good bit. Oh, one other thing that's recently helped a bit more is switching the formula that I mix with my milk. Similac now makes their Sensitive R.S. formula in powder (not just the expensive ready-to-use jugs) and switching to that has helped a bit more, too.

Our doctors have explained to us that she was able to start associating her reflux with the feeds and that was why she started fighting the bottle after she took some and started feeling less hungry.

While you're at the doctor today, I would recommend to have the doctors look at his weight and see if Jonah can go up on his reflux meds a bit. One other thing, which we are in the process of trying, is to discuss the option of changing how many times a day he takes the meds (and the dosage). A slightly smaller dose given more times throughout the day seems to be helping our dd.

I really hope the doctor and the nutritionist have some helpful suggestions.

Also, I really know what your going through with pumping. I, too, could swear that my pump is talking to me at times and I know it takes a good while for your chest to get use to new schedules.

I'm praying for sweet Jonah, as well as you...and Matt.

Ooo, one other thing, some of Jonah's issues with tummy time might be caused by the reflux, too. Our daughter, even to this day, can only tolerate a couple of minutes before she gets fussy and then starts spitting up because of the extra pressure on her tummy.

libby @ ninesandquines said...

patrice, jonah IS a normal baby. he just has a condition that has presented you guys with some challenges...you don't need to consider him NOT "normal"....and he is as precious as can be - LOVED the video of him! SUCH a doll!!!! love your updates!!!

Raising Arrows said...

When I was pumping for my son, my sisters loved to call me "Old Bessie" LOL, I know the feeling and remember those days so well. Glad to hear you got out for a bit today....a little retail therapy is good for the tired soul :)

Heather said...

We dealt with similar eating problems with my son, and it was from severe reflux. I'm guessing the quick start in the beginning would be from extreme hunger, but then they slow down because it gets uncomfy. I don't remember if Jonah is on Prevacid, but as they gain weight, they need a higher dose. Maybe that's it? We also had to burp Jule like every 1/2 ounce to ounce and give him Mylicon with every bottle. What eventually helped was him moving around on his own more because it helped him get all the air out and also improved his reflux.
I'm so glad you're getting to do some normal things! It makes life so much more fun! I'll pray that his feeding problems improve.
Heather
Charleston, SC

calle23 said...

I had the same problem with both of my sons. I think its a "normal boy" thing. No girl would reject food like that if they were still hungry! I compleatly agree with feeling like a milk cow. At our house we just refer to me as the "Dariy Queen!"

RLR said...

I'm with everyone else - sounds like reflux. Sounds exactly like how my friend's kids behaved before getting their reflux meds. Our daughter has reflux, but her symptoms were masked until her tonsils were removed (when she was over 2.5 years old). She just ended up with a croupy-sounding cough in the middle of the night - would wake up screaming, then be ok in the morning. With meds, she is sleeping through the night again (at almost 3 years old).

Michelle said...

I haven't encountered the reflux issue like most everyone else who is commenting. Our youngest did that same thing when eating -- turned out he was a "snacker" -- he just wanted to eat less more frequently. A pain, but it was a phase and didn't last forever.

Love your blog -- we pray for you guys nightly!

rameelin said...

I dont know how normal it is, but I do know that both of my babies were frustrated eaters. My first would eat for a couple of ounces and then fuss and cry even though I knew she was still hungry. But...strong willed as she is, she wouldnt have another drink. Anyway, he's growing and the Dr. told me that's what is important. It will be good to talk to the nutritionist though! Love your middle of the night thoughts!

EHW said...

Hey Patrice...

I bet your early intervention program has a good Speech Therapist that might be able to assess his feeding (sucking/swallowing/positioning) and could possibly offer some advice!!!

With a good team of OT, Nutritionist, and SLP working together with you (and the reflux meds), I pray that sweet Jonah will start taking his bottles in under 30 minutes!!!

And, moo-cow to moo-cow... my 11 month old has slept through the night (most of the time) for more than 6 months and it's just been in the last month that my body has adjusted and there is no longer a need for early morning milkings!!! Hang in there- your body will adjust eventually!

Love and prayers from Elaine in Lubbock, TX

its so very cheri said...

I have never dealt with the things you are dealing with but have dealt with all kinds of nursing issues and having to nurse, pump and supplement so they got enough. I am on a website for moms who deal with issues-even though I was able to finally -exclusively- nurse my 4th child. On the site a lot of moms who have babies with issues, talk about the haberman feeder-I don't know if it would help but you might check it out. It could be something as simple as -he is so hungry that he is willing to eat past the pain in the beginning but then once he has some food in his tummy he is more concerned with the pain.

Cheri
www.itssoverycheri.blogspot.com

Ryley said...

You think month 3 is a good one?? Just wait.. from this point on they only get better!! (Well we are just at a little over 5 months and havent hit the teething stage yet) Seriously.. it just keeps getting better. It's so much fun! What a nice "normal" day you had! Glad you were able to experiance some normalcy.. good luck with the nutritionist..

Oh and on the bottle topic (I EP for my 5 month old sone just because I find it easier so he also drinks bm out of dr brown bottles) He was like that too, sometimes still is. We chalked it up to reflux. We finally have him on the right dose and it seems to be much better. It's like once there is food down there, it starts to come back up and burn. Hope you find answers..

Erica said...

Does Jonah have reflux? Your battles with him during feeding sound a lot like what we've dealt with off and on with Eli. At first he had major projectile-vomitting reflux, and now it's toned down to what they call "silent reflux." Symptoms of this are: arching back during feedings, taking only a little and then stopping, etc. They have medicines that help a lot. I hope you guys can get this figured out- I know from experience that it's so frustrating!!!

Jonah is PRECIOUS, by the way!!!

Baby Bird said...

you are so cute...you really should write for a living!
hope things go well today with the pediatrician and nutritionist!
have an awesome weekend!
Love, Aimee

Anonymous said...

My reflux baby was very much the same way (at the breast.) The back arching is certainly a classic sign. I had a silent refluxer so she wasn't really spitting up more than most babies, just having it come up and cause her pain. Maybe it is time to move up to bigger guns with the reflux meds.

Stacey said...

So glad to see Jonah sleeping good!! Mommy's milk will continue to be best right now. You're doing a great job! Look how big he is :-)
Three months is a very fun time. Enjoy!
Remember too, especially when you're out in the warmer weather, to keep yourself hydrated too, and that should make things easier for you pumping. If you ever have any problems, contact the LLL in your area and they will be a great source of help. You can also find playgroups through them too.

M J said...

Oh, Patrice, you had me laughing good with that one!!!! I had a reflux little one, and nursing was a struggle the entire time I did it. I didn't get good results pumping, and ended up having to supplement with formula, which was a huge disappointment after my first one who nursed like a champ. ANYWAY, my reflux baby fussed while nursing. It would go suck, fuss fuss, suck suck, fuss fuss fuss, the entire time until we were through. Thankfully, she outgrew it at around nine months, and we were able to stop giving her Zantac. I don't know anything about EB babies and if they take longer to overcome things like that, but I remember my pediatrician told me that babies usually outgrow reflux between 9 and 12 months, so there's a light at the end of the tunnel! :)

Serwa Chic said...

I was actually just going to comment that Jude had the same eating issues and suggest that it might be reflux when I saw your update. We've had to tweak Jude's dosage several times as he gains weight. I'm hoping that upping the dosage will fix the problem and you can enjoy your cheese again soon! I'm guessing that if he stops being so fussy when he's eating, that they'll have you slowly reintroduce dairy into your diet and just watch how he's doing. He's beautiful - if that's okay to say about a boy. :)

Shannon in MN said...

If only they came with an instruction book! My Noah (now 3) was the worst baby to feed!! Bottom line, he hated the bottle! I bought and tried every bottle and nipple there was to no avail.When he was 10 mos. old we gave up on the bottle and switched to a sip cup and all was good. I really dont think he ever ate more than a few ounces from a bottle. Once he could eat baby food it got so much easier because he didnt need the milk so much to fill him up. Good luck Patrice! I read daily and think of you all many times a day!! Hugs, xoxoxo

Amyb99 said...

I just wanted to post and say that my youngest had "silent" reflux and was just as you described. He would eat the first ounce or so and then would arch his back, cry and refuse the bottle even though he was rooting around and obviously still hungry. It was heartbreaking! Fortunately with his med (I can't even remember the name now) and time, he eventually grew out of it. It was a very difficult time though, not knowing what to do.

I just wanted to say that I completely understand and empathize with you. I hope that things turn around soon and that Jonah continues to grow, grow, grow!!!

God bless.
Amy in PA

Penny said...

I also LOVE three months! It's such a sweet age when they first start cooing and really smiling. My grandbaby was born Feb. 16th and I loved it when he got all excited to see his mom Monday after I'd had him all weekend! Every time I read one of your humorous posts-- I LOVE it! You seem like you're adjusting better to life with Jonah and getting back to yourself. Such a blessing! =)

Watts Family said...

Get some sleep girl! :) I so remember those days. I can't believe how big he is getting. He is absolutely gorgeous! Thanks for allowing us the chance to watch him grow. Have a great weekend.

Many Blessings,

Amanda

Melissa said...

Good morning, Bessie! Yes, you do feel like a milk cow when you're nursing, especially when you're full and the baby is sleeping more/you're nursing less. But thankfully, your body adjusts to the decreased demand for milk, and pretty quickly, too. Soon Jonah will be eating cereal and you'll get even more of a break. It's just the natural progression of things.


Yippee for Jonah becoming more and more fun. And it only gets better, I promise! My Jonah is in my favorite stage right now: 12-36months. It's hard sometimes because he's learning to exert his own will, but the payoff is so sweet. Last night, he said, "Love you, Mommy," completely spontaneously, for the first time.

Ah, motherhood. Enjoy, Patrice! It truly gets better and better.

Ebeling Family said...

lol!! I know that cow feeling VERY well- the first night my J man slept 7 hours- I could hardly reach my arms in front of me!!I did not, however, think to blog about it...you're too funny! Glad to see Jonah's gaining weight well- I'll pray that the feeding times get shorter and more efficient-
Em

Psalm 118:24
This is the Day the Lord has made- let us rejoice and be glad in it!

Katherine said...

Hey ... I mentioned adding the rice to you yesterday, and I see that someone else commented about it today. I forgot to say it yesterday, but if he chokes on the Level 2 flow, the rice would help that, too. And if the ped says it's OK to add the rice to see if it helps, you might even have to use a Level 3 or Y-cut nipple in order for the thicker milk to make it through.

With Nick, when he was on Zantac, we didn't give it to him with a syringe ... I added a small dose to each bottle so that he had a low level of it in his system all day. (That was our ped's advice.) I'm not sure how you're giving it to Jonah, but you might try that method to see if it helps. (I know that if he won't take the whole bottle, you'd worry about him not getting the whole dose, though.)

And I'm glad you're looking into the Silent Reflux thing ... they can definitely have it without spitting up -- it's like heartburn for adults. Burning in the esophagus without actual liquid coming up ... can be really painful.

As always, love you so much. Counting down the days til the beach!

Jessica mommy to Alex/ RTS said...

That is exactly Alex's does of Prevacid, and he has the silent reflux as well.
Im so glad he gained weight!

amber said...

I'm so glad you got some normalcy yesterday! Getting out just does wonders! I'll also be praying that you can eat cheese again, uh, I mean, that Jonah isn't lactose intolerant! =)

Becky said...

Although I have no familiarity with EB issues, we did go through similar feeding problems with our daughter when she was 2 to 3 months old. Long story short, we found out that she was extremely lactose intolerant and a change in meds and formula made a huge difference in her life and ours. It was unendingly frustrating to try to feed her for an hour at a time only to get an ounce or two down, so I can understand how you feel if only on that level!!! Praying that the doc and nutritionist can help you find a resolution quickly. What a cutie your Jonah is!

erika said...

Glad the appt with the pediatrician went well! Have you tried Axid instead of Prevacid. I have to wonder how much of the prevacid babies actually get since it is getting crushed into milk. Axid is similar to Zantac but it is not alcohol based (like zantac) and tastes much better than zantac. The axid is liquid just like zantac. Axid was a mirical med for my daughter who had horrible reflux! Axid was what was recommended to us by a pediatric GI doc. She finally outgrew it when she turned one and we weaned off the axid. Just a thought :)

I love reading your blog! Your thoughts and insight are wonderful. Thanks for sharing your life and precious guy with us!

Karen said...

I've never commented on your blog, but I read it almost daily. Jonah is growing and looking so cute!

My youngest had silent reflux. She had that same posturing--arched back, not being eager about the bottle, etc. I didn't realize, however, until we started working with an OT on her eating issues that this was reflux posturing. She asked us to go back to the pediatrician and ask for a reflux medication. It made the world of difference for Hope. Hope is not lactose intolerant but she does have an issue with some milk protein (I know it's not lactose because she can't tolerate lactose-free things either) and so she's a soy girl. I think she still has some reflux (she's now 6 years old) because she will occasionally say that she "burped up some dinner in her throat" but she doesn't complain or so much about it. Consuming dairy, even lactose-free dairy, would make Hope GRUMPY and MEAN as a baby. I know now that it was because her tummy was upset.
Prayers for you and your family!

Jill said...

Patrice - You made me smile first thing this morning as you took me back to those oh so uncomfortable mornings. Makes you wonder why we do the things we do, and then you realize it's just what moms do.

If you need a laugh, check out my latest posting about my toddler happenings. We had such an eventful comedy of errors last night, I had to share with everyone. www.mccormackspot.blogspot.com

Hope you guys have a great weekend. Oh, and I love my magnet, but was disappointed in my Subaru. There is no metal on the back to put the magnet (everything is plastic). So I am proudly displaying it on the side until my husband can rig up something for the back.

Emma said...

HILARIOUS about the pumping!! :) I have a 5-month old who nurses during the day and sleeps pretty well at night. Like you, my body hasn't gotten the memo that it can cut back!

I'm glad you are able to get to Target every once in a while! I LOVE that store. Sometimes I leave the boys at home with Daddy and go there by myself, buy a drink at Starbucks, and walk around by myself! :) Does wonders for this mommy of 3 boys!

Praying for you always!!

Sashka said...

I'd guess that if dairy is the problem (I hope not, so you can have cheese again!) that it's a cow's milk protein issue and not lactose, since breastmilk is chock full of lactose. Anyway, I hope it's just reflux! I feel your pain, though, I grew up on a dairy farm, drinking lots of milk and eating lots of cheese, but I married into an Asian family so my husband and kids can't drink milk, and I have to avoid it while breastfeeding (which I've been doing for 4.5 years straight now - more than one baby). And I love my cheese!

(reference, I had to check my facts ;) - http://raisingchildren.net.au/articles/lactose_intolerance.html )

Parker's Mommy said...

Hi! Jonah is just adorable. I have enjoyed reading your blog and seeing his sweet little face. As far as your feeding issues, my little guy and I experienced the same thing. He would gulp the 1st ounce and then scream and fight the rest of the bottle. This was all due to his horrible reflux. Once we started zantac twice a day, it was a whole new eating experience. We also did smaller feeding several times a day with a thickened formula to help keep it down. ( He was a spewer ).Feeding became much more enjoyable for both parties. I highly recommend seeing a pediatric Gastrointestinal doctor. For us he was such a help. I hope you find a solution. We are praying for you and your family.

Anonymous said...

Hi Patrice...it's Sara the SLP from WI. I have commented a couple times before. My girls both had reflux and I had to cut dairy out of my diet and it made a HUGE difference!!

The 1st ounce probably goes so well because there is nothing to slosh back up into the esophogus. My little Lucy also did not spit up much...I always thought if she could have she would have felt so much better. She was also really gassy.

Anyway...I will pray that Jonah finds some relief from reflux. It can really imapact feedings!!

God Bless!
Sara

jord,ali,hal,kam and grae too! said...

He is adorable! And doing really well in the weight department! I have a 4 month old who is only 13 pds!!

lifelaughsandlove said...

I feel your pain with having to cut out dairy. I did it when my little guy was a few weeks old and it was pretty difficult (I live in WI, and we are kind of known for our love of all things dairy...especially cheese!). Anyway, when I noticed what a difference it made in how he was feeling, as well as the change in his temperament, and sleeping habits I decided it was worth it. Plus, it really helped the last of the baby weight to come off...and then some. I hope it gives you the same dramatic results that it did for us. There are all sorts of great websites out there with great recipe ideas, as well as information on how to substitute things. After a while it becomes second nature. Good luck!

~Amy

Anonymous said...

Patrice, you’re so funny! I check on your site most every day to see how you all are doing. Three months, at least for me, seemed like when my babies got fun – and coincidently that is when Maternity leave ends – just not fair!! Have to leave the babies with somebody else to enjoy those sweet little smiles and laughs and all the fun parts just as they start doing them – and after all those long nights and fussy evenings, too! And I must say, his new clothes sure look great on him! As I heard someone else say, “Boy, you is wearin’ that striped onesie! You is wearin’ it!!”

As far as Jonah eating his bottle well for the first ounce and arching back and fussing through the rest… Caroline does that still at 10 months old – even eating her baby food. Sometimes she takes her bottles/food just fine and then other times, she cries through it – even throws herself back against her highchair repeatedly. I haven’t thought about reflux, we’ve just been thinking it was her teeth, or she didn’t particularly like the flavor of the day, or it wasn’t warm enough… (usually warming things up a bit makes a difference for her – yes, she’s that picky, she prefers HOT meals – gets it from her dad, I’m sure… ). She did have reflux when she was very little, but she outgrew her dose and was doing fine. Maybe his Prevacid will help and he’ll get to eating better soon!

Andrea Hauser

Anonymous said...

honestly, those are like textbook reflux signs. maybe the prevacid isn't working. my daugther was on relgan and it worked wonders while the prevacid just made her more agitated.

the arching the back...thats like the #1 sign that it hurts to swallow.

hope you have good appts!

Carrie said...

I have been praying for Jonah since I found your blog. While I can't relate to EB, I can relate to a fussy eater. My son was born 2 1/2 months premature, weighing just 2lbs 13oz. We struggled with feedings from the get-go. While he didn't have reflux or lactose issues, every bottle was still a struggle for him.

Now at age 4, we still struggle with feeding issues. He's still small for his age, so we have to boost all of his foods to add calories. Once Jonah gets to start eating solids, I can share my boosting secrets with you. I know you have mentioned previously that EB babies need extra calories. I have lots of recipes that maybe you could use once he gets older. I am more than happy to share.

Glad Jonah got a great report at the doctor. Hope the new dosages of meds work for him. I'll be praying!

Carrie

Laura A said...

I am so laughing at this! I affectionately dubbed my pump the "milking machine" when I was nursing - it does make you feel like a cow!

Hope all goes well with the nutritionist, and that Jonah's not lactose intolerant.

I know you were SO happy to hear him laugh - it's by far one of the best sounds EVER.

Have a wonderful weekend!

Love,
Laura

Ki said...

I know nothing about EB (except what you have taught me) but I know a lot about acid reflux. My little boy had a SEVERE case of GERD and ended up on a total of 4 prescriptions and 3 over the counter meds - that's what it took to control it. He took both Prevacid and Zantac at their maximum dose, Peri-actin to increase his appetite, a small dose of the antibiotic ethryromycin for "mobility" (to keep the food moving), Miralax (same reason) and Culturelle (to replace the good bacteria) and Mylanta with calcium. The good news is it worked and now, at 3 1/2, we've weaned him off everything but the Miralax, Culturelle and Mylanta- so no Rx's! But it took so long to come up with the right combo that he ended up in feeding therapy for almost a year because he had such an aversion to eating. I'm glad your doc is taking a more aggressive approach!

Angel said...

My babies were "normal" and I had one that ate like Jonah. Jonathan would nurse for 45 minutes every two hours- which means this cow was feeding every hour and 15 minutes. The second baby ate for about ten minutes every two to three hours. Each person is different.

Anonymous said...

Hey Patrice,

I am a good friend of your sister in law Kim in larchmont. I have been following your blog for a while and have been praying for you and your family and your beautiful son Jonah. I wanted to tell you that my infant daughter was on prevacid for over a year, but i didnt have to mash up the pills myself. See if you can find a local specialty (like mom and pop pharmacy) that will "compound" it for you into a liquid suspension, so that you can squirt it in his mouth or put it in his bottle. Apparently, it tastes just horrific straight up. The big pharmacies like CVS etc wont put this drug into a liquid, I dont know why....i had to go to a local place that would do it for me. i am not sure if you have already tried to find a pharmacy to do this for you, (or you already may be aware of this...)but i figured it would let you know and also it would be one less thing to do during your day. Mashing up pills must be a drag!

Please know that we are praying and thinking about you and Matt and Jonah here in Larchmont. Love, Julie

Shan said...

Hey hon - long time reader infrequent commenter but frequent prayer ~ wanted to give you a heads up ~ Prevacid contains lactose (learned that at a feeding conference - I'm an OT)

its so very cheri said...

If he starts eating without pain you can re-introduce the dairy and see if he is affected by it. If this doesn't work then you go to a more restrictive diet and then start reintroducing one food at a time to see if it affects him.

Anonymous said...

I've never commented before, but I have followed your blog for a long time and we pray for you all every day. My son was a preemie and we had the same issues with eating in the 30 minutes. I use Dr. Brown's bottles too, but I use the nipples they had at the hospital. The Similac nipples with the white ring-not the blue ring. I don't use the air vent system either. For some reason he had so much more trouble when we had that in there. I'm sure you could try just the Dr. Brown's nipples too without the vent and see if that helps. Good luck! It's a normal baby thing, not an EB thing, so take comfort in that!

Kellie said...

Mooo To you as well. Glad to hear that Jonah had a wonderful day. I hope that you got the answers that you were looking for today with his appointments. Praying for him and you as well

The Happy Housewife said...

We had a preemie and she had the 30 min rule too. She would fall asleep after 10 cc's and she was supposed the take 40. There were all sorts of tricks the NICU nurses taught us to force her to eat, but not sure if they would work on Jonah. One was to massage under her chin which causes them to swallow, but I wonder if that would cause blisters? Anyway, I can understand your frustration, nonetheless.
Toni

Karen said...

Hi - I know you are getting tons of advice, but I felt the need to comment :). First of all, I think Jonah is amazing! What a little fighter and he is sooo cute. My advice about the reflux.... my daughter was finally properly diagnosed when she was 3 months old. It was a combination of allergy to milk and acid reflux. They determined that she was allergic to milk by blood (not visible to the human eye) in her stool. For the acid reflux, she was on Prevacid but I found difficult to give with the dissolving (seemed like more stuck to the spoon/in the bottle. Anyway, we switched to Axid which is a comparable drug, but in liquid form. Just FYI. Good Luck!!

jensoup said...

Does he get a fortifyer/something for extra calories in his breast milk? My little boy was premature and acted EXACTLY how you describe him when we fed him,I would almost be in tears b/c I knew if he didnt gain back to the hospital we'd go.Anyway we found out he was allergic to the formula that was added to the breast milk.They had been increasing his reflux meds (and he never spit up) when finially I realized maybe it was the formula-sure enough! Good luck...hope you figure it out.

Kristine said...

My little girl, Katie, also has reflux. The first once doesn't hurt them because it isn't enough to push itself out of her stomach. When they drink more their stomachs get full and it starts to leak out of the valve at the top of the stomach and burn the esophagus.

I happened to do a presentation today for a group of 100 feeding team staff. Just telling my story (from a parents perspective) and it came up over and over again how the solutabs do not work nearly as well as Prevacid in a liquid form. We have Katie's Prevacid compounded at a local pharmacy to include a grape flavour. She's been taking it fairly well since she was Jonah's age.

Just a thought for you. It was a common complaint.

mrs. mari said...

i wasn't awake at the hour you were, and it is now 6:10pm, but i do so remember those days of my milk spilling over and praying my baby would wake soon.

i so enjoy reading your blog.

cathy said...

Hi Patrice. I'm a NNP and see a lot of GER. We are currently using Gaviscon( regular strength only) after feeds in our babies. It coats the stomach and creates a foam barrier on top of the stomach to help prevent the reflux of milk up the esophagus. It is sold over the counter and is usually double strength. Only use regular strength. For a baby like Jonah, about 4 ml after the feed would be a place to start.It is minty and babies like it. Its an easy remedy to try.
Good luck.

Rachelle said...

Sounds like reflux, I agree. Ashleigh had it and would fight the bottle. Also, it helped to burp her when she started fighting, often there was a bubble that needed to come out and she felt full. hope you get to the bottom of things soon!

Anonymous said...

So happy to hear about the lovely day, and glad you can go out with Jonah some! I love ChickfilA too, Jonah!!

Karen in Clemmons

Anonymous said...

i know that it feels like a cow sometimes. but be thankful that you are able to provide him with the amazing breast milk. I too had an amazing supply, but most of my friends were soooooo sad that they didnt and were not able to continue to breastfeed.
anyway, you are an awsome mom!

Sarah @ Thrifty Decor Chick said...

Oh my goodness, he is so incredibly sweet. I remember when our son smiled for the first time, it was around five weeks, and it was like this WONDERFUL feeling -- finally he could reciprocate his love for us. You get to a point where you need something in return, but you don't realize you need it till they give it. It is one of the best feelings to make your baby smile or laugh. Wonderful.

chinamoon1420 said...

My son used to do the same thing when we found out he had reflux. He had started eating less and less over the course of two days then the 3rd day he would try to eat then pull away from my breast but he was soooo hungry. We took him to the pediatrician that day and found out he had reflux. We started him on medicine right away. I can't remember which kind but that night was so much better for him and his feedings started going so much better after just being on it a day. I was so grateful b/c at night he was waking up and spitting up and crying for hours. I felt like a horrible mom because I had no idea what to do. Thankfully we got that fixed and he did great. I tried to get him of the medicine when he was about 8 months but his little tummy was not ready yet. I think we were able to stop it around 12 to 15 months.

My son has hemophilia A severe and I also do the "normal" thing! I know exactly why you do it! Of course to us our kids are normal! But to everyone else their normal is so different!

Marie said...

Just wondering...have you tried smaller bottles more frequently? Might not be an option at night, but if he takes part of the bottle happily before he fusses, would it work to just stop the bottle there, and offer him a new one in an hour or two? Also if the sucking is starting to hurt his fragile mouth, have you tried a dropper or even spoon feeding the rest of the milk? I have known people who have spoon fed bottles, time consuming but perhaps not as much as what you're doing now? Just a thought.

Jane said...

Beautiful Patrice, what a blessing to have a church family and friends so willing to help. I hope you enjoy your new living area. Jonah continues to look great and so glad he is getting to the age you can enjoy him some. As I said in a previous post, all of the extra care for Jonah will become a norm for you. Just enjoy every minute with that precious little guy. Have a great week-end!

jewelrylady said...

We're so glad to see Jonah doing so well. Sorry it's been a bit since I posted but know we've read when able and prayed daily. I just had our little boy almost 6 weeks ago so out of routine.

I have a new package of Dr. Brown's bottles if you use them. I'm happy to ship them your way. We got two big packages for shower gifts and only need one for ebm so would love to share.

Ryley said...

My 5 month old just got up'd to a 15mg pill once a day (from half) btw. you were really throwing half way? You can save the other half, we just put the other half back in the blister package thing and put it in a drawer (You have to keep it away from light and air or it will disolve.. dont throw them away silly..)

I also stopped dairy to see if that will help.. my plan is..

After 1 month og no dairy, i'm going to totally binge on dairy for one day and see how he acts the next day.

I just pump for my son too, so i understand how hard it is to just use the "fresh" stuff!

good luck..

Anonymous said...

Hi Patrice! Your basement is beautiful! You are blessed to have such support!

I am not sure if this will help...but, our son had terrible acid reflux. Our doctors put him on medicine, did not help. It did not matter how I changed my diet for the breast milk. Then we found a God-sent formula! It's called Similac -- Allimentum. It's in a smaller, purple can. It's expensive as all get-out, but it was well worth it for us to not have our son in such pain after eating. Our dr. never mentioned it, we were told about it by others with reflux issues.

Anyway...just wanted to mention it. It may help sweet Jonah?

We continually pray for you and your family -

Chris

Monroeville, AL

Erin said...

I love checking in on your blog :) The basement is awesome!
I nursed my son for a year on a milk-free diet so if you need to stick with it for any amount of time I would be happy to send you food ideas.
My life-saver: Oreo's are dairy free!
Erin
eschore@hotmail.com

Anonymous said...

Our baby would do the same thing. Her pediatrician put her on Pravacid and she did much better.