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I’m so frustrated about so many things…….where do I start………
Well, right now I’m so frustrated trying to figure out how to give her the Zegerid but besides that there’s a whole boatload of frutsration. I’m sorry if this is long.Well, Kate saw the urologist and he advised us to keep her on the antibiotic for two more months. I really don’t want her on a daily antibiotic but I aslo don’t want her kidneys to be scarred from too many infections. I guess this is meeting in the middle. If she gets a UTI while on the meds, he wants to repeat her VCUG. He was nice andidn’t seem too worried. Of course that’s not his job, that’s MY job
We also saw the ped G.I who was great. Very open minded and seemingly very competent and proactive. By the description of all of her sympotms he suspected swallowing disfunction and ordered a three stage swallow. It showed she was aspirating a little into her longs with my breast milk but the thicker consistencies she did a little better. He wants me to thicken and bottle feed but I don’t know what to do. That doesn’t seem like it’s the biggest issue. I mean, would that be causing her pain when she eats? I want the best for her, believe me, but I don’t know if I should use an SNS or bottlefeed or just keep bf! Any advice? My gut is to just keep bf normally and get her pain undercntrol. We have a consultaion with a pulmonologist(sp?) July 3rd because our G.I wants to do an endoscapy and bronchoscopy(sp?). I’m so scared and so angry that we still havn’t found a way to help her yet after everything we’ve tried. I’m exhausted and discouraged. I’m scared for her having to be put under for the procedure. I don’t know how safe it is!
I aslo feel like I’ve failed her. I feel like I should have some clue by now what’s going on. I keep running through my head ” Have I described her symptoms well enough? Have I been persistent enough? Have I made enough phonecalls? Exhausted all my resources?!!!” I’m so tired of watched her struggle, I know all of you can relate. This is the hardest thing. I get so sad when I see other mamas feeding their babies so smoothly. Why can’t I give her that?I don’t mean to be throwing myself a pity party, well…….sort of
I guess it’s just a lot for a first time mom. Well, for ANY mom to go through and watch her baby go through. Thanks for letting me vent.Kate’s Mommy 2007-6-22 21:33:8 (((HUGS)))
we’re still struggling too. nothing is working and Joe is miserable all the time. he managed to gain enough weight to keep him out of the hospital but if he keeps this up i’m almost certain we will be there shortly. i know how you feel, about failing. i feel the same way so often. i hate how reflux has messed up our bfing relationship. most of the time i have to pump and bottle feed because it’s the only way i can squirt milk into his mouth.I am so sorry that you are going through such hard times. YOU ARE NOT FAILING YOUR BUBS…you are doing the best job any mum can do given the challenges that you are facing. There is absolutely nothing more you can do than that.
Claire,
to you! I think we all have felt your frustration regardless of the extent of our reflux issues! Please don’t doubt yourself — you are not failing Kate! You are a wonderful Mom doing everything you can for her! I agree with Lori that you should email Laura (Hellbent). She is a wealth of information, and may have some suggestions, or at least a link to a website that may help with some information (sorry to put so much pressure on you Laura!). I also agree that you should tell your doctor your concerns — please don’t feel like you are bothering him, that’s what he’s there for! If he has a nurse that returns calls, call her!I hope you are able to get some answers and a good action plan for treatment!
I think breast milk can be thickened with Simply Thick. I’m not positive, but you could look into that.
I really feel for you.
I remember how horrible it was to have so many issues with breast feeding. All I wanted was to breast feed my babies without trauma – the way babies are meant to be fed. But reflux ruined that for me and it was extremely emotionally painful. I had to pump and bottle feed all three of my children. I still feel a twinge of grief when I see moms nursing their happy little babies. I think it’s great that you are going to see a Pulmonologist. If he agrees that the tests need to be done then maybe you will feel more calm about it. Also don’t be afraid to call the hospital and ask specifically what to expect for both of these tests. I’ve done that each time my children have had to undergo any kind of a test and it really helped to calm my nerves. I just the dept where the test was going to be done and said, “My baby having such and such test. I’m really nervous about. Can you tell me exactly what will be done?”
Liza had to be on prophylactic antibiotics for a long time (over a year) because she was born with a UTI and she had kidney reflux (diagnosed via the VCUG). I completely understand your reservations about that. You hate to have you baby on meds long term, but you’re scared they will get kidney damage if you stop the meds. Did her first UTI show kindey reflux?
I hope things start to improve soon.
hey everyone & Claire!
Claire PM’d me & I answered pretty much what all of you did
:there is ‘simply thick’ and also ‘thick it’ that can be used to thicken breastmilk- if this is the way to go, then do a search* to figure out which one is best- see below about how to find out if you need to go this route:
the first thing to do since it’s a weekend is to call: The La Leche League Breastfeeding Helpline – US began on June 1, 2007. Everyone in the U.S.A. will have access to toll free breastfeeding help 24 hours a day. Just call 1-877-4-LALECHE (1-877-452-5324). I would also email dr. jack newman because why not?
Next, I would speak to the doctor about how to continue breastfeeding- the pulminologist just might have ideas
– maybe you can breastfeed at certain times in the day w/o it being detrimental to her and then the rest of the time pump & bottle feed. I truly do not know about aspiration so I would most certainly express my concerns to the experts– both breastfeeding experts (la leche & dr newman) and the pulm…I would gather that the speech person who did the swallow study who found the aspiration is associated with a doctor- I’m guessing the Pulm? I would FAX your questions Monday so that you know what to do starting Monday as far as breastfeeding/bottle feeding etc.
about the endoscopy: this is actually good because they will look for eos cells and if everything looks good you most likely can go start eating whatever you want again. I am not you, nor do I know your baby, but from all that you’ve posted it may not be mspi. now, the endoscopy can only show if there is allergy stuff going on, not intolerances, but at leat then you’ll know for sure
about allergies and you might decide to try adding milk and soy back to you diet. or not.*to do a search: there’s the ‘search’ button located in the upper right hand corner of the screen
you put the key word/s you’re searching for
then you choose “Topic Subject” from the drop- down menu of “Search In”
then I like to choose “All Forums” from the drop- down menu of “Search Forum”
then I like to choose “Topic Start Date” from the drop- down menu of “Sort Results By” (this way I get all the posts from the past that might help me)
hellbennt2007-6-23 10:25:14
Thanks Everybody for your heartfelt sympathyand sweet words.
This is so hard. I actually did e-mail Dr. Jack Newman and he said to forget the thickening and the formula and just bf her because in the end bf will be less damaging to her then if she aspirates with formula because it’s a foreign body. I also talked to a rep from LLL and her advice was the same. Dr. Newman also said that they don’t even know if she’s aspirating on the breast because the test was done with a bottle.
Here are my thoughts: Neither of these people have actually seen Kate feed or have talked to the docs involved with her care therefore all they can do is speculate. I believe Dr. Jack Newman to be very good at what he does but he’s trying his best to give me advice just based on an e-mail so I have to take that into consideration. I believe Kate is aspirating more at the breast then she does with the bottle. From what I understand after a day on the computer and on the phone, even silent aspiration causes such discomfort for the baby which would explain her whimpering, discomfort and agitation. She gulps so much air and that makes her throw up even more then she does already.My heart is breaking. Her case is so complicated because her symptoms are all over the map and I feel like I’m trying to put a 4000 piece puzzle together without the box. I feel so helpless. I don’t know now if I should thicken the feedings, formula feed or what. I’ll call her G.I doc on Monday but I’m sure I’ll only get his nurse and she’ll just tell me to thicken the feeds like the speech therapist says. I thickened her afternoon feed with Simply Thick and she still struggled. She wasn’t gulping as much air though so maybe………
Thank you all who are reading for letting me unload. In addition to all of this, my in-laws came last night from Minnasota(drove) and stormed out of the house at 11:30p.m after a long time coming confrontation. It was inevitable really. They drove back home. That’s another story. Please say a prayer for my daughter and I! I hope this can all be resolved soon.
I appreciate all of you so much!! Hugs and prayers for you and Kate! I hope you find a solution soon.Hey Claire,
I just got to this. I’m so sorry to hear all of this. And especially to hear about the aspirating. I can’t imagine how lost and frustrated you must be feeling.
Please know that whatever you decide to do, whether it be continue to breastfeed or go to formula, you are doing all you can for your little one, and that’s all she or anyone else expects of you. I know it’s hard to take all of this out on yourself, because who else can you really, but try not to. Don’t beat yourself up. You are really doing a great job. It really sounds like you are asking all the right questions, following through on all that you can.
Keep us updated, and I will pray that your puzzle will at least come with a set of directions this time!
Just wanted to let you know that we will be saying prayers both for you and Kate. This is such a hard decision for you and I don’t want to complicate it but I wanted to share with you some of our story.
Kayleigh was also aspirating when she was only a few months old. We were lucky enough that in our town there is a feeding clinic and ascessment(sp?) clinic. Kayleigh was seen by a speech therapist as well as an OT and PT and finally by a pediatric nurse. It was determined that we did need to thicken her feeds and we did alot of positioning. Being seen by all of these people at the same time was a godsend.
If there is anything like this in your area I would highly recommend it. I always second guessed myself too about whether I was explaining it right or if I had forgotten anything important and finally I just kept a small notebook around and wrote down little details as it happened. Sometimes it was hard to do with a screaming miserable little one in your arms but It helped me to feel proactive rather than reactive. Hope this helps. You are a great Mommy. Keep up the good work and soon Kate should be feeling better.
Oh Claire!
I am coming in so late on this and. I am sorry. You and Kate are in my prayers. And the in-laws…
I can certainly *feel* your frustration there. We had the same issue this past Christmas. I feel for you and I am praying for answers for you!!
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