new here….. need advice/support

[Anonymous]

I guess I will just start at the beginning…..
Jacob was born full term, healthy nearly 9 lbs. He had a two vessel
cord at birth that we knew was there since his 20 week Ultrasound. He
seemed healthy at birth and when we went home. He had a couple times in
the hospital when he would swallow allot, like he could not get his
throat cleared. The nurse did suction him out once with a tiny little
tube, and he had some really thick mucus stuff in his throat. We went
home as planned and he seemed just fine. When he was 6 days old we had
to call 911 because he had thrown up and was choking. He kept gasping
and could not seem to catch his breath. We were taking by ambulance to
the er, they gave him oxygen on the way there and did numerous tests in
the er, cat scan, xray, ekg etc.. all were fine. We were transferred to
another hospital and admitted for 2 days. He was treated for mild
jaundice, put on reflux precautions and monitored. We were sent home on
an apnea monitor just for peace of mind. The ped took a stool sample at
one of our visits right after the first hospital stay and said that he
had traces of blood in his stool and to eliminate soy and dairy from my
diet to see if that helps the reflux. Little did I know I was doing it
all wrong….I was only eliminating the obvious sources, cheese, milk,
ice cream etc…not reading labels.
For the next 20ish days he did OK, random gulping gasping episodes,
puking etc. He was always fussy, turning himself red in the face while
stiffening his body and crying in pain and quite a few apnea alarms
with low hr too. When he was 28 days old he had another choking episode
and his arms and legs turned purple. We were rushed back to the er and
transferred again to another hospital. We were admitted and stayed 10
days. They did a myriad of tests starting with a modified barium
swallow and upper gi. The upper gi came out normal but the swallow test
showed he was aspirating. I was completely devastated when they told me
I would have to stop nursing and use bottles so that his milk could be
thickened to nectar consistency. They brought me a breast pump and the
insanity began. I have 3 other children who all breastfed for long
time. I cried for days telling the nurses I just did not know how to
bottle feed. I pumped everything for him, he has never had any formula.
They then started doing a bunch of other tests, genetic testing, urine
tests, ph probe ( which the old gi said was normal, but I could tell by
reading the number on the screen and looking at him, it was not normal.
Every time the number dipped, he would want to eat to sooth his tummy).
Before the ph probe they put him on Zantac, and for the first time he
seemed like a normal happy baby… his fussiness was gone!!!! Then they
had us go off of it for 5 days before the ph probe. It took almost 2
full weeks when we got back on it for it to fully work again. His dose
has been changed 3 times, from 1ml to 2 ml then to 2.5 ml, all 2 times
a day. He is still doing well on 2.5 ml at nearly 18 lbs. 6 weeks later
they did another swallow study and he was still aspirating, however
they moved him from a 4oz to 1 pack nectar to a 8 oz to 1 pack nectar
consistency and told me that I should be eliminating soy, dairy, eggs,
wheat and nuts from my diet. So for just over a week I ate nearly
nothing… it was horrible!!! We went to see the new GI and he changed
that saying there would be no way I could keep up my milk supply and
calories on that diet and put me on a dairy and soy free diet thinking
that they are two very common allergies and to start with that. He had
me talk to a nutritionist and they gave me a big list of all the stuff
I could not eat and to look for in labels… helpful info! So then my
pediatrician called me with a report from them downloading my apnea
monitor and told me he had had 13 short episodes of apnea with
bradycardia and 3 prolonged episodes with bradycardia. She asked when
my next apt with the apnea clinic was, to which I responded, I have
never been to one.. what is it? So, we made an apt with the apnea
clinic, and pulminologist. After being asked about 100 questions by 3
diff doctors there they came to the conclusion that they would want to
do a bronchoscopy because when he aspirates he does not cough, choke or
anything… considered it to be silent aspiration and they wanted to
see if there was a physical reason for it and to check the lipid
levels. Next we had another swallow study, a week before the
bronchoscopy. He seemed to do better, at least he was not frank
aspirating right away like the last two, however once they got to the
fatigue part of the testing he started having delayed swallow and
laryngeal penetrations. They changed his thickness to 6 oz to 1 packet
of nectar and told me not to breastfeed anymore even once a day. I
called and talked to the apnea/pulm nurse and she said that since I had
already been nursing once a day to just continue it and they would know
more after the bronch. So, they do the bronch, and tell me he has mild
tracheomalacia. His lipid index was 106. I was then told once again not
to nurse even once a day… at this point I am absolutely a messs..
emotionally and physically… I want to nurse my baby.. it is what I
know how to do. So then the very next day the apnea nurse calls again
and said that the pulminologist took a further look at his chart and
thinks that he is not only a
spirating on swallow but refluxing and aspirating also. They are
talking about changing his meds and or adding new meds to stop the
reflux altogether and then doing another bronchoscopy to check the
lipid number again. So now here I am waiting for the results of the EDG
and sigmoidoscopy from the GI, who I have left 3 messages with. I asked
the apnea nurse how they will know if it is the breastfeeding that was
causing the high lipid or reflux aspiration if they take away the
breastfeeding and change his meds, she said they won’t. I am hoping and
praying that someday I will get to nurse him again. It hurts… so bad
to have to give him a bottle. My last baby and I am missing it all.
WHY????? WHy did this have to happen to my baby? I also noticed that
occasionally he has stridor, when eating. He used to sound all gurgly
after nursing laying down, he no longer does. So many ways I thought he
was better but now it seems like everything is worse. Please.. if you
have any suggestions or comments or anything… I just need support….
I want to know my baby is going to be ok and that he will outgrow this
quick. It is killing our family, my other kids are suffering and I am
knee deep in post pardum depression.

[hellbennt]

oh mama!!!! big hugs~! i’ve sent out a ‘rallying’ email to get you some support~!

[Anonymous]

Hi there and Welcome! You have been through so much already! I can’t help w/breastfeeding as I only pumped and when my supply was gone we did bottle feed. I can tell you it DOES get better!!!! You are learning so much so fast and it sounds like you have a good team of docs. I LOVE our pulmonologist sand we are in CT.(not sure where you are from) and that was a very important piece with Carter for us (not all reflux related for him). There are moms here from all over the country and will be willing to share if they like a doc better than another, etc.

You have stumbled on an amazing grou of people here that will offer tons of support and more!

[Anonymous]

i don’t theink there are any med that will stop he reflux all together. i am assuming they are referring to a motility drug so that his stomach empties faster which equals lews chance of spitting up—but it won’t stop it completely.

i’ve done the major post partum depression thing—took me a good year (?) to get myself to a “new” normal. i could only nurse my baby for 2 weeks because i had to go on meds—-and i cried when i gave him that first bottle. but, looking back, i also know it gave me the freedom to get away when i needed to—-and i did ALOT of walking—–and alot of crying.

is ph probe could very well be normal even if it dipped occasionally, because all babies reflux. he may not have refluxed enough to pass the point of what is considered normal—of course, that doesn’t help if your baby is miserable.

the aspiration is more of a concern. some babies aspirate and it doesn’t cause them much trouble and they just reabsorb the fluid. it sounds like your baby is having problems with aspirating.

my daughter had a fundo just before she turned 10 months old. it did wonders for her and she has never had a complication from it. however, she did not aspirate, but it was causing her oxygen levels to desat. she was also failure to thrive and anemic and her esophagus was getting ulcerated at 8 months. turned out she had a hiatal hernia.

aspiration is one of the reasons they will do a fundo. helps to avoid all the lung problems that can come with aspirating their milk and whatever they are refluxing.

i’m not saying this is what your son needs, but you might want to ask about it and look into it.

[Anonymous]

Hi there! I’m so sorry for what you’re going through. It really sounds like it’s been very hard. If you’re really wanting to nurse, then I’d check with a BF forum to see if there’s anything that will thicken breast milk. I didn’t know that you couldn’t do it with cereal with my daughter, and couldnt’ figure out what was going on. My dd had stridor and tracheomalacia. It used to scare me to pieces, she’d cough and cough and arch and scream and sometimes look bluish and sound like she was gurly after. Once I called 911. But every time they listened to her chest, it sounded clear. We had a swallowing study, but they wouldn’t do the modified barium swallow b/c they said that she sounded fine, and I fought and fought but never got anywhere. You’re 10 steps ahead of that. You know what’s wrong with your baby and you’re doing all that you can to help him. Maybe there’s something you can do to still nurse. If not directly, maybe you can pump and freeeze, and mix the formula with the breastmilk- ask your doctor, or someone who’s pro-BF. Really, breastfeeding is about doing what’s best for your baby. BUT for some babies it might not be best. It doesn’t mean that you’re a failure or that you’ve done anything wrong. You’re just trying to do what’s best for your child. When my refluxer was having a terrible time, I went through an awful grieving process. I was quite depressed, it was hurting my family due to the stress and demands. It wasn’t until things were better that I realized that difficult things sometimes happen to good people and we don’t always know why. There’s no answer to “why me” except for “why not?”. The good thing about reflux and swallowing problems is that they do pass eventually as the baby matures. That doesn’t make it easier, but remember that. As I said, I couldn’t focus on that while I was in it. But last year I got a call from my older child’s school that she was having a seizure in class and that they’d called 911. My heart sank and our life was changed in an instant. That put things in perspective for me. So hang in there, and get yourself help if you can. Talk to people who get it, and get people to give you hands on support. You’ll make it through, and bond with your baby whether you can BF or not.

About aspiration, there are some treatments that they do to help kids who are aspirating silently. I don’t remember them personally. I hope this is okay to do- THIS FORUM IS AMAZING. BUT, there aren’t too many moms going through the same thing here. So, you might want to also check out http://www.parent-2-parent.com and go into their forums. There used to be a moderator on there whose baby had the same issue, and I know others as well. Good luck. I hope you get the help that you need.

HUGS.

s&h’s mum2009-09-24 07:54:27

[hellbennt]

Lori, yes yes provide resources! that’s what’s so great about this place! we come together to find out how best to help one another!!
I’m posting a link- it’ll wind up garbeld bcse when I copy & paste from MS word to Mozilla it gets wonky, but here goes [edited to add- the link that’s important works – it’s the la leche league int’l one, lli.org]:

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great resources for moms
breastfeeding allergy babies on the LLLI website:
http://forums.llli.org/forumdisplay.php?f=37

hellbennt2009-09-24 07:52:34

[Anonymous]

Hello,

I feel so terrible that you are going through this! First off, I do not have experience with the aspirations, so I don’t know much about that. What I have done is nursed my babies on a special diet. My first was gluten/wheat, dairy, soy, beef and all things acidic (tomatoes, chocolate, coffee, citrus– free. He also has severe reflux, was and still is on Zegerid, registered over 230 reflux sessions on his ph probe test and has a hiatal hernia. My second and little 12 month old has me on a dairy, soy, beef, corn, all nuts, fish/shellfish, and all things acidic– free diet. She is also on Zegerid– 3X day, on the highest dose recommended. There are tons of things to eat. Just not probably what you would normally eat. I am of the firm opinion that if it’s an issue of removing foods in your diet, you can remain healthy if you are committed to finding some different foods than what you used to eat and eating a LOT to keep the weight on. But I’m not sure what to say about nursing with your particular situation with the aspirations. I am sure that a good lactation consultant could speak to you more about this one. I also feel that breastmilk has evolved to be the perfect food for babies, otherwise none of us would be here!– so there is usually something that can be done for those of us who are able to continue in special/different ways of nursing.

Also, not knowing much and not being a doctor, I would say that with your scenario, just being on zantac is not enough. My children did not do well on Zantac, it was never strong enough for them. My youngest responded for about a week and then we ended up needing to switch her to a ppi (proton pump inhibitor) and even then she wasn’t better until she was on three doses a day. We had all the typical reflux symptoms of crying during feedings, arching, lots of crying, not much sleeping, projectile (and lots of) vomiting, and I was also dealing with overactive letdown, which contributed to lots of spit ups. I think a ppi like zegerid would help a lot with the baby’s uncomfortability and with the arching sandifer’s type symptoms.

I don’t know that much about ppd, just that the best way to be the best mama is to be able to take care of yourself, too. Hang in there. This forum saved my children and probably my marriage– I am not exaggerating– because the support and information is so incredible. Find that kind of support and hang onto to it wherever you can find it. I hope things improve for you! If you need food ideas on the dairy/soy free diet or any other version, let me know. I also have food ideas posted here: https://www.infantreflux.org/forum/forum_posts.asp?TID=7715

I wrote that a few years back, so obviously it’s good to check ingredients when purchasing to make sure things haven’t changed at all.

Sending big hugs your way!!!

–anne

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