new here….. need advice/support

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.