|Sep 23, 2009|
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
our story.. please read and help if you can...LONGI 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.
|Sep 23, 2009|
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
|I wish I could help more, but a lot of this is out of my league. However, I am pretty knowledgable about food allergies & I just wanted to say that if you have to go to a bottle & you think food allergies may be contributing, I would recommend Nutramagen (hypoallergenic) or something like Neocate (elemental - great, but more expensive). Also, my last child, #4 actually, has had complex medical issues since two weeks of age. I remember how bad it was, esp. shortly after giving birth. I hope someone can be around to help you (in my case it was my mother). If you need more than that, seek it out with your doctor. You need to stay strong & healthy until you get to the bottom of all this. Lastly, I think breastmilk/feeding is the best thing for mother & child, but if you HAVE to go to the bottle for medical reasons, let go of the guilt. You have already gone to extreme measures to see that your child has had the breastmilk all this time & that will go a long way. My oldest is 15 (she is also my healthiest) & it just so happens that she was bottle fed (she got nipple confusion early on). Anyway, please let us know how things are going. I hope someone here can help you more with the aspirating questions, etc. El |
|Sep 23, 2009|
|HANG in there! wish i could give you a hug right now. know that it is tough. our daugther adeline was born May 2008. Choked the first afternoon in the hospital when i was trying to breastfeed. turned blue. then it went down hill from there. went into the progressive care nursery for 10 days. lots and LOTS of test. poor suck swallow. they put her on enfamil ar. after 10 days HORRIBLE diaper rash and blood in stools. then we went on alimentum. had a great feeding specialist at the hospital that introduced us to a pigeon nipple. it was japanese and had a firm side to the nipple. saved her life. did barium swallow test. okay. protecting her airway, but refluxing very high. definately ger. did not know any better and tried to thicken with rice. ugh!!! then started on simply thick nectar and that made a world of difference. just stopped using it two weeks ago at 15 1/2 months. Think we used a packet and a half at first or maybe two. still use dr. brown's colic bottles and their stirring pitcher. i pumped every three hours for THREE weeks and froze it. I later introduced it at seven months. you keep pumping if you want to and freeze it. adeline was on an apena monitor at night for eight months. think they did that for us for piece of mind. have been with her 24/7 since she was born. always someone in the room with her at all times.
she did reglan for the first two weeks and i got her off it moved to axid which worked great for a while, then prevacid and then moved to compounded prilosec and she has been on that for about 8 months.
know you don't have time, but the reflux book and colic solved saved my life. my husband and i and my sister would each read a chapter a day. i have never been through anything so stressful in my life. i went on wellbutrin for three months. i hated asking my doctor for it. it helped take the edge off. hated to think that i needed a pill to get through the day!!! we started early intervention with her at 3 months. have worked with a wonderful occupational therapist. she has had low tone since birth. just starting to work with their speech, physical therapist and feeding specialist.
take it one day at a time. go with your gut and keep asking questions. we have been so lucky with good doctors. get rid of the ones that don't help! we worked with a night nurse for months. it was expensive, but worth it. i really had a tough time coming back from my c section.
this is a great website. wanted to share with you. hope this helps. we have all been there!!!|
|Sep 24, 2009|
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
|((HUGS)) to you mama -- you have been on a very rough ride, and I know from experience how devastating each step can feel when you are also struggling with PPD. Please do not be afraid to seek professional assistance with the PPD. Your little one's health issues are probably no going to go away anytime soon, so the sooner you can get the support and help you need to help with PPD, the sooner you will at least not feel like the world is collapsing in on you.|
I'm glad to hear that you have received so much medical support for your little one. We went through a similar initial experience with our little one, but received very little follow up care or testing, and so spent two years trying to get anyone to take seriously the apnea and choking episodes I was witnessing. So, as hard as it is to see your little one go through all of these tests, it is a blessing in some ways too.
As for breastfeeding, if you have not already been there, please go to the La Leche League website, at www.llli.org where you can get trained assistance as well as post questions and concerns on the Mother-to Mother Forum. It is an amazing resource for information, advice and support. I will never forget the emotional pain I felt when my son nearly died on day 1, and I couldn't nurse him for several days while he was on a respirator, and I was so afraid that I would never get to nurse him again. It was a real struggle, for a very long time, but we were fortunate enough to get through it and he is still nursing at 2 1/2. That said, I have definitely learned that nursing a refluxer is a blessing and a gift, but not a given -- sometimes it just can't be done in the context of what is happening for mama and baby. Let yourself grieve if it comes to that, but let your grief be free of guilt, as you have already done so much to try to do what you feel is best for your little one and yourself. Sometimes life is just not within our control...
Finally, if it available to you, I strongly encourage you to seek out alternative therapies for your little one. We found that western medicine was wonderful for diagnosing problems, but didn't always align with our values and perspectives when it came to treatment. We ended up finding a craniosacral therapist and a Chinese Medicine Practitioner/Acupuncturist who have helped us through a great many of our little ones' challenges. Some people find Homeopathy helpful as well. None of them are miracle cures, but they can provide a more holistic appraoch to wellness in some cases.
My very best wishes to you, and I hope to see you over at the La Leche League site :)
|Sep 26, 2009|
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
|huge hugs and may u find peace in knowing that you have done everything within your power of making breastfeeding work. Breastfeeding is the best a child can have, but when not possible, know that bottle feeding can also be a great bonding experience. |
You have been through a lot and u are standing strong. Please give yourself credit for that. I would definitely seek professional help. It is better to go now and deal with your emotions and needs that to let it all build up.
A therapist can be a great tool. They are able to give a non biased feed back and are there to listen not to judge. I agree with the llli.org.
|Oct 23, 2009|
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
|ok, so they decided to do another bronchoscopy... we had it done on Tuesday after one full month of thickening all his liquids to 1/6 nectar and his lipid levels are the same...100. Now the dr's are talking about it being reflux related, wanting to do MORE testing and put him in the hospital for it. They are talking Motility meds, fundo....
So... here is my question. My kids is healthy. Never had pnemonia even tho he has been aspirating since birth. I was told by the Lactation nurse that she thinks it is ok for me to nurse him in a modified way where I would pump past letdown and nurse him on hind milk only which is thicker than foremilk. We did this in the office as she observed and he did great with it. I do not physically see anything wrong with him, except that he is a noisy eater at times, sometimes gets fussy if I eat wrong. I just think that doing further things at this point does not make any sense. What woudl you do? I feel like tellinging them that I don't want anything else done, and to just see how he does. If he gets pnemonia or starts having complications from the aspiration, other than just that number on a paper in the office.... then I will do other things, but why fix something when there are no symptoms?
They also want to do RAST testing... we had him poked twice in the office, they dug around in his arm for over 20 minutes and did not get even ONE DROP of blood.... is it really worth it? I just want him to be a normal kid!!!!!!!!|
|Oct 25, 2009|
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
|I would ask them about those issues again. I totally understand not wanting to do more testing. You may also wish to discuss with them how important the tests are and what part of his treatment plan will change or if there is any danger in waiting to do the tests. Maybe they can pick which things would be most important to check now and which can wait?|
I am so sorry you are dealing with all of this. It is not fun to have to watch your kids get poked and prodded. Hopefully whatever you/the dr's decide together your son will thrive and be healthy!! ((HUGS))
FYI, Try reposting this as a new topic too. It will be hard to see over here and you may get more responses as a new thread.
|Check with your