Posted By Posting
Nov 02, 2010
meredithy
Scared
We just got home from a 5 day stint in the hospital for choking episodes! I am so scared to be home alone with my son!! I dont want him to choke! We had the swallow study and everything was normal. He does better with thin liquids such as breast milk. He has to work harder for the formula consistency liquid. The upper GI was normal. He did not do well on the Nutramigen, Neocate and Elecare. I guess he did best on the Alimentum because there was no blood in his stool and limited choking episodes. I am trying to increase my milk supply but it has been hard on this elimination diet(no dairy, soy, wheat, eggs, nuts and corn). Basically they said that we can try the breastfeeding, supplementing with Alimentum and they wanted to take him off Reglan due to the side effect he was showing(irritability, head twitches...). They wanted me to stay another night but I begged to come home to be with my family! I am so scared and so sad! Will this ever get better???? Will I ever be the same?? When will my anxiety go away??? Can I try something different?? Help!! I am so sick of being scared and crying! I just want my baby to be ok!!! All of my friends who had babies around the same time are in their routine and the baby is happy, reaching milestones and sleeping through the night! Oh and tolerating formula and not choking/coughing!!! Any advice? Anyone feel the same??? Thanks!
Nov 02, 2010
dcd
Our situation is different, but I want you to know that I do feel the same. I adore my daughter and despite her issues she is a joy to everyone around her...but I find myself envious of friends whose babies are sleeping through the night and can sit quietly drinking a bottle with no problems. It's been 8.5 months and we are still up all nigh long. We are exhausted and stressed out, which is taking a toll on everything. I just want to find out WHAT ALL is bothering my baby so I can help her and we can get some kind of a life back together.

She is doing very well in many ways on the Neocate, but she still has disturbed sleep, still has coughing/gagging/choking with her bottles, still can't eat as much as she should for her age. I feel like the Neocate was about 80% of the puzzle, but we're still missing something. I also feel like I'm at a breaking point. We have appointments with a pediatric pulmonologist and GI coming up. At this point I'm willing to do whatever tests are necessary to rule things in or out. I want to take back control of our life!

I hope you find relief soon too. I know you feel like you are drowning, but this WILL get better. Keep fighting for answers.

Nov 02, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Did they do an EDG in the O.R. to check for other issues like EE yet? That would be a GREAT next step in the process. With allergies going on like that you want to rule out something more serious.

How long did you do each formula? It can take 2 weeks for each formula change in order to see the full results.

Does choking go on when you breastfeed or only when you bottle feed? What kinds of bottles and nipples are you using.

Since you stopped the Reglan, you can ask about starting up Erythromycin in low doses. It is also used as a motility drug, Jedd used it before and after our stint with Reglan.

I can promise you, things DO get better. It takes time. For some, it's a short amount of time, for others like our son, it takes longer.

I really feel deep down that you should add meats to you list of foods to avoid.......I don't know why, I'm just saying if you have totally eliminated all those other foods and are still seeing issues, the list of foods to avoid probably needs to be expanded as hard as that is.

Don't beat yourself up if you have to stop breastfeeding. I had to stop, I had no choice, I was just about killing myself to try and pump and feed Jedd. Then he wouldn't take anything due ot his undiagnosed heart defect. So, I'd have to pump while he slept and then wake up within the hour to try all over again since he was only taking about 1 ounce at a time. I was about to die, so I know how you feel.

Looking back, it was not worth my sanity to continue trying to breastfeed. Some situations, you just can't. Don't feel sub par because if it and don't let anyone make you feel that way.

Nov 02, 2010
dcd
I agree with Jeddsmommy about the breastfeeding. In some situations, you just can't. Since he does better on thinner liquids, is it possible to dilute/thin out the formula in some way? I don't know if that's even an option.
Nov 02, 2010
lorenzomama
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.
Has any one talked with you about neurological/sensory processing issues? I ask because it is one of the most common and most commonly overlooked causes of "colic" (which is nothing more than a catch all term for a baby who cries following a particular pattern and no one knows why), and often results in gagging and choking episodes, especially on thick liquids and solids. For many (including my son) what happens is basically that the brain goes into fight or flight mode due to a sensory overload from the fluid or solids in their upper digestive tract, which results in a sort of panic reaction.

My son suffered from gagging and choking episodes, aspirations, apnea episodes, elevated heart rates and a host of behavioral anomalies as a result of sensory issues. It took us over 3 years to figure it out, and the difference now is nothing short of unbelievable.

I'm so sorry you and your LO are going through this. Whatever the cause, the not knowing and the subsequent fear and anxiety are truly exhausting. We still have some struggles, and I know just what you mean about seeing friends with babies and kids who are doing so well, and just feeling so sad and depressed about not being among them... ((HUGS)) Also, for what it's worth, I have been breastfeeding for 3 1/2 years, through all sorts of hell, so if you decide that you are committed to continuing and need some support for that decision, just holler...

Nov 03, 2010
maddy's mom
Could it be a cleft palate? Maybe worth a check if you haven't already mentioned it to the dr.
Nov 03, 2010
adelines mom
meredithy, sorry you are having such a tough time and had to go back to the hospital. adeline did pretty well on alimentum. we did that the first eight months. it sure does smell bad though. she was in the progressive care nursery at our hospital for the first 10 days of life and they sent us home with an apnea monitor. she wore it all the time for a couple of weeks. kinda tough carrying the box around, and then we only used it at night. most of the time it was a false lead that went off, or one of the night nurses would yank a wire. that helped with peace of mind. also, are you elevating him after his bottles/feedings and at night? we used the danny sling on top of a tuckers wedge with a boppy turned under adeline's fanny for a LONG time. she took and still takes her naps upright on us during the day. SHE HAS TO BE ELEVATED! forget other peoples routines and milestones. adeline is two and a half and our nights are still terrible. i quit compairing our life to others a long time ago. it is hard and it is isolating, but you do what you have to do for your child. we worked with a feeding specialist at the hospital since adeline was in the progressive care nursery. she has a high arched palate, a by product of her chromosonal deletion. she had a tough time with nipples. the specialist had a really neat nipple called a pigeon nipple from japan. it was firm on top and soft on the bottom and that really helped her drink/latch on to a bottle. just throwing that out. we are on day seven of the neocate jr. working pretty well. first couple of nights she woke up crying a lot, but that has gotten better. she has also grown some over the last two weeks, actually gotten longer. we are doing the 30 calorie per bottle. we had been at 24 calorie. keeping my fingers crossed! we started with a new physical therapist yesterday and are really excited. think she can really help us with her foot that is turning in and building her up. she is still like gumby with her low tone. hang in there!
Check with your
doctor first!