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Hello! First time here..24 weeker with NEC issues

jonathan24weeker
0 Recommendations

Hi, my name is Becky and i gave birth to my son on August 19, 2009 at exactly 24 weeks. His name is Jonathan and he was 1lb 5oz and 11 inches. It has been a long journey so far and still have a lot more to go.
Jonathan was on a ventilator for the first couple of days of life, he was then switched to an oscillator for about a week, the back to the vent. His first try at CPAP was in the middle of September and he only lasted about 12 hours. They tried again about a week later on 9/29 and successfully got him on CPAP. Unfortunately this time only lasted until 10/3 because he developed NEC and had to be reintubated. Jonathan was treated for the NEC for 10 days and remained NPO during that time (he had been on full feeds for three weeks prior). We got him back to CPAP on 10/10 and he's remained there ever since. He got back to full feeds within 4 days after the antibiotics were done and the NEC was thankfully caught early enough to not cause any damage. He's been doing really well since the NEC, staying on CPAP with good blood gases and low oxygen needs (21-27%) and has finally started to put on weight. He's up to 2lbs 4oz ! Unfortunately late last night his belly started measuring big and his oxygen increased to the 30's so they did an xray which showed air in his intestines. Feedings were stopped immediately and a repogul was put in to pull the air out of his belly. His xray this afternoon showed no improvement or worsening and he's not showing any signs of infection. His oxygen needs did come back to his normal range and he appears to be his normal self right now. They are going to do another xray this evening along with a CBC and a CRP. So basically wait and watch and hope it's not NEC again. This roller coaster never ends does it ? Has anyone else out there had NEC issues or feeding intolerances ? (by the way, Jonathan has been on breastmilk fortified to 24 calories and MCT oil)

Explore topics in this discussion:

Allergies CPAP

11 replies

katek

Dear Becky,

I just wanted to say hello. I'll be sending positive thoughts your way. My son was a 25-weeker born 1 lb 3.65 ozs. He had many rounds of feeding intolerances. Around 6 weeks or so, he had the distension in the belly, was taken off feeds, the neonataglogist saw bubbles in the intestines via x-ray. Henry was put on antibiotics and taken off feeds for a week. And that occurred two days after we thought he was doing really well and felt that we could finally breath.

The roller coaster usually slows down once baby reaches his due date. Until then, it seems like each new gestational week is filled with a different set of issues. I won't say that the roller coaster stops...but at least every moment isn't filled with the same degree of tension that occurs in the NICU.

For what it is worth, my son was eventually diagnosed with a cow's milk allergy and soy allergy AFTER he left the NICU. I strongly suspect that contributed to his many rounds of feeding problems. But for whatever reason, the neonatalogists seem to disregard allergies as a potential cause. My son came home around his due date (5 days after) weighing 4 lbs 13 ozs (a little light for his gestional age). I pumped for my son. I ended up having to eliminate soy and dairy from my diet. And we ended up fortifying with Neocate which is an elemental formula (insteaad of the HMF which is made from cow's milk). As it turns out, milk is the number one infant allergy (a bit of a problem given that most formulas are made from cow's milk).

Please take good care of yourself. Best wishes to you and Jonathan!

Teesa1221

Sounds like our son but he was a 29 weeker. Two NEC scares, both times after getting to full feeds with fortifier added to BM. After he recovered the 2nd time we insisted that something be done about the fortifier. The Neos fortified with Elecare, which is a special formula for a possible milk allergy and we didn't have any more issues after that. Insist on a different fortifier maybe. Good luck and I'll be thinking of you!

alexacolbert

Cried when I read your post. My twins were born at 3 days shy of 24 weeks. Its good they caught the NEC early they didn't with my baby. SHe was doing great. The doctor said she was like a 26 alomost 27 weeker. They were going to take her off the vent but 11 days after being born she got sick and the next day she passed away. It came on quick. Thats good they caught it. Keep me posted please. I will keep you in my prayers.
Dianna

jonathan24weeker

Thanks for the advice and prayers. He had a CBC and CRP done at 4pm and both were fine, still no signs of infection. They have a xray scheduled for 9pm to see if there is any improvement in the intestines. His nurse did suggest me changing my diet to eliminate milk to see if that would help and the neo that is on for the weekend said to discuss it with jonathan's neo in the morning, we also dicussed the possibility of using Neocate. I'm glad i know about Elecare now too.

To Katek: you said you just fortified with the Neocate and changed your diet, or did they just give neocate? (By the way Jonathan is also very small for gestational age right now he's 34 weeks and 4 days, makes me wonder if a possible milk allergy contributes to his slow growth?)

I think i have alot to discuss with his neo's and nnp's in the morning thanks to you ladies!

katek

We fortified with Neocate. Upon discharge, the standard recommendation at our son's NICU was to use Enfamil (cow's milk formula) as a fortifier. In my son's case, the doctors wanted the bottles at 22 calories/oz (breast milk is 20 calories/oz). Four days after discharge, we had a ped's appointment. She discovered blood in my son's stool. That's how we knew there was a milk allergy. We switched to Isomil as the fortier (made of soy). The blood got even worse. So we ended up using a little Neocate to my pumped breast milk.

While my son was in the NICU, his rate of gain was slower than "normal." Yes, micropreemies in general have a flatter trajectory but if you plotted weight percentile, you could see the slip. He was below the bands of normality around his due date.

I was committed to him getting breast milk and willing to stop eating dairy and soy. I believe that it takes about two weeks to completely get dairy/soy out of your system when pumping. I pumped for 22 months. My son outpaced my supply when he was 5 months (adjusted). At that time, we supplemented by giving him full bottles of Neocate as a formula. At 8 months (adjusted), we switched from Neocate to goat's milk and that worked for him (about 50% of kids with cow's milk issues have goat's milk problems too; we were lucky that he wasn't one of them). Toward the last several months of me pumping, he only received about 3 ozs of breast milk per day, but I did it for the antibodies.

As an elemental formula, Neocate gets absorbed more quickly in the intestines. It was designed for "short gut" kids. We were very fortunate to have it as an option.

jonathan24weeker

Thanks so much, it's nice to talk to someone so well informed ! I am also committed to him getting breastmilk and willing to do whatever I can to acheive that. Another question, if he does have an allergy or intolerance to milk, is all the milk i have frozen going to be unusable ? That seems like such a waste.

katek

Don't throw out the older breast milk yet. Some kids "outgrow" the infant allergies (meaning that they basically had a sensitivity issue not a real "allergy").

Some kids are highly sensitive to the cow's milk, others not so much. We saw noticeable improvements with my son within a day or two of me eliminate cow's milk/soy from my diet. So even though it can take 14 days to get it all out of your system, it may be that you just need to reduce the amount of dairy/soy.

To make your breast milk last longer in the freezer, you can get a deep freezer, which I believe helps it last longer. Once your son's pattern has stabilized, you may be able to retroduce that milk.

There are some kids who ultimately have to go on elemental formulas only. Because while "breast is the best" generally speaking, for some kids, they have to have the amino acid formulas.

I think that part of the problem for my son was me being vegetarian. I suspect that I had even more cow's milk and soy proteins in my milk than the average woman. And, I was drinking cow's milk twice a day b/c I thought it was good for him (the NICU had a mommies fridge socked with milk for us to drink). I asked the doctors if my diet could be adversely affecting my son after the NEC scare. They said no, it was unlikely. But I think that they haven't fully investigated cow's milk allergies in part b/c they don't want to discourage women from pumping and they are afraid that if they recommend dietary restrictions, a large percentage will not bother to try. That's just my speculation.

Of course, in retrospect, it seems assine to me that they haven't fully researched the effects of maternal diet on things like feeding intolerances. After all, they have researched the negative effects of alcohol and hard drugs in breast milk. Why not study "normal" maternal diets? If pediatricians know that infant milk allergies exist, why aren't neonatalogists picking up on that area for research?

I'm certainly not claiming that cow's milk allergies explain all NEC cases. There are many contributions to NEC. But given that 7% of infants end up being diagnosed with cow's milk allergies AND about 5% of NICU babies get NEC, I would think that this area would merit further investigation. I'm well aware that correlation doesn't equal causation (I teach research methods), but when one sees similarities at the group level, it strikes me as odd to not at least study it so that one can either establish it as a cause OR rule it out as a possibility at the individual level. Sigh.

My son is 2.5 years old. He is doing very well. He is tall and skinny, but his appetite is pretty good (some days better than others). The feeding intolerance issue obviously left an impact on me. I felt very frustrated by the issue b/c I think that there are things that I could have done to minimize (if not eliminate) the number of times my son had feeding problems in the NICU if I had known. Unfortunately, I didn't even begin reading about normal baby stuff until after my son came home. Had I done so, I would have known about cow's milk and soy being problems for kids. But when my son was in the NICU, I read a lot but on neonate issues. And the literature is sadly lacking when it comes ot maternal diet.

jonathan24weeker

Thanks again for all of the information. We had a discussion with Jonathan's doctors this morning and due to his eosinphil count being high they now believe he is having milk allergy/intolerance. His x-rays looked better and he still has no signs of infection. Tomorrow they will be starting him back on feeds with Neocate while I switch to a dairy-free diet, my milk will then be added until we are just fortifying with Neocate.
On the plus side, Jonathan has been down to room air on his CPAP since yesterday with no events !!

tinyblessings

Hello Jonathan's mommy...I'm mom to a 24 week survivung twin girl Caroline. She had many GI issues after birth including 2 bowel perforations/NEC and a total of 3 abdominal surgeries. She stayed in the NICU for 5 months and is currently 10 months old/6 adjusted. We're feeding her pregestimil 24 cal after my milk supply dwindled and she has been doing really well on it. I was drawn to your post because my angel in heaven is Jonathan and he'll be watching over your little miracle. I know how hard it can be at times but all you can do is be there for them. All the best. Cathy

katek

Wow, that's great about the CPAP!

Please let us know how things go with the diet change. Also, as you eliminate dairy from your diet, remember that means anything that has "whey" or "casein" in the ingredients list.

It can be a difficult switch. One realizes just how many things dairy is in. I also eliminated soy, which is in a surprising amount of places.

Best wishes.

babygirls24n2

Hi Jonathan's mom! I am going through a somewhat similar situation with my surviving twin - a 24weeker (now 36, or 12 corrected).. They speculated as to whether the issue was NEC or not as it actually went away with antibiotics after she was made NPO for a few days. They switched her to the Progestamil 24cal also - and the problem has not returned (its been 3 weeks now). The GI team that was consulted said that she should stay on this for a month or two - first because its working, and we don't want to rock the boat once you get a 1 pounder up to almost 5!, and second because they cannot know for sure if it was a milk (lactose) allergy or an issue with the immature stomach not being able to fully digest the proteins in the breastmilk. They did say we could try a dairy free diet and breastmilk after that - but there are no guarantees. I stopped pumping (HOORAY) - but there is a freezer full of milk waiting for her when she is able to start mixing. The dieticians are creating various 'recipes' depending on calorie needs and various formula types for when we go home - some include mixing breastmilk just in case.
I had to come to terms with the fact that formula is okay. She is eating and growing and tolerating it - that is all that matters. If she needs formula to do it, then thats fine with me - I just want her home!
Hang in there - that CPAP business seems never ending! But he'll get off of it eventually and he'll be a LOT easier to pick up and hold whenever you want!! Hopefully he'll take off like a champ on the new formula!

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