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Preemies
mellymel12
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New here - 27 weeker with NEC
mellymel12
member
in Preemies
Hi ladies!
My little Allie Lynn was born on 7/23 at 27w2d. She weighed 2lbs 7oz and came out fighting. The first week of her life was glorious...she was off any and all breathing assistance within just a few days and I held her for the first time 6 days later. Everyone was so pleased with just how well she was progressing.
The very next day she took a turn for the worst. She was diagnosed with NEC and the infection had spread to her blood. 2 days later she was shipped to another hospital where they could perform surgery on her, if needed. The same day of the transfer she had a drain put in her abdomen to release some of the fluid that was tightening and discoloring her belly.
2 days later it was decided that she needed surgery because of days of positive blood cultures (after being on a numerous antibiotics). Thank god they took this route because 3 parts of her bowel needed to be removed. All in all they took about 40 cm out and she also lost her ileocecal valve (my main concern) BUT she is here and is still fighting. She's healing nicely and we're able to hold her again...so thankful.
Does anyone have experience with surgery required NEC? I know for the most part that everyone's issues are case by case but because of the loss of her valve, I really dont know what to expect (other than weight gain issues and pooping issues). Im also deathly afraid of them introducing formula to her again...Im producing BM but not nearly enough...I only get about 1oz TOTAL per session. I know eventually they will run out of what is frozen of mine and the thought of having her try to process formula again makes me anxious. I know that they dont know the reason for what causes this FOR SURE...but my gut tells me it had something to do with all the formula...who knows I guess.
Sorry this became so long and I would appreciate any advice or suggestions! I look forward to getting to know you all!
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Re: New here - 27 weeker with NEC
I don't have experience with NEC, but I did want to tell you that my milk didn't come in until 10 days after I had my baby. Even after that, I wasn't making much.
I took Fenugreek and Blessed Thistle and it really upped my supply. I also used a Medela Symphony pump (I rented one to keep at home and use the NICU one when I visited).
I pumped 8-10 times a day (in the beginning it was more like 10).
I just wanted to cheer you on with your milk. Don't give up. Pump Pump Pump! Drink tons of water, and check into Fenugreek and Blessed Thistle. I took 3 caps of Febugreek and 2 of Blessed Thistle three times a day for a couple weeks. It really upped my supply.
T&P to your little gal too. She sounds like a fighter!
We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
How scary! I'm glad to hear that she is doing better.
Does your NICU do donated BM? My milk didn't come in for about 4 days, so until then, they gave DD donated BM so that she didn't have to deal with the downfalls of formula (she was 2lb3oz).
BFP #3 via cancelled IUI ~ C (2lb 3oz; HELLP) 5/16/11
BFP #4 via the natural (free!) way ~ E (8lb 11oz) 9/13/12
I have no experience with NEC. The NICU suspected that my LO had it once but it was nothing.
As for BM, I ditto the donated BM question. Really push for it. Also, my LO received 26 and 28 calorie BM. It is specially screened (DNA typing of the donor and the milk) and it goes through some special process to get the calories up to 26/28. The 28 calorie BM was insanely expensive ($10,000 for a 10 day supply) but our insurance covered it (Thank God!). My LO did really well with it and then transitioned to formula with no issue.
my little girl (a 27 weeker as well) was a two time NEC survivor, nether times needed surgery. The doctors discovered it the first time when she was a week old and luckily it responded to antibiotics. The second time they caught it she was 35 weeks along and this case was worse then the first. The doctors and surgeons debated for a long time over surgery. They felt she needed it but didn't want to open her up again since she had already had heart surgery. Luckly, right before they were to move her to the operating table they noticed her stomach was starting to soften. She ended up not needing surgery.
I have had problems with my milk supply. Our NICU did donor milk so the nurses kept a supply in the freezer for the days I couldn't produce enough. It helped take the pressure off me which ultimately only helped my milk production.
Good luck.
Lily born at 27 wks: 2 lbs 4 oz.
Max born at 27 wks: 2 lbs 2 oz.
Glenn born at 31 wks: 3 lbs 9 oz.
My twin's birth story
Hi, I had a 35 wker born at 3lbs 12 ozs due to severe IUGR and Pre-E. Even though he was 35 wks, his system was as mature as ~ a 32 or 33 weeker.
He did fine on room air and spent just a few days in an isolette with the Bili Lights. The main reason he was there (31 days total) was because he was a LAZY eater, and we just had to wait for his bottle feeding 'lightbulb' to turn on.
Anyway, they originally told me to expect him to stay one week. I think they grossly underestimated how immature his system was for his gestation. He had no body fat, so he had to use SO much energy to bottle feed (as all preemies do).
About two weeks into his stay, the Neo decided to add Neosure fortifier to up the cals of my breastmilk. I think they wanted to beef him up quicker thinking that it would help him get stronger faster. Makes sense, and I didn't question it.
Within two hours of introducing the Neosure fortifier, he couldn't keep ANYTHING down. He NEVER spit up before, and he began to projective vomit all of his feeds. We expressed concerns to the nurse and Resident that night because we thought for sure the problem was that he couldn't tolerate the Neosure. They both kind of brushed it off saying it takes time to adjust. We KNEW something wasn't right but let them convince us to keep trying it over night.
I got there @ 8 am the next morning - my little guy's temp had dropped way down, his belly was swollen, and they had removed his last feed through a tube. They did blood work which indicated some sort of virus or infection. The next thing I knew, we were signing consents for spinal taps, x rays etc. They did a full sepsis work up to rule out meningitis and NEC.
We were VERY lucky, and those tests all came back negative. He spent three days back in Intensive Care on iv's while he system recovered. The Drs never would admit that there was OBVIOUSLY a correlation between the introduction of the Neosure and his condition. They also wouldn't admit that studies have shown a relationship between the introduction of formula and onset of NEC.
We later found out that we were spot on - MANY preemies have trouble digesting formula. In our case, it was a Milk Soy Protein Intolerance, so he was having an allergic reaction to the Neosure. When the body can't digest, it gets backed up . . . which is the root of NEC.
In any event, we said NO MORE fortifier, and it's the best thing we did. We had wonderful nurses and Drs, but in this case, our instincts were far better. We could have avoided much heartache if we had told them to stop the Neosure the night prior. If your gut is telling you that your LO can't digest the formula, go with it!
Ask the Drs to push her on breastmilk volume instead. BM is easily digested, so it can be done. Also, it can take a few weeks to really establish your supply, so don't get discouraged. Speak with a LC but there are things you can do to boost your supply, and it will catch up to your LO's needs.
Another thought - you may want to watch dairy and soy in your diet. The milk protein sensitivity is the #1 culprit when babies react to commerical formulas. Over time, my LO became sensitive to dairy in my diet and we eventually had to switch to a hypoallergenic formula (which is like having a monthly car payment ha).
Anyway, sorry for the LONG response. You've been through SO much, so I just want to let you know that your instincts are powerful. Neonatalogists have a very hard job and are very good at what they do - but sometimes YOU know your child best. Hang in there!
Welcome! My twins were 27 weekers too and one of them had a bowel perforation. It wasn't due to NEC but he did have surgery, an ostomy and a reversal before coming home.
I absolutely agree with PP, there are times when you know best and sometimes as many calories as possible at any cost isn't the right course of action. Good luck and I hope things settle down for the rest of your NICU stay.
Thank you so much for the responses! To answer some of the questions, the NICU at our first hospital never gave an option of donor BM...they just substituted formula when I didnt have enough milk as they upped her feedings. Sometimes I think they did it too fast...they upped it 3 cc's every other feeding...and maybe thats normal for everyone, heck I dont know. I guess Im just searching for a definite reason when I know in my head that no one can provide that for me.
I'm taking 3 fenugreek 3 times a day and I will definitely look into the blessed thistle. Can I get that at any vitamin store or whole food store? I'm also renting the hospital grade medela symphony pump and pump 8 times a day...but I think Im going to put a few extra ones in when I can.
Im definitely asking this hospital about donor milk when they start to reintroduce her to feedings. I guess Im more sad about not producing enough than I am stressed. I know that every drop counts for her so I happily do it...even if the bottle isnt even half full. I keep telling myself "if Allie can go through all this, then you can get up and pump no matter how much comes out." It just kind of bums me out that this is one of the few things I can do for her right now and my body is just being dumb.
Thank you for all the encouragement!! I will definitely stick to it and get a hold of some blessed thistle!!
Blessed Thistle is from any natural food store. Something else, do you smell like maple? If you are taking Fenugreek and don't smell like maple, you may need to take more.
Also, you could try power pumping. Basically you pump 10mins and stop for 10 mins. You do that for an hour. It simulates cluster feeding and signals your body to make more milk at that time of day. I power pumped at 9pm for several days and def. noticed an increase at the 9pm pump after that. In fact the last pump I do before bed (around 9-10pm) is usually still pretty big.
We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
Welcome! I love the photo you have of you & DH - will def check out your blog, too.
Wow...what a rollercoaster it's been for you! DS never had surgery, but I just wanted to say hello and tell you I'll be around for other questions I can help with.
Things I thought of while reading - GOOD JOB with the BM!! "only" pshh! that's great! I would line up all my little bottles before bringing them to NICU and take a photo of them. It seemed like I wasn't making more each day, but I was. It can feel discouraging - it's a lot of hard work. I didn't know it would be so hard
I was going to add something else, but it's slipped my mind........
what?! haha I had no clue!! here it is if you still want it
https://ittybittyweave.blogspot.com
Thanks for the kind words! Hope to get to know you better!
I don't know what state you're in but here in FL if you qualify for WIC you can get a hospital grade breast pump to borrow for free. All I had to do was have the hospital send a fax to the WIC office. Check with your case worker.
Rowen Alexander born 10 weeks early 1/28/07
www.4wquestions.blogspot.com