9/4/08 - ADVICE NEEDED!!!!!

Today they started Kayleigh on continuous feeds with the Neocate. Over the amount of feeds she has gotten, she has aspirated half. That means she is digesting half of her feeds too, so we have to try and stay positive. Aimee and I have been getting one of those conscious feelings in our stomach about her feeds that we will need everyone's advice on.

Out of all the feeds Kayleigh has gotten from day one, the breast milk was the only thing that she digested well and made it to the maximum feed amount (15ml every 3 hours). The only reason they took her off of it was because her blood sugar level was low. So when they took her off the breast milk, they decided to put her on straight formula. Soon after her first backup, we pressed for them to fortify the breast milk. Then, we ran in to another backing up issue and that led them to just do the Neocate.

Today, Kayleigh is aspirating more than usual and after two days of her tummy looking great, it is starting to get firm again. I am afraid we are going to run in to the same issue with it backing up. We just have a bad feeling, we don't know what to do and we certainly don't want to have her go without feeds for a couple days again. Aimee and I feel more than ever that the breast milk is best, but has anyone had the experience with maybe doing plain breast milk and use a little bit TPN (Triple Mix) to help with the blood sugar??? I know that doing a lot of TPN, it is not good for their system and can cause major issues, but if we keep running in to problems with her tummy issues on other feeds, she will be on TPN more than we want anyways. I also know that breast milk may not have a lot of calories, but it won't matter if she isn't getting the feeds anyways. The TPN has calories, but we don't want to give her something that can be harmful in the long run.

We are thinking of talking to doctors in to doing plain breast milk and just adding a little TPN at a time to keep her blood sugars up. For those with knowledge or experience, is that a good or bad idea???? Even though she just started the Neocate today and has been on continuous feeds, do you think it is too early to make a change or should we wait to see if she gets better? I have heard great things about Neocate, but Aimee and I were reading this article tonight about the risks of formulas and fortifiers:

Other than that, Kayleigh was having a good day. They dropped her from 6 to 5 liters on her air flow and she was sitting around 23% all day. She had no brady's and only a couple desats, but she was able to recover quickly on her own. Her vitals were good and she has been holding her temperature very well. Aimee held her for a couple hours and she was very peaceful. I am much happier to see that she is not as irritated lately. I really feel that the two procedures they performed on her and the massive turd she finally passed through her system was the reason for her attitude problem. I don't blame her for being so grumpy and boy did she have me worried. I have one girl in the NICU and another who wants to grow up too fast already. Lord, please give me the strength. (ha-ha)

Please look in to this with us and give us a helping hand. I want the best for Kayleigh and when we turned to you all for help at the beginning when she was growing behind with no amniotic fluid, we listened and she beat the odds. I know she can beat this hurdle, but since Kayleigh can't tell us what she needs, we need to help. I would love to hear from anyone and everyone who has some or a lot of experience with this.

Thank you all so much. You are a huge help!

God Bless,

The Freemans :)


Anonymous said...

Hi Adam and Aimee :

Parents gut instincts are the best for their child.

If you could ask the doctors to give more breast milk feedings and say one feeding of formula will that be ok. Instead of mixing the breast milk and formula give them as seperate feeds. That way Kayleigh's stomach gets some rest from digesting heavy formula. Also one feed of formula to compensate for the iron and other nutrients the breast milk may lack.

Just my thoughts.

Your well wisher.

Wishing you good luck as always.

Unknown said...

I think you should definitely question your doctors with anything you are uncomfortable about. You are Kayleigh's parents, her advocates,and she needs you to be knowledgeable in all aspects of her care. I am a pediatrics nurse...I do not know it all but here is my advice. 1. Question the doctors, nurses, whomever and let them know your concerns. Get your questions answered. If you are uncomfortable with something then you are not informed. Until you are informed, you will continue to question what's best for your little sweetie. 2. It does take a bit for a baby to adjust to a new type of feeding. Again, question your health care team. They deal with these issues all the time, it's their job. They can tell you if this is expected with the new Neocate feeds. 3. Question your health care team about switching back to straight breast milk. How long has it been since Kayleigh was receiving straight breast milk? Maybe the low blood sugar issue was more of a "severe premature baby" issue and would not be such an issue now that she is a little older, a little bigger and her body is a little more mature.

I am not an expert with preemies...just thought I would add my ideas. I have only been following you for a few weeks now and continue to keep you and your family in my thoughts and prayers.

Timbra said...

you don't know me from anyone, and I don't have extensive knowledge on premies, but i do have extensive knowledge of breastmilk and i would say, do ALL THAT YOU CAN to get breastmilk into that baby girl. It's the easiest to digest and is full of calories and all sorts of things that formula is completely deficient in that your baby needs most right now for brain development and body development!!! our prayers are with you, don't let the dr.s talk you into formula, it's in NO WAY better, but actually completely lacking for what your baby girl needs right now. it seems like a great hospital with their focus on kangaroo care, etc, help educate them in this too. good luck!

Anonymous said...

I don't have any experience with this but I just wanted to say...with my kids I think breast is the best. I have one child I breast fed and one that is on formula and it seems my breast baby had the easier time with digestion. Kayleigh tolerated the breast the best before. I agree with you as far as using Aimee's breast milk and the TPN. I think its at least worth the try. I'm glad to hear that Kayleigh is calmed down a little and more comfortable. I'm praying for you little munchkin. With Love, Nikki Conway

Timbra said...

ps. . . . as you start this journey of parenthood, the best advice I can give is always go with your heart. . . you KNOW what's best for your baby girl right now, go with that and push for it. (wii3mcfamily.blogspot.com)

Anonymous said...

My opinion is that you should bring in a lactation consultant from your hospital. They will be your advocate and will have much experience. They will also be able to communicate that experience to your doctor.
Good luck. Don't wait-call them asap.
Lisa in Chgo(Fellow Realtor)

Living With CES After Failed Tarlov Surgery said...

I cant say what is best for her as every preemie is different. But I can tell you what worked for Ava. When she had problems moving food thru her system, one thing that worked great was they gave her reglan. It is a med that stimulates the digestive track and helps move things along. The feedings she was on was breastmilk that was fortified with 24 cal supplement. maybe you can ask about using the breast milk fortified and ask about adding the reglan to help move things thru. It truly made things so much easier for ava on this regiman.

I hope this helps and I think the reglan would make a big difference as it seems that most of her problems seem to come from things not moving properly

Take care,
My prayers are with her and her belly :)


Anonymous said...

Follow your parental instincts. Most important, Kayleigh has to tolerate her feeds and she has done best with breastmilk. Can they give her another chance?

I am the mother of a 24 weeker who had trouble gaining, and one thing that worked wonders in a week's time was "hindmilk" feeds. It's where you pump and only give the fattiest part of the milk. We were amazed with the results of that.

Best of luck to you and your beautiful miracle.

KZ said...

Hi, I don't know you, and I am not even sure where I ran across your blog, but I have been praying for your family. I was just reading in the newest La Leche League magazine, there is an article about breastfeeding a premature baby. They actually also have a book out called Breastfeeding your premature baby. If you would like I can copy the article for you, email me at kzengineer @ gmail . com and I can do that for you. Best of luck to you all, and you will be in my prayers.

Anonymous said...

Have you seen this website


(Difficult story - happy ending)

If I remember rightly they had a lot of the problems you're having now - I think they used fortified breast milk.

They no longer update the site but maybe you can get in touch with them via an email or something.

Anonymous said...

Parents gut instinct are always the best!!!! Question any of them if you feel the need!

For my preemie they would give him breast milk with a fortifier of 23 or 24 calories. Geesh 2 years ago and I can't rmember! Breast milk is ALWAYS the best milk in digesting and vitimins! They just mixed the fortifier in my breast milk to give my baby more calories!

One thing I can say is when my baby was a feeder/grower, they would feed him every 3 hours by bottle. He would take about an hour just to eat and his feedings were gettin harder and longer. Well I felt that maybe he was still full and thats why he was having such a hard time getting it down. I asked several nurses but only 1 who listened to me and asked the question to the dr. "If we could move his feeds to every 3 1/2 hours?" The doctor looked at me like I was crazy! Said new born babys eat every 2-3 hours. I stop her dead on her tracks and said "NO your wrong!! My older son (Who was full term) came out of the hospital eating every 5 hours at 3 oz!" She looked at me and said "I know this isn't going to work so if you want to move his feeds we can try. He will have to eat more ml. If it doesn't work we will gavage him again!" Guess what it work! HA! and 3 days later he was out of the hospital!! :)
So please if you have an questions, question who ever! Even if you need to question everyone! ;) Good luck!! God Bless!!

Mommy to 2 boys
One who was a 31 weeker

Anonymous said...

Go with your gut instinct!! It is usually right. Why would God intend for babies to be fed breastmilk if it wasn't enough for them?? Talk to her doctors and tell them how you feel. Best of luck and God Bless.

Kimberly (Anthony's Mom) said...

Hi guys,

Just wanted to say Anthony had bad gas problems with my breast milk after being on it for over 2 months. I have no idea why he stopped being able to tolerate it. They tried different formulas with him and finally it was Similac Alimentum (expensive stuff) that REALLY helped him! This stuff was a godsend! Its really easy on their tummies. I've heard if Neocate doesn't work, Alimentum is the next step. If you do end up going that way I have some extra cans of the stuff that is yours if you want. Anthony was on the alimentum until he was a year old and what I did was after he was home a couple months and his tummy issues settled down I would mix in a tiny amount of breast milk and he did fine with it. So he got breast milk for a year. I couldn't give him much (I hardly had any left) but he got some.

hope this helps.


Anonymous said...

I am a NICU nurse who has been following your story with interest. I have never heard of breast milk leading to low blood sugar, it is perfect for babies - perhaps there was another underlying issue at that time that contributed to the blood sugar issues? I would definitely recommend attempting breast milk feeds again but at this point keep them continous as you are currently doing with the Neocate, that should keep her blood sugar from dropping and spiking. Another suggestion: In my NICU we use donated breast milk for babies whose mothers choose not to use their own. There are milk banks around the country that collect and pasteurize this milk and redistribute it. I know that your wife uses her own milk, but you can get pure breast milk from these banks that has been concentrated to 24 cal without any artificial fortifiers, which might also help keep up the blood sugar and speed up her growth. Good luck!

Anonymous said...

One of my 24 week preemie twins had "medical nec" treated with TPN not surgery. She has acid reflux and was throwing up her Enfacare w/breastmilk, Nutramagin and Neocate. She was throwing up so much it was awful. I finally started her on breastmilk only (no formula mixed with it) and started her on Reglan and it has helped alot. I know trying to get the calories in is also important. I tried taking her off the Reglan and she started throwing up again. Now she is on one dose of Reglan a day, still throwing up although not as bad as in the past. I may have to increase to two doses a day, although I am hoping not to as her Dr. doesn't like to use Reglan. Her Dr. did say that it does work well with some babies. If side effects develop, they are reversible. I would definitely get Kayleigh on the breastmilk. You have to do what is going to help her. My baby never took to the bottle, so she came home on a g-tube. Get Kayleigh comfortable so she looks forward to her bottles and doesn't miss out on learning how to drink from it!!!!!! My baby is a year old (really 9 months if you go by her due date.) Her brother doesn't have any digestive problems, although, he did have the ROP surgery.

Anonymous said...

My daughter was a born at 30 weeks. She had severe IUGR. She only weighed 1lb 14oz. She was the size of a 26 week baby. She had a heck of a time trying to "pack on the pounds". We found for her the only thing to work was the breast milk. She had issues everytime they tried the formula. Finally her body got to the point where her blood sugars were normal and they just gave her the breast milk. It takes a while for the premmie to get to the point where their bodies are ready for that job. She is still supposed to be in mommy and have her taking care of that for her.

My peditrician always says you are the best advocate for your child. Don't let the health care system do something you are unsure of.

Just so you know my little girl come home only weighing 3lbs 8oz. She showed the drs that she could grow a little a day. Some days it was as much as a couple of grams but she continued to climb and that was all they asked for. Maybe Kayleigh is going to be a slow grower. Lauren is now 4-1/2 years old she still is small. We were so excited last weekend she finally broke the 30lb mark!

Keep your heads up and continue to ask God for the advice.

You are in our prayers in Delta, Ohio.

GiGi said...

I am not an expert but we have 3 preemies and with all of them. They digested the Bm the best (not to mention all the extra benefits BM has). When they were still very tiny they added the fortifier for the extra calories. We started out with plain BM for a while then We added the fortifier at 1/4 strength to see if it was compatible and when we found the right fortifier we increased it slowly to get up to full strength so their tiny bodies could get use to it. All so with Eli he always would had some left in his tummy if he was on his side or back so the nurses would put him on his tummy with a rolled up baby blanket under his belly and he would digest his feeds every time. He had that same reflex issue for the first year of his life. After every feed we had to make tummy time by laying him on our chest as we sat in the recliner for at least 20 minutes or you could guarantee that the feed would be puked up. The twins on the other hand even though they were a lot smaller never had the stomach issues.
Also what foods I ate made a huge difference in the amount of gas the babies had. Just like the foods you eat effect you differently.
Remember that God made Kayleigh's BM especially for her to digest. I would wean her off the triple mix slowly so her body can adjust to the sugar level and there is no shock to her system.
Please GOD help the doctors find the right answer to Kayligh's digestive tract and help her to grow and do your will. AMEN

Anonymous said...

I never had the issue with Parker's feeds like you have had with Kayleigh, but let me tell you this...

YOU ARE HER PARENTS...you have every right to say, hey, we don't like this and we know and think this will work. You know your child better than anyone, even the doctors.

We had to stand up to the doctors about Parker and his acid reflux. One day we weren't there for rounds and they took him off the zantac and tried thickened feeds...we were really peeved because the thickened feeds weren't working and he was really struggling. Finally after a week, we were like, we can't deal with this...and we talked to the doctors and stood up for what we believed was right for him...we also talked them into the wedge...

a week and a half later he was home.

You need to stand up for Kayleigh and talk to the doctors and tell them that while, you realize they are doing what they think is best....you know your daughter and you really feel that this is the best option for her.

Don't be afraid to be Kayleigh's spokesperson. She obviously can't tell anyone what she needs and in the long run, you won't always have the docs around...so be there and stand up for what you feel is right.

Let me know how it all turns out!

Anonymous said...

I don't know exactly how the calories would be different, but you could consider pumping the foremilk and the hindmilk separately? The foremilk is designed to quench the babies thirst and is lower in calories while the hindmilk is higher in fat, protein, and calories. The foremilk is what the baby/pump gets when your milk first lets down and then the hindmilk is what comes after that.

I know you are trying to loose the baby weight now too, but you may find that eating a diet higher in fat (especially good fats from olive oil, nuts, fish, avocados) might mean a higher fat content in your milk.

The nicu will want to measure all of this and it is impossible. They want babies on a schedule they can control and measure. Full term babies, however, are always different! Some eat every 4-5 hours, while others eat almost constantly. My 35 wek premie wanted a small amount of breast milk (1-2 oz) every 1-2 hours. I wonder if you can try varrying the schedule to see if there is something that suits Kayleigh more?

Anonymous said...

One other thing, the worry about using TPN has to do with the high aluminum content. Doctors know that too much aluminum can be toxic to the babies' brain. You might look up aluminum on the www.askdrsears.com website for more information about this.

Unknown said...

I hate giving advice that comes in terms of medication, but... Reflux is a common issue with preemies.. You can suggest some Reglan.. It works in the sense that it tightens the sphincter at the top of the stomach and opens the sphincter at the bottom of the stomach and also helps to speed up the whole process and allow them to digest better..

Some NICU's are steering away from Reglan, but both my girls were on it and both did great.. When they came off they had some of the same issues, so we always ended up back on it!

Anonymous said...

I don't know that I'll have much to offer up as all of my kids were full-term, but I did want to mention that I believe there are two forms of NeoCate - one with DHA added and one without. I've read of babies having difficulties with the DHA version but being fine on the regular one.... something about the additives they use. All formulas tend to be a bit harder to move through the system - regardless of which one it is.

That said, if you and Aimee agree that she did best on the breastmilk, I would definitely talk to Kayleigh's team and request that she be put back on it. As someone mentioned, Aimee can adjust her diet if Kayleigh seems to be fussy. Dairy and soy can both cause discomfort for the little ones. I nursed my first for 9 months and had all but about 8 foods out of my diet. Her tummy was very sensitive to everything I ate. My third ended up on EleCare/NeoCate as she couldn't tolerate anything else - even with my diet cut down to the bare bones. There's a ton of information online about the Total Elimination Diet - it's hard to follow, but you have all endured far great difficulties already! It will seem like a piece of cake!

Good luck - I will continue to pray for your family!
God bless,


T said...

In my NICU experience, a baby Kaylee's size & age may be experiencing GI & endocrine issues on top of her cardiac & respiratory needs. You mentioned that they will investigate if her IUGR & weight gain problems are metabolic or endocrine, but I know those tests take blood samples she probably can't spare all at once. Do you have a GI or Endocrine specialist consulting with the Neonatologist? What does the Nutritionist think about fortified breast milk vs. Neocate?

All of her body systems need a delicate balance. Is her feeding tube in her stomach or her duodenum? How did her last abd film look? Does she respond to rectal stim or glycerin to move stool along or does that send her cardiovascular system into a tailspin? Had she received steroids or other meds that alter blood sugar back when that was a problem? Testing blood sugar takes much less blood than other panels but it doesn't give you a complete picture- can they time her labs to help you get more info?

The aspirates (leftover in her tummy from each feed, not the kind that go into her lungs) are serious since it IS her way of telling you she can't tolerate the feeding, either due to the volume, rate or type of food. The TPN requires vascular access so there is an infection risk & it takes a toll on her liver, it has to be carefully administered & blood tests must be followed. What about using a simpler IV with sugar (like D5) to balance her blood sugars if they dip on breastmilk feeds while you watch her digestion? Switching feeding plans is common & results may not show up for days. Her gains will be evident over weeks- look how far she has come already. I know it's hard to be patient. You're doing a great job.

The things you CAN do while getting answers to these questions include the kangaroo care (proven to help weight gain), pumping milk for her (she will get it eventually) & the PT exercises & positioning to help her muscles & digestion (yea for POOP!)

Your situation is so unique there is no example that will fit her needs perfectly. She is her own special person & has been since day one! Good luck with learning more about her.

Anonymous said...

I second the NICU nurse's opinion. She/He is correct in that donated milk is available with higher caloric values. It sounds like you're seeing a pattern with the formula. Trust your instincts. Please email me if I can help with additional info on milk banks and/or on donor milk.

Unknown said...

I know Carly had issues about low blood sugars in the begining down in the very low 20's at times. They put her on formula to help increase her sugars which worked perfectly. Although she never had any tummy troubles and maybe gave back at the most 2-3 mls but that was only from time to time and was never enough to skip the next feed. So they put her back on BM and her sugars were perfect. It's like she grew out of it (the sugar problem) but then there was a new problem....she stopped growing. I didn't have enough calories in my BM to help her grow. But even before she started formula she had a hard time growing. To me it seems Kayleigh had no problem growing off Ammie's BM it was just her sugars. I don't know but if it were me I would probably suggest going back to strictly BM and see what the docs and NNPs say. It couldn't hurt to mention and plus....YOU are to parents, YOU have a say in how she's cared for, YOU have to be her advocate!!!!!

In Christ,

Anonymous said...

One other thing to consider. We did not deal with reflux with our premie, but our older son had reflux. We went down the typical medical path but then heard that some chiropractors and massage therapists can sometimes help treat reflux without meds. We took our newborn to a chiropractor and his reflux was better in about 2 weeks. No more meds, no wedge, etc. If you have any more questions about this, you are welcome to email me at globalsara@hotmail.com.