Possible advice needed. 7 week old still in NICU

[skylarsmama]

My little guy was born 5-29-11 at 28 weeks gestation. He's still in the NICU, in an open crib and off oxygen since July 11th. Last night he weighed 4lbs. 15.8oz.

He had been getting 26 calorie HMF for almost a month and just over the weekend, he was moved back down to 24 calorie fortifier.

I've been pumping non stop and he's been getting nothing but fortified breastmilk. I'm starting to get frustrated with some things and I thought maybe if I put it all out to people who have been through similar, I might be able to get some different/new advice.

He started trying to bottle feed July 7th. I wanted him to start with a bottle since he was gagging and having events while feeding and with a bottle, I could regulate how much he was getting. I've had preemies before and am comfortable with being able to switch him to breast once he's capable of eating without issues.

So, anyways...for the first few days, he didn't do much. Then he started to take 10,15, 20ml once or twice a day. He took 22ml just last week with almost no problems once he figured it out. He just doesn't want any part of eating by mouth. He is very, very gassy and is always pooping. It's not yellow curd type breastmilk poo but more green-ish/grey curd which I assume is from the fortifier being added. He now has a bloody rash that is getting slathered with different creams and cleaned with mineral oil and not getting any better. He had a rash when they first started adding the 26 cal fortifier and it cleared up but it's now back.

Every time I go in to try and feed him, he's grunting and bearing down with gas or to poop.

I finally talked to one of the doctors today and asked if we could try giving him straight breastmilk for a day or two to see if it helps with his gas and constant pooping. She basically said that if it was a lactose intolerance that I wouldn't be able to breastfeed him so taking away the fortifier wouldn't make any difference. I asked for him to be bumped down to the 22 cal and again, she said something about it not making a difference.

The nurses today said that he should be showing some interest in eating by now (he was 35 weeks gestation this past Sunday) and we talked about me taking some stuff out of my diet. He does wake up and appear to be rooting for some feedings but it takes him a half hour to take 10ml. He's getting his feeds (54ml) mostly through the tube, over an hour. Today they're shortening them to 45 minutes. Yesterday he was given a 3rd blood transfusion in hopes that it would help slow his heart and breathing rates and his hematocrit was on the low side (28.something).

I'm just frustrated with it all. He is in the "annex" which is a separate area from the regular nicu. He's been there since July 1st and it's supposed to be for babies who are just about ready to go home. We see babies coming and going almost daily and the only thing keeping our guy there is that he won't eat.

So, am I missing something? Am I too hopeful and not being patient enough?

[Adaline'sMama]

Bump.

I have no advice, but I saw this on the unanswered forum and I didnt want to read and not post. It must be so hard to go through this. Im sure you are tired, and you just want to take your baby and go home. :hugs to you. Stay strong, and Ill be thinking about you and your LO.

[maryeliz]

Do the doctors think he does have a lactose intolerance?  And are they testing for it?  Can you sit in on rounds or arrange a meeting with the doctor?  I assume they have a list of possible things that they think could be causing his stomach problems, so I would want to know 1) what they think could be wrong 2) how they are going to go about ruling out various things 3) what there timeframe is.  As a NICU mom, I really liked my baby's doctors and trusted them, but I think as a NICU parent you also have the right to get full explanations, and if you need to refuse certain interventions.  If  the stuff they are trying isn't working and you really think the HMF is the problem you can refuse it-and in the scheme of things it really wouldn't hurt him to go a few days with HMF.  My baby didn't have a problem with HMF, but I have heard plenty of NICU parents say that it didn't agree with their babies.

I do think 35w is still early for the feeding stuff.  My LO took a long time time to figure out how to eat and she was also in the step down unit for a long time, so I know how much it sucks to see babies come and go while you are still waiting.  When my LO moved to step down, she was the most stable baby there-and she stayed for six more weeks.  I'm sorry you're going through this, but you will get home.

Also, I don't know if you have looked at the baby center preemie board.  I know a lot of people here hate BC, and there are definitely some people there whose advice I would not take, but it is a very active board so you might be more responses from people with similar experiences.

[CGsMom]

I agree with everything Maryeliz said.  I would also add that you should share your concerns with the charge nurse and/or the director of nursing, if you haven't already.  I had to do that one time while my DD was in the NICU because I felt like the doctors were not listening to me (reflux issue).  I spoke to the charge nurse on duty and she suggested I take my concern to her boss, the DN.  Our issue was resolved quickly and the DN said something to me that I will never forget.  She said: "You are the only advocate for your child.  She is your daughter and you have a right to be heard and taken seriously."

Also, it never hurts to remember the old adage about a squeaky wheel getting the grease.  I am sure the doctors caring for your LO are great doctors, but if your NICU is anything like the one we were in, they have a lot of babies to care for and see every day.

I hope this resolves quickly for you and you get him home soon.

[OGirlieMama]

My girls (29 weekers) were extremely gassy on HMF+BM, and we were able to talk them into trying them without it because they were gaining well. I don't remember what week GA this was at, though. Probably in the mid 30s. They didn't have the kind of poops you're describing, though. It all looked like regular breastmilk poop, it just came out at high speed and was audible from across the room. I think you are within your rights and the realm of sensibility to request a trial without the HMF before you start trying an elimination diet. I hope it works out that the HMF is the only problem!

[mama2soren]

My 31 weeker had nasty green-black (stinky!!) poos and terrible gas on the HMF, too.  He had a raw, bloody diaper rash that was very difficult to heal.  For us, it was the HMF and only the HMF that caused this.  When he switched to straight BM (a while after being discharged), those issues went away.  The nurses all told me that the HMF can be rough on little systems.  I'm really surprised that the doc is going right for a lactose intolerance diagnosis when it seems to be a pretty common experience for babies to struggle with HMF.

The trick that helped with his rash was to have what we called "open butt" time as often as possible.  One of his sweet nurses would get him frog-legged on his tummy in his open crib all covered with blankets except for his tiny bum peeking out.  He was diaper free, though an absorbent pad was underneath him (and changed every time he went, of course).  She had the O2 mask pointed right at his bum blowing air over it.  It worked miracles for DS.   

At 35 weeks our son was still mostly NG fed.  Maybe 2-3 bottle feeds a day?  Maybe fewer?  I don't remember.  But, he had a 34 month nursing career, so I wouldn't worry too much right now.  35 weeks is still so young.  Some babies are still in utero 7 weeks longer than that!

Hang in there, mama.  I know how difficult it can be.

[LunaLady]

My baby was born at 33w2d and is now 34w2d old and is getting the HMF in my breastmilk for his feedings. He's had a terrible time with spitting up - both when he was on formula before my milk came in and now that he's getting all breastmilk - with HMF added.

How can I go about asking to have the HMF left out? Would it be to his detriment to just be getting breastmilk only? I want him to grow and be healthy and thrive - but I'm also a super crunchie mama and am weary of everything processed and manufactured and whatnot (I don't wear make-up or use household chemicals or whatnot and we eat all local, organic and grassfed/free range etc..) and I just don't want him getting a bunch of nasty stuff in his diet already. 

So, for those of you who refused the HMF, how did you bring that up and present yourself in a way that didn't make you look crazy?

[Ratchet]

Did he go through a phase of breastmilk only without HMF? 

Babies who are not getting fortified have a good chance of building up a pretty good deficit of iron, vit d, calcium, phosphorus (thus high rates of thin bones) and don't catch up well with their growth-- although at 34 weeks that might not be as big of an issu).  Yes, breastmilk is best.  But this is not a healthy term newborn we are talking about.  In your case, it really is "placenta is best" and breastmilk is a weaker alternative.  Yikes, I feel crazy saying that but it's true-- on breastmilk alone preterm babies may not meet their potential. 

So I would look into creating your own fortified milk.  Enlist a good lactation consultant.  You may be able to get your milk analyzed for calories, protein, and fat.  Maybe you could feed hindmilk only (using the foremilk for another purpose) along with supplements of iron, calcium, vit D.   

Also, the idea of "lets just test all the variables"  seems valid.  As PP said- 1 or 2 days off HMF shouldn't be a big deal.

It is also important to make sure that every cause of the spit ups are being looked into.  Is it how he is being fed?  Too much, too fast, too chaotic, bad position, etc?  Be the momma bear here, too.  Relux is COMMON in these guys.  Is he gaining well despite spitting up?  In which case is it bothing you more than him...

Edited by Ratchet - 9/29/11 at 10:47pm

[twinpossible]

I should have read all the responses first but I have twins so I am taking a short cut! My girls were NICU residents for 11 weeks. (they were 9 weeks early). They had a very similar story. In the end I DEMANDED (all in caps for a reason!) to be taught gavage feeding and I took them home. Shortly after we got home I finally figured out that they have a severe allergy to formula. Once I switched them to breastmilk only all the issues went away and they began to gain weight. I know how hard it is to watch all the other babies to go home. Have you ever called a meeting with ALL your baby's doctors and nurses to get a "take home" plan? Once I did that my girls were home in 5 days. Just so you know, the NICU does a really good job of making you feel like you know nothing and you need them, once you get home you will have a "oh shit moment" when you realize that you are on your own. Try to trust your instincts now while baby is still there, you do know what is best!

[~bookcase~]

Originally Posted by LunaLady 

So, for those of you who refused the HMF, how did you bring that up and present yourself in a way that didn't make you look crazy?

if you question anything you look crazy, so don't worry about it

a nurse on our unit found some research to support our request to stop HMF; babies over 32 weeks or (sorry, not sure what weight) not needing it.

also sorry i don't know the paper/ unit she found the research at, but well worth saying you've heard there is research and can they please look for it....

ours were 32 weekers and had 2/3 days worth of HMF perhaps (we don't know exactly, we found out it was being given by 'accident') and have had the longest CMP intolerance of any of the children

[~bookcase~]

just came across this WHO doc:

http://whqlibdoc.who.int/publications/2006/9789241595094_eng.pdf

excerpt:

There is strong and consistent
evidence that feeding mother’s own milk to pre-term infants of any gestation is
associated with a lower incidence of infections and necrotising enterocolitis, and
improved neurodevelopmental outcome as compared with formula feeding. Feeding
unsupplemented mother’s own milk to pre-term infants <1500 g resulted in
slower weight and length gains, but the implications of this slower growth are
unclear and there is not enough evidence to assess if it increased the risk of malnutrition.
Long-term beneficial effects of breastfeeding on blood pressure, serum lipid
profile or pro-insulin levels have also been reported for pre-term infants. There
are limited data on most outcomes in term LBW infants; the available data suggest
that improved infection and neurodevelopmental outcomes associated with feeding
mother’s milk in pre-term infants are also seen in this group.

.......

Optimal duration of exclusive breastfeeding
Overall there is no evidence to recommend a different duration of exclusive breastfeeding
for pre-term or term LBW infants than for infants who are not low birth
weight. Limited available data from industrialized countries suggest that early supplementation
of breastfeeding (at about 3 months of age) with a high calorie diet in
pre-term infants may marginally increase linear growth and haemoglobin levels. No
data are available for other key outcomes. Among term LBW infants, the available
evidence from two trials suggests that exclusive breastfeeding for 6 months, compared
with 4 months, had no deleterious impact on neurodevelopment, growth, or
haemoglobin levels, if it was accompanied by iron supplementation.

Human milk supplementation
Vitamin D. There is some evidence of reduced linear growth and increased risk
of rickets in babies with a birth weight <1500 g fed unsupplemented human milk.
There seems to be no consistent benefit of increasing the intake of vitamin D from
the usually recommended 400 IU per day. There are no clinical trial data on the
effect of vitamin D on key clinical outcomes in infants with a birth weight >1500 g.
Phosphorus and calcium. There is some evidence that phosphorus and calcium supplementation
reduces the risk of metabolic bone disease in pre-term infants and leads
to short-term increases in bone mineralization in infants with a birth weight of <1500
g. There are no data on the effect of phosphorus and calcium supplementation on key
clinical outcomes in infants with a birth weight >1500 g.
Iron. Iron supplementation, started at 6–8 weeks of age in LBW infants, is effective
in preventing anaemia during infancy. There is some evidence that anaemia is common
in LBW infants fed unsupplemented human milk even at 8 weeks of age. There
is also some evidence to suggest that iron supplementation, started at 2 weeks of
age, may prevent this early anaemia in infants with birth weights <1500 g. However,
there are insufficient data on the safety of iron supplementation during the first two
months of life. There are no data on the effects of iron supplementation on mortality,
common childhood illnesses or neurodevelopment in LBW infants.
Vitamin A. No conclusions can be made about the benefits of early vitamin A supplementation
of LBW infants. Findings from a single large trial suggest that vitamin
A (50,000 IU in one or two divided doses) during the first days of life may have a
survival advantage, particularly in infants with birth weights <2000 g.

won't link any more as you can read the doc and print relevant pieces yourself.