Problems breastfeeding 24 weeker

[@llli*el.ro]

Due to an infection my up to then healthy triplets were born at a gestational age of 24+3 weeks. My daughter and younger son died during NICU time and only the "eldest" (but with 690g smallest) survived with almost every complication that can occur in premature birth. I won't write about my grief and don't ask for condolences, it all hurts too much and so I am concentrating on what there is to do right now.

The hospital was not supporting breastfeeding, so I could try to latch him on for the first time around 36 weeks gestational age all on my own. He did not drink anything for weeks but then seemed to slowly get the hang of it. After the last operation that relieved him from a lot of pain, he was finally discharged from hospital at 48+1 and became way more peaceful but at the same time ceased drinking almost completely. Today he is 49+4 weeks of gestational age.

On a finger he can suck strongly but he never sucked well on the breast and at the moment seems to not suck at all. Nurses and physiotherapists are completely happy with his ability to suck when they put a finger to his palate. The LC was happy with how latching and breastfeeding looked. We tried breast shield, SNS and bottle but it all did not work/help. He is still fed through a gavage tube, which is a sad, wrong thing and some kind of vicious circle to us.

Sometimes, he seems to dislike drinking although he made clear signs before (searching, stretching out tongue, smacking). For example when I am trying to feed him on one breast and pump on the other one or I feel the let down of milk (so I can be sure some milk is flowing), he gets off the breast after maybe one minute and seems like he just wants to be pacified and not drink anything. (I don't have problems with milk supply and since 40+0 he is fed exclusively with breastmilk and gaining well - 5,5kg [12lbs] now.)

Another problem is that he does not cry and rarely wakes up when he is hungry and usually sleeps during the tube feeding.

Unfortunately there was no one in the hospital who had expertise or experience with breastfeeding extremely premature children, so I am happy to have found this forum at last - it seems that here are some breastfeeding parents to extremely prematurely born children - so I hope for to get some ideas on what else we might try or improve and for experience from other parents.

Two specific questions are:
How can I make him suck well on the breast like he does on a finger?
How can we help him "realize and verbalize" his appetite/hunger?

But if you have any ideas that might help us, please tell us.

(I apologize for my poor English, obviously I am no native speaker.)

[@llli*nolies.mama]

Hi mama. Glad you found LLL.

Do you have access to a IBCLC certified lactation consultant? It sounds like you need some really good one on one in person help here. I worked with an IBCLC a lot to get things right with my son.

Did you/are you doing kangaroo care? I think this was helpful in establishing a BF relationship with my son, although it did still take him quite some time. With all your LO has been through he might just need a little more time.

What do the dr's say about the "missing hunger cues?"

[@llli*el.ro]

Hi Nolies Mama
I had contact to a LC at the hospital but she could not help with specific questions and we are now looking for someone we can meet at home, but have not yet found anyone.

The hospital allowed kangaroo care until around 30 weeks gestational age and now at home I try to have a lot of skin-to-skin contact with him and carry him around a lot.

Although it's getting harder and harder to bear the situation, the more he grows and the more he becomes aware of the gavage tube, I keep on trying, I really believe in breastfeeding especially since he is so ill. During the long time in NICU expressing milk was one of the very few things I could do for him.

I am not yet sure whether he does not feel hunger, whether he feels it but does not express it, whether he expresses it but we just don't realize it or what else. For example he hardly ever cries; his preferred way of expressing dismay since long before he could use his voice is by getting hypertonic - you could hardly realize this when you are sleeping yourself. Sometimes I know that he must be extremely hungry but he keeps on sleeping or looking around, sometimes he seems to get fitful in his sleep when his feeding time arrives but does not wake up, on the other hand he is searching etc. almost all of his awake time and I try to breastfeed him as often as possible.

I have not yet discussed this with a doctor in depth, but they acknowledge that he is getting anticonvulsants that make him sleepy. And I feel it might partly have something to do with the NICU habit to preferably feed the children while they were sleeping, but that is the past and I cannot change it.

[@llli*jenniebean5]

Hi el.ro,

I am really sorry for all you have been through. I know you said you aren't looking for condolences or to write about your grief, but I wanted you to know I am sorry you've experienced such tragedy and if/when you ever want to talk about any of it feel free to private message me.

My son was born at 29.6 wks, so my situation is very different from yours, but he did have swallowing issues, weak suck, and didn't exhibit hunger cues for quite some time. He left the NICU using a special feeder (Habermann Feeder), so we weren't dealing with the gavage feeding once he left the hospital. I worked with lactation consultants and a feeding therapist for his feeding issues. My son was also seen by early intervention and his coordinator was really helpful in bringing in other therapists when there were questions or concerns.

Is your son involved with an early intervention program? Your son's Dr may be able refer you to specialists who can answer some of the questions you have. An IBC lactation consultant and a feeding therapist might be a good start. What is the plan with the tube feedings? Is he being tube fed because he doesn't use bottles well? Does he use a pacifier? Maybe stick with using a nipple shield for a bit while he gets better at latching. Oral aversions and feeding issues are so common with micropreemies, it's great that you're working on breastfeeding him so hopefully he can avoid those issues.

[@llli*el.ro]

Hi jenniebean5,
what did the consultants and therapists tell you about the hunger cues? Did they just come with time (at what age) or could you do anything about it? The same about the suck: Did you do anything special or did it just happen?

We just started doing Castillo-Morales-practice with the physiotherapist.

I am living in Germany so we don't exactly have "early intervention" but something similar, still everything medical is coordinated by the pediatrist. Before our discharge from hospital I initiated a first meeting and they are visiting next week - I don't know whether they care about feeding issues as well, but it would be sensible; I will ask them.

Unfortunately, there was no plan about the tube feeding: when we left the hospital he drank rather well, although with weak suck, but up to 1/4 of his daily diet (meaning quiet often 50ml per meal, if he drank) and everyone thought it was a question of days up to weeks until he would drink everything on his own. - Today we went to a doctor's and they said that we should try for four more weeks, if he does not get rid of the tube meanwhile, they will send us to a specialized hospital for traumatized non-feeding children. She thinks my son might not eat enough because of an aversion acquired at NICU.

He does not drink from a bottle and they did not offer alternative feeding methods at the hospital. At NICU when he was finally allowed to learn drinking they insisted that he should be able to drink a whole meal from the bottle first since breastfeeding was too dangerous to them. We did not want him fed with the bottle because we felt that, he should learn coordinating breathing and swallowing at his own pace on the breast not forced by choking from my breastmilk. And we read about scientific studies that said premature children are more likely to be breastfed in the end if they are not accustomed to bottles in between. When he choked heavily at the bottle in the beginning and they had to "reanimate" him several times, they finally respected our wish and we could try to bring him to the breast without the bottle. And since our little one made slow but steady progress we were hopeful to come home breastfeeding him or at least to come home with the tube but very quickly getting rid of it. At home we tried bottlefeeding once, he did not choke (being months older and having learnt swallowing [without ever choking nearly as severe as from the bottle]) but like nowadays on the breast he did not suck, so he could not get enough milk from the bottle either.

He learnt drinking without nipple shield so we only used a nipple shield once - he did better without it.

When he was in a lot of pain at the hospital, we needed to use pacifiers, I could not be there all day, but now that he is better and I am frequently offering the breast he does not even want the pacifier, so we don't offer it anymore.

@Nolies Mama: How long did it take your LO to finally drink "serious amounts" from the breast?

And toady the situation has already quite improved: I feel somehwat stupid, but I think a whole lot of the worsening in his drinking was caused by me: In the hospital I had help with the time-consuming tube feeding, no chores and thus more time for breastfeeding, now that I have to do everything, I just invested less time in breastfeeding. I recognized that only yesterday and now we are almost back on that he drinks very irregularly but up to 1/4 of his diet. I'm rather happy but of course sad that we lost two weeks of practicing.

[@llli*krystine]

my daughter was not premature but behaved like one, we were told by the IBCLC. She was very disorganized, didn't know what to do with a nipple in her mouth and very sleepy.

A few things that helped , but primarily it took a LOT of work and very close guidance from an IBCLC.

co-sleeping helped us...she would nurse better during the night, I don't know if it was my supply, the quietness, or what, but it did help us.

I wore her almost constantly (when I wasn't pumping) in a Moby-style wrap (you can look them up, but whatever sling you have is probably fine, just helps them figure out the world a bit better.

Hang in there! It does take work so you may need to adjust your expectations on what gets done around the house. My goal was one thing a day in addition to the pumping, nursing and bottle feeding my milk...doing the dishes, hanging a load of laundry on the line...nothing big. It was too much work. And it's hard work having a newborn regardless.

[@llli*nolies.mama]

@Nolies Mama: How long did it take your LO to finally drink "serious amounts" from the breast?

And toady the situation has already quite improved: I feel somehwat stupid, but I think a whole lot of the worsening in his drinking was caused by me: In the hospital I had help with the time-consuming tube feeding, no chores and thus more time for breastfeeding, now that I have to do everything, I just invested less time in breastfeeding. I recognized that only yesterday and now we are almost back on that he drinks very irregularly but up to 1/4 of his diet. I'm rather happy but of course sad that we lost two weeks of practicing.

Hi mama. It took us about 2 and a half months to be able to actually feed from the breast and know that he was getting a good amount of milk. Probably a little longer than that before he was really doing well at it.

It is hard to juggle everything all at once. Is there someone that can help you with the chores and things while you two still work on feeding?

[@llli*jenniebean5]

I was told the hunger cues should come, and they did. I think he was around 6 months old actual.

How often is he at the breast now? Is he latching?

I totally understand your concern with the bottles and using them inhibiting breastfeeding. I was beside myself when I was told my son would have to be on full feeds by bottles for several days before he could come home. I really felt that he wouldn't transition to breastfeeding if he didn't do it for 2 months and got bottles, too. But, he did transition, with time and lots of effort. He was never able to use a normal bottle, he would choke and desat. But with the Habermann, where I can control the flow of the milk, it was much easier for him.

I just want to encourage you to give him many opportunities to practice sucking, on a pacifier, bottle, or breast. It's so important with preemies that have been tube-fed, to give them opportunities to suck and associate sucking with their mouth with food, because oral aversions are so easily developed and from what I've read and learned from other preemie parents, they are difficult to overcome. I really do understand your desire to not use bottles, breastfeeding is of course ideal, but bottle-feeding your breastmilk is a good alternative for the time being if it allows him to not use a feeding tube. Long-term use of a feeding tube can have many complications, besides oral aversion.

Below is a website for preemie parents. There are a lot of members who have had 24 weekers on there and a lot of members who have experienced tube-feedings, by ng tubes and g tubes, as well as many members whose little one's have experienced oral aversions. I don't know how many 24 weeker moms you will find who are trying to breastfeed their babies, because as you already know, breastfeeding a preemie, especially a micro-preemie has many obstacles. But, it's a great resource for preemie parents and hopefully you can make some meaningful connections with other moms there.

www.inspire.com/groups/preemie

[@llli*jenniebean5]

I totally forgot to mention this...one thing we did for a while (when he was about 17 mos we started) was thickening his liquid. For a while he had a lot of trouble drinking anything out of a sippy cup (he'd choke, aspirate and get sick). So we used Simply Thick and thickened his water in his cup to nectar consistency. He did swallow better with it this way, but he quickly learned his sippy cup was the only one that had thicker liquid in it and so he started going after his sister's cup and refusing his own. Before he was switched over to all feedings at the breast, one of his Drs told me to thicken the breastmilk in his bottle with rice cereal (because of reflux), but I decided not to do this for various reasons. Simply Thick is nice because it doesn't add calories, color, or taste (at least it says it doesn't, I think there's a very slight taste when in water).

Of course, that won't help you with breastfeeding him, but if you do decide to wean off the ng tube to bottles, even for a bit before switching to all breastfeeding, it may be worth asking your Dr about to use in his bottles to see if it helps him swallow.

[@llli*krystine]

Of course, that won't help you with breastfeeding him, but if you do decide to wean off the ng tube to bottles, even for a bit before switching to all breastfeeding, it may be worth asking your Dr about to use in his bottles to see if it helps him swallow.

Please ask a doctor or speech-language pathologist before thickening liquids. For some people it helps swallowing for some it will not. It is definitely not something you want to just trial-and-error at home.