KerryS
05-01-2008, 12:58 PM
I'm looking into this for Leo (sorry for the typo in the title).
Long story short - one month premature, spent 10 days in the NICU, was on a vent for most of that time. I was able to get him to the breast fairly well from the time he was able to go to the breast (at about a week old) and have been breastfeeding since. He's now 7 weeks old and we're struggling with slow weight gain and possibly inadequate milk production. I'm pumping and supplementing with EBM. I believe the milk production issue is due to a lazy/sleepy nurser and a not very strong suck and inadequate breast drainage. I have *always* had to do breast compression for the entire feeding in order to keep him on the breast. Even when he's sucking, it's usually quite easy to just pull the nipple out of his mouth with minimal effort. Although I've never had nipple trauma, his latch seems shallow and I'm always trying (without much effect) to pull his lower jaw down. He also seems a bit hypertonic in general.
I've got a call in to a few practitioners of CST listed on the website (Uplander? Uplenger? whatever it's called), but I was hoping for some stories from others.
_Gypsy_
05-01-2008, 01:54 PM
CST saved my nursing relationship with my son. He is 3Y3M now and still nursing, but I don't think we would be here today if it wasn't for CST.
I kept a journal, it's VERY long... I will post it, but the short version is that within 24 hours of CST, ds was nursing well, when he wasn't nursing at all before.
Here is everything...
Evan’s Birth Story
February 4th 2005 at around 11am I had an uncomfortable contraction, nothing serious I could still talk through it but it was definitely different then the Braxton Hicks contractions I had been having, I called the midwife on call but told her I didn’t want her to come yet because I wasn’t certain that this was labor, but I did want to give her a heads up in case things started to pick up. I had another one about 30 minutes later, and another about 20 minutes later and another 10 minutes after that. Right around noon I had the first contraction I had to breathe through, and I started timing them, right away they were 4 minutes apart and lasting 50 seconds and I was losing my mucous plug. I called the midwives and asked them to come, within 45-60 minutes the contractions were 2 minutes apart and lasting a minute. During this time my mom was doing some light cleaning & my husband was inflating the birth pool. When I would have a contraction I would lean on my couch so I was in a mostly hands and knees position, swaying side to side and Alexia (4 years old) would run over to me and start rubbing my lower back, and start yelling for grandma or daddy to come quick to rub my back, the pain was by far the worst in my back, this labor was very similar to what I felt during my first labor. My husband finally got the birth pool up and started filling it, I got in around 1:30, I was moaning and making a lot of noise, contractions right on top on each other. Alexia was great she kept saying “You’re ok mommy, just breathe” then she would go running to grandma and say “mommy’s in labor that means Evan is coming” she was very well prepared for this birth and did so well, I am so proud of her. I was getting nervous that the midwives weren’t there yet, and I yelled “where are those damn midwives” just then Erin opened my front door & I sighed a HUGE sigh of relief! Midwives arrived at about 2:30. They checked my temp & baby’s heart beat only twice before my water broke and I needed to push, they barely had the birth supplies laid out & all of their equipment inside. I started pushing & he started crowning almost immediately, they told me to use little gentle pushes and breathe baby out—it was so hard! After his head was out they kept telling me to push, Alexia said “that doesn’t look like a head, it looks like a bone”. I kept pushing and he was out in 2 more pushes! 2:55pm, less then 3 hours from the time my contractions got stronger, 4 hours from the time I had the first contraction that wasn’t painless. Placenta was delivered within a few minutes, baby took a few minutes to pink up but he was great! I got out of the pool & was moved to the couch, I was bleeding quite a bit (several puddles that the chux weren’t absorbing, they kept throwing towel after towel between my legs) but the midwives tortured me AKA massaged my fundus and the bleeding slowed down. I almost had a shot of Pitocin, but I felt fine and refused it. Evan nursed like a champ within 10 minutes of his birth and has been nursing wonderfully since. I took a shower (the water in the birth pool was nasty!) & settled down with my new family. I had 2 TINY tears just inside of my vagina near the perineum, no sutures required. Evan was 8 pounds 12 ounces (small compared to big sis’s 9 pounds 7 ounces), 21.5 inches long, head was 14 inches! He looks exactly like Alexia did as a newborn, just a little thinner. Alexia got to cut the cord and she is very proud of that! I am very proud of my family, everything went very well and the birth was very intense but amazing! If we have more kids they will also be born at home with midwives!
2/10/05
Evan is 6 days old today.
He is not nursing. He has taken 3 feedings at the breast but not in the last 48 hours, he did latch on yesterday for a few minutes (in increments of a few seconds, but he keeps losing his latch).
He is doing this really funky thing with his tongue that I have never seen a baby do. He is not tongue tied, but he will not bring his tongue forward, it either goes immediately for the roof of his mouth, or it looks like he is trying to swallow it he pulls it so far back. He is not sucking his tongue.
We were using a medicine dropper to feed the first few days but are now finger feeding (just needed to get a hold of the right equipment).
I am working with Debbie (my LLL leader and good friend) and she copied several pages from the Breastfeeding Answer Book with things to try etc. She was just here late last night, and we were at the peds office most of today with jaundice issues (his levels are finally coming down and he is finally pooping regularly!). As soon as he wakes up we are going to start doing the tongue exercises.
I talked to my PCM today and he put in a referral to an IBCLC BUT he did say he has no idea of Tricare will cover it... worth a shot, but...
I also saw a "lactation nurse" at the base hospital and she kindly offered me formula. Anyways everyone says I am doing everything right, but I have to be missing something, there has to be something that I am not doing right or something I can do to fix this
Basics: we have tried every position & even tried inventing new positions to get him to latch. He will either not latch (95% of the time) or latch and suck 2-3x and lose his latch. I have Evan's pediatrician, my PCM, and Debbie, all trying to find info for me, in the very little free time I have I have been scouring the internet. One of the things in the Breastfeeding Answer Book mentions a study that was done with these types of babies that taught them how to nurse by using bottles; something like 90% successfully took the breast need more info on that study.
Even when finger feeding he pulls his tongue back, he rarely gets a good latch even though I am working really hard with him to keep his tongue forward.
I am pumping more then twice of what he is eating-- this milk will most likely go to a milk bank, unless of course he never gets to breast, but I am unwilling to accept that as a possibility at this point.
If I can't get my insurance to pay for an IBCLC I will probably try a nipple shield right around the 3 week mark.
He did nurse well the first 12 hours (3-4xs?) or so, but then he passed out for 14 hours after that and all of these problems started when we were finally able to wake him up.
He does the same thing with his tongue even after I have completely emptied my breast. I have tried full breast, empty breast, just a few oz pumped off etc. I have tried every combination of breast fullness with every breastfeeding position and then some.
I am so incredibly frustrated; I am supposed to have all of the answers. I am the one people come to for help. I have never had this hard of a time getting anyone else’s baby to breast, why can’t my baby nurse? What am I doing wrong?
With the exception of his first 24 hours most of these last 5 days are a blur.
2/11/05: 7 days old
He finger feeds easily, but doesn't always have a good latch-- his latch on the finger does seem to be better today then it was yesterday, his tongue is coming over the gum line at least some of the time, and I reward that with a little push to get more milk in his mouth.
I am using breast compression when I can get him to latch on; the very last time he nursed well it was when I used breast compression on an almost empty breast. But he hasn't even latched on in a few days.
He does not suck his tongue. He can bring his tongue forward, just not when his mouth is open. As soon as he opens his mouth his tongue goes right back.
It is not a bad latch, when he latches it is a good latch, he completely loses the latch and there is no suction left.
Update for today: went to a LLL meeting, cried a lot, got the shields, came home, pumped, changed baby, got shield on, attempted to latch baby onto shield-- he did the same thing with his tongue BUT with working with him he did latch after a few minutes then promptly fell asleep. I am going to try again when he wakes up & has energy and an appetite.
2/12/05: 8 days old
Baby will not latch onto the shield . We were able to get him to nurse last night without the shield but he only stayed latched for less then 20 seconds and then would not latch again. This was after doing some of the tongue exercises so we are going to continue those until he starts getting mad (he doesn't like them, but will tolerate a little bit).
I am trying to only nurse him when he is in a good mood, ya know positive association. I don't want to keep trying and have him scream and get frustrated, then just start screaming in any nursing position. We stop and finger feed when he gets frustrated, then try again after 10CC's
I am going to call Monday to see if my insurance will cover my referral to an IBCLC, it could take a while (up to 10 days) to get the actual referral in hand, but they may be able to tell me something over the phone. If they will not cover a visit to an IBCLC then I am going to find one on my own (I already found everyone within a 90 minute drive from the iblce website). I am not sure what an IBCLC could tell me that I don’t already know, but maybe there is some trick I am just not aware of.
I'm not going to change anything yet, I want to see what an IBCLC is going to suggest after evaluating his suck and his tongue, but I am wondering if bottle feeding for a few days would get him used to the silicone and then maybe he would latch with the shield?
2/13/05: 9 days old
Tami (an out of state LC friend of mine) found an independent IBCLC about an hour from me who I just talked to. She said based on what has been described to her about what Evan is doing with his tongue she thinks that even if she saw me in person she would just refer me to an OT/PT that has a lot of experience with babies w/feeding issues and has worked miracles with oral training. She wants me to keep finger feeding in a breastfeeding position and get as much skin to skin contact as possible.
I am going to call the peds clinic on base tomorrow to get a STAT referral (which I didn't know was possible, but she is ex-military and knows how our awful healthcare system works).
Another update:
I called Debbie to update her, and she told me she spoke with an IBCLC (a different one) and she told the IBCLC what Evan was doing with his tongue and she also said that seeing an IBCLC wouldn't do much good and gave Debbie the SAME OT/PT's phone number and name for me to contact.
Debbie asked how many visits and IBCLC said one maybe two visits for most babies, and my mom told me not to bother with insurance that she will pay for the OT/PT as her baby gift to us :)
So I am going to call first thing tomorrow and get the earliest available appt with this PT/OT.
2/14/05: 10 days old
Spoke with another certified lactation educator from the base today, and she also said she can’t help me, but I told her about what the IBCLC’s have said about seeing this PT/OT and she told me to call her with the appt time and date and she would put in a STAT referral for Tricare to cover it.
No appt today. This particular PT/OT only works on Wednesdays. The clinic called her at home and gave her my info; she is supposed to call me to set up an appt. They gave me her home number too, and if I don't hear from her by noon tomorrow (24 hours from when *they* called her at home) I am going to call her to set up the appt. Hopefully I can get in this Wednesday, or at the very least maybe she has some tips that might help, or maybe she will make an exception and see us on a day other then Wednesday (I really don't want to wait another 8-9 days).
2/15/05: 11 days old
I have been doing a lot of reading; someone posted an article about CST (cranial sacral therapy) that says that a fast birth could cause birth trauma. I am speaking to a mom in email who had a very similar birth and has almost identical problems with her son who is now 18 months old; she did ST, OT & PT with her son.
I think the birth may be responsible for this, and I am really hopeful that this PT/OT can help us. I called and left 2 messages at her home & am just waiting for a return call. I hope she calls sometime today and can get us in tomorrow, I really don't want to wait until next Wednesday to get started on this, and finger feeding 24/7 is really starting to wear me out .
YAY! I have an appt! The PT/OT just called me; she had a cancellation tomorrow at 3:30pm. She said she would have the IBCLC's at the hospital come down to work with us after our appt to help get Evan latched on & weigh before and after nursing! I can't believe she is so optimistic! I asked her if she wanted me to bring anything (shield, pump, etc), she said just bring baby & not to starve him (like I would?!) because she wants him happy and content when she is working with him and that she is looking forward to working with us!
2/16/05: 12 days old
The PT/OT was amazing! I am really impressed with her; she did CST which he loved! He was so relaxed and she did a ton of massaging in Evans mouth that he didn't like. Ds has a very tight jaw, when she first started she could not get her finger between his top and bottom gums at the back of his mouth, his tongue kept going up, his jaw was far back & she couldn't get a "pocket" under his tongue. After working on him for a while, his jaw was a lot looser, tongue was mostly down and jaw was still back, she could also get a small pocket under his tongue. She was amazed at how strong he was, he was even batting her hands away from his mouth because he didn't like what she was doing. She thinks he just "wasn't done being born yet" something about the way his skull was & that a fast birth prevented them from shifting properly or something like that-- I am having a hard time retaining a lot of information, I really need a good nights sleep! After she worked on Evan we went down to work with the IBCLC on staff, Evan would not wake up, we tried everything but he was just too relaxed from the PT/OT that he wasn't going to wake up. There was another mom waiting who had seen the PT/OT after us, and her baby was very awake and obviously hungry, so I suggested that she go ahead of us and I would keep working to get Evan up-- just as they finished Evan woke up and we started working with him. He latched on and sucked just a few times then refused to latch again. We continued to work with him in the IBCLC's office for about 2 hours and nothing. I was even spraying milk into his mouth and he would only swallow, not suckle.
I'm supposed to do these mouth massages (I have written instructions and was shown how to do each of them) before and after every feeding (finger feeding or breast if I can get him latched on), and any time he is happy and alert, or just anytime even if he is sleeping. She wants me to do these at least 10x a day.
I have another appt with the PT/OT next Wednesday and will see the IBCLC again after that appt.
I am extremely sleep deprived right now, I fell asleep while holding Evan on the couch today which I have never done with either child & almost fell asleep on the one hour drive to this appt this afternoon -- it scared me. I have decided to give him a bottle for one of his night-time feedings, probably the first one because he usually goes right back to sleep after eating that time, but stays awake after the second one for at least an hour. I spoke to the PT/OT and the IBCLC about this and they both basically said that nipple confusion is not his problem, and one daily bottle will almost definitely not be a problem, this is going to be an ongoing process with him & we can ditch the bottle later.
The PT/OT felt pretty confident that by doing these exercises all day long I have a good chance of him actually nursing within a few days. I am just taking it one feeding at a time right now.
2/17/05: 13 days old
Forget Tracy Hogg! I found the REAL Baby Whisperer.
Evan NURSED! I finger fed him a few ounces then was doing the tongue and mouth massages and he was just so content and happy so I thought it would be a good time to try him at the breast, he latched on immediately and actively sucked and swallowed through a letdown!!! :) About 30 minutes later he started rooting and latched on again with no problem at all!!!! I walked into the kitchen where my mom and husband were and said “look, see him nursing” while crying :) Then he got mad because he got milk and just wanted to suck (I am really a milk machine) so I let him pacify on my finger and he fell asleep.
2/18/05: 14 days old
Evan nursed 4 times yesterday! However he would not nurse overnight, I tried a lot of positions, and I even came downstairs to try to get him to nurse, he just wouldn't latch on BUT he did nurse again this morning, and I am just waiting for him to wake up to nurse again. This is huge progress for us :) He seems to only nurse when he is happy, wide awake and hungry but not starved-- which is why he wouldn't nurse last night being half asleep. I am just going to focus on daytime feedings for now and worry about getting him to nurse at night in a few days.
2 week ped appt today, he was 9 pounds 2 oz (8 pounds 12 oz at birth). Physically healthy & ped was glad to hear about our success & interested in what the PT/OT did and how he started nursing a little more then 24 hours after our visit with her.
2/19/05: 15 days old
This is the first chance I have had to write all day because I have been nursing my baby! He cluster feeds for a few hours then falls asleep for 4-5 hours (nothing wakes this baby during this time) and does this all day long. He is soaking a ton of diapers (more then when finger feeding) and his poops have increased in volume!
He is also comfort nursing!
I have way WAY too much milk, and I am working at taming my milk supply. When he wakes up and starts to cluster nurse I need to pump off 3-4oz from each side before he will latch on and stay latched.
As of 8:30 yesterday morning we have been 100% at breast feedings, no bottle overnight last night and no finger feeding. I did need to wake up to pump last night before he would nurse but I thought about it for like 10 seconds and said a bottle (EBM of course) would mean I could stay in bed, but pumping and nursing would mean I could hopefully ditch the bottle sooner, so I got up, came downstairs, pumped and he cluster nursed for an hour and fell back asleep!
I am taking a hand pump up tonight & hopefully I will wake up when he first starts to stir so I can pump and start nursing him before he fully wakes up.
I am sending the PT/OT flowers on Mothers Day & a thank you note after our next visit with her. I really believe if it wasn't for this woman my baby would still not be nursing. I will be forever grateful for her
If my mom wasn't here to help with the finger feeding, cleaning and helping to care for Alexia I would have likely fallen apart completely. I didn't want her here for the birth, it worked out though, but I am SO GLAD she has been here post-partum. Initially I was crying at least 10x a day, plus I have been sick, lost my voice (finally starting to come back) and the sleep depravation, my husband would have needed to take an extended leave from work because there was no way I could have mentally or physically handled everything that was going on by myself, I had post-partum mental health issues after Alexia was born, and I thought everything would be a lot better this time with the homebirth, no separation from baby etc BUT when he started refusing to nurse and everyone I saw said they couldn't help me I felt hopeless, lost. It wasn't until I heard about the PT/OT that I started to regain hope, and then when he started nursing, well I have just been on a high the last 48 hours!
2/23/05: 19 days old
We had our second visit with the PT/OT; I really like her a lot! Evan is doing great! He was 9 pounds 2oz Friday and 9 pounds 9 ounces today, that is 7 ounces in 5 days 100% at breast feedings!!! She confirmed that without a doubt Evan's problems with his tongue/jaw/suck were caused by his rapid entry into this world, there is nothing my midwives or I could have done differently to prevent this, no one is at fault; women with very fast or very long labors (or cesarean delivery) are more likely to have a baby with this type of problem, I am convinced after all of my research and reading that *any* baby with a feeding issue, no matter how they came into this world should seek an experienced and reputable CST therapist for help. Without this “Baby Whisperer”, without her help, training, expertise and telling me “Yes I can help you, I have worked with a lot of babies with these problems” after everyone else had told me “I have never seen a baby do that before, I can’t help you”, without her own passion for breastfeeding & nursing her youngest two kids for 3 & 4 years each, without her giving me some hope that we could overcome this problem, my baby would still not be nursing. Thank you Pat, you are amazing. As we parted today I gave her a huge hug & told her how much I appreciated everything she had done for me, we talked about ENing and how important it was/is to our kids & how I hope to EN Evan too. She told me to call her at home to let her know how we are doing or if I have any questions, Evan will not need another appointment she does want me to continue the therapies at home until there is complete relaxation in his mouth/jaw/tongue.
http://www.lalecheleague.org/llleaderweb/LV/LVAugSep01p82.html
KerryS
05-01-2008, 02:11 PM
Oh wow, Lisa. What a great story! I have tears in my eyes. Funny, Leo's was a precipitous birth, also (6cm to born in less than an hour). He was also intubated twice and on a vent, which I've read can also cause some tightness and oral aversion. I do believe that his problem is a weak suck/latch - I need to hold the breast at all times to keep him on, and I have to do constant breast compression in order to keep him actively nursing.
I have an appointment tomorrow with a PT who does CST.
Thank you so much for sharing your story!
_Gypsy_
05-01-2008, 02:23 PM
Oh wow, Lisa. What a great story! I have tears in my eyes. Funny, Leo's was a precipitous birth, also (6cm to born in less than an hour). He was also intubated twice and on a vent, which I've read can also cause some tightness and oral aversion. I do believe that his problem is a weak suck/latch - I need to hold the breast at all times to keep him on, and I have to do constant breast compression in order to keep him actively nursing.
I have an appointment tomorrow with a PT who does CST.
Thank you so much for sharing your story!
I think a PT or OT with advanced training in CST from the Upledger Institute is the way to go!
I didn't realize what was going on with Leo, I was under the impression it was due to prematurity and low milk supply, if I had known he had a weak suck/latch I would have recommended CST to you a long time ago :(
Now you know about it though, and have an appt. I hope you have the same wonderful experience that we had, and that Leo is nursing like a champ in no time.
Let me know if you need anything...
KerryS
05-01-2008, 03:21 PM
I didn't realize what was going on with Leo, I was under the impression it was due to prematurity and low milk supply, if I had known he had a weak suck/latch I would have recommended CST to you a long time ago :(
Well, I think the low milk supply has been due to a milk transfer issue, and we've all assumed that he's just a sleepy/weak nurser due to his prematurity. But over the last couple days I've been looking at other possible causes, and realizing that he's just not a very strong sucker, and it's not normal, even with sleepy babies, to need to have to do breast compression for the *entire feed*. So I'm hoping the CST will help.
KerryS
05-03-2008, 06:17 PM
Thanks for the email with the exercises, Lisa! No, he didn't give us any exercises to do at home.
I took him into work this morning and he had gained 4.7 oz in four days! I don't know how much of it is the supplementation and how much of it is all the extra pumping to increase milk production. I'm afraid to wean off everything too quickly, so I think I will just continue as we are doing until his next weight check (I bring him in ever 4-5 days) and if he's still showing a gain like that, I'll slowly decrease the supplementation over several weeks (but will continue to pump in case he's still having problems draining my breasts).
At 7 weeks old, he's FINALLY over 7 lbs!
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