Tuesday, February 5, 2013

Littlest girl

Magpie is now 3 months old and just hit 11 pounds. She is little. But she wasn't born little. She started life at the 50th percentile (8.1 lbs) and has been steadily dropping ever since. She is now down to the 10th percentile. We have been able to keep her from dropping further through valiant efforts.

She is beautiful, but she has not been much of an eater. Breastfeeding has been a complete bust. Despite many, many meetings with a lactation consultant, she was not able to drink from the breast. Bottle feeding (with my pumped milk) was also not going so great - she had a hard time getting the milk from there as well. Along the way, we tried the starter SNS, full-size SNS, the Haberman bottle, and most recently are using the Playtex Nurser bottle. And we've gone from an every 2 hour eating schedule to an every 3 hour one (we briefly tried a four hour schedule, but abandoned it after one day because it took her over an hour to eat).

photo credit: http://www.etsy.com/shop/abbyjac?ref=seller_info
Our lactation consultant finally recommend we see another lactation consultant who is a sucking specialist since Magpie was having so much trouble consuming her calories no matter  how we tried. And then this specialist recommended we travel to Connecticut to see a speech language pathologist ("I refer the most difficult cases to her" - ouch!). We've seen this person twice.

Apparently Ms. Magpie is missing some of the reflexes that would help her suck. Her tongue has continued to be tied despite three frenotomies, so poor girl endured a fourth one last week. We are doing exercises with her daily to help her learn to use her mouth and tongue and to develop those areas better. This specialist also wants Magpie to be evaluated by a physical therapist because she is worried about her muscle tone - she feels Magpie is too rigid.

All along she has been gaining approximately 0.5 ounces a day, which the pediatrician says is acceptable for her at three months. It was apparently not acceptable prior to this, when she should have gained 1-1.5 ounces daily, so she missed a lot of potential growth during the first three months. We go back to the pedi tomorrow for a check up, so we will see what she has to say about her at that point, and also what she thinks about a physical therapist evaluation.

Who ever knew it could be so difficult to feed a baby? And breastfeeding, ha ha! A complete disaster. I'm fairly established with the pumping at this point, although Will really wants me to stop because I keep coming down with mastitis (five times with it so far...all in one breast). I think it is vitally important, though, for Ms. Magpie and really want to keep it up as long as I am able. I want to try to do the very best I can by her. She was and is so wanted. Who am I to give up on her with the most nutritious food just because she has so much trouble eating? So I am trying to keep it going, day by day, feed by feed.

Magpie is absolutely lovely, just small. And I am so thrilled to be her Mama.


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  1. Oh, Magpie!
    I'm glad her doc is being so active in trying to get to the bottom of this, and is looking at different things. And I'm glad she's gaining--that's a win, no matter how small a gain.
    But oh, how I wish this didn't have to be such a battle for either of you.
    Thinking of you all, and hoping that things calm down a bit--and that this last procedure might do the trick (I know, where all others have failed, but still...)

  2. I'm sorry you guys are still having such a tough time with feeding, but it sounds like you are doing all of the right things.

    What is the pediatrician saying about her weight? I know you want to give breast milk exclusively if possible, but maybe mixing a little bit of formula into the breast milk would give Magpie a few more calories? (Only if your pediatrician says that's okay to do, of course.) A friend of mine who had premie twins had to give them a special calorie-dense formula for a while to help get their weight up, and it definitely worked.

    Also, I'm not sure how accurate starting weights are for babies of moms with gestational diabetes. If I remember correctly, Magpie lost more than 10% of her weight after birth. Miss A lost 11%, and I remember reading somewhere a few months afterward that babies of moms with gestational diabetes tend to lose more weight right after birth than a typical baby, because they retain more water than a baby of a mom without GD.

    So even if they're born at a weight that's in the 50th percentile (Miss A was about 55%, I think), I don't know that they're likely to stay there. Miss A's height has remained in the 90-95% range, and her head circumference stays in the 40-50% range, but her weight is around the 15% range now, and her pedi isn't concerned. I'm hoping and praying that she will reach 18 pounds (25th %) by the time she is 1 year old in 6 weeks. I was rooting for 18 1/2 pounds, but then she got a really bad cold a few weeks ago and lost a full pound, and that set her back, so she's right at 17 pounds now. And that's with her being a late bloomer in the moving department - if she was crawling and more actively rolling around, she'd be below 17 pounds. (She was 7 lb. 12 oz. when she was born at 38 weeks.)

    I don't know what rigid muscle tone may potentially signify, but having a physical therapist assess her wouldn't necessarily be a bad thing. They can either reassure you that her development in that area is normal, or suggest exercises you can do to help her. Miss A starts her PT tomorrow (1/2 hour once a week for the next 3 months). It may just be coincidence or the fact that most of my friends who have babies these days had them through IVF, but among the people I know with babies, it seems very common for IVF babies to have muscle tone issues of one sort or another. I don't know that it's related to IVF, but it does make me wonder.

    Anyway, glad to hear the update. And I think you are doing an absolutely fantastic, fabulous job with the pumping and breast milk feeding - way to go!

  3. Magpie is perfect. Feeding can be so difficult. My now 25 year old niece was a poor feeder and tiny at six months but is as healthy as could be. Being a parent is the most scary thing! It will improve. Take care.

  4. She's a beautiful girl, and she's got a great Mama. :)

    Do you have a lot of time off of work or will you need to go back soon?

  5. Not to suggest she isn't small or you aren't on the right track, but for your piece of mind- have you referred to a WHO growth chart? The ones normally used here in the States are quite different from the WHO chart. The WHO chart is supposedly better for breast fed babies.

    This post is by a scientist mom about the differences of the growth charts- well researched.


    Wishing you all the best- all of you!

  6. My little one struggled with latching. He was 6lbs 9oz at birth. At 4 months he was only 12lbs 2oz. At 6 months only 12lbs (down two ounces, but an inch longer than at 4 months). Sounds like you are doing an amazing job!

  7. I also had a rough time breast feeding but it was more an issue with supply. My son ended up dropping into the 3rd % and he is 1 now. Still on the small end but I think that's just how he's built. Don't be discouraged by those %'s. I've been told that the test group is from one area and does not have a wide range of cultures. Magpie is such an adorable sweetie. Don't sweat it if she's smaller, you don't need anything else to worry about ;) hang in there. Prayers for magpie to heal and learn those sucking skills

  8. I'm sorry you're struggling. Wish breastfeeding was going better... but, big picture, maybe breast ISN'T best for you and Magpie. Many factors, beyond straight nutrition. And I say that as a mom forced to quit nursing her first and still going strong with #2. Different situations all around.

    I've also heard that about babies of GD moms losing a substantial amount of weight right away. Perhaps compounded by her feeding issues, but maybe she's "genetically" supposed to be small, too?

    Hope it gets easier, Mo.

  9. Your Magpie is my Magpie! With the exception of being tongue-tied, I was right there with you. She couldn't nurse so I pumped. She could barely eat from a bottle and had muscle tone issues (she had low tone). We ended up seeing an SLP and OT for about 6 months.

    It is frustrating and isolating when something that's supposed to be so simple isn't. You can't just pop a boob in their mouths, you don't want to give formula. In your case you'd think someone would cut you some slack and give you an easy ride for once.

  10. No words of wisdom except to say that it sounds like you're very much "on top" of thing and have a good team on your side. Certainly what my admittedly non-expert eye sees in your photos is a beautiful baby who is thriving. I don't know what to make of those charts; my brother was basically off the bottom of them (height and weight both) his entire childhood, and has grown to be a smallish (say, 5'8" and 160#?) adult, but not, you know, exceptionally so.

  11. My best friend's baby is nearly 20 months and is about 18lbs. She was about 6.5 at birth, so that's a gain of 11.5 in 20 months and she's a perfect little toddler. If Magpie was about the same at birth, she's gained half of that in three months. Maybe that doesn't help, but maybe it does... I hope the latter!

  12. Sounds like you are on top of things and getting the evils you need to help her work through this. E had weight gain issues too--started in the 50th percentile and dropped to the 3rd by 6 months. It was very stressful, but eventually with the help of the right doctor we were able to get some weight on him. Sounds like you are on the right track. Hugs to you for having to deal with mastitis so many times. I hope things improve soon.

  13. Durrr...that should say evals! DYAC!

  14. I don't have a lot to say, other than it seems you are doing everything in your power for her! I am sure she'll be fine. Stay strong...

  15. You are doing an amazing job. I struggled with getting my daughter to latch. I'm so sorry you and Miss Magpie have struggled so much. I hope you can get some answers soon! Thinking of you!

  16. Ugh, universe, it's time for Mo to have SOMETHING be easy. Seriously. I'm so sorry that this has been so tough, Mo. Magpie is a really beautiful baby and I'm so glad that she's HERE and YOURS. A friend of mine had a baby who was always just a little peanut - and around the one year mark she started really getting interested in food and fattened right up. Magpie WILL get there, if for no other reason than by your sheer determination. She was meant to have you as her Mama, because no one would fight for her like you.

    (But I agree with some other commenters - has she tried formula? If she's having bottle difficulty that's just one more challenge, but they make high-calorie stuff that might make up some of the weight, and she could have maybe just one bottle a day of it. Which Will could give her. While you take ten minutes to collect yourself/shower/nap.)

    She's lovely, no matter what. xoxo.

  17. I'm sorry feeding has been so tough. Feeding a baby is supposed to be so simple, but it's often not. One of mine was medicated for reflux but I'm still not convinced that was it. She was so difficult to feed DH and I would trade off. I often felt completely defeated that I couldn't even manage this most basic part of childcare. Breastfeeding didn't work for us, either.

    My other daughter had low muscle tone in her tongue diagnosed at 17 months when she was only saying Mama and her triplet siblings were saying many words. We also did exercises and had a Speech Pathologist that came every other week for several months. Looking back that's probably also why she had a hard time with spoon feeding, especially the thicker textures, and would just gag. Now at 3.5 years old she still has trouble with some textures, particularly the skins of fruit and vegetables, but has long since graduated from therapy.

    Has anyone suggested adding protein powder to her bottles? Our NICU did that and we continued for several months after the babies came home. It wasn't much, but one of the neonatologists said studies have shown that preemies tend to be shorter than full-term babies (though only 1cm on average) and the extra protein helps combat that. Not that Magpie is too short, but it might help increase her calories. We used a special protein powder that was finely milled and easily dissolved. I can't remember the brand but could find out.

    I hope this fourth procedure and the new therapist can help! It's definitely time for something to come easy for you!

  18. OK, while I different issues with my daughter (who will be 20 years old in a few days! seems impossible) she was born at 7 lb 4 oz and at a year she was only 16 lbs (and they are supposed to triple the first year) She was full term and had no particular issues. She was breast fed.

    The doctors wanted to do all this failure to thrive tests and I held my ground-- she hit all her mileposts, was walking and doing what babies were supposed to do so I refused. She was just tall and thin. I think my daughter fell to the 5% percentile.

    Today she is 5'5" and is about 120lbs!!

    So, just get that poor tongue fixed, but use your judgment. Especially with all your medical knowledge. I am sure proud of you for hanging in there with the breast pumping...... If you need/want to quit don't be hard on yourself. Many of us grew up on formula and did quite fine. (myself included)

    She is so cute!! Enjoy her!!


  19. So sorry to hear this. I hope the doctors can figure out how to help you. Don't be too hard on yourself, a rested mum is better than an exhausted one. Wishing you the best.

  20. My friend, you are the poster child for perseverance but.... don't kill yourself with this.

    Enjoy your baby and give her formula - it is all good. My preemies are gorgeous and healthy and almost never sick and they were not breast fed.

    BTW K only started putting on weight when she went onto solids... :) we joke that she really was never into milk and was waiting for real food!

  21. My heart goes out to you all. I wanted desperately to be breast feed my daughter and we just couldn't get the hang of it, she was slow, I had almost no milk. We finally gave up and went to formula. I felt like such a complete failure, this one thing I couldn't even do. Well she's 8 and you can't tell her from the formula babies down the block honestly.
    If it's hard on you it affects her and it's ok to make a different choice.
    Hang in there and know what ever choice you make will be the right one for you and your family.

  22. She looks like such a sweet angel, I'm so sorry that you continue to have feeding issues. I pumped for 8 months for my son after breastfeeding was an epic failure. Keep up to good work as long as you feel like its right for you, mama! Day by day is the right attitude. Much love.

  23. day by day, feed by feed is how you can decide what you want to do too.... and until you know you are ready to make a change, just wait. I feel for Will, and your poor breast, but most of all, I feel for you. YOU (and I, and all of us) will know when we are ready to make changes. I realize sometimes things happen and we don't have choices, but when we do? Boy Howdy, let's navigate by feel.

    love to you,

  24. My preemie twins were born three months early, so differnt issues but I can relate to the struggle to gain weight. We gave my daughter human milk fortifier in my pumped breast milk to help with her weight gain. She was too tiny at first to breastfeed so I know what it is like to pump and bottle feed. You are doing a fantastic job! It's hard but so worth it. Sounds like you are on top of everything.

  25. You may have already found this resource, but I found it immeasurable helpful when I started pumping to go to work. (Eventhough I wasn't exclusively pumping, the hints and tips were so great.) I especially liked the EP Support board at Parents Place.

  26. YOU ARE AMAZING! Way to go Mom and Magpie!

    I can relate to a number of things you mentioned...I am still hanging on to providing breast milk via the pump after 8 months. You do get into a groove and it isn't as laborious as it was initially. I took it one day at a time, and it didn't seem to weigh me down as much as making a commitment to reach a certain age. My husband and mom "wanted me to stop" many times for my own health, and it would bother me and feel unsupportive, except I knew they were only trying to be supportive.

    You didn't mention this, but if you are anything like what I think you are, ie like me, I was obsessed with how much they ate and felt like I force fed them sometimes. (I realized recently that I have an affinity towards the sight of an empty bottle.) I had to constantly take a deep breath and 'let it go' if they didn't drink all of their bottles.

    My girls had increased tone and started OT around 3 months too. They are now 8 months/6 months adjusted age and are meeting and exceeding all their developmental milestones despite what I feel has been really limited intervention to affect a change. So, I wouldn't worry too much about it. Interesting what someone pointed out about a correlation between muscle development and IVF.

    It sounds as though you are in a relatively good place emotionally. Day by day!

    Thanks for the update.

  27. Small but mighty she is!

    Sorry the feeding has been off to such a tough start. Hope it's all uphill from here.

  28. Sorry to hear that it's been so difficult for both of you.

    FWIW if you consult Dr. Google, don't freak out about the low muscle tone issue. It can be related to bad stuff, but it doesn't have to be. My Tamale had low muscle tone for the first couple of years, and received 14 months of weekly OT/PT (for her motor delay, but they also worked on the rigidity). When we went for her 3 year well child visit I was holding her during the immunizations and her whole body totally tensed up just like she used to do EVERY TIME she cried as an infant/toddler, and I realized that I couldn't remember the last time she'd done it -- the rigidity is totally a thing of the past now.

    Good luck.

  29. I'm sorry Magpie is struggling with feeding. My little Smudgie bug never had trouble latching or anything like that, but has had a lot of trouble gaining weight-- he too has dropped percentiles, and he was only 5% to begin with! He dropped off the chart at one point, but is now hovering around 3%.

    We've now started a full GI workup (maybe at the hospital where you and Will are, I'm guessing) to rule out any physiological issues. But, given his extreme resistance to textured foods of any kind and dislike of chewing, it's probable we'll be doing similar mouth exercises with him soon. And he's 16 months! So while I know this is frustrating and distressing, it also could be good to diagnose and begin to correct these issues with her while she's so young, rather than let them persist into toddlerhood. Either way, I know with you as her mama Miss Magpie will thrive.

  30. Hi,

    Mom of a 21 month old- I was unable to produce enough milk when my son was born, went to specialists/talked to doctors- and long story short, the best thing for both of us ended up being me providing as much food as I could and feeding him formula for to supplement (it was more like the other way around, because he needed a lot of food). Anyway, I felt conflicted at the time, and many medical professionals made us feel like formula was bad word. Anyway, in the end it was the best for all of us- and I wish I didn't feel bad about what was basically a decision to feed my baby food that he needed!

    Hang in there! There are many articles out there about the "over" promoting of b-feeding to make up for the over pushing of formula back when women went to work full-force...not that it is a bad thing, of course b-milk is good, but formula isn't bad!

  31. Good for you and your ped for following through on the eating issues/muscle tone in mouth. My son couldn't quite get the hang of breastfeeding and I was told by several lactation consultants AND his ped that he was not tongue-tied. However, at 2 he was severely delayed with his speech. And he did have a tongue-tie that he had clipped at 2yr3mo (much harder than as an infant). He still has somewhat of a tie though and is speech multiple times a week. Hopefully since you are being so proactive Magpie will not have such difficulties as a toddler!

  32. Mo, how did the pedi appointment go?

  33. My youngest daughter was 10 lbs 6 oz at 4 months, which was 0.00th percentile on the growth chart (though her height was 33rd %, and head around 50th). For a few weeks I worried about this, until I had the idea to ask the doctor to pull up her older sister's chart. Well, her older sister was 0.56th% for weight at that point (and essentially the same on the other measures)--so just a few ounces heavier. And once I realized that the two girls were following almost exactly the same growth pattern, I relaxed, and haven't worried about it since. Big sister is a verbal, dextrous, social, charming 4-year-old, and little sister is on track to be the same. Point is: I see so many parents worrying about babies being 10th percentile or less, when in fact at least 10% of kids are supposed to be! And even 0.00th percentile can be perfectly healthy. Note, I am 5' 5" and of light-to-normal build, so I'm not particularly tiny, but being slim in childhood just runs in the family. I have the reassurance of precedent, which you don't with Magpie (or are there similar growth patterns elsewhere in your families?), but I do think that, if the baby is thriving in other ways, then all could be fine in terms of her caloric intake. The hassle with how to feed her is still a hassle, I'm sure, but maybe it's not worth fixating on the numbers.

    Note, I just weighed my baby, now 7 months, and she was just shy of 13 lbs. So Magpie will probably be bigger than her!

  34. Oh, also, about my 0.00th percentile daughter: she was 12th percentile at birth, so we also saw a drop in percentiles. (Not as much as Magpie, but when you start at 12th% you can't drop any more than 12 percentiles!) And she really is perfectly healthy nonetheless.

  35. Regarding the tongue tie that keeps coming back, have you done after-care? We were specifically told to do 10-14 days of 3x/day care on the wound which consisted of mashing the wound site where the tissue started to reform. I went to a seminar by Lawrence (Larry) Kudlow or Kutlow (?) and he said that many practitioners miss this step and they just grow back again. This guy is in upstate NY and is considered somewhat of an expert in posterior tongue ties. It might be a great idea to give him a call and at least pick his brain a little. He is very personable (I have no endorsements here, but he was in town giving a talk so I heard him and was impressed...we subsequently had our DD's tongue tie lasered and did the after care but it sadly did not improve her latch issues).


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