Thursday, May 27, 2010

Accomplishment of a preemie: "DRINKING A BOTTLE"

One of the best parts of having a preemie (especially a super micro-baby), is that you never take anything for granted. For those of you lucky enough to have a healthy full term baby (or termie), you may have mastered breast feeding or drinking a bottle within an hour or so from birth. And from there with any luck, it will just increase over time and then to solids, and table foods and so on.

Well, in the Katie world it was a different story. At first she was so compromised, that she just received liquid nutrition via a PIC-line. And if she remained stable, eventually she could start getting small amounts of breast milk through a tube in through her mouth that goes into her stomach. It took a few weeks before we got to that point. The first time Kate received any milk from me was on a cotton swab on her lips. It was called oral therapy to help promote the development of bacteria in her mouth and stomach and possibly spread some immunity to her.

Then the oral feeds began. I remember that they started with 0.5 ml every 3 hours, and as things went well she maybe got a total of 5 mls a day. That is a tiny amount. You'll see it in picture as the first amount on the end. And every time before she got more they would pull off the residuals, and if there was any abnormality in the fluid they pulled back then it was a big deal and determined whether to get more or not. On top of that if anything was off, she was more apnic, had a low heart rate, didn't have bowel movement, all feeds were stopped.

It would drive me crazy. Everything would seem fine to me, I would go to dinner and come back and there would be ten people around her isolette. She was bloated, they had taken x-rays, feeds would be stopped for 24 hours. Then you would start at a small amount again and so on. We were always very aware that at any moment she could develop NEC (necrotizing enteritis).

Then as time went on, the tube was moved from mouth to her nose. It would cause less irritation there, and could be in for a long time. Kate pulled her tube out all the time. She hated having it replaced, she would scream like crazy. I used to hold her during her feeds so that she would associate me with food, and also so she would leave her tube in. Once I decided to go eat dinner and felt bad placing her back in her isolette while she was eating, when I got back she had pulled her tube out and had milk all over the place.

It isn't until around 34 weeks gestation age that a baby starts to develop the ability to suck, breath and swallow all at the same time. See what I mean, who knew it was so complicated? I just assumed that a baby just took a bottle. We got started at 34 weeks, and at first she might seem like she was doing okay but then her heart rate would drop, and her alarms would go off. Or she just didn't want to do it.

Oh it took forever! I knew it was one of the last things that we had to learn to go home, it made it feel so much more urgent. And after doing better for a bit she, then just started to refuse the bottle and was really stuffed up. She was then diagnosed with reflux, and we were introduced to thickening feeds and zantac. I was at the end of my rope by this point, tired of being away and frustrated. I would just pray that she would take a bottle. Then one day she took 20 mls on her own (the next bottle in the picture). We were home within a two weeks.

Once at home, we had a rigid feeding schedule to follow. She had to get 60 ml every 2-3 hours 24 hours a day. That is bottle number three in the picture. We had to go to the doctors once a week, and weigh her to make sure she was gaining and getting enough. She liked to fall asleep, she liked to refuse the bottle, she liked to spit it up all over you. I thought the pressure was intense in the hospital. Now I was home, without sleep, and trying to feed Kate who at times acted as if I was torturing her. It felt never ending, and at times I really thought we would never get her to eat more than the little bottles we had gotten from the hospital.

But, you know what she did! She then started to take the little Dr. Brown's bottles with 4 oz in it (the first real bottle in the picture). She still liked to refuse the bottle, squirming like an electric eel at times. Oh and the reflux spit up, it rolled out of her at a speed that I didn't know was possible. Covered in vomit, and thank god we had leather couches. Though you still might want to look where you sit in our house.

Time kept moving on, and our little preemie just kept on growing. She started needing the bigger Dr. Brown bottles. And now she drinks 7-8 oz at a sitting. And most of the time its not too much of a struggle. She still has reflux, and don't you dare try to give it to her when she doesn't want it. But, she is doing it!

In one year, she has come from an IV only, to 5 mls a day via a nasogatric tube, to drinking a 20 ml bottle on her own in 30 minutes, to 60 ml bottles at home, to 4 oz (120 mls) with a bit of stuggle, and now 7-8 oz regularly! Way to go Katie, that was a lot of work and you've always done it on your own terms in your own time. The picture of Kate in her highchair from a few days ago says it all: bring it on, try to force that munchkin to eat, it won't happen! All and all we just couldn't be more proud.


  1. holy geez! 7-8 oz, thats awesome, I still can't get Isaac to drink over 5 consistently! I think this blog could be called truth in preemie parenting - because never in a million years did I think I would count every ML! thank you so much for posting this. She is a bottle ROCKSTAR!

  2. I'm with becky there. I cannot get jayda to take that much in one sitting..she is a nibbler all day though. I hate those stupid 2 oz bottles...i think i have an aversion to them! bad memories right there...and we used those for SO long. She is definately a bottle rockstar!!

  3. My I please nibble those little toes? i know they'll be quite scrumptious! Happy almost b'day! It will be an important day for you and kate both!

  4. My name is Lauren I am currently in the NICU in Dallas tx. We have been here three months and going home doesn't look soon. Our blog is I can feel your pain. Kynian was born at 24 weeks, he has come through a lot. He had a problem with asperating with his bottle. We went through the swallow studies. He was put on honey consistancy of simply thick, I'm sure you know all about that. We are currently 37 weeks gestational age. We were actually scheduled to go home on Tuesday of next week. Kynian was on 6 out of 8 bottles two days ago and was doing awesome. We were so happy his room was all ready and the car seat ready to go. But night before last while i was holding him he closed his eyes and his heart began to stop. Long story short they have no idea what has happened to him. He is completely lethargic, we have almost lost him three times in the last 48 hours and no one knows what to do. He went from totally great to deaths door. My husband and I are lost. I liked reading your blog where things worked out.