One Step Forward, Two Steps Back

One Step Forward, Two Steps Back

It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great.  And then the numbers came in….. 3.445 kg  (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday.  She should be gaining an ounce per day, not losing it.

I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong?  She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2.  I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.

3 thoughts on “One Step Forward, Two Steps Back

  1. You ARE doing everything right…she may just be eliminating some of the fluids/medication she was given for her surgery.
    You are a great Mom and Mark is a great dad…both of you will enjoy the simple things in life soon!!!!

    Liked by 1 person

    1. It sounds like you’re doing a great job! I was in NICU for six weeks with my baby last year. One week was dealing with her breathing issues, two weeks was awaiting a diagnosis (where she was unable to be fed, she was ok dextrose) and three weeks was exactly what you said there!! Waiting for feeds to improve, weight to pick up and reflux to settle. It was the most tedious part. Hang in there! We brought her home with NG tube, my husband was taught how to pass one :,( but I can honestly say, when we got her home and into a more regular feeding routine and got her NG out (yay) the weight came!! She’s one now and a very good weight!!! 🙂
      Best of luck to you and your baby xxx


  2. Try to keep your head up and focus on the positive… We had the same issue with Codi when she was in the nicu… Just remember she was just pumped full of fluids. It could be as simple as she may have been weighed when she had to pee/poo yesterday and had just had a big pee or bowel movement today. Keep doing what you’re doing. I know it’s hard not to worry but you’re doing an excellent job and doing everything you possibly can for her.


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