When Things Get Tough

Life.

Sometimes it is glorious and sunshiney and full of beauty and happiness.

And sometimes? Sometimes it is messy, crappy, and full of worry and failure.

Right now I am definitely feeling more of the latter. I am so worried, stressed, and anxious at the moment.

Maddie was born 9 lbs, 1 oz. She dropped to 8 lbs 3 oz by the time we left the hospital 2 days later (which is normal) but was back up to 12 lbs 11 oz (90th percentile) at her 2 month checkup. From then on, we have been seeing a huge decrease in weight gain for her. By 4 months she had only gained 9 oz and had dropped to the 40th percentile for weight. The doctor wasn't too concerned, as around 4 months most babies fall into what will be their regular growth curve from then on. We assessed my milk supply, as I breastfeed, and determined that it was sufficient for Maddie. We checked diaper counts, pumping amounts, and her developmental milestones. All looked good.

By 5 months, she had only gained another 6 oz. Normal breastfed babies gain .5-1 oz per day, so she was clearly behind in weight gain. We decided to up her feedings, both milk and solids, and come back for a check.

At her 6 month appointment a few weeks ago, she had lost 2 oz, putting her in the 10th percentile for weight now (13 lbs 8 oz). She is clearly dropping significantly. Even her height and head circumference growth have slowed down considerably (height has gone from off the charts to 52nd percentile. Head circumference has gone from 85th percentile to the 16th percentile).

We have been officially diagnosed as failure to thrive, meaning that Maddie is not growing as she should.

I cannot explain to you the feelings that come along with this diagnosis, especially as she is an exclusively breastfed baby (with solids). I am doubting everything about my ability to care for and feed my child. We are trying to supplement, but she is currently refusing bottles, as well as cups or baby oatmeal mixed with formula. This girl has serious opinions about food and what she likes. Surprise, surprise. :)

We still think that the problem is not my supply, as she has the required 6-8 diapers per day, seems satisfied after most feedings, and I can pump a normal amount. She is also right on track with her cognitive and motor development. Even still, we are trying to supplement and see if that makes a difference. I have no problem feeding her formula, but she just. won't. take it. It is so stressful. I am also trying a few different things to increase my milk supply. This way we can definitely rule out "not getting enough calories" as the reason for her not growing.

We have started the process of testing to see if there is something in her body that is causing her to either not absorb the calories, or to burn more calories than she is taking in. It is heartbreaking to watch your little baby screaming bloody murder as the nurse tries to take blood from the teeny tiny veins in her arm. To think that there could be something wrong with my perfect baby. Some of the possible diagnoses are terrifying to me.  I can only hope that the fix is something as simple as a formula bottle each day or an iron supplement if she is anemic. I am literally driving myself crazy with all the thoughts of "what if." But I can't seem to stop my brain from thinking worst case scenario.

This week, at her follow up, she had only gained 2 oz in the past 2 weeks. Still not enough. Her blood work came back perfectly normal, which is good, but still means that we don't know what is going on in her little body. We have made appointments with the pediatric GI and the lab at Phoenix Children's, but they can't get us in until late May/early June. I feel so helpless. I don't know what to do for my little girl! And it makes me even more worried that we can't get her in to the doc for nearly two months. We will continue to do weight checks with our regular pediatrician, to make sure she is doing okay, but at this point it is a waiting game.

After this appointment, we have narrowed down the basic reasons to "not absorbing enough calories" or "burning too many calories." She is eating plenty of calories. We may need to schedule an appointment with a pediatric cardiologist as well. I feel like a failure. I know it is nothing that I did, and I know that she will probably be fine, but I just can't help it. I look at my skinny-minnie baby and wonder what I did that is causing her not to grow. I don't care if she's skinny, she just needs to be growing!!

I know I am not the only one to face this, very general, diagnosis with their baby. However, it is so much harder than I would have thought. I can't keep the negative thoughts away. I hold her tighter as each day passes without any answers. I hope she knows how much I love her, and that I am doing everything in my power to help her.