Week 12

At 12 weeks old, Gesina is NG tube free! She has been off the NG tube for a week and 2 days and I'm very comfortable saying that we are past the point of no return. She takes her bottle pretty well now but the amounts she takes is somewhat variable. Part of the reason for that is we keep messing around with her formula because of her acid reflux so even the Pediatrician says her small weight gain last week is understandable. The Pediatrician is on board with getting the acid reflux under control and like me, believes that once that is done, Gesina can eat without pain and will be fine with eating/weight gain. Right now, Gesina is in the 40th percentile for weight and 50th percentile for height which in my opinion is perfect.

So what are we doing about the acid reflux? We checked and Gesina does NOT have a milk allergy so we really are just dealing with reflux. We've switched her formula, again, to regular formula mixed with baby oatmeal. I'm still working on the ratio of formula to oatmeal as that's more art than science. The amounts she takes has gone "down" as the oatmeal bulks up and adds calories. This is a bit scary for me because the amounts Gesina takes has been such a stressor before the NG tube was gone. I'm trying to live with the ambiguity as she has seemed more content after eating and she is still creating "output"... hee hee. We've also started her on Prilosec, which tastes horrible and is difficult to get her to take but if it works, we'll do it.

In other news, rumor has it that Gesina smiled! Of course, as a working mother I missed it :-( But one smile just leads to another and it's only a matter of time before I get to see my first gummy smile. She has had a string of good days as well with a "neutral" mood to add to the already well established crying and sleeping. Her neutral mood is such a pleasant surprise. She just looks around and absorbs the world around her. I can't wait to see more of this as we get the acid reflux/colic under control. Next up for us, sleep training. I need to get her on a schedule and be able to sleep in her crib at night with no drama. Wish me luck and I'll let you all know how it goes :-)

Colic?

I think Gesina has colic :-( My mom said I had colic as a baby so I'm blaming her for wishing this on me! We have her well baby appointment on Monday so hopefully I learn more about what to do about the near continuous crying in the evenings. I also have an appointment with the gastrointestinal doctor on Tuesday to help figure out the acid reflux/NG weaning issues. Gesina has had the NG tube out since Wednesday (when she last pulled it out). She does cry and struggle for her evening feeds, which is when I've had to put her NG tube in in the past, but if she is colicky than I'm going to try to just ride those feedings/times out and hope her late night feedings go well. She may lose weight and/or I may cave and NG tube her, but I have a plan! I'm also just hoping that the colic issues resolve sooner rather than later as she is 11 weeks old. I couldn't possibly express the level of frustration I feel when she is in hour 5 of crying for no reason...

While I ride the colic wave, here's a pick of Gesina hair that I put on Facebook. I'll update after her doctors' appointments.

Ups and downs of home life

I thought the ups and downs of the NICU would be the end of the drama but there are similar ups and downs now that we are home. This last week had me learning about acid reflux formulas, resulting constipation, mixing formulas to balance these concerns and spoiled formula. Just imagine the pain and discomfort my poor girl suffered while I figured these things out and the sleep I missed out on while she suffered :-( The "wins" from this past week include a whole 4 days of no NG tube and some serious bottle drinking! While I did have to NG tube her eventually (not sure what slowed her down, acid reflux, constipation or spoiled formula), it was a great run and she even gained weight this last week. She pulled her tube out again today so we'll keep it out until I have to put it in. Maybe if we can find the right formula balance she won't need the NG tube... a girl can hope!

Other good news is I finally had a therapy/home nurse visit that didn't leave me in tears :-) Gesina is doing so well that they were impressed with her progress, especially given the challenges we've been facing. She's taken full 4 ounce bottles in 20 minutes like we want her to. She is also making more eye contact and not looking upwards so much. I feel we are starting to get her "back" from the NICU experiences. What I mean by that is she had some odd habits (eye's rolling up, greater disorganization issues with feeding, little eye contact) that we are overcoming more and more every day. She is even starting to touch toys with her hands and her NG tube, of course :-) so it's nice to put all the NICU stuff behind me. Kimberly and I have even taken her to the grocery store, Target, AND the frozen yogurt place and her head didn't spin with projectile vomit spraying everywhere... yeah, too many horror movies on my mind :-)

Don't get me wrong, it hasn't been all butterflies and rainbows. My family have worried about my sanity and commitment a few times as I've stumbled through this last week. I've had quite a few moments where walking away to regroup was necessary... but with everyone's encouragement I've come back around each time. It really does take a village (even a virtual village if necessary) so a big thank you to Adrian, Kimberly, Mom and Monica. Sadly, your help will be needed for years to come! Rome wasn't built in a day!

Calling in the calvary

I spent the weekend learning Gesina's cries. I now have a better sense of when she's bored, diaper change, etc. and even saw some cues for when she is hungry... then, Gesina started throwing up her feedings, pulling out her NG tube on a near daily basis, refusing the bottle, and got my cold from last week. So needless to say, we've had a few setbacks this week and I had to put on my detective hat to see if I could figure out what's going on. Why is Gesina throwing up? Unfortunately the technician who trained me on how to use her feeding tube confused speed with volume controls on the pump. So when I want to feed her 120 ml at 75 ml per hour, I was actually feeding her 75 ml at 120 ml per hour... essentially feeding her at a speed much quicker than she can tolerate. This wasn't a problem when she was taking most of her feeding by bottle but when her bottle feeding started to fall, she was being "super soaker" fed. This increased her vomiting at the beginning of the week until I figured this out on Tuesday morning. Then, her early intervention staff (case manager and occupational therapist) pointed out that her feeding behavior suggests she has pretty bad acid reflux. This MAY explain why she is essentially refusing the bottle at this point. Beyond pursing her lips together to refuse the bottle, she sleeps through feeding times and is impossible to rouse. This child has a serious ability to sleep and has been sleeping about 19 hours a day (because of her cold I think because she is sleeping more this week compared to last). To address the reflux, she is elevated for feedings, elevated in her crib, and I'm feeding her acid reflux formula. We'll see if these things help. I decided to stop nursing her as it seemed to be confusing her at the bottle and she was still having the mid-meal freakout. The more time spent learning the bottle the better considering I work and the bottle will be a constant in her life so she is transitioning to formula.

On Monday the home nurse weighed Gesina and she had gained but only half what they want her to gain. When I told her I was trying to nurse Gesina, then bottle feed her, then NG tube her, which was taking me at least 1 hour and a half before I NG tubed her, she was annoyed that I was not advised more closely on how to feed Gesina. She told me that Gesina was burning calories having her mid-meal freakouts for so long so it was time for me to switch to 20-30 min bottle feeding then NG the rest. I don't know if this will help or not because miss sleepy head is too sleepy to feed!

For me, it's been a rough week. Inserting an NG tube daily is emotionally exhausting. I was successful the first time but the second time was quite a trial. First the tube came out her mouth instead of down her throat. Then, after having finished inserting the tube and taping the tube to her face, she turned bright red and the tube started to curl out of her mouth. I nearly lost it after that. Adrian talked me down and I finally got it in. Gesina has discovered her hands and they are in her mouth and on her face often so this NG drama is likely to continue. One idea the OT had was to put gloves (or socks!) on her hands so she can't rip the tube out so easily. I'm proceeding with caution but am becoming more open to a g-tube at this point. I promise to let her ride the cold out and see if the feeding goes better but I'm not going to close my eyes to the possibility that she'll need a g-tube as the NICU doctors had mentioned as an option.

To deal with me and my stress/anxiety/hormones/adjustment, I've reached out to my neighbor for food, hugs, and conversation (hi Donna!) when needed and on Saturday my niece (yay Kimberly!) is coming to help me. This is me calling in the calvary! I admit I need help and I'm actively seeking it. I hate it, mind you, but I recognize that I'm in a situation that is difficult and need support. Hopefully next week gets better as Gesina fights her cold, I have reinforcements, and I have more time to adjust to my new normal. Until then, here's a picture of Gesina at 9 weeks old today.