On my own...

So a major milestone has come and gone (53 days in NICU and 53 days at home!), Gesina is 15 weeks old, grandma, grandpa, and Aunt Monica have visited and Kimberly has gone home. I'm now the ringleader of my own family circus of 3 cats, Gesina and Adrian! Gah!

Grandma and grandpa brought toys and thankfully, Gesina likes them :-) She has already spent time in her activity gym, which she threw up on this morning, and in her vibrating bouncy chair. Yay for "me time" again as she doesn't have to spend every moment during the day in my arms! The real test will be if I start to lose weight again as I don't eat when Gesina is in my arms all the time. I'm hoping her "gym time" will allow me time to eat at least. My sister has also taught me a slight pressure hug that has helped calm Gesina a few times already. All together, the last few days with Gesina has been NICE. There have been some calm times which is quite a nice change of pace.

Next up, neurology appointment on Thursday. The appointment is an hour away from home so that should be a rough car ride and day with a screaming child. I'm hoping all the testing, etc. that needs to happen will happen on Thursday and not be one of those useless appointments where you just schedule random tests for another day altogether! I'm interested in talking to the doctor about side effects of Gesina's current meds. I'm wondering if her "rages" when she screams like she is mad and rather aggressively claws my body, are a side effect of her meds. I'm also wondering if she sleeps more than most other children her age and if so, if that is a side effect as well. Lots of questions that I hope I get answers to versus just getting blown off.

I'm hoping the therapy appointments this week don't get me down as I won't have Kimberly here to cheer me on! My babysitter, Trish, told the therapists that they stress me out so I'm hoping they pow wow and realize that giving me a ton of scary labels and telling me "we have a lot of work to do" isn't helping. There are just too many cooks in the kitchen right now and I don't need a 4 time weekly reminder that my child has difficulties and is not "normal". I'm still trying to come to terms with the therapists being a help rather than a hindrance. I need to latch onto their treatments and helpful suggestions and ignore the judgmental vibe I get and the scary labels they throw around like candy. I keep reminding myself that they mean well and any help to my child is worth any drama I go through... but it sure would be nice to be left alone like other first time moms!

On being a disappointment...

I've started to feel like I'm disappointing everyone lately, except for Gesina, and the closer the person is to me in my day-to-day life, the more I'm disappointing them. As a bit of a perfectionist, I'm not terribly comfortable with disappointing anyone. I do blame society and in particular, American work-family policies and culture for putting me in a situation where I have to feel like a disappointment. In Nordic countries family leave policies are amazing and allow parents to take the time necessary to adjust to new family arrangements. In fact, I've heard of people in those countries being seen as poor performers if employees work overtime; if you work overtime, you are seen as inefficient during regular work hours and you have the wrong priorities. In America, I feel I'm set up to fail or at the very least, to enjoy the experience of feeling like a failure. People around me expect me to be there for them. I don't blame them either. We have roles set up and people have a right to expect others to live up to the roles they fill in their lives and in the larger society. And while everyone knows I'm going through a uniquely difficult transition and say they understand my inability to fulfill my role obligations, these same people continue to ask things of me.

Is this just a work issue? Heck no! Not only am I a disappointment as a professor, mentor, adviser, and colleague, I'm currently a disappointment to the numerous therapists Gesina sees. I never can fit in enough tummy time, massages, and stretches. Am I a louse of a mom? No, I just can't seem to get my screaming child to calm down enough to enjoy her massage and stretches. Don't get me wrong, I do get her to do the massages and stretches, just not as often as I should... sometimes I don't fit them in at all that week. My house is nearly always an embarrassing mess when these therapists and nurses come to visit (thanks to Rufus the kitten). I'm also not able to attend to the needs of my cats or spend time with the boyfriend for that matter. So in all, while I know it's a temporary state and everyone says they understand, I don't like to feel like a disappointment. I'm frustrated that I live in a world that sets me up to feel this way and wonder if, gulp, I'm alone. Are other mothers impervious to feeling like a disappointment in their pre-mommy roles? Are others more forgiving of themselves? Or am I just feeling like a victim of society when I'm not. I'm just a woman who wants it all but doesn't want to do it all... Blah!

On a positive note, next week will mark an important date for Gesina. On Friday, March 21st she will have spent the same number of days at home as she has spent in the NICU! She will also see her grandparents and aunt on Saturday so we have a busy weekend coming up. I look forward to celebrating these milestones and hope Gesina is in a good mood and enjoys them too!

The force is strong in this one...

  

Gesina is 3 months old today... this is the face of colic :-( In the last week she is back to two speeds of either sleeping or crying. The good news is we are off all machines for good now, no NG tube, no heart monitor, etc. She is also nearing the end of the typical age of colic so I'm hoping for a resolution to that soon AND she is starting on week 2 of Prilosec for her acid reflux. My fingers are crossed for less crying and more playtime in the very near future. I will say that while she cries from 6-9pm EVERY NIGHT, she snuggles and sleeps in my arms every day that I'm home! I love snuggles even if they are bookended by crying spells.

Sleep training is actually going pretty well. I put her to bed around 10pm when she's slightly falling asleep and make sure she is awake enough to realize that she's in her crib and she falls asleep pretty quickly. She may fuss a bit but I've only had to go in and "shh" a few times and she'll fall asleep on her own. I've tried to get her on a schedule during the day too but the last few days she's been sleeping nearly the whole day. She's been only waking to eat, cry and fuss a bit, then back to sleep... unless it's 6-9pm of course. Then she graces us with hours of crying which exhausts her and allows me to sleep a bit in between her night feedings. It's everything in my power to not yell at her therapists (PT and OT) when I get the "tummy time is important" lectures. I can't get her to stay awake long enough lately to do any activities and she dislikes tummy time so why encourage MORE crying? Sorry to share my frustration but PT/OT tends to make me worry about my daughter's development way more than they put my mind at ease. I get pressure to do lots of things with Gesina but when she is going through these spells where she is sleeping a lot, I just feel guilty and that I'm a bad mom. I try to keep perspective and remind myself that lack of tummy time will not lead to her becoming a college dropout but dang, I don't need more pressure! If it's good for Gesina I'll deal but it is still hard. 

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.