And we are back at the hospital

So Gesina had some episodes where her left eye would look straight ahead and her right eye would look up and inward. After calling this in to the neurologist, they recommended we go to the ER. One ambulance transfer later, we are back at the hospital where our NICU experience started. She is NOT in the NICU or the PICU but in the regular pediatric floor. She has a room with a couch which is my new bed for the next few nights. The good thing is I know all the doctors already. So far we have done plenty of blood draws, it took 3 tries by the experts to get an IV in her, and we have run a CAT scan, EEG, and currently she is getting an MRI. All I know so far is the CAT scan shows her ventricles in her brain are enlarged. This means her brain is smaller than it should be. Other test results should be coming this evening so I'll probably update this post with more information then. We are currently trying to find out if the eye issue is related to seizure activity (up her meds) or if it is an ophthalmology issue. I'm excited for her to see an eye doctor as I have been concerned about her ability to see for a while. I think she can see but not very well.

Blah. At the very least I'll be here another night or even two. I may have to stop by the area Meijer to buy essentials as I had no intention of living in these clothes for too many days. I'm not leaving the hospital as Gesina is a very fussy eater and I want to be the one who feeds her. I WILL NOT do the NG tube again. No way, no how!

Put us in your thoughts and I'll let you know when I know more.

18 weeks old and counting

I have yet to have a "boring" week with Gesina. She had another seizure last week on Thursday night so we had to up her meds. My dad had to talk me off a ledge (thanks pops!) and to cheer myself up, I googled successful people with seizures. Gesina has more in common with Lil Wayne, Prince, Socrates and Julius Caesar than I realized! It may seem like an odd mix but I felt a bit better after learning more about how others have managed their seizures. Of course none of the above had a stroke as a baby but those are just details... and maybe they DID have a stroke as a baby but didn't have the tools at the time to diagnose it [insert eerie music here]!

That poor child nearly gags on the amount of medicine I have to give her twice a day. I shouldn't say nearly as she does throw them up periodically leading me to give them to her all over again. You can imagine the chaos as she projectile vomits red, grape-flavored meds at me and I have to hold her down again to get her to take the meds a second time... only to have her decide she isn't having it, refuses to swallow and spits them all on to me. She is a feisty one but I can't even get "mad" at her because her strong will comes directly from me! Of course after all the meds drama, I get to do it all over again in 12 hours. Blah.

The GI doctor had me add more formula to Gesina's bottles to "up" the caloric value. So now if I give her a 4 ounces bottle, it has 4 scoops of formula and 4 tablespoons of oatmeal in it. If she doesn't gain weight now, I don't know what we'll do! I'm switching her back to regular formula too as my mom and I noticed that she started to vomit only after I switched to the hypoallergenic formula. I haven't told the GI doctor this yet but I can't have her throwing up all those meds which is what she was going to do now that we were doubling up her formula. Oh, and knock on wood, I THINK we may finally have her acid reflux under control. She is more calm than before so the incessant crying may really be coming to a close. I don't know what I'm going to do with her now that she is more awake and calm! I made her do tummy time Sunday night because she was already fussy. She was NOT happy about it so as I talked to her and tried to calm her, she rolled from tummy to back! She was so mad that she was put on her tummy that she didn't even notice the significance of what she had done but I knew. I haven't yet tried it again as I hate to "poke the bear".

To ensure the seizure didn't get us down, we went to the zoo on Friday. It was a great time with the whole family of me, Adrian and Gesina. She enjoyed it and didn't cry in the car or at the zoo. Yay for adventure day :-)  Next up, NICU Developmental Clinic on Thursday which is an all day affair to gather baseline data on her development thus far. Also, the GI doctor thinks Gesina had a cold for the last blood draw as her white blood cell count and liver enzymes were a little elevated. SO, another blood draw on Friday. I don't get a break either as the week after that she gets immunization shots at her pediatrician appointment. At this point, I consider Gesina heroically well adjusted because if I had as many shots and syringes aimed at me, I'd be grouchy too! In the meantime, here's a pic I had put on Facebook. Enjoy her eyelashes...

My baby the pin cushion

Gesina needed a redraw of a blood test for the neurologist so I went to my local hospital to get that done... 4 needle pricks later and we still had no blood for the test. The blood clots before they can test it so I had to go back today (a week later) to try again for the third time. Thankfully we got it done but it's not easy holding your 4 month old down as she is used as a pin cushion! We are both exhausted tonight :-(

For last week's GI appointment, we've had a few tests, are getting a few more and upping more of her meds. I'm going to start worrying about my little girls liver if we keep pumping her with so many meds but rest assured, many of her blood tests are assessing liver function. One test Gesina had last week found her digestive structures are all in the right place. A more in depth test was done today that considers the function of these structures. In the meantime, we are upping her Prilosec and giving it to her 2 times a day (this means my poor baby gets meds via syringe 6 times a day). We are also sticking with the hypoallergenic formula but adding more oatmeal because she throws it up every night. Since adding more oatmeal... she still throws it up every night and sometime during the day too. She seems to like the more oatmeal (I call it her sludge) but she has lost an ounce of weight since two weeks ago. Sigh. On Thursday if there is no improvement to her irritability and/or vomiting, I switch to a more "hard core" hypoallergenic formula that you have to special order from a pharmacy. I had no idea having a child would be THIS expensive!

As for neurology, I haven't seen any signs of seizures since we changed her medication amounts. She doesn't rage as long as she did before though. The "raging" is my term, not a doctors. When Gesina goes into a rage, she seems mad. This is an observation that I, her babysitter, and even a neurology nurse have independently made. She screams in such a way that is nothing like sad, pain, or boredom... it sounds like RAGE! I just want the pain or rage or whatever makes it so she doesn't smile or interact much with me to go away so we can start to enjoy ourselves... that's all.

Baby Rage

So the nurse came on Monday declaring that Gesina's lungs just didn't sound right. After rushing to the pediatrician's office her lungs were declared just fine. BUT, something good did happen. We are trying to attack her fussiness with a GI doctor's appointment, finally! To start, we are on hypoallergenic formula and this week we are having an upper GI scan and meet with the GI doctor. Because of all the other changes going on (see below), I have no idea if the formula is helping but am going to buy some more today to give me more time to judge. I don't think it's helping but Adrian does so we shall see. I was told to try for 3 days and see if it helped but there was just too much going on to judge.

With her neurology appointment on Thursday, Gesina started having seizures again on Wednesday. Wednesday consisted of her body stiffening and eyes rolling back into her head off and on during the day and evening. The neurology appointment consisted of an EEG that ended up looking exactly like the ones she had in the NICU, abnormal with spikes. We have decreased the keppra to see if the baby rage goes away and increased the phenobarbital. I HOPE this doesn't increase or allow her seizures to breakthrough and I also worry that the phenobarbital will cause her to sleep more or may lead to developmental delays. BUT her baby rages seem to be happening about twice a day lasting around 20 to 40 minutes and I don't think a 16 week baby should be filled with so much rage. I'm also hoping we can get her acid reflux in check this week so she won't be so fussy all the time. If all these issues can get worked out maybe Gesina can relax, benefit from massage/OT/PT therapy and eventually, SMILE!!! And maybe, just maybe, we can play and learn together :-)

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.