Realizing I have no safety net

A week later Gesina is in the same ER and they can't help us. Gesina kept violently throwing up her 9am time-sensitive meds. When her caregiver called her pediatrician, they wouldn't help her as she is not the mother. When I got out of a meeting I called her neurologist and asked what to do, I was told by the nurse that Gesina MUST have her meds so if she wouldn't take them orally, we must go to the ER and have them given intravenously. This sense of urgency surprised me because in the NICU the heuristic was if she threw up her meds, you didn't redose as you wouldn't know the amount to redose. I had figured that a "missed" dose wouldn't be so traumatic but who am I to argue with the neurology nurse? So at 1pm, I told Trish, her caregiver, to take her to the ER so she can get her meds through an IV. When she gets there, have them call her neurologists office and talk to the on call doctor as this is what the nurse instructed me to do. I then race from work to the ER because they won't help Gesina if I'm not there because Trish isn't her mother.

In the ER, after retelling Gesina's long medical history to at least 3 separate medical personnel (and one was on the phone with my neurologists office), an ER nurse finally came in to try and find a vein for Gesina's IV at 4:30pm. Last week it took a neonatologist, NICU nurses, and an anesthesiologist using a light "saber" vein finder and an ultrasound to find veins to place her IV. That was three different "tries" and numerous sticks to the point where she has bruises on every place you would think to use a needle to find a vein. This poor ER nurse didn't have a chance and after searching her body, didn't seem confident at all. As we held her down, Gesina seemed to know what was coming and was screaming bloody murder. For the first time, I just couldn't take it. Every cell in my body was screaming no and I started to tear up. I stopped the nurse with the needle in his hand and asked him if he had found a vein, he said maybe. I said stop, I'll just give her her meds. Fifteen minutes later I'm holding my miserable child upright to ensure she doesn't throw up the meds I just gave her via syringe. It took another hour to get the discharge papers even though I fixed it and they didn't do anything! Oh, and I got to give her the 9pm dose in a mere four hours later.

I know everyone is just doing their jobs, but this whole experience taught me that I am 100% on my own with this. Neurology suggested I flavor her meds... yeah, I've been doing that. Every suggestion I've been doing or tried. I'm so annoyed that for the second week in a row I'm sent to the ER by neurology when the ER can't help me! I agreed to the ER option yesterday thinking the time-sensitivity of her meds was of utmost importance. In fact, when Trish arrived, the ER receptionist knew who Gesina was and that she was the "baby who wouldn't take her meds". This means neurology called and tried to give the ER a heads up. It is not ERs fault as they have a priority system but Gesina ended up taking her meds 8 hours late. If neurology had appreciated the function of the ER and that Gesina has difficult veins, then they could have calmly advised me to keep trying to give her her meds orally until she keeps them down. I would have done that but instead I'm that crazy mom rushing her child to the ER every week only to have them scratch their head as they wonder what they are supposed to do to help. Grrr. I'm beyond frustrated and worried, what if something happens to me? Who will give Gesina her meds twice a day, every day? Blah.

Status Quo

The neurologist on call believes the brain atrophy and the eye asymmetry are just residual effects from her stroke. He referred to it as similar to a scar from a cut. Nothing new is currently happening that we need to put a stop to. Next steps are to video record any eye asymmetry episodes, follow up with my neurologist and our new ophthalmologist, reschedule the NICU development clinic appointment and we will likely need to have a 2-day video recorded EEG to see if we can "catch" the seizure activity/eye issue in action. The only new think we've learned is that, according to the latest EEG, her seizure tendency/abnormal results are stronger in her left hemisphere than her right.

My take is that nothing got worse so that is a win. We also have had an eye doctor look at her and that is something I wanted to do anyway. I am now wrapping my mind around that fact that the brain atrophy doesn't mean anything new and that it's not the size of your brain but the quality of the connections that matter. Gesina's quality connections are best aided with no seizures and a rich mental environment. I think I and her early intervention therapists can do our best in providing the rich environment. The rest, as usual with Gesina's dramatic entrance into this world, will be revealed with time. Either way, the pediatrician here said Trish and I did the best thing for her by being proactive and seeking help. That's all we can do while we "wait and see" what Gesina's future holds. If I don't develop a deep reservoir of patience from my experiences with Gesina, then I'll be surprised!

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.