Sleepy baby

When we first arrived Gesina was a little crabby so her feeding didn't go very well. Then she saw both the physical therapist AND the occupational therapist (a newborn has an occupation, go figure!) so she was too exhausted for her next feeding. In fact, she was so sleepy that she wouldn't even try to nurse or use the bottle. Her appointments with the therapists went well though. I was warned by the lactation specialist that there would be good and bad days so I should focus on long-term trends, not short-term events, so I'm not discouraged. 

I do think her general sleepiness today made me sleepy though! I need a day to rest but more than that, I need a day to catch up with errands. I have phone calls to make and my car's check engine light is on... Because I don't even have time to manage life, I have no idea how I'm going to manage going back to work next week. Gulp! 

Today $#it got real

Before I begin this story, I will start by saying that Gesina is fine. 

This morning when I walked into the NICU there were doctors everywhere. They were centered around the technology room; so much so that they were crowded around the doorway outside the room. When I went into pod B where we reside, I saw some of the nurses and lightheartedly mentioned that there is a party out there. One nurse, with a very serious face, mentioned that there was definitely not a party but she can't tell me what is going on. Based on the tone of the room and after watching the doctors slowly drift away from the technology room (one older doctor was patting the shoulder of a much younger doctor), I realized that a baby had died. I have no words for how this made me feel and still makes me feel. I have no idea how these professionals do this job but I was given a big dose of perspective today. My Gesina is alive, at the end of the day, that is all that matters. I'm already a lucky mom and everything else that Gesina accomplishes is just gravy.

As for Gesina today, she was a rock star. She worked with the speech therapist and drank 60 ml from her bottle and they were very pleased.

*** NON PARENT GROSS OUT ALERT *** CONTINUE AT YOUR OWN RISK ***

With the help of a lactation consultant Gesina tried a third way to eat, breastfeeding! I was worried that giving her a third option would really confuse her but she latched on and went to work. The lactation consultant was in awe :-) They weigh her before I feed her and after to see how much she drank. She drank 40 ml the first time and 45 ml the second time. She didn't fall into any of her odd bottle habits either (for example, she shakes her head from side to side without latching on to the bottle). Instead, she fed and then contentedly looked around in a sleepy manner. Now if we can get her to choose a method and finish her whole feeding that way, we'll be closer to getting that feeding tube out! In the meantime, all the work of breastfeeding put her into a nice calming sleep. We were all very proud of her today. In the meantime, I'm learning about feeding tubes just in case. I hope I won't need it but I'll do what it takes to get her home when she's ready, of course.

Staring at Papa

We did end up going to see Gesina today. She was awake while we were there for the first time in a few days. She just stared at Adrian. I can't help but wonder what she was thinking but she seemed content to stare into his eyes. Tomorrow I get to spend the whole day with her while Adrian goes to work. I'm looking forward to spending as much time with her as I can tomorrow; I just have to remember to stop and eat lunch while I'm there! Time seems to stand still for me in the NICU when I'm watching my little girl. I feel I could stay there forever and be content. Then I look up and realize I hadn't eaten in hours, the roads are treacherous and I should be heading home. The good news is the NICU nurses know this about me and tend to keep on me about such things. On our first day at the NICU Adrian asked our nurse why she chose this profession. She said she does it for the babies and the families. I get that now. The NICU nurses don't just take care of the babies; they train the moms on how to care for their babies and make sure the parents don't forget to take care of themselves. I really have to think of a way to thank them when this is all over with and I have Gesina home with me.  

Revolving door, part 2

So today the other two babies in Gesina's "pod" that had seizures were gone. They got to go home and while I'm a bit jealous, the nurse assured me that time spent in the NICU is not related to the babies outcomes and/or prognosis. So after giving myself a pep talk, I focused on the fact that Gesina will spend as much time in the NICU as she needs. Today she slept the whole time I was there but I got to hold her and she is doing really well on the bottle feedings. She is now taking about 55-60 ml of her 100 ml feedings by bottle. That is a big deal and we are all pretty excited.

Tomorrow the weather is supposed to be in the negative temps so I'm not sure I'll make it in to see her. Adrian is determined but I'm a bit worried as my check engine light is now on and his change the oil light has been on for a week or more. We need the weather to straighten up so we can take care of all these random life issues now that the holidays are over. Time to catch up on all that we've let go during the beginning of this journey so we can start to think about when Gesina will be home!

Sleepy girl

This morning they struggled to get blood from Gesina (it took 3 nurses and more than a few pin pricks) so by the time we got there, she was exhausted and slept the whole time. They are running tests to see if she has any metabolism problems. This the final domain to check as a cause of her stroke and seizures. We hope the tests all come back negative as there is no cure for any metabolism issues. I'm trying not to hold my breath on this but as Sagesmoon has noted, I'm a mom and that is just what we do ;-) Even in her sleep though, Gesina was adorable and I got to hold her. She spends a lot of time stretching and today, smiling. I know its still just gas that makes her smile but in another 2 weeks, they say her smiles will be genuine. I figure I got a sneak peek at what she looks like smiling and it made me happy.

Thanks again to everyone for supporting me through all this. Your comments have been known to make me smile and most importantly, make me feel like I'm not alone. It's nice to feel understood even if I've never even met some of you in person! I've realized that we are all connected, if not through face-to-face interaction than by being parents.  

Biding my time

The meeting was today and a lot of the information I already knew was reiterated. This is okay because the more I hear it, the more it sinks in. Most important to me at the moment is (1) what has happened with Gesina is really not my fault. Everyone tells me this but I seemed to not hear it so the more it's repeated the better. With the doctors I was able to ask more specific questions to put to rest some of the crazy theories I've dreamed up that some way or another make this all my fault. The doctors refuted those theories and maybe now I can stop blaming myself.

Another important piece of information is (2) being told her prognosis was "bad" on the first day at the NICU was a mistake and shouldn't have happened. The neurologist said only a neurologist is even close to making that determination AND she herself wouldn't even try to guess how Gesina is doing even a year from now. We don't know her prognosis and the range goes from in a wheel chair to completely fine. Based on the location of her two infarctions it is possible she may have issues in decision-making when she's older but we don't know this for sure and she could also be just fine. Because of the self-fulfilling prophecy research, I've decided she is going to be just fine and will treat her accordingly. Also, her developmental milestones will be followed rather closely by the hospital's specialists for the first 3 years and the doctors will be able to quickly direct us to the appropriate resources and therapies as needed. Because I will follow through on any and all doctors recommendations, I will again just assume she is going to be fine.

The final important point is (3) Gesina will be at the hospital at least a few more weeks. They are determined to give her more time to take the bottle for all her meals and give her EEGs a chance to get to the normal, non-seizure potentiality results. When she does go home, she will be on seizure meds for at least a year or two so they won't be messing with taking her off completely for a long while. They will have me take her home with a feeding tube IF that is what we have to do but in the meantime, Gesina is getting better with the bottle every day. The doctors are very pleased with her progress with the bottle. In fact, last night she took 60 ml of her 100 ml feeding from the bottle. And today when we were visiting with her, she was loudly sucking on her pacifier which she had never done before. We quickly swapped her bottle and pacifier and she happily drank from the bottle for a little while. So we'll see how that continues to go and in two weeks we'll see what they say.

Mentally, I understand that Gesina is getting better everyday. She is headed in the right direction on everything we've been doing and I'm very lucky. She is alive and thriving and I really couldn't ask for better. If I focus on the positives, and there are a lot of them, then life is good. For perspective, some women go through pregnancy and labor and end up with no baby. That didn't happen to me as Gesina is alive.

Emotionally, I'm a bit beat up. If I just keep moving forward everyday without putting too much thought into the situation, I'm emotionally pretty stable. A meeting like today, however, is all about focusing on the situation which forces me to slow down and process what is going on. This means lots of tears, fears, and self-pity. I'm in a very ambiguous situation and if I let my imagination run wild, well, nothing good can happen. I'm fine as long as I don't stop and think too much about it. So now I need to add some order to the chaos to manage the ambiguity of the next few weeks. I also have to keep my perspective and focus on the positive. So while I process my emotions and work on getting my head wrapped around all this, here's a picture of Gesina at 4 weeks. This is the artwork created by one of the nurses so Gesina's area is festive and is a celebration of her.

Snowed in at hospital

So we got snowed in at the hospital. I "secretly" loved it because I could see Gesina whenever I wanted to. I got to feed her and change her. I've even started to see patterns and habits in her behaviors which is fun. We got a family room at the hospital which is essentially a hospital room. Gesina seems to throw up more now that she is taking the bottle more. She is more like a newborn now that she eats, sleeps, and fills her diaper pretty consistently! I can't wait to take her home regardless :-)

Tomorrow morning is the family meeting with the doctors. Hopefully I'll know more about what is going on then and will keep you all posted. Until then, I need to make a list of any and all questions that I can dream up! Oh, and I almost forgot. Gesina is 4 weeks old today. I'll take a picture tomorrow and post it.