The EEG came back the same as the previous EEG a week ago. This means she has no active seizures but she shows signs of abnormal brain activity that represents potential for having seizures. The doctor said this is normal and a good thing. The EEG didn't get worse, which would have led to increasing her meds. The fact that it didn't get better isn't a horrible sign as it takes time for the body/brain to adjust to the seizure meds and the doctor is not surprised that she needs more time. So, because her EEG is the same, her meds remain the same as well.
The nurses have all agreed that Gesina has shown improvement in her sensitivity from last week to this week. For example, one nurse said that just last week she felt that anything she did to Gesina was hurting her. This week though, Gesina isn't overly sensitive to stimuli. In fact, when we try to wake her up to get her to use the bottle, it doesn't matter what we do to her, she isn't interested in waking up and she's not mad at us for trying either. When she does cry, it's an "I'm annoyed" short wail and not the "You're hurting me and I'm scared" inconsolable cry she would use on the nurses last week. So this is good. She is also making progress on using the bottle. I'm really hoping we get the bottle situation figured out as the idea of putting her feeding tube in doesn't make me particularly excited. I'll do whatever I have to to get her home though.
In other news, grandma got to hold her today with minimal drama! Her grandpa got to see her eyes, her cry, and even a smile (yeah, not really a smile but we can believe what we want). Adrian and I have a family meeting on the books for Friday morning so hopefully we'll have more of a sense of what happened, what is happening now, and what the near future holds. We are planning on meeting with the neurologist, hematologist, and attending physician. I'm looking forward to seeing her scans, etc. with an expert so I can begin to wrap my head around what my baby has gone through. I'm just hoping that education is power in this situation!
Tuesday, December 31, 2013
Monday, December 30, 2013
No news yet
Still waiting for results of the EEG so I'll post those tomorrow. In the meantime Gesina had a long day of giving the nurses a hard time and recovering from getting the EEG goo washed out of her hair. She saw the speech therapist and has drank 30 ml from her bottle a few times now. The speech therapist is pleased with her progress so far. Because of her long and busy morning (EEG, hair washed to get EEG goo out, pulled her feeding tube out again, speech therapy), she slept pretty much the whole time we were there. Grandma and grandpa are hoping to catch her awake tomorrow. I got to hold her so I had a good day.
Sunday, December 29, 2013
Lies, all lies
Adrian and I took shifts to see Gesina today. He took the morning shift and I took the afternoon shift. He CLAIMS Gesina was crabby and inconsolable in the morning; so much so that it took two nurses to calm her down at one point. I think he's making it all up because with me, she was a sweetheart. Sure, she may wail once or twice but I could still talk her out of it. He often points out that the only thing that calms her down is my voice and I think he may be right. I may make a tape of me reading a book to her so the nurses can play the tape when she needs to calm down.
I got to help give her a bath today and boy does she dislike baths! I think she gets cold (remember the shivering) so that may have something to do with it. She also ripped her feeding tube out of her nose today. This is a theme with her as she often has her hands near her face. The nurse declared that I will likely be taking her home with a feeding tube so she showed me how to put one in. Gesina is not fond of that process but I'll do whatever it takes to get her home! I like that the nurses have mentioned me taking Gesina home but I try not to get too excited. Tomorrow's EEG will hopefully give us some answers about what needs to be done next.
This morning a baby went home and while the nurses were changing the sheets on the bed, a call came in that another baby was being admitted. The cycle never ends. The new baby is another full term baby with seizures. I guess this means that these doctors and nurses have a lot of experience with babies that have seizures; though I hate to see more babies and parents going through what we are all going through.
In addition to getting her EEG tomorrow, Gesina gets to see her Grandma and Grandpa. I'll be glad to have them there as we learn what her test says and what it means for the future. Hopefully they get the EEG done early and get us results soon. I guess I have to continue to work on being patient!
I got to help give her a bath today and boy does she dislike baths! I think she gets cold (remember the shivering) so that may have something to do with it. She also ripped her feeding tube out of her nose today. This is a theme with her as she often has her hands near her face. The nurse declared that I will likely be taking her home with a feeding tube so she showed me how to put one in. Gesina is not fond of that process but I'll do whatever it takes to get her home! I like that the nurses have mentioned me taking Gesina home but I try not to get too excited. Tomorrow's EEG will hopefully give us some answers about what needs to be done next.
This morning a baby went home and while the nurses were changing the sheets on the bed, a call came in that another baby was being admitted. The cycle never ends. The new baby is another full term baby with seizures. I guess this means that these doctors and nurses have a lot of experience with babies that have seizures; though I hate to see more babies and parents going through what we are all going through.
In addition to getting her EEG tomorrow, Gesina gets to see her Grandma and Grandpa. I'll be glad to have them there as we learn what her test says and what it means for the future. Hopefully they get the EEG done early and get us results soon. I guess I have to continue to work on being patient!
Saturday, December 28, 2013
Learning
Gesina took 25-30 ml from the bottle at least 3 times in the last 24 hours. She's learning! The nurses have told me a few times that Gesina is very sensitive to stimuli. She'll cry from diaper changes, getting her temperature taken, sudden noises, being picked up, etc. The nurse today said this is common in "neuro" newborns. This makes me a little nervous about when I get her home. Not only will I have to learn how to take care of a newborn, but I'll have to learn how to take care of a NICU "neuro" newborn. I keep trying to remind myself that I have to learn to take care of Gesina and not worry so much about what's normal and what is more related to her seizures. I guess I'm a little scared and either way, I have a lot to learn too.
Today I did get to introduce myself to the other mom in the NICU whose baby has seizures. I was in the breast pump room which has two curtained areas. I heard sniffling from the other curtained area and once I realized who it was, I decided I had to say something. She had just given birth 2 days ago and seemed to really appreciate my story. Her baby only needed 2 meds to calm the seizures so I think the fact that Gesina needed 4 meds and is stable now was good for her to hear. She also asked me a lot of questions about recovering from childbirth. It felt good to share information that I knew would make her feel more confident and less anxious. I also realized that I'm a bit of a veteran now myself. Not a club I asked to join but glad I could calm the mind of someone going through what I've started going through just 3+ weeks ago.
Today I did get to introduce myself to the other mom in the NICU whose baby has seizures. I was in the breast pump room which has two curtained areas. I heard sniffling from the other curtained area and once I realized who it was, I decided I had to say something. She had just given birth 2 days ago and seemed to really appreciate my story. Her baby only needed 2 meds to calm the seizures so I think the fact that Gesina needed 4 meds and is stable now was good for her to hear. She also asked me a lot of questions about recovering from childbirth. It felt good to share information that I knew would make her feel more confident and less anxious. I also realized that I'm a bit of a veteran now myself. Not a club I asked to join but glad I could calm the mind of someone going through what I've started going through just 3+ weeks ago.
Friday, December 27, 2013
Calm day
Adrian decided I needed a change of scenery today so I spent a lot of today with friends. I had a good day and it was a good idea but I also spent as much time with Gesina as I usually do :-) She had a busy day fussing at me and the nurses! I'm told she is acting more like a newborn which scares me a bit but also excites me.
She is still practicing using a bottle but it is slow going. She drank 5 ml with the speech therapist, 1 ml with a nurse, and 10 ml with me. No one else can match the patience of her momma!! I tried to distract her, encourage her, and model the right behavior. My guess is I put more time and effort into it than the therapist but I MIGHT be biased :-D A new baby was admitted today with seizures and the parents looked as weepy and scared as I did on day one of the NICU. I plan on keeping an eye on them and helping if I can. A few babies have gone home so it's fun to keep up on who is coming and going. You start to root for them and their parents as you watch them get used to life in the NICU. It's an amazing group of people who chose to work with newborns and their families. I couldn't be more thankful for their help and support through all this.
She is still practicing using a bottle but it is slow going. She drank 5 ml with the speech therapist, 1 ml with a nurse, and 10 ml with me. No one else can match the patience of her momma!! I tried to distract her, encourage her, and model the right behavior. My guess is I put more time and effort into it than the therapist but I MIGHT be biased :-D A new baby was admitted today with seizures and the parents looked as weepy and scared as I did on day one of the NICU. I plan on keeping an eye on them and helping if I can. A few babies have gone home so it's fun to keep up on who is coming and going. You start to root for them and their parents as you watch them get used to life in the NICU. It's an amazing group of people who chose to work with newborns and their families. I couldn't be more thankful for their help and support through all this.
Thursday, December 26, 2013
3 weeks old
Today was much better so thank you all for your words of encouragement. There were much needed and much appreciated.
Gesina had a busy day today. She had a hearing test (she passed!!), a visit with the physical therapist, and a visit with the speech therapist (still working on getting that bottle figured out). In the meantime, she snuggled with her momma for 2 hours!! When she was awake, she would look around and sometimes make the sour face. She could be talked out of the sour face though. I did get a little choked up when I had to leave for the night but I'm pretty sure these are good tears. Progress is being made, my baby girl has had a lot of good days awake and she is headed in the right direction. Saying anything positive still makes me a bit superstitious but I'm trying to fight that silly urge. She is doing well and that makes me happy. So I'm going to work on enjoying the happy!
For her treatment, she is going to get an EEG on Monday to determine what else they are going to do with her 2 remaining meds. That seems like a long time from now but I really do like this "taking it slow" approach to dealing with her seizure meds. The other baby from the same hospital who also had seizures went home today. I got his mom's contact information so we can keep in touch.
Courtesy of Amy, here is a photo that represents a milestone for Gesina... the day when the nurses have finally given up on her hair! We fondly refer to all messy, spiky hair as Gesina hair :-) I figure it will grow and the weight of it will pull it down. One nurse likes to style it into a mohawk which is a very amusing solution to the problem of "Gesina hair."
Gesina had a busy day today. She had a hearing test (she passed!!), a visit with the physical therapist, and a visit with the speech therapist (still working on getting that bottle figured out). In the meantime, she snuggled with her momma for 2 hours!! When she was awake, she would look around and sometimes make the sour face. She could be talked out of the sour face though. I did get a little choked up when I had to leave for the night but I'm pretty sure these are good tears. Progress is being made, my baby girl has had a lot of good days awake and she is headed in the right direction. Saying anything positive still makes me a bit superstitious but I'm trying to fight that silly urge. She is doing well and that makes me happy. So I'm going to work on enjoying the happy!
For her treatment, she is going to get an EEG on Monday to determine what else they are going to do with her 2 remaining meds. That seems like a long time from now but I really do like this "taking it slow" approach to dealing with her seizure meds. The other baby from the same hospital who also had seizures went home today. I got his mom's contact information so we can keep in touch.
Courtesy of Amy, here is a photo that represents a milestone for Gesina... the day when the nurses have finally given up on her hair! We fondly refer to all messy, spiky hair as Gesina hair :-) I figure it will grow and the weight of it will pull it down. One nurse likes to style it into a mohawk which is a very amusing solution to the problem of "Gesina hair."
Wednesday, December 25, 2013
Gesina's first Christmas
Today had its challenging moments for me. All the hoopla of Christmas, with the "Merry" expectations that every moment is supposed to be special made it very easy for me to feel sorry for myself. Any other day I have been able to see clearly and am grateful for all the progress that Gesina has made. But because of the unrealistic expectations that society has surrounding Christmas, that today is supposed to be Merry, you are somehow broken if you are not filled with the Christmas spirit, if you are not surrounded by family then you are "doing it wrong," well this has really gotten me down and caused me to be emotional today. I had such an overwhelming urge to take Gesina home today. I just wanted to grab her and run to the car. It's so unnatural to have a baby and then leave her with someone else, night after night. But here I go again, feeling sorry for myself so the pity party is over. Now back to being grateful for all the good things going on with Gesina.
Gesina had another stable day. She slept most of the time and because she was in fleece Christmas footed pajamas, she didn't shiver! She didn't spend all of her time awake crying but she would make the sour face often. I have to teach that girl how to smile so she realizes she has more than one option for facial expressions! We worked on trying the bottle again today but she gets bored with it. Hopefully the speech therapist shares some tricks to encourage her to use the bottle. The nurse says it takes time so I'll work on not obsessing about it. No change to her meds today. I haven't talked to the doctors in a few days so hopefully I'll be able to get some updates on our plans for her meds tomorrow.
And finally, the ridiculously amazing people surrounding the NICU gave Gesina presents. She got wrapped toys, clothes, and books. I have to remind myself that these caring, supportive, and giving people are really what Christmas is supposed to be about. Not the pressure and feeling that the universe owes you an amazing day and if it's not amazing, then the universe doesn't like you. Everyone has good and bad days, even on Christmas; it'll all be okay and next year, hopefully I'll get a good one. If not then maybe the year after. Plus, Adrian reminded me that in the future, I'll have Christmas as a special day, just like everyone else BUT I'll also have the date that Gesina came home. That will be a special date just for us.
Gesina had another stable day. She slept most of the time and because she was in fleece Christmas footed pajamas, she didn't shiver! She didn't spend all of her time awake crying but she would make the sour face often. I have to teach that girl how to smile so she realizes she has more than one option for facial expressions! We worked on trying the bottle again today but she gets bored with it. Hopefully the speech therapist shares some tricks to encourage her to use the bottle. The nurse says it takes time so I'll work on not obsessing about it. No change to her meds today. I haven't talked to the doctors in a few days so hopefully I'll be able to get some updates on our plans for her meds tomorrow.
And finally, the ridiculously amazing people surrounding the NICU gave Gesina presents. She got wrapped toys, clothes, and books. I have to remind myself that these caring, supportive, and giving people are really what Christmas is supposed to be about. Not the pressure and feeling that the universe owes you an amazing day and if it's not amazing, then the universe doesn't like you. Everyone has good and bad days, even on Christmas; it'll all be okay and next year, hopefully I'll get a good one. If not then maybe the year after. Plus, Adrian reminded me that in the future, I'll have Christmas as a special day, just like everyone else BUT I'll also have the date that Gesina came home. That will be a special date just for us.
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