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 :-)
Remember what they said in the NICU, two steps forward and one step backward. We will get through this. Jackie you are doing a wonderful job with Gesina and I am so proud of you. You are a good mommy:) I miss Gesina and wish we lived closer. Love mom
ReplyDeleteTotally agree! I know it's hard on ya'll too, not being able to be there:(
DeleteThis comment has been removed by the author.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteWhomever told you that your baby has "rage" has led you astray. Babies of this age are incapable of anger or rage because they cannot think and do not have words. They cry as though they had rage, but it is because they are uncomfortable (they feel body pain or pain signals from their brain or they are hungry, etc). Gesina's screaming is not directed at you or anyone. She is not even trying to communicate, because she doesn't have that kind of thought process. She is just reacting to internal body feelings. So no matter how much this feels as though it were directed toward you, it is not personal or directed toward anyone or anything. She just feels bad. This is a tough, stressful time for you. Please take comfort that you have the best doctors and that you are doing your best for her. This too shall pass.
ReplyDeleteReplyDelete
I hadn't even thought about that Timothy, but you're absolutely right...they don't have the thought process. This is quite simply the only way they can communicate...Still, it makes it so hard on mama & daddy, especially if this is their first:( SO GLAD she has a good support system....:)
DeleteWOW Sweety, you've had a tough week!! I hope thee changes make a positive difference. I know you've got to be wrung out. WORRY is the thing that makes everything else so hard to deal with. Am I doin' it right...am I doin' it enough...Am I helping?...Am I making it harder....? No matter what, you're a mama, Adrian is a daddy, together, ya'll WILL get through this. I'm so glad the pediatrician was able to clarify her lungs. It's a scary scary thing to think their breathing is encumbered...I hope the RX changes will work. Maybe it will, we'll hope so. Keep hanging in there. No matter what, babies who have interaction always to better. So at the end of the day, she's still ahead of so very many...Hang tough girl!
ReplyDelete