Well, as hard as this is to do I am going to try to go back and document the events that have occurred over the last ten days. Some will be cut and pasted from emails I've sent, and some will be from a letter my husband wrote to a friend. Either way, in the end we have a beautiful baby girl, and all the pain passes when I look at her little face.
At the end of this I will add the most current news and updates.
Here I go:
(I'm kind of a mess right now. Delivery was hard, and baby has complications. She wasn't breathing, she had seizures, and we just found she has 3 spots on her brain showing she had three strokes. She is in the NICU. I am very swollen and beat up, not to mention an emotional mess. Husband is keeping a close eye on me, but I need to be off my feet and he isn't allowing me to do much. Next week I hope to feel better and as painful as it was/is I will journal the whole thing. Thank you for your thoughts. She appears to get a little better each day. She was born 8/29/07 @2:04pm, 7lbs. 2oz, 21inches long, big baby for little me. I love her so much!!!)
(The doctors are talking to us, but at the same time they aren't saying much in the sense of answering the questions that I have. Again, most of my questions there are no answers at this time.
I want to know when she can come home, and what this means for her future. And they can't answer that, it is day by day.
She will have delays. They need to get her seizure medicine regulated so she is stable, and not completely out of it at the same time. We need her to feed from a bottle. But, they know it is best for her to be with us at home. So, it is an option, if everything else is stablized, to send her home with a feeding tube in her stomach. Not what I want, but I do want her at home. She has some muscle issues that are related to the brain trama. So they might put some splints on her hands and there are some exercises we can do to work with her.
It is just hard, because when we get there and want to work with her muscles she is sleeping, and we're not supposed to disturb her, but there are such short times she is awake to work on these things.
It feels strange to have other people tell you what you can and can't do with your own child.
The whole situation is surreal.
She did better today and woke up by herself right before her scheduled feeding time. She had her eyes opened the most I have ever seen today. She does have a tendency to roll them up and not focus on what is in front of her, but it is getting better. I worked with her on the pacifier while she ate threw the tube in her nose. She doesn't get it and wants to bite it with her gums.
Plus, right around feeding time they give her her medicine, so I was sad because I knew she was going to be out of it and asleep really soon. But, even with a full stomach she really tried to fight it and stay awake. They gave her another EEG to check on seizure activity and they'll compare it to the one she had earlier on. She had a very busy day today.
Husband is back to work so he is going to the 7am and I get there for the 10 and stay for the 1pm where husband tries to get there too. There is just sooooo much time at night when we are home without her. Night time is the hard time. Even though a normal baby at home sleeps a lot, they are there and you know they are there and you can go look at them and watch them sleep and know you are right there if they wake up. It is hard at home wondering what is going on with her. Is she sleeping, awake, or what. But it isn't healthy to camp out there in the NICU.)
(She didn't take a bottle, we really need to work with her. I try to think of the positive, but it is hard when you miss your baby so much and she is not at home with you.
We try to make at least 3 of her feedings a day, but it is hard. Her Seizure medicine is pretty strong, so when we are there she is sleeppy most the time.
All I want is to hear my baby cry and have her open her eyes and take a bottle. I hope god hears my prayers.)
Letter Husband Wrote:
It has been a long couple of days. Erika went in to be induced at 11:00 a.m. on Tuesday August 28th, and did not give birth until 2:04 p.m. on August 29th. She pushed off and on for 4 hours. When she gave birth the doctor had to unwrap the umbilical cord from the baby’s neck twice. In addition, one of the baby’s hands was delivered at the same time as the head. The doctor said this is what caused the long pushing stage. Once the whole baby was delivered, the doctor placed the baby on Erika’s belly. The doctor and the nurses shook the baby several times while the baby was on Erika’s belly (to get the baby to take her first breath). The baby did not respond. The baby was taken away within seconds of being placed on Erika’s belly. Within a couple more seconds we had 10 to 15 different medical staff working on our daughter. After that it becomes a blur.
Our daughter left the delivery room for the NICU about 10 minutes later when she was stable for transport. The NICU doctor told us that she wasn’t able to breathe on her own and they were assisting her with that, and she was going to be moved over to NICU. About an hour later I was able to see my daughter in NICU. Once again the doctor said that she was not able to breathe on her own, and they had machines assisting her with that. In addition, the doctor said that she had aspirated some meconium, and they wanted to monitor her over the next several days. While I was there they removed the ventilation tube to see if she would breathe on her own. She didn’t and they put the tube back in. I went back to be with Erika during this time. Erika was finally released to go to her room and see the baby 4 hours later. Erika was in a wheel chair and couldn’t really see the baby well from her position. The nurses told us that she was doing better because they were not fully breathing for her (only applying pressure - whatever that meant) and she was breathing the same air that every one else breathes. This news made us feel better.
As of earlier today the tube came out once again, but this time to different results. She is breathing on her own. However, the doctor told us about a new concern. During labor the baby sustained some head trauma and there was some swelling. Right now she is going for MRI to learn more about the swelling. She will be released from NICU Saturday at the earliest and possible even later than that. I will let you know more at a later time.
Katherine Alexis Marie
First Middle
Weight: 7lbs 2oz
Height: 21 in
(I called as I do every night to see how she is doing before bed and the nurse told me she just finished her 10pm bottle. I said, you mean she ate threw the tube. But the nurse said, NO! I mean bottle. I was shocked and asked, are you sure you're talking about Katherine Alexis Marie? Yep! I was running around the house so excited.
The next day she bottle ate all day too. I helped feed her a bottle and burp her. It is very hard to feed her because she is slepping a lot, and they insist on feeding her on her schedule no materr what: 1am 4 am 7am 10am 1pm 4pm 7pm 10pm. Plus, they keep uping her food, so it is hard to get her to take it all. But, they really have faith that she can do it, because after a 2 hour NICU class we went to say goodnight to her at 11pm and they had taken the tube out her nose. Before it was still in there, so it was kind of like a safety net if the bottle didn't work, but they got rid of it. I am so happy, but scared too.)
(Her latest EEG showed reduced, to no seizure activity. Just spots of potential seizure activity. The terminology is a little iffy to me, but less is good and the doctors are pleased, so I am too. To their thinking the meds are working and are at the correct dose, the swelling has gone down on her head so the blood is aborbing naturally, and she is more alert and showing more muscle movement. They don't believe there has been any seizure activity! Yay! The nurses are all amazed and calling her their miracle baby. I am so proud of her and all her strength and hard work. I like to think she wants to come home as much as husband and I want her home.)
(When I walked into the NICU today a nurse said she is going home. I almost feel over. I was by myself and husband was at work. I was speechless! But, by the end of the day the nurse was like: oh, I thought she was nippling the bottle a little better than that, she won't be coming home today...but soon. I was happy, confused, and sad all rolled into one. That night husband and I discussed how we felt about her coming home. Our worries and fears, and what we will do to find a balance of the NICU schedule, us as new parents, and things we want to change. I felt confident that over the next couple days I was going to really learn the best ways to get her to take the bottle and give her her meds while she is in the NICU, since they made it sound like she is coming home soon. I also decided that first thing tomorrow I was going to ask the doctor, not a nurse, what is the procedure for her to go home? Who decides it? What decides it? I love the nurses in the NICU, but each one has their own little idea, twist, and advice. I don't want to get my hopes up, or diminished if one says something to me that isn't true.)
TODAY
I walked into the NICU today with a plan, confidence, and ready to take charge. But as soon as I opened the door that all fell apart when I saw not a single nurse that I knew.
I guess everyone I knew had the day off. And I know at least 6 different nurses that have worked with Kami over the last 9 days. [Wow, 9 days, it seems like so much more than that.] Any way, I have some guy assigned to me and he is kind of gruff. He asks if I am going to start changing her diaper and take her temp. (Which you do before every feeding.) I say, NO, I want to see if she'll wake up on her own when she is hungry, because that is what we have been trying to do the last couple days and it has worked. Luckily he backed off. I saw the doctor walking towards me and I thought, perfect, just the person I wanted to talk to. I asked her my question about procedures and the nurses comments and how/who really makes these decisions? Well, to my surprise she said she was coming over to tell me that Kami is going home TODAY!!! My emotions went haywire! I asked, really? Are you just saying that because I asked, or were you really planning on sending her home today? She said it was already planned. Again I asked who makes this decision? And she said the doctors look over her charts, daily logs, test results, and they decide. Which makes sense because yesterday was Thursday and that is when they close for an extra hour to do evaluationn rounds. Sooooo, because it was no notice we are taking her home Saturday, tomorrow. I start to do alright with it, but then my mom starts freaking me out. Husband starts to do alright with it, but then he starts worrying a little too. In the end, we are new parents, worrying comes with the territory no matter what.
So, I was very determined today to give her her meds myself and do a good job with the bottle feeding. The guy was slow with the meds and she was awake and alert, so I gave her her bottle. She was doing great! But then the guy came with her meds and made me stop feeding her to give her it. I took the supplies from him, because I really wanted to do it myself, but then after I got the open nipple in her mouth and went to put the syringe in with the medicine he got his hands in and took it from me and didn't let me do it. She did not react well to the meds and closed her eyes, like she was instantly put to sleep by the meds and started pushing her head back hard! I freaked out, thinking what is she doing, and I am going to be alone with her soon with no one to reassure me that she is okay when she does things like this. No machines telling me that even though she is doing this her oxygen and heart rate are fine. We tried to give her the bottle back after this, but she wouldn't take it. The doctors say that the meds don't work like that, they can't instantly put her to sleep she is just maybe reacting to the taste and didn't like it. So I put her on my shoulder for awhile and we cuddled. After that I tried to give her more food and she almost finished the bottle. She drank 50ml of the 75ml they want her to eat. But, the experience was a little unnerving knowing she is coming home tomorrow and not two feedings in a row didn't go well; husband said at the 7am she only at 30ml of the 75ml. I'm just kind of frustrated and don't want her to go hungry when she comes home.......
Well, that is where we stand.
I know this is long, but it was long over due. But now I feel more comfortable jumping in and joining in the other discussions now that I have given an update on the situation.
I thank you all for your prayers and thoughts! I truly believe that they are what helped in the quick progress and strength that little Kami has shown.
Love,
Erika
