Olivia is doing well, although she continues to struggle with taking all of her bottles. She took the entire 45 ccs for me today at noon, however. Her blood tests today showed that her GGT (liver enzyme) was still elevated and that her alk-phos level is rising (that is what is associated with rickets.) It’s frustrating because her care has been transferred over to her pediatrician and we don’t get the chance to talk to him daily like we did her neonatologist. She did have her nasal cannula off last night for 2 ½ hours and today for a few hours as well. I went to take a picture of her without it on and my camera battery was low. That’s just how my day seemed to go today. Olivia is doing good. . .it’s her mother that isn’t. I guess the past 3 months have started weighing very heavily on me today. So, I apologize in advance for my ranting and ravings. It’s like we’re so close to the end of all of this, but yet we’re still not there. I feel like everyone judges us for the things we do and the decisions that we make. We’re either at the hospital too much or we’re there too little. . .we shouldn’t try bottling at every feeding or we should be there every time. Spending 24 hours a day at the hospital with her sounds like a great act of love, but if I don’t take care of myself. . .I can’t take care of her. Literally, if I get sick I can’t go to the hospital to take care of her. When I’m at the hospital with her I don’t eat, I don’t drink anything and sometimes I don’t even pump. This is a marathon and not a sprint. I’m just trying to do the very best that I can. Ryan and I have made the decision not to allow cuddlers, who are volunteers that come in to hold your baby. This is after a cuddler already came in to hold her. Don’t get me wrong. . .I think volunteer cuddling is a wonderful thing for babies whose parents aren’t in town or are fussy and need the extra attention. We, however, hold Olivia for hours every single day and she is not a fussy baby. We haven’t even let Olivia’s grandparents hold her yet for fear of contracting an illness. I mean, the more people she comes in contact with. . .the greater the risk. How do you think our parents felt to know someone else held her before them? Plus, we have tons of family and friends who would stop everything at the drop of a hat to be able to cuddle with Olivia. Some people act like our decision is one of selfishness when it isn’t at all. There are tons of babies that need the extra attention that nurses don’t have the time to provide. Ryan and I are just trying to do the very best that we can for Olivia. After three months of this, my mind and my body are exhausted.
Seeing Olivia’s precious face always makes my day better. My friend Kelley got Olivia all kinds of wonderful things including a book called ‘You Are My Miracle’ by Maryann Cusimano Love. It’s a wonderful book and I wonder if I’ll ever be able to read through it without tearing up. Ryan’s bosses and coworkers are in town from Jacksonville, FL and they brought presents for Olivia. She got a Giraffe Crossing sign from the Flynns and a book by Shel Silverstein called ‘Giraffe and a Half’ from the Morales family. Thank you very much. I know that they were meant for Olivia, but they brightened my day a bit as well. Thank you everyone for your support these last 3 months. Thank you for allowing me to complain a bit tonight. I know that people probably aren’t judging us as harshly as it seems. . .most of it is probably my mood today. I want Olivia home and I miss Logan and I’m just really tired.
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Park City Utah
2 years ago
6 comments:
I think that the days near the end are almost the worst. You just want your baby home so bad...but she just isn't quite ready. It is soooo normal to feel frustrated and down at this stage.
As for the cuddlers, I say good for you! We never let anyone else hold our daughter either. It is your choice and do NOT feel bad about it! It is part of the reason that Olivia is doing so well and hasn't gotten sick! She gets plenty of stimulation from your visits, and should be resting quietly when you're not there to preserve her stamina for bottle feedings.
I've found that trying to nipple all of the feedings just serves to exhaust most micropreemies. I've found much better success (and our NICU has policies to this effect) to space the nipple attempts out over the day...then you'll get more success. So nipple, gav, gav, nipple, gav, gav etc. Then once she is successfully eating those bottles go to every-other and so on.
And do remember to continue to take care of yourself. Oliva needs you healthy more than anything right now. Hang in there...the end is in sight!
I could have written this post myself. I think we are going through the same thing right now with our kiddos. Now that they are feeding it is getting harder and harder! I have to find time to feed three babies...it is all becoming to much to handle. I was there from noon to 8:30 tonight feeding babies every three hours. Breastfeeding all three is a lot of work. The boys are doing well at breastfeeding so they made the comment to move it up to twice a day! SERIOUS!!! I don't think so. I am going to try the bottles again tomorrow to see how they do. Then Brent can help instead of me trying to do it all. I didn't get to eat lunch today and I didn't eat dinner until 9:00 p.m. :) I didn't have a drink of any fluids the entire time I was at the hospital. I feel like I need to be there but I am exhausted. As far as the cuddlers I don't think I would be comfortable with them with the boys right now either. They are still so small. I wish we were in a satellite room so we could still see each other. I feel like we are so close but still so far away. Hang in there...I know we can make it through this!
Jodi, please stop beating yourself up - you are doing an excellent job! Be it too long or too short; too much or not enough; you & Ryan are the ones to make your decisions and everybody else should let you make them. You are NOT being selfish in any way. After all, if you were being selfish, you wouldn't take the time to give us updates and share pictures with us. Go right ahead and protect that precious Olivia. She gets more beautiful with each new set of pictures. My heart just feels like it is going to blow up each time we get updates and pictures. She has definitely been "medicine" for my heart. Keep up the GOOD work - you're doing a great job! "Hang In There" - M.A.
Awww! Jodi, please don't feel bad! You are just doing what's best for your little girl! And nobody should make you feel bad about caring for someone.
I understand your anticipation for Olivia's homecoming, but don't get too worked up if something doesn't always go the way you want it. Because in the end, it will.
I hope you don't get too stressed out, in thinking that you aren't being the best mom you can be. Because in my eyes, and I'm sure in the eyes of others, you are.
Thank you for sharing your 'little treasure' with me and tons of other people.
Love you lots!
Stay Strong,
Shea
You and youre husband are doing just fine. My husband and I went through the exact same emotions and feelings because being in the hospital is HARD. You've been running on stress for months now. The one thing my husband and I did before Emery came home was to take a little time out for us each week. We were out of town from the NICU, so we would make a point when we spent the weekends with him to sleep in, go out to a nice dinner, go see a movie. We needed time to rest and regroup because the stress was too much. Not to mention, you have the added stress of losing a child while focusing on the one who is in the hospital. You can forgive yourself of every and all behavior right now. You are not being selfish. No one has any right ever to tell a parent of a sick baby how to behave. You do what you need to do.
And you know what? We had cuddlers come in every day because Emery needed the extra attention, and I felt guilty because it wasn't me holding him. Welcome to Mommy guilt lol!
I think you are doing great...Being in the nicu is by far the hardest thing I have ever been through (aside from losing my 1st ds Cameron) You are right, you have to take care of you, I let myself go downhill when Kellar was in the nicu..I was 3 hrs away from home, I chose to stay in Dallas w/him while my husband and family had to go back home and continue w/day to day living.I didn't sleep, eat, my milk dried up b/c of the stress of wanting to be there every second and just being alone is such a scary situation..You have to keep yourself up for when she gets to come home, the end is where you are so anxious and everyday seems more and more like an eternity..Hugs to you mommy!!!!
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