Well yesterday we were soooo anxious to get Faith home- after today- we don't want her home! At least not like how she is right now. Today Faith gave us a big scare. She had a hypoxic episode- she turned blue and stopped breathing. Fortunately her doctor was in the room when it happened, and she was brought back quickly. A number of different things could have happened; We've notice Faith has been really 'juicy' lately and has had a lot of secretions. We've also noticed a huge weight gain (which we all know is not like Faith). This means she is retaining fluid, which is making it difficult for her to breathe. After the episode an x-ray was taken and showed that her lungs looked hazy and full of fluid. A blood gas also reveled that she is not burning CO2 very well, which once again could be because of fluid retention. So her diuretics were started again. All of this could have caused her to gag and choke on her feeding tube, and turn blue- or it she could have been choking on her own saliva. Whatever it was it scared us to death. It also put things into perspective for us- yesterday we were discussing the possibility of sending Faith home with a nasal gastric feeding tube ( what she has now). They rarely send babies home with these because it is a huge liability and risk. After witnessing what happened today we realize that we don't want her home on a NG tube-because if what had happened today happened at home Faith would not have made it. :( So now we realize WHY Faith is there and she does need more time. Yes, this means a lot more time. It is sad because we are missing the summer with her, and we will have to go back to work in the fall, but at least this way we will ensure that we will have MANY more summers together, because she is in the best place that can take care of her needs right now.
Well phew, we are exhausted and are going to go chill out for the evening.
Please continue to keep little Faith in your prayers.
Thank you!
Brian and Jen
6 comments:
Wow guys... sometimes I'm not sure what to say so I just don't say anything, but today I feel like I need to say something. I just wish I knew what exactly to say.
I can only imagine how exhausted you both must be... I hope you have noticed how amazing the sunsets have been the last couple of nights and I hope that you have been able to enjoy the amazing days that preceded the sunsets. God's glory has been in full splendor the last few days and it seems that when we become exhausted we tend to not notice those things...
I think about you guys all the time and I always get a huge smile on my face when I think about Faith with her yellow bow and her beautiful butterfly blanket...
Stay strong and get lots of rest.
If you need anyting at all please let me know.
Love you guys,
Marni
I wish I could send hugs thru the internet :o)>-<
You guys really need a break.. Please take time to enjoy each other and realize how much you have gone through and how strong you are. Have a good cry, laugh, love and sleep, knowing that Faith is were she needs to be. As always with life and its trials, God has us were he needs us to be to build our faith and love. I believe your love for God, each other and Faith shines through even though I will never know how hard it has been. Our prayers are still full speed ahead.
Love,
Paula
PS. to Marni- I am so touched by your witness and newly refound faith. God Bless you!
WOW, what a day for all of you! What a scare as well! I dont really know what to say but I am exhausted as well with all the ups and downs ..I CANT IMAGINE how y'all feel!
Boy oh Boy is Faith alucky gal to have such great parents. God is great that he PICKED you two to be parents to such a special child of God!
My sister is actually in Colorado today for the next few days so if a JULIE calls thats her. God has Faith exactly where she needs to be and liek I have said many times before, " He is spending a little extra time on her"
We love you and get some rest and relax a bit.....you need to healthy and strong for her when she is not!
God Bless
We love you guys!
Aunt Susan
XO XO XOXOXOOXOXOX HUGZ!
Just checking on my baby? I HOPE sheis having a better day than the other and I HOPE you guys are getting some rest.
Hang in there, I know this is so very difficult with all the ups and downs! Faith wouldnt be Faith if she didnt keep us all on our toes! ;)
Ill check on y'all later!
I love you
Aunt Susan
XOXOXOX
I'm on a quest to differentiate emotional regulation from faith and hope, and until I have new wisdom to bestow upon you guys I guess all I can say is that I love you and I'm excited to play with Faith (maybe take her shopping to the cute Highlands baby stores? But I think she might be too legit for those kind of trendy activities...)
Talk to you soon!!!
Love,
amy
Hi Faith, Jen and Brian: Your strength and persistence is inspirational! Grant and I check in regularly and we think about you often. We are so happy to see the photos - Faith is getting so big! Lauren is now 5.5mo old (2.5mo adjusted) and has been home for almost 3 mo. We still experience the 'two steps forward, one step back' life of parenting a preemie that you well know. Lauren's ROP has finally resolved, but she's now having feeding issues again and not gaining weight well. We completely understand your desire to have Faith home, but you are smart to know not to push before she's really ready. Although we love having our sweet girl home with us, it's very challenging not to have the comfort and security of 24-7 doctor and nurse care. We must do our best to give these little girls the best shot at life. Like you say, if we can get them going on a strong road now, we will have MANY future summers to enjoy as a family. Hugs and hope to you all.
Love,
the Nesbitts
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