Well, I can't find the connector cord for the camera to the computer, so I'll just update a bit without pics (sorry!) about what it's like being home.
We got home on Monday afternoon, after 30 days of being in the NICU. We are so grateful for all the wonderful care Waverly received there, but are so thankful to be at home and not have to go back and forth and feel torn between the two sets of kids. It's been a whirlwind since being home, though, too. There is so much to figure out with her schedule of feeding, medicines, care, gear, appointments, phone calls, etc. Add to that caring for two older (but still very young) kiddos who's lives have been a bit more chaotic lately, and it's been crazy! We are slowly figuring out a routine. I am all about efficiency (doing things smarter, not harder!), so I am constantly walking around the house trying to figure out how to streamline things.
Waverly came home on a feeding pump. Every three hours during the day, she gets a bolus feed of 45 ml over an hour timespan. I pour the milk (breastmilk fortified with formula to add extra calories) into what looks like an IV bag, hook it up to the pump, plug it into her PEG (g-tube), and hit it to run. She also gets three different meds for reflux at various times throughout the day, so I administer those too through her g-tube. After she eats and after meds, we have to flush the g-tube with a syringe of water. We also have to care for her g-tube site with antibacterial ointment and change her dressing around it. Besides those extras comes just the normal care you do for a newborn. Sometimes she's quiet and sleepy and just sits in her bouncy or bassinet and sleeps, other times are more fussy times when we hold her, etc. She's still pretty sleepy, so we don't see much awake time. We've also taken her outside some, but it's been so hot that we haven't done that much.
She's also hooked up to an apnea/cardiac monitor to make sure her heart is beating and that she's breathing. So, she's pretty much always hooked up to something. Every once in a while we'll unhook her from the monitor if she's awake and we are holding her or carrying her from place to place, but for the most part we are on a short leash while holding her. It's very different not being able to walk around with your baby (at least without much trouble). That's been a difficult aspect for me, because I feel like I either leave her sitting/laying alone, or have to stay stationary to hold her. I don't mind sitting and holding her, it's just not that easy to do for very long with two other active kiddos in the mix! I'm sure we'll figure out how to make it work better.
She seems to sleep pretty well at night. She doesn't fuss much, unless she's got a dirty diaper. We've had some issues with her feeding pump at night (of course!), and then last night her monitor went off several times (I think because we bathed her and I put lotion on her). So we've had some interrupted sleep, but not as bad as it could be. We do have to wake up to add milk to her food bag at least once. She gets a continuous feed overnight of 21ml/hour for 10 hours. But the milk can only be out for 4 hours at a time, so we add milk to start her off, then add 4 hours worth right before we go to bed, then set an alarm to wake up after 4 hours to add more milk to get through to the morning.
Sometimes we are doing well and feel like we are figuring things out. Other times it's hard, as it's all so very different. We are learning as we go, and then there is the emotional aspect. Nobody dreams of caring for a newborn by pouring milk into a bag or not being able to walk around while holding them and chasing the other kids. It makes me sad sometimes to think of what we're "missing out on" this time around. But I know that there will be much more that we will gain from all of this too. And I have to remind myself of that, because I know that it may be years before we reap that end of it (if we even get to see much of that part at all). We are still receiving so much help and support from friends and family, and I can't imagine what I'd do without that. We are SO so thankful for the outpouring of love from many. Thanks for following along on our sweet girl's journey!
Cristen,
ReplyDeleteI just want to say, I love you so much! And I am proud of you. And this is HARD! Yet, you still try to look at the bright side, to realize that you will "gain" from this experience, and not focus entirely on what you are missing. Just to let you know, though, that your feelings, your sadness over what you are missing, over the hardships..., it is OK, if that is how you are feeling at this time. It is normal. You are just beginning, and this is just so much to deal with. Hoping you don't feel guilty, or like you "shouldn't" be feeling the way you might be feeling. It really is OK to have the negative, painful feelings. This isn't how you would have written the story.
But knowing that God has a meaning for everything, and a plan for everyone; that he will work all things to the good of those who love Him, who are called according to His purposes, that alone helps us to bathe our sorrows in hope, to know we are never alone, and that God is in control, and is aware of our sufferings, and will make all things right. You are very strong in your faith. I have to say, that Waverly has in her very, very short life, already caused me to struggle with my God, and to realize that Christ's sacrifice is big enough, to handle even that sin. And because of sweet little Waverly, and the hard circumstances of her life, I have grown. And been blessed. We will no doubt, have so much more joy in our lives and our hearts, because of this dear little one. She is precious in God's sight, and in our hearts. You are not alone in this journey, and the hands and feet of Christ, His church, will be there for you and Johnny, and your children, and they will be blessed by serving God, through serving your family. Loving you more with each passing day, Your Mom
I remember Oliver being hooked up to the cardiac, apnea machines in the NICU and they were sooooooo annoying. They kept falling off and you can't move anywhere. And that was just for a week. I can't imagine doing that at home/long term as well. You're a strong woman and we are constantly praying for you guys.
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