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7.27.2016

4 Weeks and Home

I've had so much I've wanted to write about and never the time to do it, and now I have a few moments and my mind is virtually blank. 

So, a few things: Eden is 4 weeks old! How did that happen?! I've learned the feeding tube and have had to troubleshoot a few times and I feel pretty good about the whole thing. In fact, hooking her up to the feeding tube is one of the easiest things I do! I clean her g-tube site twice a day and so far, so good. I took her in yesterday because it looked infected, but thankfully it's not and the redness and discharge is normal. It should be pretty much healed in the next two weeks. Thankful for that! 

She was doing pretty good with her secretions until yesterday when I tried to do some swallow therapy with her. I'm supposed to use a syringe to put one little drop of breastmilk on her pacifier and listen for her to swallow, giving her the chance to practice swallowing with a very small amount. Yesterday, as I tried this at home for the first time alone, I accidentally squeezed out 2-3 drops of milk instead of one. (I was doing this one-handed while holding her sideways on the boppy pillow, holding her with one hand and holding out the pacifier and putting the drop on with the other hand.) Getting those extra drops in her mouth resulted in about a half hour of congestion and labored breathing. It was pretty scary. She has struggled a lot over the past 24 hours with her secretions and I've had to suction her often to help her clear her mouth; this is probably the hardest part of her care because it's when she is in the most distress and I just feel bad because she's uncomfortable and upset and I see her frailty more clearly.  

Other than that, she's a typical newborn. Her brothers love her and ask to hold her all the time. Luke has decided he wants to be the baby and wants to have all of her pacifiers. (Even though I tried to get him to take one as a baby and he refused! Little stinker!). Jacob is the most tender with her and would hold her for hours on end if he could. Josiah loves her as well, but is usually too busy to sit and hold her for any length of time. 




At the time of this picture, Jacob literally asked if I could get her a little closer to him! He loves her so much! 


Josiah's first response to Eden was to sniff a few times and say, "She smells like cheesey noodles!" 


Jacob really is a great help and I trust him with Eden because I know he would never hurt her and he's very careful with her (and if you know him, you know he is not normally a careful boy!). 

Things we're learning: There's a lot of grace in the command to not worry about tomorrow. That was actually one of the first things Don said to me after our 20 week ultrasound when they noticed the missing corpus callosum. The weight of Eden's care is exactly enough for one day and I can't possibly think about tomorrow let alone 2-3 weeks from now or a year from now. I'm getting about 4 hours of sleep a night and that's interrupted by 3 feeds and checking on her 20-30 times to see if she's handling her secretions ok. I can hear her high pitched breathing and the sound of her trying to spit and I just can't ignore that. Many times she's perfectly fine and is just working on clearing her mouth herself which is a very important skill for her to practice. During the night I often feel like I'm literally going to die- I'm so tired and it's so hard, but I wake up in the morning with new strength and usually feel just fine. Help always comes. 

A dear friend sent me an article related to this- here's an excerpt: "His command that we “not be anxious about tomorrow” is a great mercy to us. If we obey him, he will relieve us of a burden too heavy for us to carry. We lay aside the weight of tomorrow’s trouble by exercising two simple acts of faith: we receive and we cast. We receive from God his sufficient grace for today. And we cast our anxieties for tomorrow on God because he cares for us (1 Peter 5:7)." The full article can be found here: http://www.desiringgod.org/articles/lay-aside-the-weight-of-tomorrow-s-trouble 

The other thing we've been thinking about a lot is that joy comes from God. It doesn't come from getting loads of sleep, having healthy children, a big home, lots of money, or everything working out exactly as you hope it will. It comes from nearness to God and him giving you joy in lots of simple things, like watching your two year old coast on his balance bike, or watching your twins bounce on the trampoline, or sitting on the couch with your husband to celebrate your 13 year anniversary with chocolate covered pretzels after a long day. We did this last night and I'm sure had as much joy and good conversation as we would have at a great restaurant.  

Don has been the one to help me think through this and has been a constant source of encouragement and help to me and has been husband and father extraordinaire over these past weeks since Eden has arrived (He's always been a great help and encouragement but since Eden, he's taken on full care of the entire family- he gets our meals on the table, changes Luke's diapers, puts all the boys to bed at night, gets up with them early in the morning, bounces on the trampoline, reads stories, builds with Legos, and on and on. I only have care of Eden, which is probably light in comparison!). Last night as I lamented that we may not be able to get out for dates as much or take vacations or really enjoy a lot of freedom that other families may have, he reminded me of this truth (that joy comes from God) and said that we'll have as much joy as we ever did, and in some ways probably more. And that really has been our experience, despite a hard diagnosis, lack of sleep, scary times of trying to help the baby work out her congestion, and a daily routine that leaves little time to even answer the phone. We're not going to lack for anything and we won't miss out on anything either. Our lives are richer and fuller because of Eden- she brings out the best in us all! 



Sweet Pea tired after another appointment at the hospital. 


Little Peanut watching the lights while letting me type. (And in case you're wondering, she goes by lots of names right now: Peanut, Sweet Pea, Little Sweet, Cookie, Honey Girl and Girl- as in, "Hey, Girl"or "Come here, Girl"- my grandpa used to call me "Girl" and my dad does the same, and though it sounds like it would be cold, it's actually very affectionate and loving. 

And at the time of publishing this post, I do believe she may have smiled at me. It could have been a sleepy smile or passing gas, but I'll take it and say, "Thank you, Lord!" 


"Oh, taste and see that the LORD is good! Blessed (happy!) is the man who takes refuge in him!" Psalm 34:8

3 comments:

Corrie and Phil said...

Once again, so beautifully moving. Thanks for sharing and inviting us to journey with you. Here's to abundant joy!

Amy Kraal said...

I love the focus on joy. This joy is easily evident in your family and the complete adoration that the kids have for each other. It shines admist the normal sibling wrestling sessions and debates over toys that are surrounded by smiles, hugs, and laughter that fills your house! Eden is one lucky little girl to have this family.

Your strength as a mom & love and trust in God continues to shine through each moment. You are weary and tired but I KNOW you are far from broken. I just wish you didn't have to be so strong and show so much stamina.

I love you Girl and am proud to call you my sister <3

Dona said...

I tried leaving a post right after you posted, it didn't go through, trying again! Keeping you in our prayers.

Thankful for your heart! I know this isn't an easy road, praying God's grace.