Dear friends and family,
Life has been busy and full of little change causing us to quickly forget to update all of you who pray so faithfully for us. We do apologize and hope you understand that it is merely because of the season we are in.
Edith has been doing well but has been struggling with her feeding since her second surgery. I’m sure most of you know that the last surgery went well and that all we had to work on was building her food amount slowly to give her intestines a gentle start. Well, we made it from 1ml all the way to 13ml per hour on continuous feed before vomiting up everything she ate. We held feeds and put in a suction tube to make sure nothing was in her tummy to give it a rest, which lasted four days and then we decided to try her on feeds again. This time we started at 5ml per hour, but twelve hours later it all started coming back up. One more day of rest then started back at 2ml. Since then we have been increasing by 1ml every 24 hours and have worked all the way up to 8ml per hour and have had no vomiting! Praise the Lord.
What most of you probably don’t know is that with the vomiting they were worried she might need a third surgery to go back in and remove the obstruction and possibly more of her small intestine. As you can imagine, this was VERY discouraging when we had gotten so close to the finish line. We are thankful that this has not been necessary. One of the reasons it’s been hard to update everyone is that we too have been waiting for answers as to what was going on. There are multiple things that it could have been or may still be a problem.
1. Reflux – just from being flat in her bed while receiving feeds continuously without a break. (which is necessary right now as her tummy wouldn’t be able to handle the volume in one quick feed like a non-premature baby) This is quite normal in most babies and causes gas and spit ups. Since she has this, we have her bed slightly tilted to allow her head more elevation than her feet to try and help. Snuggles with mommy and being burped as well as her bouncy seat, which she loves, all have helped decrease her reflux.
2. It could be a partial obstruction that may just need time to heal or if continues to be a problem may require surgery to clean it up. Time will show. We know it’s not a complete obstruction because she still has poopy diapers. (Funny the things you celebrate when in the hospital.)
3. Some term babies get a condition where the muscle leaving the stomach grows very thick not allowing food to pass through the intestines. A quick procedure easily fixes this.
4. It could just be time that Edi needs, and that is what we are praying for. We will continue to go up 1ml every 24 hours until we reach the highest volume that she had achieved before (13ml). The ultimate goal being 24ml every hour.
The doctors are very pleased with her progress so far and are hopeful that she indeed just needed more time to adjust to the feeds. Once she reaches what they call full feeds for her size and age, we will begin bolus feeding. This is where they begin to build the gaps between her feeds by waiting 30 minutes, then 45, then an hour, etc. until we have a three-hour gap between each feed at which she’ll receive 72ml in one feed. During this change from continuous to bolus, we will also be switching her slowly to oral feeds instead of through a feeding tube. This means starting with getting about 1/3 of her feed from either breast or bottle and gradually getting more and more orally.
So far she has only been allowed to “breastfeed” after I have pumped. (Though she still seems to get lots of milk) Once she gets all her feeds orally for a couple of days and continues to gain weight with only minor spit ups, we can go home. This can be quick for some babies and slow for others. It depends on how hard they have to work for the milk.
As you can imagine it’s been a long journey so far, and Edith is now 112 days old today, and we are so ready to be home. So when you pray, please pray for Edi’s health but also pray for the Lord to give Lucas and I the strength to continue on this path He has chosen for us. It is a tiring one with so many ups and downs and also so many lost souls who are watching. We desperately want to be faithful to Him in this storm, but we so often fail Him. Our heart’s desire is to run this race with endurance but I know for myself I often find myself like Peter sinking beneath the overwhelming waves crying out to the Savior who stands there wanting me to look to Him instead of my circumstances. The Lord has been so faithful to us through this season, and I praise Him for all He has done and for this precious little girl I get to call my daughter.
I was reminded, in my Bible study, of God’s desire for us in this life and what I believe He expects from all of His children who face adversity of any kind.
“Therefore let those who suffer according to God’s will entrust their souls to a faithful Creator while doing good.” ~ I Peter 4:19
May we run this race with endurance, trusting our Sovereign Creator, and do good.
Love and thankfulness to you all,
(For Lucas and Edith)