It is so hard to not be able to pick up my little one and calm her when she “cries.” It breaks my heart to see her coming down off of the pain medications and having side effects that are uncomfortable to her. While all of the things being done for Emma are moving her in the right direction, it is still hard to sit on the couch or stand by her box and watch, helpless, while my baby girl suffers.
Yesterday, they pulled Emma off her IV pain and sedation meds and switched to a less powerful pain med and anxiety med by mouth (or in Emma’s case, by feeding tube). At first, Emma was ok. Then, Emma started showing signs of irritability and pain. We could tell that she could feel the tube in mouth and the one that goes to her stomach. She would gag on the tube, especially when moved for an xray, bath, respiratory therapy, etc. Around 4:30pm yesterday after she had been bathed and then lifted for an xray, she gagged and vomited a nasty black/brown substance. They tested it and it came back positive for blood. They said it was very little blood, so they kept feeding her and put her on an acid controller medicine. Emma did really well until around 2:00am when she vomited again. This time, the vomit was clear, so we were able to talk the doctor into letting her stay on the feeds. Well, around 4:00am, after xray, Emma vomited for the third time, this time with a little brown substance mixed in with the clear, so they stopped feeding her. After looking at the current xray, they determined that the feeding tube had moved from ND (in duodenum) to NG (in stomach) and was looped around almost in a knot. They believe that this plus the lack of proper sedation/pain control is causing her to vomit. So, they moved her feeding tube back to ND and upped her pain/anxiety drugs a little. I am still sitting by her bed, needing to calm her down a lot, but it will be that way until they can balance these meds.
All in all, this is part of the process, but it is never fun to watch your little one go through all of this. It is slightly ironic that the problems keeping us in ICU are not really heart related (which is good); however, she needs to come off of the vent and stay on full feeds. It is really hard to make big or even medium steps forward while being on the vent.
God is Good! All the time! God is Good! He “fearfully and wonderfully made” Miss Emma and she is a blessing to us each and every day. Friday night into Saturday morning, 3 families in the CICU lost their little ones. Some of these little ones very rarely had family with them during this journey. We have been so blessed to be able to be here with Emma throughout this process. We may not be able to hold her, but we sing, talk, pray, bathe, change, kiss, love, and touch her often during the day. We want her to know how special she is to us and how much we love her. Emma is so very special to us and to many of you who read this blog. She has taught me to love deeper, pray harder, be kinder to others, and trust more fully in God. I pray that God gives Scott and I the opportunity to show her HIS LOVE and what “living” for Christ really means. Thank you again for your continued prayers and support.
Specific Prayer Requests:
Pray that Emma will not be in a lot of pain.
Pray that the fluid in, on , and around her lungs will continue to decrease and go away.
Pray that Emma’s heart stays arrythmia free.
Pray that the doctors can find a good pain/sedation balance with new medications.
Pray that Emma will tolerate the tolerex formula and hold her food down and properly digest it.
Pray that Emma’s sats, neer, labs, etc. stay good.
Pray that Scott and I will have strength and patience for this journey.
Sarah (Emma’s Mommy)