At Home - Week 1 (Aug. 3rd-9th)

Babies Situation:

Trinity made it home late Sunday night (12 hours earlier than expected) as signs showed negative lab results. This was great news. We are hitting the reset button as a family with everyone officially home together again. It is a little bitter sweet but still an awesome feeling.

Trinity still has her NG tube inserted for continuous feeding through a pump at night time. Unfortunately, the feeding pump that we were given has not worked properly, since we were discharged last week. This is causing some problems. Essentially, she is getting her entire feed in half the amount of time. We feel so bad for her as we know her stomach must be expanding and contracting at a furious pace. Throughout the week, we exchanged 2 pumps and by Thursday August 6th we finally received a hospital grade pump (our 3rd pump) that worked for her - thank you Lord.

In the meantime, Trinity took maters into her own hands. She ripped out her NG tube twice in 2 days consecutively. This compounded the issues for us as we tried to insert the tube 3 times on Wed. night but were unsuccessful. It was in OK but we were not sure if it was in the right spot as we would get residuals one time but not the next. On Wed. we were fortunate to have our friend and Nurse, Nicole, help us with the insertion. Wed. night worked great with the new pump. However, on Thursday Trinity again took advantage of the small window and her little fingers to rip out the tube - she is a feisty little one. That afternoon, our OT nurse fed Trinity and she took almost 60 cc's. Since the tube was already out and she had done well with her feedings today, we decided to leave it out and bottle feed her throughout the night. What a miracle. She took to the bottle well. Hopefully, her NG tube and feeding pump is completely behind her now.

Their heart and respiratory monitors have been on for about 16 hours/day and all has gone well with the exception of one going off for 15 mins straight. It was like a smoke alarm so it was really unpleasant. The alarm could not be turned off even it was powered down and showing it to be off. Thankfully, it was a tool error and not something caused by a low heart rate or apneic spell.

On Thursday evening Trena's Mom, Terre (Mimi to the girls) came in to help us. What a blessing it is to have her here. These girls are a lot of work as I am sure you all know if you have kids. The girls love having Mimi here and so do the parents.

The girls had another Pediatrician visit this Friday and all seemed to go well. Most of the discussion surrounded the NG Tube, Feeding Pump, and their gas/reflux/fussiness. We have a couple of ideas to help alleviate some of their gas pains - prune juice and mylicon. Hopefully, this will help them stool and release the gasses.

We have had many friends swing by but Sunday the girls had their friends, Taylor and Leighton, come visit them. The four of them met in the NICU. You may know them as the Davis's. It was such a great visit to see them all together outside of the hospital. We have all been though so very much. We are blessed to now know them and call them our friends.

Parent's Thoughts:

We are very overwhelmed. Small things that are usually not bothersome seem to be huge. We are all tired short on sleep but know that we are doing all we can to help them. The girls have progressed this week and we are very thankful that Trinity may no longer need her feeding tube and pump. Thank you Lord. Mimi's help is also a true blessing to all of us. Our appreciation cannot be explained. We are trying to take it one challenge at a time. It is hard to keep all of their medications in check but we do have a self made schedule to help. We are tracking all feedings, stools, diaper changes, and meds as well. Even though it has been a difficult week we are very fortunate to have them home. In time we pray it will get a little easier for them and us.

Weekly Encouragement:

In this you greatly rejoice, through now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

1 Peter 1:6-7