Day 19: Care Conference

We had a care conference yesterday with our social worker and neonatologist. We learned that both girls are doing well. We were reminded how awesome it is that both of our girls are off the vent. We were also reminded that we are not out of the woods in terms of the possibility of either of them needing to go back on the vent. At this point there is not reason for this, but if either were to start to go down hill drastically it could mean that she would have to be intubated again. The neonatologist said that the longer they stay off the vent the less likely they are to ever have to go back on it. Please pray that God continue to keep them strong, breathing well with the CPAP, and not needing to going on the vent.

Adalyn in having some alarms, lately just for desats (dropping her oxygen level). They have been self resolved most of the time which means most of the time they do not need to turn up her oxygen. She and Emma are still on a CPAP of 5 on room air. Adalyn's feedings are at 12 ml every 3 hours (still with the HMF to bring the calories to 22/ounce). To put that into perspective for you, there are 30 ml in an ounce...so she is getting almost 1/2 an ounce...big stuff! In the words of her nurse this morning she is "handling her feedings like a champ". She has had some small residuals and one small spit up this morning, but nothing that they are concerned about at this point. When Adalyn gets to 18 ml every 3 hours she will not need any TPN and lipids anymore. Which means she can get her PICC line out. SO if she keeps tolerating her feedings well and advancing like she has been Adalyn could be getting her PICC line out by the end of the week. This is huge because the PICC line is a huge source for potential infection. So getting that out means we significantly lower Adalyn's risk of infection. Please pray she continue to tolerate her feedings well so that her PICC can come out soon. Adalyn weighed in last night at 2lbs 5oz...easy piggy piggy piggy :)

Emma continues to have brady alarms, but she did not have an excessive amount yesterday and most of they were self resolved. Emma is back up to 6 ml every 3 hours on her feedings and has been having some issues. She has not been spitting up, but she is not digesting all of her feedings. Thankfully they have not had to hold or stop her feedings, but in order for her to progress she needs to tolerate her feedings better. Please pray that Emma starts digesting her feedings and tolerating them so they can continue to increase the amount that she is getting. Emma has still been occasionally getting some brown aspirate of of her tummy. The doctors feel this is still do to stomach irritation likely because of the ibuprofen she was given to before to help close her PDA. Please pray that God heal Emma's tummy and that the doctors are not missing anything.

Emma had her heart echo today and it showed that she still has a moderated PDA and that she has some enlargement of her right atrium. Our neonatologist said that he needs to discuss Emma with the other 8 neonatologists to come to a general consensus on how to manage her PDA, but he said due to the enlargement of the right atrium it is likely they will be recommending surgery. Please pray for the doctors as they make this decision. Please also pray that if surgery if what they advise, that God already begin to prepare the surgeon, nurses, and anesthesiologist that will be involved so that they can have sharp, clear minds at the surgery, steady hands, and caring hearts for Miss Emma. A few concerns with the surgery to be praying about:
1. One obvious concern is surgery on such a small baby, please pray that God protect her from bleeding and infection and hold her in His hands.
2. The nerves that control one of Emma's vocal cords runs right along the PDA and there is a risk that when they clamp off the PDA they could damage the nerve. This would paralyze one of her vocal cords which can lead to voice changes and feeding problems. Please pray that the nerve goes undamaged.
3. Emma will have to be intubated for the procedure and put back on the vent for a minimum of 24-48 hours. Putting her back on the vent means a risk of her becoming dependent on it and having trouble coming off it. Please pray that Emma is strong and begins breathing on her own again so that she can come off the vent ASAP.
4. In order to operate on the heart they must collapse her left lung for the duration of the procedure, meaning the right lung must do all the work. Please pray that God protect her lungs as this has a risk of causing some damage to one or both lungs. Please pray that her left lung re inflates after surgery with no problems.

Because of Emma's fluid restriction she was on for a few days as well as her issues tolerating her feedings, she has lost a little more weight. Emma is now down to 2lbs 1oz. Again please pray that Emma will start tolerating her feedings better so that she can gain weight. And also so we can get her to the point where she can get her PICC line out so that she can get rid of that source of infection.

As always please continue to pray that the girls grow and develop well and that God protect them from infection. Thanks again for your faithfulness in praying for the girls!