March 4th 2017, 1700

Today is Calogero's 12 birthday so if you see him please wish him a Happy Birthday! We had plans to spend a portion of the day with him but unfortunately we had some things happen that made us stay back at the hospital today. Grandma is filling in for mom and dad and taking Calogero to dinner and a movie but we miss him very much today.

Today we managed to hit a few bumps in the road for Arlyn and for mommy. This morning during rounds the plan was to increased he feeds, do aggressive chest PT adding nebulizer treatments, take out her arterial line in her wrist and have an ultrasound done of her diaphragm. Her left lung was still collapsed this morning on X-ray and they wanted an ultrasound to determine if the phrenic nerve for the left side of her diaphragm was injured which can happen during the type of surgery that Arlyn had. After ultrasound it was determined that the right side of her diaphragm was moving vigorously and the left side wasn't moving at all. This changed the plan so Arlyn went on Bipap to open her left lung up and a chest X-ray will be done tomorrow if there isn't any large improvement they will re-intubate her. There are two things that can happen with this type of injury a baby can compensate and use the right and in tome instances regain some of the left function back and we will be able to see if this happens in the next two weeks. If that doesn't happen there is a chance that she may have to have another surgery to tack down her diaphragm on the left side. There was a lot of " if this happens then this may happen" today and it was difficult to process.

Carriann went to OBGYN triage and after some time there will just need to take a extra medication and let things run their course. We are hopeful that it will do what its suppose to do and we don't have to go back again while we are here. C-section is very different than a vaginal birth I realize and can believe people would opt for one!

March 3rd, 2017 2100

What an amazing day we had! There were a few unexpected things happen but hopefully we will sail into tomorrow with no issues. After the ECHO the nurse practitioner came to see us because they found a blood clot in her superior vena cava so she will be started on lovenox twice a day for 3 months and eventually have an ultrasound to clear her. Although they found a blood clot the structure and function of Arlyns heart is working beautifully how wonderful that the surgery has proven to work. She was weaned successfully to 2 L Nasal canal and did great today with her chest PT and prone positioning. She actually loves her belly time. She successfully has a dobhoff and started breast milk feeds at 2ml/hour and should advance tomorrow. The plan for tomorrow is to likely get the right wrist art line removed she was weaned of milrinone this afternoon so she no longer has any cardiac drugs on board. She also had her Right atrial line taken out and looks so much better without all the extra equipment. Daddy and Mommy got to snuggle with Arlyn for another hour this afternoon and she just absolutely loved the snuggle time.

This evening we spend dinner time with the kids and Scotts mom grammy Tammy. She took the kids to a hotel for the evening before she heads back to KY tomorrow. It has been nice to have Scotts mom here to help us through the last week. Christian and Luke had fun with us tonight and were really excited to have their first sleep over with grammy. The little boys watched a video of Arlyn crying and got to see pictures tonight of their little sister. Overall a really nice day! I am back by Arlyns side for a few more hours until I head to bed, please keep the prayer chain going and the amazing strides that my little bean sprout has made will continue.

Mommy and Daddy snuggle time 

Ms. Arlyn with her new feeding tube 

March 3rd 2017, 1030

Arlyn had a good night overnight she needed a little bit more oxygen support overnight and was positioned prone to aid in her breathing but this morning we were able to wean back to 4L (40%) from 10 L where we started. Our hopes are that she will be able to wean today down to 2 L although her chest x ray this morning showed that she was quite consolidated on the left side. The goal for the day is to do aggressive check PT and reposition. Staying in tune with that I was able to do skin to skin for the first time! It was quite enjoyable for me to be able to just snuggle her for about an hour this morning. Arlyn was able to get her right atrial line removed and although her chest tube turned back to pink from serous she is now free from the line. Arlyn is getting an ECHO right now to see how the function of her heart does. Her lab work looks great her lactate that was elevated to 2.7 yesterday is down to 1.7 today. She has started to take her little pacifier much better today and really seems like she is hungry so we are hoping after the oxygen is weaned down she will start to eat. The nurses will be placing a dobhoff tube after the ECHO so trickle feeds can be started. So far a very busy and productive day for Arlyn. So excited to see how far we get today!

 Sleeping on my belly 

 Cupping 

 My first Skin to Skin 

All done with cupping and quite upset in this moment 

March 2nd 2017, 2100

Arlyn had a wonderful day today! Arlyns breathing was better and she was extubated at 1240. She struggled for the first hour and the medical team was worried about her work of breathing. The nurse was doing great chest PT and sitting her up and she was breathing fast but after about 45 min we decided she liked being sat up so much that I got to hold her for the first time in 5 days. She calmed down and she did better. They started weaning the dopamine off and by this evening it was able to be stopped. Over the next few days we hope to get the milrinone weaned off over the next couple of days we should see he evaluation by speech to see if she is strong enough and coordinated enough (so she swallows and breaths at different times) to take a bottle if not then we are looking at a nasogastric tube.

The dressing chafe was done on her chest wound vac this afternoon and I was told it looked so well they could have taken it off but likely on monday they will. Her Chest tube will likely be taken out later next week. WE are hopeful after the cardiac medication is weaned we will see the right neck arterial line removed…All good goals for the next couple of days.

Thank you to everyone for the overwhelming support for our family. Yesterday the little boys came up and ate dinner with me and daddy and tonight I was able to see the older boys for 4 hours this evening and hang out with them. It was extremely hard to see all of them leave but I am back at Arlyns bedside and I think all 4 boys realize how important that is. keep the prayers coming and heres to another successful day!

March 2, 2017 (1030) 

Arlyn is preparing to Extubate today! Please send prayers to our little baby, Arlyn pressure supported for 1 hours this morning and did really well. They gave her three doses of decahedron to reduce inflammation before they attempt extubation. Arlyn's lungs still looked fluid overloaded and they gave her lasix this morning to help although she will be started on high flow oxygen after she is extubated. Arlyn also had a good bowel movement overnight. They are backing off on her frequent lab work and everything looked well this morning. She was attempted once more for an hour on pressure support trial  until 1200 and extabation looks like it is still a go so she may be freed of one more tube by 1230. 

March 1st, 2017 21:20

Arlyn had a long day today she started the day out great! She went to MRI and had to be sedated and paralyzed for the test so this afternoon after she came back she again had a delay in waking up it took her until late this evening. The medical team attempted to pressure support her on the ventilator but at 1500 she was having significant apnea so they placed her back on full ventilation. At 2000 they tried again and considered her 30 min of pressure support a success and plan to pressure support at 0730 tomorrow morning and possibly extubate. It would be really nice if by afternoon tomorrow she had the breathing tube out. The neurologist came down and gave us the results of the imaging that was done with the MRI. essentially she has an hypoxic brain injury in several small areas of the water shed area which is quite common in babies after surgery. At this point we would not be able to tell if this could delay Arlyn only when we repeat the MRI in about 4 months. The Neurologists believed one of two things could happen she could repeat the MRI in 4 months and she that she is completely normal MRI or she could develop scar tissue and at that point we would have to watch for developmental delays. Either way we just need more time to tell.

 Wide awake after pressure support 

 new booties, wearing on of Arlyns baby shower gifts

February 29th, 2017 (0842)

Overnight Arlyn had no events and received more calcium, she was weaned down from the vent last night so today at the end of the day they may start pressure support trials. This morning she will be going for an MRI of her head to see if anything can be seen due to her seizure activity. She is due to go down at 1000. Arlyn sounds very corse in her lungs but her swelling is much better they choose to give  her a dose of lasix again this morning to help dry up her lungs. Todays goals are to get the MRI, continue to wean the vent and possibly do her first pressure support trial this afternoon or evening. She will be sedated with a fentenyl drip and paralyzed again for the MRI but only get one dose so I am hopeful she will not have a delay in waking up from her sedation and paralytic like before.

We are feeling excited about the possibility of extubation in the next day or so. Cross your fingers that my little bean sprout has another good day, she is already proving how very strong she is.