Scary Day

These are a few pictures we took of Emily last night.

Yesterday I had a chance to speak with Emily's neonatologist and her occupational therapist. In the morning the neonatologist outlined the plan to get Emily back on track with her feedings. He said that we are past the seven to ten day mark when weight loss is acceptable but now we really should be turning it around and gaining weight slowly but surely. He ordered the HMF (Human Milk Fortifier) calorie pack back to her feedings putting her again at 22 calories per feed. He said they will monitor her closely to make sure she tolerates the change and go from there. Should she not do well with this again there is another medication they can give her to try and increase her weight. She has lost another 500 grams so at this point we need to add something to the milk in order for her to grow and come home! In the afternoon I met with Emily's occupational therapist. She was really nice and seemed to have a genuine concern for both Emily and myself. She explained Emily's developmental plan and how they would periodically be checking to make sure her muscles are growing and her sutures or plates in her head are shifting and separating as they should be. She told me Emily is very feisty for a baby of her gestational age and I am encouraged each time I hear that. It lets me know she is strong and fighting hard to come home to her family that loves her and misses her desperately.

Today was a little harrowing for me. I went up to the hospital at seven thirty this morning for Emily's first feeding with the day shift. Emily didn't do well with her feeding, throwing up five different times a yucky mixture of partially digested milk and mucus (sorry to be so detailed). Once it was so bad, she started choking and turning blue. I have always been so gentle and fragile with her ever mindful of her wires and tubes but when I saw her in distress I jumped out of my chair faster than I have moved in months and started screaming for a nurse while I flipped her over and pounded on her back. We got her to recover and they suctioned out the rest of the yuck from her nose and mouth. All was well until she did it all over again five minutes later. After her feeding I discovered the nurse had not read the orders to have Emily's pump set to 45 minutes which slows down the amount of time it takes for her milk to fill her tummy. (When they moved her gavage tube (feeding tube) from her mouth to her nose and increased her volume of milk they put her gavage on a pump instead of letting gravity push the milk through the tube). The pump had been set at 30 minutes but was changed several days ago when we first tried the HMF and failed. Emily's nurse today had the pump set back to 30 minutes, SO..... I don't know if Emily is still not tolerating the changes with her feedings or if she was sick from the milk being pushed into her little tummy much too quickly. It was so upsetting to me I had to leave but was so afraid to leave her, afraid of her throwing up and choking again without a nurse getting to her fast enough. The nurse practitioner on duty today listened to my fears and promised me she would watch her. I kissed my sweet Emily and laid her back in her isolet on her side just in case she did have another episode. I came straight home and sent Mom right back up there to sit with her through her next feeding. It's SO hard to not be in control. It's SO hard to watch Emily in these terrifying moments knowing I am not able to be by her side every minute of every day to protect her and watch over her. I know God is there and I trust that he will get nurses to her side in an emergency, it's just SO hard not to be there myself. It's SO hard to leave her in the care of others and trust that they will do everything right. Yesterday a baby boy was admitted to the NICU and this morning another one. They are both full term, huge babies ( 8 and 9 lbs.) with respiratory problems. Today around noon the NICU is expecting twins, I'm not sure their gestational age but know they are early. I'm afraid now that Emily is not so critical and these other babies are, that she will be overlooked and have another episode like today. Satan got to me and I have been playing the what if game all morning. What if I hadn't been there? For some reason her alarm did not go off when she started choking and gasping for air. Would the nurse have noticed? Would it have been in time? What if it happens again? How can I bear this?

Today continue to pray that I will find peace. Continue to pray for Emily's feedings and bradys. Pray for Wayne, Lila and Mom as they deal with me and my fears, uncertainty, aching heart and roller coaster of emotions. I sometimes forget that they might have a harder time than I because they are worried about Emily too and then have to deal with me on top of that! Pray for Emily's doctors and nurses. And pray for good news for me tomorrow as I have the ultrasound on my thyroid. I truly cannot handle one more thing on my plate right now... but then again God has been faithful. He hasn't let me down yet. He gets me up and out of bed every morning despite my exhaustion. If something is wrong, I know he will see us through yet again! I know I have said this before but I am so overwhelmed by the love he has poured out on me and my sweet baby... make that sweet babies... Lila seems to be handling all this so well... at least this week! I am just so proud of both my girls! Thank you for your prayers. God is hearing them and answering them faster than I imagined!