Ellie is still growing. She is up to 4lbs 14oz. I can't believe she is almost 5lbs!?! She is starting to fit in newborn outfits. Her feeds are going really well. So well they have taken her NG tube out. Ok, it may have fallen out during a night shift this week, but she was eating so good they just decided not to put it back in. Today the doctor said that she can start eating ad lib - which means she can eat as much as she wants when she wants. Within reason of course. They have been feeding her every 3 hours, but now she is allowed to go anywhere between 2.5 and 3.5 hours between feedings. I am hoping that they will soon let her go 4 hours between them at nights. Maybe. Fingers crossed. Wow it would be great if she could sleep 4 hours stretches at night by the time she comes home.
She is still on oxygen. I would be lying if I said I wasn't frustrated and completely ok with this. The doctor told us yesterday that they were expecting her to be off of oxygen by Saturday. I may or may not have had to catch my self from rolling my eyes and didn't catch myself before letting out a sarcastic laugh. I knew in my gut that Ellie wasn't ready for that plan. As well as she has been doing, she is taking her time. When she gets really feisty, she will pull out her cannula and even sometimes try to eat it (obviously because they are so delicious). When she does this, her oxygen level goes down, proof that she is not ready to be without it yet. However, with talking with the doctor today, she told us that they have to try and wean her down and how she responds tells them if they are going too fast for her or not. In the last 4 days she has gone from 3L to 1.5L which is really really good. They just went down to 1.5 yesterday, which is why I thought their timeline was too fast. Sure enough, they tried to go down to 1L last night and Ellie politely told them: "Nope, I'm not ready for that yet. Please turn it back up to 1.5." And they did. They are going to try turning it down again tomorrow.
Since Ellie remains on oxygen at 36 weeks, she has been diagnosed with chronic lung disease. It isn't as scary as it sounds. They are confident right now that she will not have to go home on oxygen. For the first few years of her life while her lungs continue to develop we will have to be very, VERY careful of germs. If she gets a cold, or gets sick, it will be a lot harder on her and take her longer to recover than babies who don't have chronic lung disease. Hand washing will be key for anyone that is around her or wants to hold her. I'm sure I will have more hand sanitizer in her diaper bag than diapers. In the grand scheme of things, it is such a small price to pay to have her with us. It won't be forever, just for the first few years while her lungs still develop.
Parenting lesson #57 that Wesley and I have learned is that you cannot push your child to develop faster than they will. Patience is hard, but key, as our baby needs to grow at her own pace. We love her so much and just want her to get to the point where she is ready and can safely come home. I seem to read these scriptures everyday:
"If thou art called to pass through tribulation... if thou art in perils by land or by sea; And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good. The Son of Man hath descended below them all. Art thou greater than he? Therefore, hold on thy way... For God shall be with you forever and ever."
Some days it does feel like a black cloud is over our heads.... I get stung by a bee in the face on the way into the hospital...we find out that when we built our fence 2 years ago we used the wrong pins to measure the placement and we now legally have to move 42 feet of fence by the end of the month before the new owners close on the house next door... But at the end of the day we know we are lucky and that we have not been forsaken. We are so blessed with the best family and friends supporting us. I made it. Ellie made it. And sooner than we know it we will be taking her home - happy and healthy :)