Lancelot turned two weeks old yesterday. I don't think I have ever had such an emotional two weeks in my entire life. The ups and downs caused those two weeks to drag on like the Sahara desert. The bumps and dips and loops we have been thrown for have made my insides feel worse than after riding one of those wicked Bush Garden roller coasters. I think often of a ride my brother managed to badger me into on one visit to the park. It seems to me it was called "The Cobra" and it was at least as scary as one. On this particular roller coaster you hung underneath the rails rather than riding on top and your legs dangled dangerously below you. At one point on the ride you go rushing head first into a gigantic rock only to be yanked backwards on your head at the last possible second into a sickening flip, your feet feeling as if they are inches away from a shattered fibula. A lot of these last two weeks have felt like that ride, nothing solid to set my feet on, dangerously low dips, stomach churning flips, many moments of sheer panic, and the occasional sky rocketing high....all combined to make you feel majorly disoriented. Sometimes the disorientation is almost amusing. Like when Prince Charming supposedly asked if I wanted some orange juice (which I never drink) and I answered that "Yes, actually that sounds really good." only to ask minutes later who's orange juice was sitting in front of me and have no recollection of the conversation at all.
I think the worst part these past few days, besides the worry, has been the endless twists and turns we feel we get from various "specialists". We see specialists in every field only to get slightly different answers from each of them. Sometimes it's hard to know which voices you should actually let yourself hear and which ones you need to just shut off. Often it feels like we are the ones fighting for our babies best interest rather than the medical profession. Every time he has another appointment they agitate him to the point where he is worse off than before and it takes all our effort to calm him again. Or, for example, the other day we took him to a specialist only to be called the next day to be told that she was sorry, she had a cold that she had THOUGHT the previous day was just allergies. Exactly what we do not need right now. I even had one receptionist pretty much yell at me and in almost as many words tell me I was a bad mother for not jumping at the chance for another appointment with another specialist when I felt it wouldn't be of further benefit since it was just a repeat of what we had been told elsewhere. It's as if everyone wants to get their hands on him but nobody has any real answers or helpful solutions. Thankfully we have an excellent pediatrician who takes our calls pretty much daily and doesn't make us feel like we have to defend him and all our decisions. One of the nurses in the ICN (Intermediate Care Nursery) told us to expect this and that we should chose the ones we trusted and wanted to listen to and then put on our polite face for the rest or stand up and say no. We are just starting to learn how to stand up and defend our son and our decisions. It's hard when health professionals give you different views because you really want what's best and don't want to hinder any help...but you also don't want to put the poor kid through more than he's already had to endure.
Here are a few positives and answers to prayer:
-Lancelot is starting to gain weight. We're not completely sure how much yet but we think he MAY be almost back up to birth weight, or at least pretty close. We have decided along with his pediatrician to only weight him at her office because everywhere we went they wanted his weight and it would upset him since he had to be completely undressed. Plus every scale is slightly different. So now we are waiting until next Tuesday to get another weight and we really hope we hear he is huge and we can stop force feeding him and fortifying all his food!
-His rattling has really improved, especially when he's asleep. It's not gone but it's gotten a lot better and the pediatrician has decided that at least for now he does not need to be re-admitted and we'll keep working with a few other things to see if they help. So we hope it continues to improve so that at our next appointment it is not even a concern any longer.
-The other night Lancelot cried an (almost) real baby cry for around half an hour and BARELY turned blue! It was pretty scary but also kind of exciting. This is HUGE since it means his lungs and vocal cords must be starting to compensate. When he was born the hiccups turned him navy.
A few update prayer requests:
-Continued prayer for healing of the lungs and vocal cord to stop both the wheezing and the rattling. That he could cry without de-saturating at all. That he could have a normal voice.
-Prayer that neither he nor any of us would catch any viruses since that would definitely make things worse and wind us back in the hospital.
-Continued prayer for Lancelot's weight. That he will gain steadily and we will soon be able to stop worrying about it. The sooner he is stronger the sooner we will be allowed to see more people and possibly go out in public.
-Prayer for his little tummy. He has had a very upset tummy from medications and the fact that he gets a ton of air into his body when he cries or eats. He also gets upset by all the switching of food mixtures that has had to be done. We really pray he will start settling for feeding times and afterwards as well. It's very hard to have a fussy baby that you can't really let cry!
-Prince Charming has an exam this weekend as well as next week and some end of semester assignments due. We're not sure how he will get these done with all of our appointments and the stress of trying to take on a toddler and a high maintenance little man.
-Little Lady. She seems to be adjusting a little better but it's still rough and this weekend she may need to be away again in order for me to manage the baby while Prince Charming studies and writes exams. I tried handling both kids alone the other day but a couple hours was enough to make me almost have a melt down. When you can't let one kid cry but he has a tummy ache and the other one is lonely for attention and still needs help when hungry, etc.....it gets a little crazy.
Thank you AGAIN to all who are praying and who have shown their support through encouraging notes, songs, verses, meals, cleaning, gifts, etc. You mean the world to us and we really feel your prayers and believe that they are making a big difference for us and our family.