Having a Ball!

My beautiful girl, Today was a hard day. This morning, at 2 am- you cried so hard and I didn't know how to comfort you. We had a rough week, and tonight was harder. I am wracked with needing sleep. I am realizing that for me, the night leading to Friday may be the hardest. I am so close to getting at least 5 hours of sleep- I can taste it. Because dad doesn't work Saturdays, I can go to bed after my 2:30 am shift end, and sleep until I wake up (Your brother is pretty good at sleeping in, so long as I am holding him). Last night was different. You were fussy- which honestly isn't you. You are curious, wide-eyed, and sweetly sleepy, or alert and interested. I knew something was wrong. I changed you diaper at 2, and I saw the source of your discomfort. There was blood in your diaper and your g-tube. All I could think was, "Why can't these things happen when we have a nurse here? Why is this only happening at 2 am when I am beyond sleep deprived, and why- after e

Hi All. We are home. It has taken me a long time to get back to the blog, and for that- I apologize. There hasn't been  a whole lot of time around here lately! But tonight, I am trying to keep my eyes open and this seems like a good way to meet that goal. WE FINALLY BROUGHT SLOANE HOME! Sloane obviously has some complex medical needs, and while Eric and I extensively trained at the hospital, we have to be able to get some relief sometimes with the type of care Sloane requires around the clock. Many facilities make you have 24/7 nursing care before a release date can be set by the hospital. Colorado is not one of these states, but they definitely want to make sure you will be successful once you are out of a hospital setting.  It quickly became apparent to me that with the nursing shortage in Denver, we wouldn't be getting 24/7 care at home anytime soon. We decided to make the executive decision to bring her home without full coverage shortly after hearing that a child do

Sloane is doing excellent. She hit 40 weeks gestationally on Friday the 13th, and we are very pleased with her progress. We have finally gotten to a good growth pattern and she has finally gained a little more weight than her birth weight! These are really good things. She is tolerating good feed times with her G tube; having good STATs, and finally at a place that makes us more comfortable. Part of this is Eric and I moving forward with our education and understanding: part of it is also that Sloane is growing and stabilizing, and we are becoming familiar with her needs. We have hit a few little bumps in the road as far as where we belong at Children's Colorado. We are learning that Sloane is a unique case; she is a preemie on a trach collar, that does not need a ventilator. We are learning this is uncommon and often the hospital administration doesn’t have protocol for our situation. Usually preemies have lung issues (I was pumped full of steroids before delivery and S

With of everything that's been going on, Aiden has been meeting with a Child Life Specialist at the hospital. This is a nice, fluffy way of saying Child Psychologist. She has been amazing, and I am very grateful that Children's Hospital has help for us in this way. The last two days, I have had the opportunity to go to the hospital without Aiden, and on Monday, I ran into his specialist and we had a good chat. She told me that Aiden was going to be okay and that most of his behavior is completely normal for any kid who is almost four and now has to learn to deal with shared parental attention with a sibling. She told me kids were adabtable and that nothing I was going to do was going to screw him up for life. She told me the way he's doing play therapy shoed he knew he was very loved, but also showed that he missed attention. We talked for a bit longer and I asked what to do when things get out of hand and he has a meltdown due to seeking negative attention, because

Today is Easter Sunday. Sloane is 11 days old. Every day she has progressed so much and I am in awe of the miracle that she is. She represents so much that is bigger and better than the person I am. One of the good friends I have here wrote me a text the other day that made me totally lose it. She said her little boy learned in church last week that people that are not physically perfect here will be perfected in the resurrection, and then he made the connection with our baby and said, "Sloane Ball will be a perfect version of herself after the second resurrection, Mom. She's perfect on the inside now and will be perfect on the outside when Christ comes again." How is a mom supposed to hear something like that and not just weep?  I believe that whole-heartedly; but it also makes my heart just hurt because I know that Sloane has so many earthly challenges and I just wish it was going to be an easier road. That being said... I want to have that faith. Right now I am v

Sloane Day 5. Coming from Tiff:  We apologize for taking our time with updates. Now that things are settling a bit at home and in the hospital with Sloane, hopefully we will find a somewhat normal routine.  I got released last night from the maternal fetal wing of the hospital. One thing we are noticing and really liking about Colorado Children’s hospital is that everyone seems to be extremely loving and accommodating, and we were able to really move at our own pace for my discharge. We really appreciate this as everything has been such a whirlwind for us. It’s still mind blowing that it’s been less than two weeks since we learned that we would need to even be working with Children’s at all. Last night was very odd. I feel like it goes against everything in nature to have a baby, and then leave your baby in the NICU to go home. We both were glad to be back in our own bed but it also was really disconcerting. They did do a room change for Sloane after I got discharged, and now we are in