Day 5: Tiffany’s perspective and Sloane Updates

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 a long term family room. This is nice because there is a double bed, bathroom, and pumping station in her NICU room. I’ve got to remind myself I have a little sweet boy at home who needs me too but it’s nice to know we can stay there when needed.

The things we know about her case:

Tomorrow is a BIG day for Sloane. She will have ENT changing her trach for the first time. This is exciting because the change will tell us how she is healing, and whether or not we can take her off the ventilator. We have been slowly decreasing her sedation levels and her pain medication- this has been hard because it’s a balance keeping her calm enough that her site can heal, but not so calm that she’s not responsive. It’s also been hard to watch because she’s been on very heavy duty pain medication since before she was even born and she is having a few mild signs of withdrawal as we pull back from those medications a little. The good news is though, once she is off the vent and her site is in good shape, ERIC AND I CAN HOLD HER. I can’t even tell you how badly I need that.

We really begin to understand this week that Sloane‘s case is crazy rare. At this time, her doctors are considering Treacher Collins Syndrome although there are some indicators that she may not have that as well. With Sloane having both micrognathia AND having nasal atresia/stenosis at the same time has some of her team totally perplexed. The lead ENT on our case told us he’s been specializing in micrognathia cases and surgeries for 22 years and he’s never seen both of her anomalies together in a single case he’s worked on or collaborated on. So this is new territory for us all. Our doctors are working together tomorrow morning on their team to reach out to several other research centers and see how best to approach her future surgeries. She will definitely have to have a mandible distraction surgery: where they move her jaw forward slowly before she’s a year so that her jaw will grow where it is supposed to as a child and adult; and also a surgery where they create a nasal cavity opening. Neither of these surgeries are ground breaking but the combination of them needs to be considered for long term results.

We have been really lucky to have an INCREDIBLE team of people working with Sloane. Eric and I have really connected with several doctors so far that we really like; and we feel she is in the best hands she could possibly be in. We both truly believe that it is a miracle that we are living here in Denver at a time when we absolutely need to be here. Colorado Children’s has some of the best ENT’s in the country; along with the leading experts in pediatric craniofacial surgery; and we feel really privileged to be working with these people on our team. It’s been pretty amazing to us how personable the doctors are. One doctor in particular, Dr. Greg Allen, has seriously checked in on us and Sloane every day since she was born and has been a wealth of knowledge and information for us about her case. He’s just a normal guy but he’s a brilliant doctor (Eric is sick of me exclaiming that, haha) and he’s also dad with kids who wants to make other people’s kids have the best quality of life they can. We are so grateful that a person that’s so busy and pulled in so many directions has time for us and has taken a vested interest in our case. It puts our minds at ease. 

We know that Sloane has a long journey ahead of her. We do too as a result. Our lives have been changed forever and the next two years seem very uncertain BUT we are finding hope. To bring this around to a little bit of a spiritual side: one of my favorite aspects of our religion (Church of Jesus Christ of Latter Day Saints - we are Mormons!) is that we believe that the priesthood has been restored to the earth today in its original order, and that a man who has received it by the proper line of authority can administer to the sick and afflicted, through blessings. Eric has been able to give Sloane a blessing with the help of other priesthood holders and as I sat, listening to the incredible things promised our daughter: I realized she is nothing short of miraculous. I truly believe that Sloane has an important purpose here on this earth and that she will teach our family love, compassion, and perhaps most importantly; humility, kindness and remind us to have FAITH. Sometimes it’s so hard to have perspective when you feel like the world is crashing down around you. But I know that Heavenly Father loves me, my husband, and my children. I know this because I am a mother and I know what a parent feels for their children. 

 I should say in closing; my heart is full. I can’t even begin to think of the hundreds of thank you cards I owe people for coming over, coming to the hospital, taking Aiden, keeping my family fed, cleaning my house, travel offers, actual travel, texts, emails, calls and countless other ways people are helping us through this incredibly intense time in our lives. I have not been exceptional at being responsive but I do promise to work on trying to be better. 

We feel loved.