NICU Reunion 2016 (April 30, 2016)

There is one celebration that we look forward to every year that holds a special place in our hearts because it's where Seiden got her start in life.  This special celebration I'm referring is the annual NICU reunion at Harris Methodist in Fort Worth.  The day Seiden graduated from the NICU was one of the happiest days of my life, aside from her being born of course!  But, on November 5, 2013, we got to walk out of the NICU doors and take our baby girl home.  And that, was something that I could never put into words of the sheer joy, excitement, and amazement, but also the fear that came along with it.  See, Seiden had the BEST nurses and doctors that we could ever possibly have asked God for and they took the most amazing care of her around the clock.  Cody and I were there pretty much non-stop, but we couldn't take care of her the way they were.  For the first 10 days of her life, she couldn't be held and all we could do was sit beside her incubator, lean over and kiss on her, and hold her hand and love on her the best way we could while she was hooked up to all those cords and machines.  The only time she was really "held" was when the nurses would change her sheets on her bed.  One time, I got to hold her while they did it and it was the BEST day in the NICU up to that point.  The day that Seiden got extubated will be a day I will never forget!  For one, it was the day that I finally got to hold her.  And two, when I rounded the corner to go into her room in the NICU, one of our favorite nurses, our neonatologist, and one of our favorite OT's were standing by Seiden's incubator holding her...cord free!  I literally screamed out loud, ran over to them, and started bawling.  I was so overjoyed to see my sweet, 10 day old, baby girl completely free of ALL of her cords and tubes.  Well, she still had a feeding tube in.  But that was just in case she had any struggles with bottle feeding.  Keeping that tube in would be easier than taking it out and having to put it back in if an emergency arose.  My sweet girl who had been hooked up to a heart monitor, an umbilical IV, had a breathing tube down her throat, a feeding tube, a tube for drainage for congestion, and a closed suction drain tube with a bulb (which she actually came home with to prevent blood clots after surgery), and she was finally free of them and looked like a how a perfect little newborn had looked.  Except, she had overcome MUCH more than any newborn should have to.  She is my brave little princess and she has overcome every obstacle that's ever been put in front of her and just become the sweetest, smartest, most joyous little girl I have ever met.  What the devil tried to destroy, God has show up and given her (and us) grace, upon grace, upon grace.  And now, we get to go back to the NICU reunion and celebrate WITH those special people that got Seiden started off in life.  They are God's gift to us and exactly what we prayed for if she wasn't healed in my womb.  We love our NICU nurses and doctors and this is such a FUN time for us to get to go back and visit, celebrate, and just love on each other!

Pics from when Seiden was in the NICU:

Pics from our trip to the NICU reunion:

I think it's safe to say that we've come a long way and we wouldn't be where we are today if it weren't for the grace of God and for these amazing doctors and nurses that will forever hold a place in our hearts. #seidenstrong

Meeting with Dr. Heym (3-4-16)

Well, after several months of no doctor's appointments, it was time to move onto the next phase of Seiden's treatments and meet with her oncologist.  We had originally met with Dr. Heym on August 5th, 2015.  But, he wasn't ready to start doing the next type of intervention until she was completely done and healed from the sclerotherapy treatments.  With her immune system already being weaker because of the cystic hygroma compromising her lymphatic system, he didn't want to start her on a low dose of chemo.  That all made sense because chemo would inhibit her immune system even more, even though she would be on bactrim as well, which is a counter-active antibiotic.


Chemo is a scary word.  I remember when we first walked around the corner to the office where Dr. Heym is located in Ft. Worth in the Dodson Clinic.  I had originally been told he was a hematologist.  So, when I saw the word "oncologist" under his name, I almost lost my cool.  I tried to play it off, but my mom totally called my bluff.  A mom always knows her kids so well.  She could see it in my eyes and asked Dr. Heym for me if we were seeing him because they were fearful that Seiden's situation was going down the "C' word path.  He assured me that that couldn't be further from the truth.  But, the fact that everything that she has is lymphatic, chemo is just a normal form of treatment.


So, after we got through the cold/flu season and Seiden was fully healed from the last sclerotherapy treatment she had on November 9th, we called Dr. Heym's office to see where we go from our current place in time.  Obviously, before he put her on any sort of medicine, he wanted to see her for a regular visit.  Just to do a routine check-up on her to make sure all her vitals were normal and she was healthy enough to be on a new form of treatment, especially chemo.  We made an appointment to see Dr. Heym at the Cook's Specialty Clinic here in Abilene.  Dr. Heym is the first doctor Seiden's had from Cook's that came to Abilene every quarter.  We had the opportunity to see him in December of 2015.  But, Seiden was still so swollen and bruised from the last sclerotherapy treatment, and it was so close to Christmas, we just decided to wait and let her heal some more and enjoy the holiday season, doctor and medicine free.

Our appointment was at 8:30 on March 4th.  I took a half day off so that I could go and not be rushed.  Plus, I wanted to take her to get donuts and see my mom and come up to my school and meet my co-workers and some of my students after her appointment.  I try to make doctor visit days fun for her so that she doesn't dread them so much.  That sweet little angel knows exactly what's going on and I can only fool her for so long.  As soon as we pull up to a hospital or doctor's office, she knows exactly where we are.  Thankfully, this time, she had never been to this office before.  So, I just told her we were going to run an errand, then go get donuts, see Bella, and go up to mommy's school.  That was good enough for her and she believed me until we walked into the waiting room.  She knew exactly what type of waiting room it was and then told me that she didn't need to be fixed and she just wanted to go home.  Ok...seriously...tear my heart in two!  These are the kinds of things that just break my heart about all she's been through.  She plays with her babies and with us like we're at the doctor.  She takes everyone's temperature, draws our blood, listens to our heartbeat, drives her babies to the doctor in her shopping basket, etc.  But, then I also look at how blessed we are and that she is far advanced in her learning and development with all her speech and fine motor skills and that we have a sweet, loving, brave, strong, kind, caring, funny, smart, Jesus-loving little girl, and it makes it all 100% better.

Thankfully, what made this appointment be ok was the fact that she wasn't going to get any "pokies."  That's what we call blood draws and shots.  This was really just a consultation with Dr. Heym for him to talk to us about her situation and the pros and cons and possible side effects of the chemo.  Dr. Heym told us that it was really up to us as far as putting her on the medicine goes.  He told us that she looked really good and was looking more symmetrical even from the last time he had seen her.  But, that the medicine would also have a really high possibility to clear up any of those tiny, micro-cysts that were still lingering and couldn't be gotten with sclerotherapy.  At this point, she was almost 2.5 and we had always said we wanted to try and do anything for her before she started school.  Just because we wanted to give her the best chance for those cysts to be cleared up and for them not to swell if/when she gets sick when she's in school.  Plus, we didn't want to have to pull her out of school as much as we are now for doctor's appointments, treatments, and then time to heal from those treatments, if needed.  Because the dosage of the chemo would be so small, we decided to go ahead and give it a shot.  On top of the chemo, she would be taking bactrim, an antibiotic that combats the immune weakening of chemo.  Which, she already has a weakened immune system from the effects of all of the cystic hygroma, micro and macro cysts, and the multiple treatments she had already been on.  We would start her off taking .4mL and then she would go back in late April for a blood draw to see if her levels were on target for the medicine.  It was a decision we had prayed about and felt confident, once again, that God had laid this plan out in front of us when he put Dr. Mac in our lives when we met with Dr. Thomas in the spring of 2015.  If it weren't for Dr. Thomas referring us to Dr. Mac for the sclerotherapy through interventional radiology, and then Dr. Mac referring us to Dr. Heym for the chemo therapy, then we might still be at square one and not have gotten Seiden the help and the therapy that she needed to be where we are today.  We've always prayed for her to be healed.  And, if it weren't through miraculous healing, for medicinal healing through God providing us with doctors who would help her in the best, yet most non-invasive way possible, then we would follow God's path for her healing.  How could we deny what we had prayed for and what God had put right in front of us?  So, we went for it and are going to see where this new path takes us and our precious baby girl.  #seidenstrong