The Collier Family: April 2012

Whew...what a week! Early Tuesday morning (4 am) Anna woke up to eat and when I unwrapped her swaddle, she felt pretty warm. I decided to let her eat so that she could be unswaddled for awhile and see if it helped her to cool off. I woke Kate up and they both ate. After they finished, I laid Anna down so that I could re-swaddle Kate and then take Anna's temperature. As soon as I laid her down, she started screaming, which is not typical for the middle of the night. Phil came in since he had just gotten up (he had to be at the shop early because they were leaving for a race in Houston) and when he took her temperature it was 101.7. What??? Phil was about to go out of town for over a week and now I am supposed to take Anna to the ER in Atlanta?? I called Melissa and she came right over! Have I mentioned before how amazing she and the rest of my family is?? I packed my bag and my pump (remember....I just went through this TWICE a month ago...so sadly I knew exactly what I needed) and Anna and I rushed down to Children's just as Phil headed off to Houston. Thankfully, Melissa took wonderful care of Kate and took her over to her mother-in-law's house where she stayed the rest of the day and Tuesday night.

When we got to the ER, they did the same thing as before...took blood and gave her a U-bag (for a urine specimin) and then admitted us. I was pretty frustrated because it took them FIVE attempts to draw blood - poor baby!!! After we were admitted, they stuck her again to get an IV and began antibiotics. When she was admitted, her ANC (Actual Neutrophil Count) was 170 (down from 210 from our hemotologist appointment on the 17th). Later that afternoon, Christy, one of the AP's from school, stopped by because her son had an appointment at the hospital. It was so great to see her and so sweet of her to stop by! I briefly spoke with a hematologist, Dr. Harry, on Tuesday afternoon. I was not very excited about her and was hoping she wouldn't be the one we would see for the duration of our stay. When I asked her how long she thought we would be there, she said she wasn't sure since they didn't know if there was any infection.

On Wednesday morning, I was told that they found bacteria in her urine and that she had a Urinary Tract Infection (UTI). They changed her antibiotic to more specifically fight the UTI. At this point her ANC was 120. Knowing that she is Neutropenic, and knowing that she had a bacterial infection, I was a little more concerned than our last visit. From the time we were admitted, I began asking the doctor if we could arrange for Anna to have her ABR (to determine the extent of her hearing loss) while we were here so that I wouldn't have to come back for a separate appointment. I was pretty turned off by the doctor at this point (the same one I wasn't thrilled with from Tuesday), because she kept saying that the ABR wasn't a priority. I completely understand that helping Anna fight this infection was our #1 priority, but being able to have the ABR done while she was here would be so helpful - I wouldn't have to get someone to watch Kate, I wouldn't have to bring Anna all the way to the hospital, I wouldn't have to expose Anna to the germs at the hospital, we wouldn't have to run another IV...so many things would be easier if it could just get done NOW. I hadn't gotten much sleep at this point and being here while someone else watched Kate and Phil all the way in Houston was beginning to take a toll on me. Thankfully, Melissa came down to spend a few hours with me and it was a huge help! Not only that, but my AMAZING, HEROIC, REDICULOUSLY AWESOME mom flew up once again to stay at my house with Kate! I honestly cannot even imagine having gone through the last 5 months without her!

On Thursday, after seeing the doctor a few times at this point, I still wasn't getting very many answers. I got a phone call around lunch time from the scheduler for the audiologist who said we were going to schedule Anna's ABR for Monday because the doctor had called and said we would still be in the hospital at that point. What?? Monday?? At this point I was so frustrated. I had asked the doctor a few different times when she thought we might be going home and she wouldn't give me an answer. Now, I have to hear that we will be there until at least Monday from some random office person. I was not a very happy momma at that point. I was so thankful to have Melissa there again to cry with about everything! Thankfully, we had a wonderful nurse named Lauren and she made it possible for us to have Anna's ABR scheduled for Friday and they didn't even have to sedate her - they just gave her medicine that helped her take a long nap! Later that afternoon, when the hematologist came to talk to me, I shared how frustrated I was about the whole situation and how I hadn't gotten answers from her about how long we would be there, but that I had to find out from the scheduler. She apologized and seemed to soften a bit.

Friday was a day full of good news! Once again, my sweet sister came to the hospital and spent several hours with me. Days are very LONG in a hospital room with a 5 month old, so having company is so nice! After her first ABR, we thought Anna had hearing loss in both ears (bilateral hearing loss), but after her second ABR, we were told she only has hearing loss in her left ear (unilateral hearing loss)! She has a significant amount of loss in her left ear (loss that cannot be helped with a hearing aid), but the audiologist said we will not have to do any sort of implant or sign language to help her compensate. Since we are aware of it, we can just be sure to speak into her right ear and we will have to contnue to monitor her hearing and eventually monitor her speech development. We were THRILLED to get this news!!! While she was getting the ABR, the hematologist came by and said that the Neupogin had helped boost her ANC to 460! They were very encouraged by this and said there was a possibility we could go home on Saturday rather than Monday. The hematologist even gave me a high five at this point - not sure if she was just sucking up given that she knew she wasn't my favorite person...but I was happy that she was at least trying to be nice:) She said they were switching her antibiotic because the one she was currently on had a side effect of possible hearing loss and since she already had hearing loss, they didn't want her to stay on it (something they wouldn't have been aware of if I hadn't been so insistant about the ABR). We would have to adminster the Neupogin shots at home for a week to help keep her ANC level up. Finally, around 5:00 we were told that the results of the genetic tests were in. Unfortunately, they didn't give us the answers we thought they would. I think we must have misunderstood the doctors regarding what they were testing for. The genetic testing tested for 2 very serious syndromes, neither of which showed positive, for which we are very grateful. As far as what is causing the girls to be neutropenic, they don't really know at this point and until we see our hematologist on May 29, we probably won't have any more information. If they can test to see who's antibodies (mine or the girls') are attacking the neutrophils or if it is even antibodies at all, like we thought the previous tests were doing, no one has said. The bottom line is, the genetic tests are back and we don't know any more than we did before, except that they have ruled out 2 very serious syndromes. And so, we wait, again. We have an appointment with our regular hematologist, Dr. Briones, on May 29th, and hopefully we can get more answers then.

On Saturday morning, we got the word that we could go home! We were more than ready be out of room 2153. Hopefully we won't be visiting again for a LONG time!

So, what has the Lord been teaching me through all of this? Well, first of all, I am definitely NOT the one in control...He is! Those who know me know that I like to be in control. I like to have everything planned out quite far in advance and I like to know exactly how things are going to go. Well, if the last 5 months are any indication of the rest of my life, I better learn to give this up! The last 5 months has been exhausting and quite a challenge, but the Lord has been so faithful! My mom keeps reminding me that His grace is sufficient for TODAY! Not tomorrow or next week, but today:) He continuously provides for our every need - be it a meal, someone to swing by the store, or help with the girls. We are so blessed by the Lord through our family, friends, and church family.

I am also learning what it means to truly TRUST in Him and DEPEND on Him for strength. I could spend each day worrying that one of the girls will get a fever and will end up in the hospital again or wondering why we don't have any answers regarding the neutropenia yet. But what good would that do me... besides stress me out and tempt me to rely on my own strength?! I am learning to let go of my worries and trust that the Lord has everything under control. Having children has taught me so much about the love of my God for me. I now understand the unexplainable love one has for their children! I know how much I love my girls, so I can begin to fathom how much my heavenly father loves His children. If I would do anything for my girls and only want what is absolutely best for them, why would it be any different with God? I cannot do this without strength from Him...I am so very weak!

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:29-31

Phil and I pray with the girls almost every night and we always thank Him for the blessings they are in our lives. We have been down a fairly long and rough road, but we wouldn't want it any other way! God has not only blessed us with two beautiful little girls, but He has also blessed each of our relationships with Him and our marriage by allowing us to walk down this road - a road that He planned for us to travel from the beginning of time and that He will continue to walk along with us, sustaining us each step of the way.

We had a view of the garden from our window!

Today was a day we have been waiting for for almost a month now. We went to the hematologist hoping to find out the results of the blood tests...to see if the neutropenia is something that the girls will grow out of or if it is something that they will deal with their entire lives. To be honest, I hadn't been near as anxious about the appointment as I thought I would be. Everyone kept asking me how I felt and I always said I was fine. I knew that the results were what they were regardless of how much I worried about them. I knew that worrying about it wouldn't do anything but stress me out. So, I tried to stay busy. Twins will definitely keep you busy, but when you can't go anywhere or do anything, it is sometimes hard to keep your mind occupied. I kept praying for me and Phil and how we would handle the results rather than praying that God would allow it to be a condition that would eventually go away. I sort of felt like in praying this, it helped me focus on my trust in Him rather than my dependence on having things turn out the way I want them to. Even though the last 4.5 months have been ~~nearly impossible~~ difficult, I wouldn't want it to have been any other way because God has used it to grow me and to grow our family. He knows what is best for us, so I am not praying that He would change our circumstances, but that He would help us to trust and obey Him each and every day.

Patience
Unfortunately, the genetic test results haven't come in yet:( The hematologist said it could take 6-8 weeks, so we have another 2-4 weeks to wait.

Praise
At the appointment today, they drew blood from both of the girls and their neutrophil counts are up! When Anna went into the hospital, her neutrophil count was 0 and it is up to 210 (normal is 2500 and anything below 500 is considered severely neutropenic) and when Kate went into the hospital it was 120 and it is up to 780. We are engouraged and very thankful for this!

Prayer
Please pray for us as we continue to wait on these results. Please pray for the girls, that their neutrophil counts will continue to go up. For now, the hematologist said it is still necessary to take them to the ER at Children's at any sign of a fever, so please pray that the girls remain healthy and we won't have to visit the ER any time soon!