He is Still Good

     Ever since Breckin was born, we have wanted a third child. I know it sounds kinda crazy, as if we didn't have enough to deal with just with her. But, even when we were in the NICU with her, in the midst of so many overwhelming circumstances, I still pictured us having another baby. I imagined that we would have three little girls, with Breckin being our middle child. So, when she was a little over a year old, we started trying for another baby. At first, it was a little scary imagining another baby when Breckin was still a baby herself. But then, it became exciting, waiting every month until I could take a pregnancy test. However, the excitement started to just get frustrating because a year had gone by, and we still were not pregnant.

     We decided at that time to see a fertility specialist. She recommended we both undergo testing and labwork, which we did, and everything came back normal. She also recommended that I see Dr. BK, our high-risk OB that followed me throughout my pregnancy with Breckin. My visit with him was basically a set of statistics-how likely our chance of having another child born with a heart defect (2.5-5%), how likely it was to have a child born with Breckin's same brain malformation (about the same percentage), and how likely it was that we were to have a healthy, typically developing baby (about the same as anyone else). We knew the risks were a little higher for us to have another child with special needs or health problems, but this was the desire of our hearts, and we put all our trust in God. 

     Finally, we had our first IUI. This is a rather expensive procedure (several hundred dollars), but I had been working more, and we had the money saved up. It's also a simple, quick office procedure with no downtime, so we went for it. Throughout this whole process, I had been praying for God's guidance and wisdom; for Him to lead us down the right path, and for Him to go before us. We both felt right about this decision, so we continued down the path. Unfortunately, two weeks later, I got a negative pregnancy test, and plans were made to do another IUI the next month.

     This next IUI, however, did not feel right. The finances weren't there, the timing wasn't right, and I just felt uneasy about going through with it. So, I called and cancelled it. I was disappointed, but I immediately felt a peace about the decision. Later that same day, I was scrolling through Instagram and I saw a post that just said,"If not, He is still good." I realize that a quote from someone, though inspired by the Bible, is not as good as God's truth. But it was still a good reminder that even if things don't go your way, God is still good. 

     So, the next month, it was a few days past my normal cycle time, but I didn't think anything of it. We didn't do the IUI, so we couldn't be pregnant-I was just late. After another day, I took a pregnancy test and it was positive! God had answered our prayers, and He chose to do it all on His own. He didn't need any medical procedure to perform this miracle! Josh and I were over the moon, but we wanted to keep it a secret from our families until we went for our first ultrasound. So at seven weeks pregnant, I had my first ultrasound.  Josh was running late, so it was just me in there with the ultrasound tech. As I watched the screen, I didn't see the familiar heartbeat sign. The tech was silent for several minutes, and I knew from experience that this was bad news. She told me that she only saw a gestational sac, measuring 5 weeks and 5 days, but no baby. She told me that sometimes this happens if your dates are off, and you're not as far along as you think. But I knew my dates were not off. This baby didn't make it.

     I had to relay the news to Josh when he arrived, and we both just sat in silence. I was crushed, and angry that we were losing another baby. Two days later, I was helping to lead children's worship at church, and we led them in the song, "Good, Good Father." Again, another reminder that God is still good! However, it was very difficult for me to accept that right then. That first week was terrible, and I struggled with accepting God's goodness, and accepting that this was His perfect plan for me. But eventually, after several days of grieving, I gave everything back over to Him. We had an altar call at church that Sunday night, and I laid my burdens at His feet. I immediately felt a peace after doing that, and just felt relief wash over me. 

     Several weeks later, I went back to that Instagram post, and looked up the passage of scripture that inspired that particular quote. It took me to the book of Daniel chapter 3-the story of Shadrach, Meshach, and Abednego. They were three Jewish men who were not worshipping the golden gods that King Nebuchadnezzar had set up; they worshipped the one true God. King Nebuchadnezzar made the proclamation that anyone who did not worship these gods would be thrown into the furnace to die. The king confronted the men and they told him that the God they serve would save them from the fiery furnace. But, that even if he didn't, they would still not worship the golden idols. Anyone who knows this story knows that they did get thrown into the furnace, and that God did indeed save them. However, they were still willing to worship the Lord and honor Him even if He didn't answer their prayers in the way they wanted Him to.
     I still believe that God is good. Some days it is harder than others to believe this, but I know it to be true. Josh and I still have a desire for another child, and that continues to be our prayer. I may never know or understand why God has allowed us to experience the loss of a second baby, but I do know that He is good, His plans for us are perfect, and He can still be trusted.

Love,
B

   

    

Letting God Lead

     I want to share a little story on here of a recent doctor's visit. So, we have been followed by a certain ENT doc since Breckin was born. She has put tubes in her ears twice, and is scheduled to do Breckin's cleft palate repair this summer. However, all through these visits, something just kept tugging at me making me unsure of her. We haven't really had any issues with her, she has great bedside manner, and she has been very cautious this whole time with Breckin, considering her heart defect. Just recently though, I have come across a few moms whose children had their cleft palates repaired by Dr. Wallace, a plastic surgeon. They highly recommended him. One of the moms even told me about this cleft clinic that involves a panel of doctors that sees your child.
     All through our time with this ENT doctor, we were never told about a cleft clinic, and I came to find out that she is even one of the doctors on the cleft team! So, with Breckin's surgery continuing to be pushed back for one reason or another, I thought this would give me a great chance to seek a second opinion. So after much prayer, I decide to call and make an appointment with Dr. Wallace. Shortly after that appointment was made, Breckin had her second set of tubes put in by this same ENT. Everything went great, she answered all our questions, and we even talked a little bit about the upcoming cleft repair. So I left that surgery thinking, Hmm, maybe we don't need a second opinion. Maybe we'll just stick with her. I continued to pray for wisdom, because I felt like I was just not getting a clear answer on what to do.
     Fast forward to a week before the appointment. I am seriously considering cancelling the appointment with Dr. Wallace when I see a friend at the gym that just so happens to be a nurse at LeBonheur. The topic of Breckin gets brought up and I just casually mention the ENT doctor that is scheduled to do Breckin's cleft palate surgery. My friend looks at me and says, "You need to see Dr. Wallace." She tells me that she has just seen higher complications from our ENT doctor's patients. She told me if it was her child, she would get Dr. Wallace to do the surgery. Finally, I felt like I had a clear answer! I felt a total peace about keeping the appointment now because I felt like this was the wisdom I had been seeking.
     So Breckin and I show up to the appointment, and who walks into the waiting room? Our ENT doctor! Talk about awkward! I think we both try to play it cool, she says hi, I say hi. Then she tells me she will be presenting Breckin's case to Dr. Wallace. What?! We are finally called back, and a whole team of doctors and nurses all walk into this exam room at once. Our ENT doctor takes the lead, and gives Dr. Wallace some facts about Breckin, gives him her plan, and then she asks me if I have any questions or concerns. Uh yes I do, I have questions and concerns about you! I was dumbfounded. I felt completely backed into a corner. There was no way I could state my concerns in this setting with all these doctors in the room. Dr. Wallace pretty much said ok sounds good, we'll follow up in a year once your palate is repaired. The visit was less than five minutes and all doctors walked out the door and we were free to go.
     I left there that day feeling angry, upset, confused, and completely defeated. I just prayed to God asking again for wisdom. I felt like He lead us there, and then we just completely hit a dead end. After some prayer, I talked to my husband and a couple friends to seek some Godly advice. They all suggested I call back and talk to his nurse to try to make her understand the situation better. So, that's what I did. Thankfully she called me back the same day, and when I explained the reason for us wanting to see Dr. Wallace, she completely understood. She told me that when I initially called to make the appointment, there was a miscommunication. She thought I wanted to be seen by the cleft team, not to see Dr. Wallace for a surgery consult. So, we made another appointment with Dr. Wallace only, and we will see him at the end of this month.
     Every step of Breckin's journey has to be completely covered in prayer! There are so many doctor's visits, surgeries, procedures, therapies, medications, etc. that are part of her life. And I make it a priority to take everything to God. I want Him to lead us every step of the way. So, with this particular situation, I struggled because I just wasn't getting clear answers. I was consistently praying for wisdom and guidance, but it just has not been an easy situation. I completely believe that God led me to that friend in the gym that day to say the exact words that I needed to hear. I also know that just because God leads you down a certain path, it doesn't mean it's going to be a smooth ride.
     So now with a new appointment with the specific surgeon we want to see, I feel like I will be able to voice my concerns, and I will be able to get my questions answered. I'm sure I will be put in awkward and uncomfortable situations in the future with our ENT doctor, but I want my daughter to have the best care possible. This is a major surgery, and just being a nice person does not ensure that a surgery will go well. So if you think about us, please pray for this upcoming appointment and for continued guidance throughout this process. Your prayers, as always, are greatly appreciated!

Love, B

Life Lately

     I hate waiting so long before I write a blog post. I feel like we have gone through so much and I have gone through so many emotions since I last wrote. I also feel like I have learned a lot too. Maybe my new year's resolution should be to set aside time every week or at least every month specifically to write. We'll see how that goes ;)
     Since I last wrote, Breckin was supposed to have had her cleft palate repair. However, it was cancelled due to a cough and nasal congestion that she had been battling for weeks before the surgery. We did everything we could do to get rid of it, including putting her on two weeks of an antibiotic. The day the surgery was postponed (a day before her scheduled surgery), I was an emotional wreck. We had been planning and preparing for this surgery, and we had met our huge deductible for the year! So, for it to be postponed until the next year was a huge disappointment!
     The only thing that got me through the next few days was reminding myself of God's sovereignty. There was no way I was going to understand why any of this was happening-why she was born this way, why she had to have surgery, why she had a cold, why her surgery was postponed. I just kept reflecting on verses in the Bible that speak of God's ways and plans being higher than mine, of His purpose being greater than mine, and of his timing being more perfect than mine. One of the verses I meditated on during that time is Isaiah 55:8-"For my thoughts are not your thoughts, neither are your ways my ways." I was not particularly pleased with my situation, but I find my comfort in knowing that God knows what's best.
     Now in hindsight, it probably was a good thing Breckin didn't have her surgery as planned. Her "cold" made a turn for the worse the weekend before Christmas. That Friday morning, after a restless night of what seemed like non-stop coughing, we took her to her pediatrician. Her breathing was labored, she had fever, and her oxygen level had dropped into the 60s. Our pediatrician called an ambulance, and I rode with Breckin to Lebonheur hospital downtown. At the hospital, they ran several tests, did some bloodwork, and got a chest x-ray. Thankfully, RSV and flu were negative, bloodwork looked good, and chest x-ray only showed an upper respiratory infection. However, she was still pretty sick and was requiring 10 liters of oxygen just to maintain her saturations in the high 70s. By the grace of God, she quickly improved, and we got to go home only three days later. She was still sick, but we didn't have to go home on oxygen, and we got to enjoy our Christmas at home as a family!
     Breckin is much better now, and only coughs every so often. As far as surgery goes, her cleft palate repair has now been pushed to June of this year! Our ENT wants all the flu and cold germs to be gone before attempting this surgery. However, we will have a minor surgery on Valentine's Day. She is requiring tubes in her ears for the second time. So, we are still trying to keep Breckin pretty isolated and trying not to put her in the nursery or settings where she will be around a lot of other children. A simple cold that a typical child gets can land Breckin in the hospital!
     We also saw the audiologist when we saw ENT, and she gave me a tiny lecture on Breckin wearing her hearing aids. I honestly had just stopped putting them on her. I felt like she could hear fine, and it was just a hassle to put them in, take them out for naps, baths, bedtime, etc. Then keep them clean and replace the batteries every few days. However, the audiologist let me hear an example of how Breckin hears compared to how we hear. She played a recording of a conversation at a normal talking level. Then she played what Breckin hears, and it was like the volume on the conversation was turned way down. So yes she can hear, but it's at a much lower volume than normal. Since Breckin is really starting to imitate words and talk more, it's important for her to be able to hear us say these words clearly. So of course I had some mommy guilt after this, and immediately went home to get her hearing aids ready to wear.
     Breckin's biggest milestone lately is standing on her own! A couple weeks ago at church, Josh was out in the lobby with her (since we're trying to keep her away from the nursery), and she just started standing. He tried to help hold her hands, but she pushed him away. When I got out of the service, he showed me what she could do, and I burst into tears! I was so overwhelmed with joy and amazement! God truly is so good, and can do way more than I could ever imagine!
     Breckin is also saying a few words, mostly people's names. She has been saying "mama" and "daddy", but now she says "Ha-ha" for Harper and "ah-ah" for Avery, her little cousin. She says several other words that don't quite sound like the word it's supposed to be, but I know what she's saying. Most of her words just don't have the correct beginning sound, but this could be for many reasons. It could be her lack of sight, her cleft, or the fact that she can't hear the words clearly. So once she starts wearing her hearing aids regularly, and after her cleft repair, I can imagine she will be talking much more!
     It's amazing to think that right after Breckin was born, I had no idea if she would be able to talk or walk. Now, I feel like those things are not only possible, but are right around the corner! As challenging as Breckin can be at times, it is so worth all the struggles to see her consistently meet these milestones. The joy she brings to our lives far outweighs the pain!

Love,
B
   

 She had so much fun opening gifts on Christmas

 Playing with her sweet cousin

 She loves rocking babies

She is so loved by her big sister!

I tried like ten times to upload a video on here of her standing, but never could get it to work! So, if you follow me on facebook, you can find it on there :)