Giving Thanks

     Today I picked out the color and style of my daughter's hearing aids. A few weeks ago, Breckin had her fifth hearing test since being born and this one was supposedly the most definitive. It showed that she has mild hearing loss in both ears with her left ear a little bit worse. We saw our ENT today and she gave us the go ahead to start getting Breckin fitted for hearing aids. When I first heard the news a few weeks ago that Breckin would need hearing aids, I was saddened. I realize that it's only hearing aids, and it's not like she's deaf, but the thought that went through my head was, "Can one thing on my child not be normal!?" This girl is already going to be different, and seeing hearing aids on her ears is just an obvious sign that she is not like other children.
     After my tearful drive home, and a couple tearful days later, I began to just be thankful for Breckin's hearing aids. The bible verse that has constantly gone through my head this past year is 1 Thessalonians 5:18: "Give thanks in all circumstances; for this is God's will for you in Christ Jesus."It says it all right there in that verse. God's will for me is to be thankful in all circumstances. I know I have written a blog post about this verse before, but it is so applicable to anyone's life. I am so thankful that Breckin can hear and that she will be able to hear even better with her new hearing aids. I am so thankful that she won't have to wear boring old-man hearing aids, because I picked out some cool pink ones with sliver sparkly ear pieces :) I am so thankful that we have met our deductible for the year so these expensive hearing aids will be paid for 100% by our insurance company.
     I didn't really intend to write a blog post about being thankful on the eve of Thanksgiving, but it just sort of worked out that way. This whole year has been one trial after another, and I have a feeling the rest of our lives with Breckin will be a continuous stream of trials. However, I have learned the secret to getting through these trials is #1: Be thankful to God in everything no matter how bleak and hopeless things seem. And #2: Know that God is sovereign! He sees the whole story from beginning to end.
     There's a song by Casting Crowns called "Just Be Held" that totally speaks to me in my life right now. It doesn't really have anything to do with being thankful, but it does speak on God's sovereignty. I was just going to put the lyrics of the chorus, but after reading all the lyrics again, I just felt the whole song was important to know. I hope these words bless you like they have me. I've actually had to listen to this song several times to really get it all. The part I like most is the line that says, "Your world's not falling apart it's falling into place. I'm on the throne stop holding on and just be held." Happy Thanksgiving!

Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go

-B

May God's Work Be Displayed

     We took Breckin to her third and likely final eye doctor a few weeks ago. After she was born, she got an MRI of her brain and this showed that her optic nerve was not formed on both sides. The eye doctor at LeBonheur told us there is no hope for vision, but encouraged us to get a second opinion. So, we did and saw Dr. Byrd. She pretty much said the same thing after examining Breckin's eyes and viewing the MRI. However, she said she would consult a retina specialist, and this was the third eye doctor we just saw.

     This doctor did an ultrasound of her eyes which is done just like they do over a pregnant belly. He put the clear goop over her eyelids and ran the wand over each eye. This exam took less than a minute which pretty much told me he knew what he needed to know right away and didn't need to look any further. He told us for the third time that Breckin is blind. We had heard this several times before and pretty much knew that she was, but there was something so final about hearing it from him.

     When we were told this in the hospital after Breckin was born, it was probably one of the worst days of my life. My brand new baby who I knew had a serious heart defect and a brain malformation would also be blind? I just could not imagine that this was true. I struggled for several days with this and was very depressed because of this news. However, God like He always does, changed my perspective on things.

     Through everything we have gone through with Breckin, I have constantly had to remind myself that God is sovereign. I struggled so much with wondering why God would create Breckin the way He did. A passage of scripture in John 9 was recently brought to my attention. It is a story of a man who was born blind. Jesus' disciples asked him why this was so. They thought the man or the parents of the man were perhaps being punished for some sin. This was Jesus' reply: "...but this happened so that the work of God might be displayed in his life." (John 9:3) My hope and my prayer is that God's work will be displayed in Breckin's life. 

     I personally see God's work in her life every single day, but I pray that others will be impacted by her life as well. Because of Breckin's lack of vision, there are definitely challenges she will face. Teaching her to eat, talk, crawl, and walk will be difficult because she can't imitate others. She doesn't have the main motivation that other babies do: seeing something and wanting it. I initially thought Breckin would never smile because she would never see anyone smile. Now, she smiles nearly all day and even laughs a lot. I thought, how is she going to know how to eat. She can't see the spoon with the food on it coming towards her mouth. But, she opens her mouth when she hears me say, "more." She instinctively puts her arms out when she is placed in a new setting to feel what's around her. When I give her her paci with her frog attached to it, she moves it around to position it so the paci goes right into her mouth.
     These are just a few of the things that Breckin does that amazes me. Because I have seen how God's work is being displayed in her life, I had a peace when the last eye doctor confirmed that she was blind.  I don't even want to think about the challenges that we will face as Breckin gets older, but today she is a happy little baby who can do almost anything any other baby can do. She just has to do things a little differently. My daily prayer for this sweet baby is Phillipians 4:13: that she can do all things through Christ who strengthens her.

Love,
B

 Big grin!

Pushing up to crawl

Sitting up like a big girl 

     Holding on to the arms of her chair

We Have This Moment Today

     So I was going to write this blog post about moms who seem to be able to do it all. Lately I have been feeling a little less than adequate in the mom department. It's not so much that I haven't been a great mom to my children, but it's all the extra qualities that moms around me seem to possess where I don't measure up.

     I see moms with multiple children who are able to be on time to events with their children looking adorable in the latest fashions. There are mothers all around me who not only remember teacher appreciation week, but also manage to find the time to deliver a hand-made gift. These are also the moms who would never pay school tuition late, always remember to turn in necessary forms on time, and pack super nutritious lunches which their children actually eat. 

     For birthdays, whether they be for a child or adult, a gift from us is usually bought the day or morning before the party and stuffed into a bag we have lying around the house with our name scribbled on the front so they know who it's from. I am not the mom who has thought several weeks in advance of the birthday and has special-ordered a personalized gift to be wrapped in cute paper and then has a custom-made name tag attached with their child's name on it. 

     These thoughts have been running through my head lately and it seems like the more I think about them, the worse I get with trying to be better at these things. One such evening occurred this past weekend. Josh and I went out to dinner with the girls to Genghis Grill. I packed the diaper bag with everything I thought we could possibly need for Breckin. I even mixed her formula bottle and thickened it in the car while we were stuck in traffic, and sat in the back seat to give it to her while she was in her car seat. I thought, I'll get a head start on feeding and will be able to actually sit down and enjoy my meal once we get to the restaurant. 

     Well, of course things don't ever go as planned in our life. I finished giving her the bottle shortly after we sat down and began to get everything ready to feed her through her feeding tube. I thought I had the tube attached correctly, and it wasn't until the first few pours of formula, that I realized everything was soaking wet! The milk was not going into her belly, but all over her and the car seat. Meanwhile, Harper was sitting next to me bouncing up and down in the seat and trying to get me to help her with a maze she was trying to do on her kids' menu. Josh had already gotten his food so he was eating and trying to get Harper to settle down.
     A few minutes into this chaos, an older gentleman walked over to our table and was commenting on how beautiful our daughters were. He then began to tell us that the only moment we have guaranteed is the moment we are in right now. He said we are not promised tomorrow, so we need to cherish the time we have. He told us his children are grown now, but it seems like yesterday that they were little like ours. The man then asked us if he could sing us a song. It seemed a little strange sitting in a loud public place for an old man to serenade us, but sing he did. He sang us a Bill Gaither song called "We Have This Moment Today" and it nearly brought tears to my eyes. The song echoed the words that he was just telling us.
     After he left, I began to look at our dinner time a little differently. I was happy to show Harper how to get through her maze, and found the feeding situation with Breckin quite humorous. After we finished eating, the man, who we came to learn was named Walter, came back to our table once more. He asked us to tell him a little about Breckin's health problems. After giving him the short version, he asked if he could pray for her. He laid hands on our sweet baby and prayed for her healing in the name of God. He told us to never give up on her and to continue to pray for her healing and filling her with positive words. He told us that God has given these children to us as a gift and that we are also a gift to them. He said to always tell these girls how beautiful they are. As he left for the final time, he told us that this would be one of those moments in our life that we would never forget. He was right about that.
     Since this meeting with Walter, I have worried less about what the other mothers around me are doing. I have concentrated on enjoying each moment with my children. If that means the house isn't clean, a perfect, well-blanced dinner isn't cooked, or my three-year-old's outfit doesn't match, then that's okay. I do admit that my life could use more organization, and that is something I am working on. God does want us to live orderly lives, and I think with a little extra organization and planning in my life, I can get a little closer to achieving that.
     I give major props to moms who can do it all, but I hope they realize that it's okay if everything is not perfect. Enjoy these beautiful babies that God has given to you, and take your job as a mommy seriously. Walter was right; we are not guaranteed tomorrow, so make the most of the moment you have right now. Teach these children the important things in life: to love others no matter how different they are, and most importantly to love Jesus who loves your children more than you ever can!


~B

 My sweet girls

My attempt to start the organization process

Our Normal Life

     When Breckin was born and in the hospital, I never would have imagined I would one day be writing a blog post with the word "normal" in the title. But, here I am 7 1/2 months down the road, talking about our normal life. Everyday, I am so thankful for the normalcy in our days. When I load up the girls to go grocery shopping, take them swinging at the park, or play with them in the pool, I am so grateful to get to do these things with them. When the four of us go out for a family dinner, or go for a walk around the neighborhood, I feel so blessed.
     Breckin had a cardiology appointment the other day, and her doctor commented on the fact that I had a tan. He said that was a huge thing because it meant I was actually able to get outside and live life. He had a resident with him and he explained to her that the first six months of a heart baby's life is very difficult, causing much stress and a lot of work on the parents. I told her this was definitely a true statement, but I am finally feeling normal again. I've been able to get out to the pool, go running three or four times a week, and spend a little time with some girlfriends. Can you believe I have even made it through a couple books this summer?!
     From the outside looking in, things with Breckin would probably not all be considered normal. Instead of making a bottle for her to take every few hours, we make a big batch of formula every morning to give in her tube feeds throughout the day. When we are able to give her a bottle, which is twice a day, we have to thicken her formula and even when she does sit and suck for 20 minutes, she takes only a little over an ounce. We are thankfully able to give her baby food now, but it's only once a day, and she takes about a teaspoon of food total. She has a standing appointment every week with a speech therapist and a developmental therapist who come to our house for an hour to work with her. Playtime consists of touching and feeling her toys, and listening to the sounds and the music. There is no "look at that, Breckin," or "ooh see the pretty colors."
     However, she gets eating time, playtime, and nap time just like any other baby. Every time she does a "normal" baby thing, we get so excited. In the beginning of Breckin's life, we had no idea what to expect. We had no idea what kind of quality of life she would have. However, I am here to say that she has an amazing quality of life! She is a happy, playful, interactive little baby. Every smile, laugh, and coo brings my husband and I the greatest joy. She rolls over, lifts her head, is almost sitting up unassisted, uses both hands to play with toys, and puts weight on her legs. All these simple little developmental milestones are huge leaps for Breckin!
     I do admit that when I see a baby look at their mom's face and smile, or suck down an 8 ounce bottle no problem, I get a little sad. These are probably two things my daughter will never do. However, she is exactly the way God meant for her to be, and I praise Him for this. I am constantly reminded of this in Psalm 139. This psalm was in my devotional this morning and it always makes me think of my sweet Breckin when I read it. The part that stood out to me this morning was verses 15-16: "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body." How could anyone read these words and not know that they are exactly who God wants them to be?
     I am thankful right now that God has given us a normal family life. I know there will be more days down the road where the stress and hard times will come. However, this is where we are now, and I am enjoying every minute of it. I sing the song, "God is So Good" to my daughters frequently, and it is a simple truth I want to instill in their lives. Even when things don't appear to be good, God is good!

Love,
Brooke

 This girl loves the pool

 Can't get enough of her sweet smile

These sisters have had some fun this summer

29 Days

     It has been a while since I've last posted, but I must say I've been a little busy. On April 21, we checked into LeBonheur Children's Hospital in preparation for Breckin's second heart surgery, the bidirectional Glenn. We had been preparing for this surgery pretty much since we left this same hospital in January. We have been documenting Breckin's oxygen saturation, monitoring her continued fatigue throughout the days, and continuing to see her cardiologist in his outpatient clinic. Finally, the day was here that we had been waiting for, praying for, and quite honestly dreading. We had settled into a routine. Breckin was sleeping through the night, and learning new things, like making different vowel sounds, holding her head up, and rolling from her back to her side.
      On April 22, after a few short hours, Breckin was out of surgery and recovering well. The surgeons came and spoke with us and said the repair went great and there were no complications. We were told we would have a five to seven-day hospital stay, and then would be heading home. Well, we knew that based on our history with our little girl, we would probably not have the conventional week-long stay like most patients. We were thinking maybe more like ten days to two weeks.
     Six days after Breckin's surgery, her condition started to deteriorate pretty rapidly. She spiked a 102 degree fever, her oxygen saturation was dipping into the 60s and not recovering even while on oxygen, and she was very agitated and pretty much inconsolable. We were woken up from sleep by our nurse, telling us that they were going to have to reintubate Breckin. They had tried every other measure to avoid this, but it had to be done to keep her alive.
     After a few hours, our surgeon and the attending cardiologist spoke with us and told us that they were taking Breckin into the cath lab. Her echo showed that her heart function was not great, and they were worried that her coronary artery could be the problem. The doctor that would be doing her heart cath told us that if it was the coronary artery, this could be a tricky situation since hers is about the size of a hair. When the anesthesiologist came to get Breckin, he looked at her sats, looked at me, and said, "This is serious." He told me she could stroke out, have a heart attack, have brain damage, etc. because she was so unstable. Then, I heard the words, "septic shock," and "ECMO." For those of you that don't know, ECMO is a machine that does the work of the heart and lungs.  It is basically a last-ditch effort for babies to survive when all other means have failed.
     There was a moment in that hospital room, when I was watching all these people around my baby, that I thought I was going to lose her. This was the second time in Breckin's short life that I was preparing myself to not be taking her home. I know that God is faithful and has a plan for her life, but I also know that she is ultimately His child. He gave her to me to care for, but He can also take her away. I was wanting to believe that He would bring her through this, but I also wanted to be realistic and prepare myself for the worst. After I had a chance to process all this, I posted an update on facebook so that I could get as many people praying for Breckin as I could. I cannot even tell you the amount of prayer warriors that came together to plead with the Father on her behalf. My post alone was shared by 30 people! God heard everyone's prayers and was in control in that cath lab.
     The doctors came to talk to us after the procedure was over and said that Breckin did great! She maintained her oxygen level, and there were no complications. They said her coronary artery was normal, and the heart repair from her surgery looked perfect! I silently praised Jesus, and then I hugged Dr. Kumar and thanked him profusely for the good news. I was truly overwhelmed by the peace that I felt and I could not send up enough praise to the Lord. I knew that Breckin was going to be okay, and that we would be taking her home.
     She still had a tough road ahead of her due to her getting a urinary tract infection and pneumonia. They later discovered that these infections were what led to everything going downhill. Two more weeks were spent in the cardiac ICU, and finally the day came when Breckin could be transferred to the floor! I have to say, I was a little sad. The nurses had taken such great care of Breckin, and of us. I just felt like they had come to know us, and we had gotten close to several of them. I knew this was the next step towards getting us home, but I would definitely miss everyone in the CVICU.

     After 29 long days, Breckin's hospital stay was finally at an end! Her stubborn left lung kept us there another week on the floor, and we had to go home on oxygen. However, we got to go home! One of our surgeons told me on the day of discharge to just take my baby and run-before anything else happened to keep us there. I was almost so exhausted that I couldn't even be excited. It was more than just sleep-deprivation, although that was a big part of it. But, it was mentally, emotionally, and spiritually exhausting to go through so many ups and downs. 

     Although this hospital stay was tough, it has truly made me appreciate so many wonderful "normal" parts of our life. Just being a family of four and seeing my two girls interact with each other, is amazing to me. I just bask in the everyday, mundane details of our lives, because for so much of Breckin's life, it has not been this way. 

     I truly feel so incredibly blessed to have this precious baby girl as part of our family. She continues to amaze me every single day. She has been through considerably more in her short five months than most people will go through in their entire life. Despite all the obstacles stacked against her, she continues to smile through the days. God has truly blessed her with so much more strength than I probably ever will have. This little girl is my hero, and I still cannot believe that God picked me to be her mom.

Love,

Brooke

     Right after surgery

    On the mend

    The sweetest little sisters

    Going home!

Gratitude

 "Give thanks in all circumstances for this is God's will for you in Christ Jesus." (1 Thess. 5:18). I posted this verse on my refrigerator a couple weeks ago so that I would see it everyday. I have to remember daily to be thankful for every situation in my life. Some days this is easier than others, but it's amazing how just remembering to be thankful can completely change your attitude. 

    Just recently we spent two separate occasions in the ER at LeBonheur because Breckin's feeding tube came out. One time it was in the middle of the night so we spent 11:00pm-3:00am at the hospital, and the next time it took up our whole Saturday afternoon. In these situations though, instead of complaining, I tried to be thankful. I was thankful that I have a supportive husband to accompany me to these visits, and we actually used the waiting time to have some quality time together. I also was so thankful that we were only there with Breckin for something simple and not because she was sick or injured.

    Throughout this whole flu and RSV season, I have been so thankful that Breckin has stayed well. She spent 6 weeks in the hospital and had two surgeries while there and she stayed well. She never had any type of infection, virus, or even a cold. That is something to be thankful for even with a heart-healthy child! 

     I am so thankful for health insurance! Our LeBonheur stay in the NICU was an astronomical amount well over a quarter of a million dollars, and that was just the stay itself. That didn't include all the tests and labs and all the doctor's and surgeon's fees. Yes we have a high deductible, but that is nothing compared to what we would be paying if it weren't for insurance. I am also so thankful for the many many monetary contributions and gift cards from loved ones near and far and some people I don't even know. This has enabled us to pay bills, get groceries, buy diapers, and get Breckin's medications. God has completely provided for every one of our needs and it's amazing to see how he has worked through others to meet these needs.

     Everyday, I am thankful that Breckin has her feeding tube so we don't have to worry if she is getting enough nutrition. She may not be able to take all her milk by mouth, but we can give it to her this way. I am thankful that she has started to sleep through the nights most evenings. From everything I read before she was born, most heart babies aren't sleeping through the night for their first year. I am also so thankful she's gaining weight. This is another thing heart babies sometimes have a hard time doing, but she is steadily gaining and I'm loving all those fat rolls!

     I am also so very grateful to have such a supportive family, especially my husband. We make a great team, and I honestly don't know what I would do without him. He is very proactive in Breckin's care and it is so nice to be able to share the responsibilities with him. During the nights where Breckin wakes up several times, we usually take turns getting up with her. We may both be tired the next day, but at least we can both understand how the other is feeling. It's also nice having another person to help get the girls ready for bed at night and ready for church or school in the morning. I am in awe of all those single moms out there!

     It sounds crazy, but I am grateful that Breckin is able to undergo heart surgeries. There are babies who are born with her same heart condition whose hearts are too weak to withstand surgery. Their only hope for survival is a heart transplant. They then have to just wait for a heart to become available and in the meantime a lot of these babies are just "living" in the hospital for a while. So I am thankful that as many defects as Breckin's heart has, her heart is strong enough to withstand the repairs that it will need. 

    I could go on and on with so much more that I am thankful for, but these are just some examples of the things I am grateful for on a daily basis. New things constantly pop up in my day and no matter how negative or frustrating or unfair they seem, I try to be thankful for whatever comes my way. I know that God is sovereign and that He is good!

Love, 

Brooke

                Harper is such a sweet big sister

     

   

                                               Loving the smiles!

              Just want to squeeze those chubby cheeks!

Experiencing Joy Through The Trials

    It has been four weeks now since we have come home from the hospital, and I feel like we are starting to settle in a little to our new normal. I won't lie to you though. The first two weeks after coming home, especially the second week, was pure awful! Breckin was fussing all the time. If she wasn't sleeping, she was crying. She was also up at night every couple hours and very difficult to console. It seemed like all she wanted was to be held all the time! It was taking us hours to feed her because we could not get her settled down to take her tube feeds, and she would push all her feeds back up her tube. We were sleep-deprived and dealing with a difficult baby on top of that. Everything about caring for Breckin was hard. Everything.
     I finally took her to the pediatrician and she put her on Zantac for reflux and a probiotic. I can't say that either of these things has been a life-changer, but things have definitely improved. Breckin is still waking up at night, but she does sleep about 4-5 hours at a time. Josh and I usually trade off getting up for the middle of the night feed, so we seem to be getting more sleep. She still is just a fussy baby. She hates being messed with. Changing her diaper, bathing her, and changing her clothes is not a pleasant experience for any of us. She also fights the bottle about every other feeding, and sometimes only takes a few milliliters of milk. Thankfully, we don't have to fight her to give her meds because we can give them in her tube. She is currently on four meds and a multivitamin, plus gas drops when needed. One of her meds is an antibiotic for a skin infection around her tube site, so this one will be gone in a few days.
     It's not like much has improved greatly since we got home, but I think the biggest thing is how God has changed my heart. I was not experiencing joy. I was not seeing this child as the blessing that she is. I would actually say out loud several times a day, "I can't do this!" And if you know me, that is not my nature. I am a strong-willed no-quitter person. I don't allow Harper to say the word "can't." To me, that is a curse word. When I set my mind to something, I accomplish it! However, I was relying on my own strength to handle things, and not giving it to God. I was not spending time in His word to get charged and fueled for the tasks of the day. So of course I felt like I couldn't do it. because I couldn't. I needed the Lord for strength!
     One morning I listened to one of our pastor's sermons from a while back entitled, "Faith in the Midst of the Storm." The sermon focused on the passage in Luke chapter 8 where Jesus and his disciples were in their fishing boat in the middle of the sea when a storm erupted. This is a short passage, but it has been a life-changer for me. I will never read this story the same way again. Brother Chuck made so many parallels to these verses that are so relevant and applicable to anyone's life today. I encourage you to listen to this sermon. It will change your way of looking at life's challenges. I learned from this passage and his sermon that I have to let Jesus come with me through the challenging times. I must abide with Him every single day by spending time reading the Bible and talking to Him. I also learned that going through a storm should be a time when my faith should grow. God's ultimate purpose is for my life to be conformed to that of Jesus Christ. I shouldn't allow this challenging time to come between me and the Lord, but to bring us closer. I need to see this time as opportunity for personal growth and as an opportunity to be there for others when they are going through a tough time.
     I do not know how I would make it through each day without Jesus in my life. If you are reading this and going through a storm in life, cling to the Lord. See this as a time to strengthen your faith and to be thankful to God for letting you go through this because of what He is going to accomplish in your life. If you are reading this and you do not have Jesus in your life and do not know Him as your Lord and Savior, I encourage you to let Him in. He knows that we are all sinners and not worthy of His love, but He gives it to us freely. He wants a relationship with us and wants us to spend eternity with Him in heaven. All we have to do is admit that we are a sinner, believe that He saved us from our sins by allowing His only son Jesus to die on a cross for us, and surrender our lives to Him.
     People have asked me how I go through this and deal with hard times like this and this is how. It is because I have accepted Jesus Christ as my Lord and Savior and commit to living for Him. That doesn't mean that life is going to be easy, or that it is ever easy to completely trust Him and live for Him. It is something that I have to constantly work on everyday, but it is so much better with Him! I can actually say I have true joy despite my circumstances, and that is something that I wish for everyone! Here is the link for the sermon I mentioned.: http://cfbconline.com/sermons#!/swx/pp/media_archives/116380/episode/21595
Also I encourage you to visit our church, First Baptist Church in Collierville, TN if you live locally and do not have a church home. We would love to have you!
   
Love,
Brooke

And of course my blog post would not be complete without some pictures of Little B!

First Week At Home

     We have been home for a full week now! Our days no longer consist of cafeteria food, waiting on doctors to round, the incessant beeping of monitors, showering in public restrooms, and living out of suitcases. I will however miss a few things from our 6-week stay at LeBonheur. I'll miss the oatmeal and pancakes for breakfast, spending hours binge-watching Grey's Anatomy on Netflix, the handful of wonderful nurses who loved on our baby, the free meal vouchers I got as a breastfeeding mom, and the memories that we made there with Harper. LeBonheur truly is a wonderful hospital that especially caters to children. When Harper came to visit us, she had so much fun getting books to read from the Family Resource Center (their library), walking down the hall of mirrors, watching a movie in the movie theater, eating in the cafeteria, and enjoying all the Christmas activities. The time we spent at LeBonheur was a very difficult time for our family, but it's also a time when we made a lot of memories that we will cherish forever.
     Being home has been so nice, but it has also been a big adjustment. Going from one to two children is a big change. Harper has become more needy lately and has been wanting me to spend more time with her than usual. This thrills my heart, but it also makes me a little sad since I have to split my time now. Breckin is not only a newborn, but a newborn who requires a little more care than usual. She eats every 3-4 hours like a regular baby, but for 20 minutes, she struggles with taking her bottle. This is due to her cleft palate, her heart defect, and her thickened milk which makes it more difficult to extract. Then, for the next 20-30 minutes, we put the remainder of her total feed in a syringe that is attached to her G-tube and this is taken by gravity. For her to tolerate her feeds, she must be calm and still which can sometimes be challenging. We also have to hook up an oxygen monitor to her twice a day to check her oxygen level. In addition to just feeding her, we have to mix breast milk with a fortifier for extra calories, and then thicken part of this to give in her bottle. After feeding, all the parts of her G-tube must be washed, and the area around the tube cleaned.
     The first full week since being home, I have felt like my life revolves around feeding Breckin. There are times when I get so frustrated and think how in the world am I going to live my life? How are we ever going to get out of the house and do something fun? How are we going to feed her when we are out in public? The past couple days we have been able to get out for a couple hours at a time, going to the park and visiting my co-workers, but we come back home in time to feed Breckin. I know that things will get a little easier, and I am hoping and praying that we will not have to use the G-tube for a long time. Right now Breckin is taking about an ounce and a half of milk in her bottle. My prayer is also that she continues to take more and more in her bottle.
     The other big adjustment of course is the lack of sleep. With Harper, this was not really an issue except for the first few weeks of her life. She started sleeping through the night at about four weeks, and we never really had to train her to do it. What I have discovered though is that we were in the minority. Most babies do not sleep through the night that early, and most don't usually do it until three months of age. I have to keep telling myself this when I'm awakened by a crying baby in the wee hours of the morning, and fighting fatigue throughout the day. I am so super thankful to have a wonderful husband who gets up in the middle of the night to do a feeding, letting me sleep. He has also taken care of both girls one day this week which allowed me to get a four-hour nap! So, things could be worse. I'm so grateful that Josh has a flexible job that allows him to help me out. I don't know what I would do without him!
     Things are going okay around here. We are going through most of the same things that other parents to new babies go through. I truly have to focus on the moment at hand. If I think about the future at all, even a few hours into it, I stress myself out. My daily prayer is just that God will supply me with exactly what I need when I need it. And so far, He has done exactly that. It is amazing to see how He is constantly working in our lives. When I feel like I'm at my wit's end and don't know how to keep going, He provides just enough strength to get me through the current situation. When I feel so worn and tired hat I feel like I can't do anything else, He provides rest. When I'm struggling with a whining toddler who insists on being pushed in a stroller, I'm given a stroller that can accommodate both kids. And when I'm completely overwhelmed by the medical bills that are already piling in, I am continuously supplied with financial support from friends, family, acquaintances, and even strangers.
     I truly feel blessed that God gave us this sweet girl to love and raise. I also feel ill-prepared and totally unequipped for the task. I try not to ask myself the question of "why?" I know that He has a reason for choosing Josh and I to be this sweet baby's parents. I just pray that I can show her the love that she deserves, and give her everything that she needs to live a fulfilling, happy life. "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen." (Ephesians 3:20-21, ESV).

Love,
Brooke

 Her first bath at home

 Ready for her check-up at the pediatrician's office

 A little half-smile

She's so sweet when she's sleeping

   

Going Home Soon

     Breckin has had some ups and downs in the past week, but I believe that we are in the home stretch here in the NICU. After her G-tube surgery, we slowly worked up to her taking full feeds and she has been tolerating full feeds in her tube for the past several days. We do these feeds by gravity, which means that we pour her milk in a syringe that goes through her tube and it runs in over a few minutes. Before we do this, we offer her a bottle and whatever she doesn't take by mouth we put through the tube. She has been somewhat regressing this past week with her bottle feeds. It was like she forgot how to take a bottle. She was having trouble coordinating her sucks, swallows, and breaths. She would also get so agitated during feeds and would only take 5-15cc. I felt like we were starting over, and I was getting so discouraged. However, since last night, she began to take more in her bottle, and was getting less distressed during feeds. It was like God allowed her to improve at just the time when I was feeling down and discouraged.
     The other new aspect to her feeding is her obturator, which is her mouthpiece for her cleft palate. We have only used it a couple days, but so far it has not helped her. In fact, she doesn't take any of her bottle when this is in her mouth. She doesn't know what to do with the bottle when the obturator is in her mouth. She just kind of mashes on the nipple, and won't even suck. Many people have told us that it will take a while for her to get used to this. In the meantime, however, it is just very frustrating for both of us, and she does better without it right now.
   On Friday, the doctors said that if she does well over the weekend, we will be getting discharged next week. She has to be gaining weight and tolerating feeds which she is doing. We also have to do a 48-hour stay at the hospital to make sure we know how to do everything involved in Breckin's care. I am feeling so many emotions as we anticipate our homecoming. I am excited to get our family back together and to get to take care of my baby in our own home. I am also nervous about taking care of her and not knowing what to anticipate. When I think about the road we have ahead of us, it is so overwhelming! However, I know we serve the Most High God who is in control of everything. This is definitely not the path that we would have chosen for our family, but it is the one we are going down. I know God is going to take care of Breckin and get us through the challenging times with her. We are just so blessed to have her in our lives!

Love,
Brooke

A G-tube For The New Year

     So we decided to go forward with the G-tube. This was not a decision that my husband and I went into lightly. I personally have gone back and forth so many times trying to decide what is the best thing for Breckin. When we talked with the doctor last week, he was not on board with it. He wanted to give it another couple weeks and wait for what's called an obturator. This is a mouthpiece that goes over the cleft in the palate to hopefully help her latch. The earliest this would even be started would be the second week of January, and it may not even be a solution to her feeding problems. So I decided over the weekend to put my foot down about not waiting for the obturator and to voice my feelings about the G-tube. Monday morning when the same doctor rounded, Josh and I brought up the G-tube again and our reasons for wanting to go forward with it. He pretty much immediately said yes I think we should go for it, and put in a consult with the surgery team. The fact that he was so much more on board with it only a few days later, made me feel even more that we were doing the right thing. 

     The next day, Breckin had an upper GI study to assess her anatomy and this was all normal. Later that afternoon, the surgical fellow came and talked with me about the surgery, and to make sure this was what we had decided to do. After confirming that yes this was something we have talked, thought, and prayed about, he told me that he believes we made a good decision. He said there is really no right or wrong way to go about feeding, but he said that babies tend to do better once they are home. This was just another affirmation that we were making the right decision for Breckin. There is usually another study that is done called a milk scan, which would assess if there is any reflux. Since Breckin has had no signs of reflux, they decided to forgo this study and go ahead with the surgery. It was scheduled for the next morning.

     So yesterday, on Wednesday December 31st, Breckin underwent her second surgery in just four weeks. Before the surgery, we met with the surgeon who would be doing the procedure. Her name is Dr. Williams and she told us that she is very good with G-tubes. This definitely put me more at ease. We watched our baby get wheeled back to the operating room again, and anxiously waited for the phone call to let us know they were done. Not even 45 minutes later, we got the call that the surgery went well and she was being taken back to her room on the NICU floor. 

     We came in to see her and the first thing I noticed was that she looked so long! It looked like she had grown in the short time that she was back there. The second thing I noticed though was that she had quite a bit of swelling on the right side of her head and face. Her ear was even shifted down due to all the swelling. The doctor told us that the scalp IV that they had started the night before had infiltrated and was leaking fluid into the soft tissue. They had already pulled the IV, but they said fluid would continue to leak out, and the swelling would take some time to go down. It looked awful, and I hated seeing her like that. It was almost worse than seeing her after her heart surgery. Luckily though with this surgery, she did not have all those lines and machines hooked up to her. All she has is an IV in her hand and the breathing tube in her mouth. 

     Today the plan is to wean her from the ventilator. She has definitely been more awake today and moving around when she's touched. They have started to go down on her vent settings, and have stopped giving her the morphine which is making her more sedated. They will just treat her pain with Tylenol and hope she will continue to wake up more. Her G-tube was clamped off this morning which means her gastric (stomach) juices will have a chance to just sit in her stomach. As long as this doesn't make her spit up or vomit, they will start feeding her this afternoon. The nurse practitioner said we can start feeding her with the bottle like before and give her the rest in her G-tube. We will start with small amounts and work our way up. The surgeon said that she would be up to full feeds in 48 hours if everything is tolerated. We are hoping that we will be able to go home next week!

     I hate that Breckin had to undergo another surgery, but I completely feel like it was the best thing we could do for her right now. I know that she will eventually get to where she can take a full bottle. She has the desire to eat, and she knows what to do. It's just a matter of her getting so tired that she can't finish her full amount by mouth. I think that once she grows and gets bigger and stronger, this will be an easier task for her. Our hope is that we won't even need to use the G-tube for long. I cannot wait to get our family of four back together under one roof. I am so excited to see what God has in store for our family in 2015! Happy New Year everyone! 

Love,

Brooke

Before her surgery yesterday just resting peacefully

 Day one after surgery-no more NG tube!