Thursday, January 22, 2015

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

   

Sunday, January 11, 2015

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

Thursday, January 1, 2015

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!