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!

Feeding and feeding

     We have been back in the NICU for almost two weeks now. Breckin did so well after surgery that she no longer needed to be in the cardiovascular ICU. She has been doing so great since her heart surgery. Her respirations are so much better now-she breathes maybe 30-40 times per minute instead of 80-100. Sine being back in the NICU, we have mainly just been working on feeding by mouth. Because of her cleft palate and her heart defect, she has difficulty taking her full volume by mouth. She also was aspirating on her milk after her surgery. This means that the breast milk was going down her trachea to her lungs, which was why she would just give up eating after a few swallows. Our speech therapist is the one who saw the signs of this and ordered what is called a modified barium swallow. During this test, it showed that she aspirated on the breast milk in her bottle. So, a thickener called nectar was added, and this solved the problem.
     Since the swallow study, we have been feeding her with the thickened breastmilk. We are also adding fortifier to the milk to give her extra calories. As of today, she has surpassed her birth weight by a few ounces so she is back to gaining weight. We have been working on giving her as much volume by mouth as she will take. She was eating every three hours and it didn't seem like she was getting hungry enough, so we changed it to every four hours and that seems to have helped a little. She is now taking about 40-45cc pretty consistently by mouth. This is about 1 1/2 ounces. Her goal is to take 70cc by mouth every 4 hours or 60cc by mouth every three hours. We have come a long way, but I still feel like we have a long way to go.
     We have had so many great nurses here who have truly loved on our baby, and for that we are so grateful. However, because so many different nurses rotate through, I feel like there is some inconsistency. Every nurse has their own way of doing things and their own way of feeding Breckin. When Josh and I are here, we will feed her, but through the night, we let the nurses feed her. I feel like this is when she loses ground. It is just very frustrating being here day in and day out knowing the only thing keeping us from going home is her eating. I know that she will eventually get there, but I'm afraid it could take several more weeks for that to happen.
     We have recently been considering the idea of getting a gastrostomy tube or G-tube. This is a feeding tube that goes directly into her stomach. We can still do what we're doing now-offering her milk by mouth and then give the rest in her tube. However, we can go home with the G-tube and continue to work with Breckin at home. The G-tube is a simple procedure, but it is another surgery that Breckin would have to undergo. This is my only hesitation with going ahead with this. I hate to put my baby through another surgery where she will undergo general anesthesia, but I feel that Josh and I can make more progress with her at home.
     I have seen God working so much in Breckin's life, and I am just ready to get her home to actually start living life with her. We are so blessed with her and she is such a joy in our lives already. I know we have a long road ahead of us filled with many more doctor's visits, surgeries, therapy, and challenges down the way. However, I know that God is going to be with us through it all. I never thought I would make it past that first week here. I thought I would lose all hope, but my hope is continuing to be renewed each day that we spend with our baby girl.

 Christmas Eve

 Doing some feeding with her big sister and the speech therapist

Snuggle time with mommy

Breckin's First Heart Surgery

     Breckin had her first heart surgery last Tuesday evening on December 9th, just 6 days after being born. The cardiac surgeon, Dr. Knott-Craig was thinking it would be two to three weeks before she needed it, but she was showing that she was over circulating too much and was ready for it sooner. One of the conditions that Breckin has is called double outlet right ventricle which causes too much blood to be circulated to the lungs. This causes her to work too hard to breathe. So, at about 4:30 that evening, we walked with our little girl to the surgical floor, kissed her goodbye, and handed her off to strangers. It was one of the scariest moments in my life. The thing I kept thinking was, how in the world am I going to be able to do this two to three more times?
     The surgery only took a couple hours and Dr. Knott-Craig was so pleased with the outcome. He said the pulmonary band they put in place was a perfect fit. It was just loose enough where she could grow into it, but not too tight where it wouldn't last long. He also said she only lost about two teaspoons of blood so she didn't need to receive any blood.
     We transferred to the cardiac ICU that evening where our sweet girl was lying in her bed hooked up to all kinds of monitors and intubated to help her breathe. Her nurse, Morris, would be taking care of her all evening. He was so great to explain everything that was going on and give information about every piece of equipment she was hooked up to. He stayed in her room with us that evening and watched her every move. It was a little awkward getting up to pump every three hours with a strange man in my room, but I was glad he was there. The next morning, he said the night went great with no complications. He only gave her one dose of morphine, and she never required anything but a dose of Tylenol the next day.
     I am truly amazed at what my sweet girl has already gone through since being here. Besides having heart surgery, she has had more needle sticks than I can count, multiple tubes in her nose and throat, several IV lines inserted, and she even suffered a terrible wound on her ankle from a blister that opened up. She has been such a trooper and I am humbled by her strength. All of the nurses comment on how strong she is, and I am so grateful for that.
     Since her surgery, she has done so well from a cardiac standpoint. She was intubated for about 36 hours after surgery because she was just unable to wake up and breathe on her own. After that, however, she was back to her old self of being feisty and demanding :) The biggest hurdle that we have faced since surgery has been her not eating. The next three days after being extubated were just awful. She was hardly taking anything by bottle, and not seeming to make any progress from one day to the next. I was feeling so hopeless and sad about this. I know this is our last task before getting to go home. She has to be eating!
     Today, thanks to our wonderful speech therapist Amy Clare, we had a breakthrough! At her morning feeding, she noticed that Breckin looked like she was aspirating her milk. She worked quickly and within 20 minutes, we had her downstairs doing what's called a modified barium swallow. They took an x-ray of her being fed to see if she was aspirating the breast milk. After a few swallows, they saw that she was aspirating. To fix this problem, they thickened her milk with stuff called nectar to prevent it from going down her trachea. The first feeding with the thickened milk seemed to go okay. Amy Clare fed her and said she was doing great coordinating her suck, swallow, breathe actions. She only took about 7cc at that feeding, but Amy Clare was very pleased with this. At her next feeding, I was on my own. We had a nipple that had been cut at the top to make the hole larger to try to help Breckin get more milk. At this feeding, she was much more interested in eating and she ended up taking 17cc-more than half of what she took at her last feed! I was definitely one proud mama!
     I am so thankful for everyone's prayers and I can totally see God doing amazing things in Breckin's life. She has been in this world not even two weeks and already she is making a lasting impact on so many people. She has more strength already than I imagine I ever will. It's strange even saying this but despite all of her health problems, God has truly blessed her. She is already such a blessing to me and I cannot wait to get her home and live with her as a family of four.


Love,
Brooke

   Getting her barium swallow test

Right after her heart surgery                                          

Week One

     This may be a long post because so much has happened since our sweet baby girl came into this world. I guess I should start at the beginning. Breckin Elizabeth Helms was born on December 3rd at 3:14 pm with an uncomplicated and quick delivery. When she first came out, her whole body was blue. She was rushed over to the corner of the hospital room where all the NICU people were waiting for her. Her oxygen was very low and her heart rate was low as well. They immediately attempted to intubate her, but were having trouble. It was minutes before she pinked up, but they were the longest few minutes in my life. The thing that kept going through my mind was that we were going to lose her. She made it through the pregnancy, but this was going to be it. Thankfully, she survived and she is still with us.
     I got to hold her for about two minutes and then they sent her to the NICU at Methodist Germantown Hospital. A couple hours later, Josh and I got to go up there and see her. To me, she looked like a normal healthy baby. She had good color and she wasn't on any oxygen. She was hooked up to all kinds of monitors though. After about 30 minutes, the transport team from LeBonheur came to get her and sent her off to the CVICU at Lebonheur. Josh went down there immediately afterwards, and I was discharged a couple hours later to come down. I left the hospital 5 hours after giving birth and it was by the grace of God that I was feeling ok enough to do that.
     When I got to the CVICU, Dr. Johnson, a cardiologist, was there to update us on Breckin. She had just gotten an ECHO done of her heart and he was about to go over everything. He said she does not technically have hypoplastic left heart, but more like just hypoplastic left ventricle. The right ventricle is working overtime to pump blood out to the lungs and body. She also has what's called double outlet right ventricle where the aorta connects to the right ventricle instead of the left ventricle. Also, both the pulmonary artery and aorta are on the right side carrying blood to the lungs. The good thing is that this is a little less severe than HLHS, but will still require two open heart surgeries, along with her first surgery that will not be a full open heart surgery, but a less complicated procedure.
    So along with anticipating some type of heart surgery relatively soon, Breckin also has several other congenital problems. She has what's called a Dandy-Walker malformation, which we knew in utero, but she also a cleft palate and poorly developed structures of her eyes.
    The Dandy-Walker which was confirmed on MRI, is considered a moderate one. For now it is not causing any problems, but if it were to grow, it could cause seizures. It will likely cause Breckin to have cognitive, motor, and speech delays. As of right now there are no interventions being done, but she will start therapy early on to help with these issues. She will be followed by a neurologist and will probably undergo another MRI once the brain has grown to assess it and see if it has worsened.
   The cleft palate will be able to be surgically repaired when she is 9 months-1 year of age. The ENT who saw her says it is one of the less severe ones he's seen. This has caused some problems with her latching when trying to feed with the bottle, but she has taken some milk by bottle. The main reason that she has been having trouble eating however is because of her heart. Because she is working harder to pump blood through her body, she tires very easily. The cardiologist said that trying to eat for Breckin is like me trying to climb up flights of stairs.
   The issue with her eyes is one that we are not certain of. The ophthalmologists who came by to initially assess her have not been by since we received the MRI results. The neonatologist just said that by the looks of things, there is a poor prognosis that she will have some type of vision.
   Since we have been here, Breckin has been seen by neonatologists, cardiologists, ENT doctors, neurologists, ophthalmologists, and geneticists. This whole visit has been so overwhelming, stressful, frustrating, anxiety-ridden, and scary. We do not know what all this will mean for our little girl. We do not know what type of life she will lead, but I do know this: Jeremiah 29:11 states,"For I know the plans I have for you...plans to prosper you, not to harm you; plans to give you a hope and a future." I just keep reciting this over and over in my head and praying this verse over my sweet Breckin.
  I am devastated that my daughter was born with all these problems and my heart breaks for her that she will have to overcome so many struggles. My prayer is that the worst-case scenarios that these doctors are giving us do not come true. However, I feel that I need to be fully prepared for Breckin not to be able to see, walk, talk, etc. I do not know why God picked me to be her mother; why he thought that I could handle all this. I do know that He will give me the strength I need to be her mother and to get through each day with her. This week has probably been the hardest week of my life, and I'm not really anticipating it to get easier anytime soon.
   Please continue to pray for us and our sweet baby girl. As I write this, Breckin is recovering from her first heart surgery. I plan on writing a separate post on that soon.

Love,
Brooke
 

God is With Us

    I will be 38 weeks pregnant tomorrow! I never would have thought that this time last year we would be preparing to have another baby. I was pregnant last year, and we had what's called a fetal demise at 15 weeks. At a routine doctor's appointment, there was no heartbeat found in our baby. We were completely devastated. I mourned the loss of that baby for a long time, and there are still days when I think about him or her resting with Jesus.
    A little while after our loss though, we started trying to get pregnant again. Months went by with no luck. I was convinced I just wasn't able to get pregnant and we would never have another child. God, however, knew what he was doing. He was already creating this wonderful baby girl to be ours. In our church bathroom nearly 8 months after losing our baby, I held my breath as I waited with a best friend for the results of a pregnancy test. It popped up positive and I truly couldn't believe it.
    This past year and a half has been full of surprises, unknowns, and heartbreaks. But it has also been a time where I have come to know my Lord even more. I have come to know Him as God Most High, who is sovereign over everything that happens in my life. I have also known Him as the Creator, who has created each and every person on this earth for a purpose-to glorify His name. These are just a couple of the names of God that have stood out to me through this season, and I know He will reveal Himself to me in even more ways in the days to come.
    We had an appointment this week with Breckin's cardiologist to get a last look at her heart, and to make a final determination on whether I could try for a vaginal delivery or not. The time with him was once again reassuring. He was very pleased with the condition of her heart and is very optimistic about her surgery. He told us most babies that he sees delivered with HLHS are born around 36 weeks and weigh about 5lbs. Here we are already at 38 weeks, and Breckin weighs over 6lbs! Her heart rate was a little lower than normal, but from everything he looked at he didn't see any concern with it. He also said he sees no problem with me having a vaginal delivery. So, I am scheduled to be induced December 3rd. In a week and a half, we will get to meet our baby girl!
    There are still so many unknowns in this situation, but through my past I can see that God has been with me and will continue to be with me. The unknowns to me are not unknown to Him. This reminds me of a song I heard recently that says:
  I don't need to know what's next
  You'll be with me every step
  Through it all, I can see
  You carry me


Love,
Brooke