Friday, December 26, 2014

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

Monday, December 15, 2014

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                                          

Wednesday, December 10, 2014

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