Friday, April 27, 2012

Life in the Progressive Unit

We have been busy, busy, busy with Miss Katie here lately so there is a lot to update! I will try to keep the post organized, but expect this one to be long... Feeding: Well, the plan for feeding was to start back on breastmilk April 23rd, which was exactly 6 weeks from the date of Katie's chest closure. Of course, when that date rolled around, there was more information to consider. The pediatric cardiologist said that 6 weeks is the absolute minimum that we should wait to restart breastmilk after Katie's chylothorax (the condition which caused milky fluid to develop in and around her lungs after her surgery). Her lymphatic system was damaged during the surgery and she was unable to process the fat in breastmilk correctly until it heals. She has been on a really nasty (yes I tried it) formula called Enfaport since then that contains medium chain fats that her body can process instead of long chain fats. The doctor told us that, although he would allow us to restart breastmilk if we choose, he would prefer a total of 3-6 months to make sure the chylothorax is healed. After having talked to him further, we now know that if we were to try breastmilk too early, all of the healing that has occurred so far would be ruined and she would have to restart the process all over again. So, that being said, Katie is doing fabulous at the moment and we would hate to mess that up for her. If the chylothorax were to reoccur, she would require chest tubes again to drain the fluid and we would be back in the CVICU... again. Personally, I think we have seen enough of the wonderful docs and nurses in the CVICU to last us til her next surgery! After doing some research online, we have come up with Plan B for breastmilk. We came across a family whose son developed a chylothorax after heart surgery and, in order to allow their son to have the benefits of breast milk, they started centrifuging the fat out of the milk and used medium chain fats to supplement it. Their story can be found at There have also been medical studies done of the effects of using centrifuged breast milk on infants with a chylothorax, with only beneficial results and no reoccurrance of the chylothorax. So, we have ordered a centrifuge and plan on working skim breast milk into her diet soon. She is going home with a feeding tube and will be getting most of her nutrition directly into her small intestine, but we have been given permission to give her 15 mL by mouth twice a day, which leads us to... Speech Therapy/The Swallow Test: After working daily with the pacifier (and showing paci videos to the speech therapists if they come during Katie's nap) they finally allowed her to do a swallow test, where they have her drink three different types of fluid that are visible by x-ray and take pictures as she drinks each one to make sure they go to the right place. She did wonderfully and even cried when they took the barium away! They got a kick out of that. Thus, we were approved for small bottle feedings twice daily. So far, I have been giving her the icky tasting Enfaport but hope to soon be giving her the breast milk instead. (Hurry with the centrifuge UPS man!) Physical Therapy/Occupational Therapy: Katie has been receiving either physical or occupational therapy each day since Monday. Physical therapy works on whole muscle groups, while occupational therapy concentrates on fine motor skills. We have worked on the pacifier, putting hands together, self-soothing, infant massage, and yes... modified tummy time! In order to do tummy time, we have to use the Boppy (thank you to some very special friends and coworkers!) and put a very soft blanket in the middle hole for her tube to have a safe place to rest. After only a week she is already very good at lifting her head up to try to get the paci or look at one of us, and during one session she even raised her head all the way up several times. She is very comfortable in this position and has even been known to fall asleep when she tires herself out. Working on the "H" word: We have been working daily to check things off of our "getting out of here" list and even as I type, Katie is working on her car seat test (sitting in the carseat for 1-2 hours to make sure she won't desat on the way home). We will not jinx her by giving a date, but we will be going to the "H" word SOON. It will be such a relief when we are no longer living in the hospital. Right now we are taking care of all of Katie's daily needs, including keeping track of her "ins and outs" - ounces of food taken in and the number/weight of diapers, daily baby weighing, checking her oxygen sats, preparing formula and programming her feeding pump, preparing and giving her medications, as well as all of the other "normal" baby things. We also have to keep track of all of these things in her CHAMP book, a log that will be checked weekly by one of the cardiac nurse practitioners to make sure that she is doing well, gaining weight, and that her oxygen sats are where they should be. We have received her home feeding pump, pulse oximeter, scale, and medications as well. All in all, we are liking the Progressive Unit, but can't wait til they kick us out!!! We appreciate so much all the things that our friends, family, and coworkers have done to support us through this time. Please continue to pray that Katie does well, keeps her oxygen sats up, and gets nice and big in preparation for her Glenn surgery in a few months.

Sunday, April 22, 2012

Graduation to Floor

Well, Katie has finally been deemed well enough to be moved to the Progressive Unit. She is being fed and medicated through her G-J tube and now also has another bag hooked up to drain off excess fluid in her stomach in order to help with her excessive throwing up. (It does not drain off food though, since that is going directly into her small intestine.) Now the goal for her is to start gaining weight! Once she is gaining adequate weight and there are no changes being made to her meds or anything else, we will be given the ok to leave. When this will be is still up to Katie though. Even though Katie is doing better, we still ask visitors to call first and to meet Vic or I on the first floor lobby. Katie is not able to accept visitors here at the hospital or even once we bring her home, since the more people she is exposed to, the greater the risk she will get sick and end up back in the hospital again. We will be making a more detailed post about this when the docs start talking about discharging her. We thank you for your continued prayers as Katie makes progress.

Wednesday, April 18, 2012

Feeding Tube Update

Yesterday Katie's surgery went very well. They put the feeding tube in with no problems and she was able to come off the vent immediately. Unfortunately her tummy time will have to be put on hold for now which is terribly disappointing. All of her docs and nurses are very proud of her for doing so well though.

Monday, April 16, 2012

Feeding Tube Procedure

Katherine's feeding tube procedure will take place tomorrow at 11:30am.  Please keep her in your thoughts and prayers.

Sunday, April 15, 2012

Seven Weeks Old Tomorrow - An Update

It is time yet again for another update, and I am thinking this will be a lengthy one. After battling resperatory rate and feeding issues for the past several days (weeks?) the docs have come to the conclusion that Katie just breathes too fast for them to allow us to try and bottle feed her at this time. Since her current feeding tube (an NG tube that goes in through her nose to her stomach) is too easy for her to pull out and not safe for us to put back in when she does, they have decided to surgically implant a more permanent feeding tube called a G-J tube. Part of this tube will go directly to her stomach and part of it will bypass the stomach and rest in her small intestine. They have a few reasons to want a tube directly to her small intestine. First off, we have discovered that the medicines Katie is on upset her stomach and lead to bouts of inconsolable crying and throwing up. Mixing the medicine with food and delivering it by a pump over a half hour has helped this tremendously, but is not a viable solution for home. The J tube in her small intestine will allow us to put all of her medicines except her Aspirin past the stomach, thus eliminating the chance that she will throw them up. We will also be able to ensure that we can get food into her without her throwing it up, which will help her to grow and put on weight. The other part of the tube (the G-tube) will lead to her stomach. This will be where we give her Aspirin (since it will have to be crushed and the particles will be too big to safely go into the other tube without clogging it. We will also be able to put food directly into her stomach so that she can have the feeling of being full and so we can continue to work on getting her stomach to hold and digest the volume of food that she really needs. In addition, we will be working with speech therapists to continue allowing Katie to practice sucking on a pacifier and other oral stimulations so that she will eventually, hopefully, be able to take a bottle. The fact that Katie still has unresolved feeding issues is terribly disappointing, but if this is what we have to do in order to be able to bring her home, then we will do it joyfully.

Also, Katie has been in the hospital soooo long that several important dates are fast approaching. Tomorrow, April 16, Katie will be 7 weeks old. The following day (Tuesday) will be exactly six weeks from Katie's closure date, so she will be able to start having tummy time. Physical therapists will be working with us on this and we will hopefully be able to help her catch up to where she should be developmentally. A week from tomorrow (April 23rd) will be six weeks from the date that Katie was started on Enfaport (a special fat-free formula) due to Chylothorax, a complication that caused the fatty fluid that was accumulating around her lungs. On that date, her lymph nodes should be healed up enough so that she can switch back to breast milk without accumulating chylous fluid around her lungs again. We are excited for her to be able to start tummy time and to be able to have breast milk again, which is not only best for her nutritionally, it will also help her immune system. Anything we can do to help her avoid getting sick and being put back in the hospital is well worth it.

Emotionally we are beyond ready for Katie to come home. It has been very difficult to remain joyful throughout the past two months and there have been several days that personally, I am sure I have not been a pleasant person to be around. There have also been days that I have not wanted to be around anyone but my husband and my baby. There have been days that I have had what I call "taking baby home jealousy" and it was very hard to watch other mothers taking their babies home when our child is still in the hospital. I have had to ask forgiveness for some of the thoughts and feelings that I have struggled with and I really debated with myself whether to include this in my post or not. We have tried really hard to stay upbeat and positive in our posts, but I felt that I needed to say something about it for a couple of different reasons. First of all, I want to thank the people who have put up with me when I wasn't the greatest person to be around, especially my husband who has been so strong every time I have let my weakness get the best of me. Secondly, for any families that might be reading this blog who have gone through, or are going through, a similiar experience, I want them to know that whatever feelings they are having are normal. It is an emotional roller coaster. Some days, you will see how much progress has been made and your heart will soar. Other days, you will not be able to see past the roadblocks ahead and you will feel utterly lost. God is with us through it all. He has a plan and He will bring us through.

In the week ahead please pray that Katie will come safely through the surgery for her feeding tube. Another surgery means that she will be going back on the ventilator. They tell us that she will probably not be on the vent near as long as the first two times, so we hope that this is the case. We will post a short update when we find out exactly which day this week they will do the surgery.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 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. All the days ordained for me were written in your book before one of them came to be." Psalm 139:14-16

Sunday, April 8, 2012

First Easter

Today is Katie-bug's first Easter. She got a little Easter basket and we got to read about the first Easter ever, when Jesus rose from the grave. She is doing better with her respiratory rate and with holding her food down. She is up to 18 mL of formula per hour through her NG tube, which is 14.4 ounces a day. Still not up to the 24 ounces a day that would be normal for a baby of her size and age, but we are getting there. Not a whole lot is changing from day to day now. We just continue to work on getting her to the amount of food that she should be taking in so she can get enough calories to grow. We pray that all of you have a happy, wonderful Easter as we celebrate Jesus.

Tuesday, April 3, 2012

Five Weeks Old

Katie turned five weeks old yesterday! She is doing much better this week. The issues she is having now are with her respiratory rate (she is still breathing much too fast sometimes) and feeding intolerance (she is having trouble keeping her food down). They are working to try and figure out why she keeps throwing up, so hopefully she will get to go home sometime in the next couple of weeks.
Smiley Face Katie-Bug