Katie's Photo Book

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Arrangements

Arrangements for Katie's service can be found at the following link. Friends and family are welcome to come celebrate her life and mourn her passing with us. www.greenefuneralhome.net/obituaries.php

Our Little Angel Katie

I don't even know where to begin. I cannot tell you how much Michael and I have appreciated the prayers and comments that you have left for us and Katie on the blog. It has given us such strength and comfort to know that so many prayer warriors have been following and helping her in her journey here on earth. Last night at 11:45pm her journey took her to heaven. She was admitted yesterday around noon. They tried for hours to get an iv in her, but she has always been so hard to stick and they just couldn't get one in. They gave her some more Tylenol and antibiotics and for a while yesterday she perked back up and was so happy just sucking away on her paci and her little hand. It made us so happy and hopeful to see how much more alert she was. From tests run, it appears she had a urinary tract infection, a common problem... especially in girl babies. Normally, this would not have been of much concern, but Katie was so different. Her little heart was working so hard to fight her fever that her hands and feet were so cold all day. Without iv access they were not able to get her all of the medications that she needed, so they tried so many times to get an iv. Finally, at around 8:30pm they told us they were going to put a central line in her groin and that we would need to step out for about 30 minutes for the procedure. Then we got a call saying they could not get it yet and were going to intubate her again to keep trying. Sometime after that her heart stopped and they had to perform CPR to get it started again. They had to restart her heart several times and tried repeatedly to get her on bypass, so that her heart would not have to work so hard. Her little vessels are so tiny and by this time so constricted that they were unsuccessful. The doctors said that she was not in any pain. We got to spend some time with her after she had left, holding her and saying goodbye. Please continue to pray for us. We miss her so much already. There can never be enough pictures or videos to capture everything that she was. She is irreplaceable. Our little angel is now in heaven where nothing bad can ever happen to her again. Noone will ever try to poke her or open her chest or put that mean tube back in her throat. She is safe.

Baby Katie Not Feeling Well

Katie has not been feeling herself here lately. We called the hospital Monday evening and talked to the oncall physician about her symptoms - grunty breathing, nasil flaring, extreme gagginess (yes even more than is normal for her), lots of poopie diapers (7), rectal temp 99.9 (over 101 is bad so this was ok. Her oxygen was still 90% and heart rate was 174, which is slightly high for her but not unusual. The doc said to watch her breathing overnight and call back in the morning. So, Tuesday morning we called again. Her breathing was more normal, but still had a lot of watery poopie diapers and her temp was 100.4 at 8am. Her nurse practioner, Kari, was concerned about all the diapers and her losing too much fluids so she told me to call the pediatrician and to also hold her evening lasix dose. We made a 130pm appointment with the pedicatrician. I took her temperature again at 10:45am and this time it was 102, which worried me a lot, so I called the doctor back to see how much tylenol I could give her for her fever. I gave her the dose, but her temp was still 102.4 at noon when we left for the doctor. At the pediatrician, he checked her ears, mouth, urine, etc. and could not find anything obviously wrong with her so he told us to go over to the hospital (Piedmont) to get a blood culture and CBC (or CDC sounded like). We went to the lab and spent about 2 hours there for nothing. They stuck her in one arm and of course couldn't get a vein. So they called the NICU to get a nurse to come stick her, but they were really backed up so one never came. So he tried her other arm to no avail. He said only the nurses could stick the feet/head (which are the only places anyone has ever been able to get a vein on her) so they sent us back to the pediatrician with no labs taken. I took her temperature again at 330pm and it was 100.8 so this was somewhat reassuring. At the pediatricians, Dr. Copple gave her a shot of Rocephin, an antibiotic, and asked us to come back in the morning. So, we have a 1020am appointment with him this morning. I gave her another dose of Tylenol at 5pm right after we left the pediatrician. Her temp was back up to 102.4 by 830pm so put a cool cloth on her belly for about 10 min and called the doctor again. This time I spoke to her cardiologist who said what we were doing was fine and to go ahead and give her the 10pm dose of Tylenol. After application of the cool cloth her temp was back down to 100.9 but was 101 right before her Tylenol at 10pm. I checked it again throughout the night - at 1130pm it was 99.2 (normal range), 94.3 at 3am (kind of low and her arms/legs were really cold so we put more clothes on her and did not give the 3am dose of Tylenol), 98.4 at 4:30am (normal), 101.3 at 6am (gave another dose of Tylenol). This brings us pretty much up to current time. She is still struggling with a lot of poopie diapers so I am holding her morning lasix dose until after I talk to one of the doctors. I also noticed this morning that her hands and feet are taking 6+ seconds to perfuse which is a really long time so I am concerned about her blood pressure but have no way to check it until we get to the pediatrician. She still gets pretty fussy when she has a diaper or when I have to pick her up/mess with her, which is much better than her being lethargic and just letting me do whatever. I apologize that this post is so clinical but I know ya'll will want to know what is going on and am not sure if I will be able to post again until this evening or tomorrow. We have the 1020am appt. with the pediatrician, then 2pm appt. with the GI specialist and the dietician this afternoon. We are also supposed to go by the cardiologist while we are at the hospital because he definitely wants her bloodwork done and said that since they couldn't get it at Piedmont, he would make sure it got done at CMC (which I prefer anyways). Please be in prayer for Katie, so that they find out what is wrong and get her feeling back to herself again. I will post an update as soon as I am able.

11 Weeks Old Tomorrow

Wow, its hard to believe that Katie will be 11 weeks old tomorrow. Her cardiology appointment went well Friday. There was no echo but they checked her sats (90% boo yah!) and the book that we use to keep track of everything about her, including how much formula/breast milk she takes in, weight/number/type of diapers, oxygen sats, her weight gains/losses, and anything else we feel is noteworthy each day. They are happy with her weight gain and have even given permission for her to have two 1 hour breaks a day from her continuous feeds, since she is now up to three 15ml bottles a day and keeping them down pretty well. Slowly but surely she is working on gaining freedom from The Food Pole (said with distaste). They have also given their blessing for Phase II of breast milk reintroduction, but are leaving the final word up to the dietician, whom we will see on Wednesday. Phase II is to replace the centrifuged breast milk in her formula (240ml Enfaport to 27ml skimmed milk) with refrigerated skimmed milk (left in fridge long enough to separate and then scoop the cream off of the top). Since this will have more fat than the centrifuged milk, but will still be getting rid of quite a bit, we feel that it will be the logical next step in working her up to whole breast milk safely. On another note, Katie-bug has long struggled with extreme gaggy-ness/throwing up/spitting up. Even when her stomach was empty she would throw up bile - a lot. The good news is that she is getting better at holding her lunch in (literally now that she has some feeds by mouth) even though she still gags quit a bit. However, here lately she has been working very hard on learning how to suck her thumb... except that her thumb is not what tends to make it into her mouth. She has been sucking on her index finger, which guess what... makes her gag! We keep telling her that its the wrong finger, but so far she is not taking our advice on using her thumb instead. Silly girl.

A Week With Katie

Our little darling has been home for a week now and is doing great! She is working hard on her therapy: speech (for feeding), occupational (fine motor skills), and physical (large muscle groups). She had her second pediatrician appointment today and they confirmed that she is growing well. She is a whopping 10 pounds, 2.6 ounces and is 22.5 inches long now! She has gained half a pound in just the time since she has come home, which is wonderful. Her speech therapist was so impressed with how well Katie feeds that she has given her blessing for us to give her three 15 ml bottles a day now instead of just two. Monday, we had started mixing skimmed breast milk in with the Enfaport formula that she is on and so far she is doing fine on it. We plan on getting the dietician's input next week on the best way to phase her into whole breast milk. Tomorrow she will have her first follow up appointment with the cardiologist to check on her heart, so be praying that it goes well.

Home

Praise God we are home at last! Katie was discharged from the hospital yesterday and spent a large part of the afternoon looking around at her new surroundings and sleeping in her own crib. She seems very happy to be home, as are we. We are still working on unpacking and organizing her medical supplies and doing normal baby things, with some modification. Carrying her around the house is just not possible due to her feeding tube (she is on continuous feeds so is always hooked up to her food pump and a Farrell bag.) We moved her to the living room for a while yesterday but it took a coordinated effort to get her there and back. Since she is allowed two small bottles a day by mouth and her speech therapist got to see her gulp one of them down this morning, hopefully we will be able to increase her feeds by mouth soon and it will not be necessary to keep her hooked up to the bag all the time. The rest of this post will be dedicated to explaining the precautions we will have to take in order to help keep Katie well and alive until her next surgery. These precautions have been so well explained on some of our heart-friends' blogs that we have gratefully borrowed some of their words. We are incredibly excited to have Katie home. We also want people to be able to see her and visit her, however visiting has to be posponed and limited when it is allowed. Please do not be offended if we ask you respectfully not to pay her a visit (NO EXCEPTIONS!). When she is allowed visitors, she will not be able to be around anyone who is sick, who has been around a sick person in the past three days, or who is a smoker. Please feel free to call, text, e-mail, etc. anytime, to check and see how things are going. A lot of struggles begin for HLHS babies when they themselves get sick from something as small as a cold. Although Katherine is stronger, her immune system is still very weak and prone to germs, bacteria and the smallest of sickness going around. We will not be taking Katherine anywhere where there is a lot of people; church, birthday parties, etc., and no, not even Wal-Mart, at least not for a while. This is simply to protect her until she gets stronger, which may take several months. Our doctors have recommended that we keep her away from people until well after her second surgery, which will be somewhere between 5-6 months old. We do not want to offend anyone or hurt anyone's feelings. We are following doctors orders and trying to take as many precautions as possible. We are asking you, family and friends, to help us out with this. As Katherine progresses, gets stronger and grows, there will be plenty of time for everyone with her. Please continue to pray as we complete another step in Katherine's journey.