Tuesday, January 31, 2012

To lose power for a split second is nothing at home. But in a hospital, WOW! The quiet is overwhelming. The only thing you hear is the feet of the nurses running to their patients rooms. It happened early this morning, I sat up out of a dead sleep, as Julie our nurse runs in and looks at Kamryn first and then at all of the monitors. It's good thing no one takes adult blood pressures around here. Mine is immeasurable.
I just meet a lady that works at Hidden Creek in Port Orchard. My girls went to Hidden Creek. Her granddaughter is here in the NICU because of a small bowel issue. If the bowel doesn't gain some blood flow and begin to work, they will lose the baby. She was born at 28 weeks and is now 3 weeks old. My heart goes out to this family. Please add this baby and family to your prayer. This is very difficult.
Today I met with an anesthesiologist, infectious disease specialist and a hospital Social Worker. Everyone needs to be up to date on there immunizations. The anesthesiologist has no issues with Kamryn. The Social Worker is up to date on the family/church/friend/ and medical support system. I can't begin to tell you how grateful I am for all of you. Kamryn had a good afternoon. She likes to sleep on her left side. When she is moved to her right or even her back she will wiggle her body over to her left. This is hard with a big intubation tube in your mouth. The nurses have decided to leave her comfortable and not fight the 6.3 lbs child. She won this little battle.

Monday, January 30, 2012

I never in my wildest dreams would have guessed I would be waking up to, "Viv you want to come help me pull a chest tube?" That is the language of the CICU. Funny thing is I wanted to help too. Kamryn had a good night. Her BNP's are down today. they had gone from 300 to 1000 to 3900 and are down now to 900. Last night while I slept, she had peed through her diaper, i took 4 people to change her. She continues to give the nurses a hard time. I heard the night nurse tell the day nurses, she'll give you a run for your money this one. She continues to "Fight Like a Girl". Thank you to all who came yesterday to visit. I know it is hard to see her with all of the tubes and wires coming out of her, but she is in the best place. If she were to have had these issues at home we may not have her today. Please keep her and the doctors at the hospital in your prayers, and also the family of the baby, whose heart Kamyrn will be receiving.

Sunday, January 29, 2012

Today was a difficult day. Kamryn's breathing throughout the night became very hard for her to handle. Her heart has been having difficulty moving the blood around the body. When this happens the body responds by requesting more oxygen, the brain then causes more rapid breathing. They intubated Kamryn today. She was breathing very rapidly and needed the help to slow her heart rate down. She is now again on many IV medications and off all of the oral meds. As no one would tolerate having a tube down their throat, she is medicated to keep her calm and quiet. Praise God for nurses, their job is hard to do. Katie our day nurse prepared me for the possibility of intubation. She worked tirelessly today to get Kamryn everything she needed for her heart. During a diaper change today Kamryn held her breath and gave the nurse a scare. She is a fighter!

Saturday, January 28, 2012

Some very good questions have been asked here are some of the answers. Yes, at this time the donor heart would be from a baby. If she gets to be bigger and a donor heart is found then it would be from another child her size. We have now started the process to put her on the donor list. There are criteria and tests. They will be looking for possible reasons her body might reject the new heart. It takes about 2 weeks for all of the tests and a meeting with the cardio panel. At that time she will be put on the list if she meets the criteria. the criteria are: no potential rejection due to viruses she may carry, no genetic issues, her quality of life is compromised by having a non functioning heart. She is unable to function outside the hospital. The current medication she is on would put her on the list for people needing a heart right away. The surgery is very straight forward. The medications and restrictions she will be on after the transplant are not. Right after the surgery she will be on a slue of medications at high doses to prevent rejection. The medications have side effects. After a year the rejections rate drops. If she gets a heart as an infant the rejection rate is less because of the fewer antibodies in her body. Right now she is on a blood protocol to prevent unwanted antibodies. This is difficult, to think of someone lossing a child to help ours. This is what we will do for another family if Kamryn doesn't make it through all of this. It is hard for me to think about, and difficult to write. But God is in control and we are committed to His path. Knowing you are praying for our family gets me through the day. There are many more days to come. We don't know when a heart will be available or if she will be able to maintain it when she gets one. My prayers are with the Drs who make the decisions and fight for the children here in the CICU. There job is so difficult. God is in control and we are committed to His path.
I really need to read facebook before I put on mascara! Thank you to all who are praying. Last night Kamryn continued to vomit up her food. Her stomach was distended. The nurse showed me a trick for getting air out of the her tummy through the NG tube. It's called venting. As she vented Kamryn, I could feel the air leave her tummy, it was noticeably smaller. Kamryn was much happier. Mommy was much happier. We got to spend some time cuddling this morning, not something that happens very often here. While everything is centered around Kamryn and her needs, there is a lot of normal things missing.

Friday, January 27, 2012

Today my heart skipped a beat, as the Dr said, "We need to put her back on milrinone." Was I surprised, no. This means going back to the CICU. Kamryn is in the exact place she needs to be to get the care she needs. We will meet with the transplant team tomorrow to talk about the next step. At this point I don't know if it is possible to let her grow on the milrinone and try the medications when she is bigger. Those are questions we will ask tomorrow.

Thursday, January 26, 2012

For Kamryn tomorrow is a lab holiday. No labs for her. Right now the goal is to let the baby grow. The Dr has decided to stop the carvedilol for now. It may be tried again later, but for now it was causing problems with the other medicine. In order to take her heart medicine her systolic blood pressure has to be 65. Both meds lower that pressure and some of the meds weren't being given. There is some increased pressure in left upper chamber of her heart, possibly caused be the blood given to her yesterday.
Todays adventure let me away from the hospital. Mikaela was coming to visit Kamryn and me. On her way she had a flat tire in Seattle. She first called her dad. He arranged help for her. She called me second. The great thing about Children's hospital is there willingness to help. Transportation was arranged and I was able to join her as the tire was being changed. Our next adventure was to try and find a Les Schwab. GPS's are good unless the place your looking for has moved. We ditched the Les Schwab pursut for the baby and the hospital. Mikaela Rae Aubrey got to hold and feed the baby, and we got to spend time together. Love you Mikaela

Wednesday, January 25, 2012

Kamryn is getting blood. Her red blood cells are down, which makes her look grey and her heart works harder. The docs are still trying to balance the meds. We won't be going home this week, as it is difficult to balance meds in a 6 lb baby. I was told today that letting her grow some would be helpful to balance her medications. She is showing steady weight gain. Yesterday, they were thinking she was showing symptoms of heart failure. Today they are seeing some improvement.

Tuesday, January 24, 2012

One month today Kamryn was taken to the ER. I was hoping for a virus and maybe a day in the hospital, because she was so little. Not so, she was admitted to Mary Bridge hospital and then transferred to Children's in Seattle. Today we are still in the hospital and trying to medically manage her heart. (Eventually, she will need a heart transplant.) I'm very grateful for the Cardiac team and the nurses here at Children's hospital. They're supportive, helpful and caring. I am also grateful for the support of our family, friends and friends of friends across the planet praying for Kamryn. Thank you and keep praying.
Slow and steady! Today is a wait and see day. Kamryn is on a new medication that with the other medication can make her feel worse more than better in the beginning. It takes time to accurately dose and schedule these two meds to work with each other. Her red blood cell are lower today than yesterday which gives her a slightly grey look. The nurses here are great and are watching her closely. As a result the central line has not been removed and our return home may be postponed. Our diva is a little grumpy. There is a period of time called the milrinone honeymoon, that we are in now. It is the time when they find out if she can do well without that drug. As we know, Kamryn is a fighter and has God in her boxing ring. Keep up those prayers.

Sunday, January 22, 2012

This morning Kamryn was bright eyed and smiley. She's sleeping now. She's good at sleeping. I love her little stretches as she wakes up and is unwrapped from her blankets. Today they are starting a new medication, in combination with the current med it will make her heart work more efficiently. The overnight feeding are working she is now 6 lbs. Hooray! Who knew that it took so much energy to eat.

Saturday, January 21, 2012

Today Mike and the boys came to visit. I love having all my boys here with me. Kamryn is doing well, her heparin is gone. There are a few adjustments to her medications. One of which they may stop and another they may start. The femoral line may come out early next week. Kamryn and I hope to be home soon. The medicine tweeking may take longer than what the Dr's expect. One of the other Dr's made a comment about being on "Kamryn time". (slow and steady) I asked one of the CICU docs if Kamryn could go home with the double chin she came in with. (at that point she had lost weight) He said, "Absolutely." Today, I can tell you her weight is up and the double chin is back. Continued prayer for SLOW AND STEADY

Friday, January 20, 2012

The echocardiogram came back today showing baby girls heart working harder. Yesterday, there were some med adjustments for an increase in potassium. Today the potassium is down. This alone maybe the reason for the increased heart rate. The plan is to add another medication for her heart. This child is a pharmacy! With at least 8 medications being given over the course of a day with some repeated every 4 hours. Today she is restless. Fortunately she calms easily. She needs to rest, that 1/4 of a pound she gained yesterday needs to stay on her.
Today was a busy day for little miss Kamryn. It started with a blood draw at 6am, then an EKG and new NG tube, meds, feeds, bp and temp checks ect.. Now she is getting the 10 hour overnight continues feed. A pump puts food into her stomach at 22mls per hour. This is all in an attempt to get her ready to go home. The nurses are teaching me everything I will need to be equiped to take her home. Tomorrow, I may learn how to give her a shot that increases her red blood cell production. She is sleeping very well right now. I noticed today that the newborn look is becoming the Kamryn look. She is a beautiful baby and a joy to have with us. I know eventually she will need a heart transplant, but for now we are enjoying the moment.

Thursday, January 19, 2012

Today I learned how to put in an NG tube. Kamryn's got clogged by one of her medications. Yesterday, I learned how to check the placement of an NG tube. Kamryn will be having an EKG this morning. Maybe I can learn how to do that next.
(is it an NG or a NG?)

Wednesday, January 18, 2012

Hooray! We won the 28 calorie battle. Kamryn will be put on 26 calories for four feedings during the day and then a 10 hours of continues feeding over night. She will also continue the 26 cals for the bottle feeding. Today I also heard the words, "Discharge early next week", if her feedings go well. Hooray we get to fill up the white board in the hospital that says, "You are ready to go home when..." It has been blank.
Several days ago Kamryn was put on a 28 calorie diet. The oral feeding became an issue. She would cry, pull away from the bottle and refuse to eat anymore. The oral feedings stopped for a while. During the NG feedings of 28 calories she would cry, have gas pain and not calm down. Last night she vomited the 12:00 am feeding. She felt better after that. I made the executive parental decision and told the nurse no more 28 calorie. She agreed with me and called the team. Today we will decide if Kamryn needs a continues feed overnight. Logic would tell you just increase the times she is fed on the same calories. Little heart patients need calories but not volume, the volume would cause her heart to work harder, which would burn more calories and not work. While the Docs don't have a specific weight to get to, they do want to see a steady weight gain. It was difficult last night knowing my already very sick baby is not getting the food she needs to get strong.

Monday, January 16, 2012

Dr. Law came in today to look at Kamryn. Her iron, salt and red blood cells are low. They are doing more blood work today for a metabolic, red blood cell and iron testing, then they will be giving her some more blood. Her ability to keep up or create her own red blood cells being tested. She gets a shot on fridays to increase the production of red blood cells as well iron by mouth. I is possible to give her iron by IV. It is not unusual to have issues with red blood cells as a baby or as a heart patient. But the combination may be creating more of a problem. Today Mike and the boys went home. I will miss them, as I do all of my family.
Today Dr S Law, Dr UK Laws counter part did rounds today. Nothing is changing. She did correct the resident about Kamryn's diagnosis. It's LV Non Compaction Cardiomyopothy. Her formula by mouth has been reduced to 26 cal, but the 28 cal will still be given to her by the NG tube. I have prepared myself to be "snowed in" at the hospital, not to worry. As always the weatherman is 6 to 12 hours off in his predictions.

Sunday, January 15, 2012

This good old hymn has been going through my head all day long.

Great is Thy faithfulness!" "Great is Thy faithfulness!"
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
"Great is Thy faithfulness," Lord, unto me!

After spending time with family and friends today, and seeing the progress Kamryn is making it's a good song, to have running through my head today.

Friday, January 13, 2012

Within the last 24 hours we have moved 2 times. Once was yesterday around 9pm, because 4 new patients were arriving in the ICU wards. This did get us away from our noisy roomy and into a room with a view of the city. Our new roomy was a little one year old boy that has been in ICU for a year. Today we moved once again, but this time out of CICU and into a regular room. We have fewer monitors, wires and stickers. While she is doing better here, this is a test of how well she will do without the constant monitoring by here great CICU nurses.