Saturday, July 26th - No More Ativan!

Here is some news I forgot to post yesterday. Kinley's compression feeds were reduced from 92 ccs over 1 and 1/2 hours to 85 ccs over the same 1 and 1/2. This is because her bottle/breast feeding sessions were increased from 3 to 6 times a day.

This morning Kinley decided that she didn't like her multi-vitamin with iron supplement again. This time she threw up all over Katie, her nurse. Katie was holding Kinley and getting ready to give her her morning bottle when it happened. Surprisingly to me, Kinley took her whole 10 cc bottle after she was done vomiting.

One less drug! The big news during rounds today is that they are stopping her ativan doses completely. All of her other medications (methadone, erythromycin and Prilosec) will remain unchanged today. More good news, Kinley's bottle feedings will be increased from 10 ccs to 15 ccs. They will also begin fortifying Kinley's milk with Enfamil to increase the number of calories per ounce. Breast milk by itself has 20 calories per ounce, but the fortified milk will pump it up to 22 calories per ounce. The reason for this adjustment is to give Kinley extra calories for healing and growing. A typical healthy baby will use most of its calories for growing, but Kinley (due to her repair surgery and being on ECMO) has to use a portion of those calories to help heal her body. The last change during rounds today is based on her vomiting session early today. Starting tomorrow they will divide Kinley's multi-vitamin with iron supplement in half and give it to her twice a day. Hopefully the smaller doses won't upset her stomach as much as the full dose.

Overall, today was pretty quiet so I will fill the remainder of today's blog post with pictures of Kinley, her outfit and the some fun faces she makes.

Friday, July 25th - Happy 2 Month Birthday!!!

First things first, today is Kinley's 2 month birthday. Happy Birthday Baby Girl!!! We are so proud of you and can't wait to get you home.

We arrived early today so we could spend as much time as possible with Kinley. Katie (Kinley's nurse) is back today. She tells us that Kinley had a busy night last night. Her NG tube came out 3 times. Kinley pulled it out twice and threw it up once. Poor baby girl had to have a tube put up her nose 3 times last night.

Kinley when we arrived this morning.

We made it in time for rounds today. Dr. O and Delores (the nurse practitioner) decide to make a few changes today. First off, Kinley's feedings of 90 ccs (currently being given over 2 hours) will be compressed and given over 1 and 1/2 hours. This will give Kinley 1 and 1/2 hours where she is receiving food and the 1 and 1/2 hours without food. Secondly, they will increase the number of times a day Kinley can have a bottle or breast feed from 3 to 6. Any bottle feeding will remain at 10 ccs, but Kathy can now breast feed for 20 minutes at a time (up from 10 minutes). Thirdly, the only medication that will be changed today is Kinley's methadone. The dosage will remain the same, but the frequency that it is given will be changed from every 8 hours to every 12 hours. And lastly, Kinley's PICC line will be removed today. Whenever it comes out Kinley will be IV free. Before rounds move on Kathy and I ask for clarification on Kinley's 2 month immunizations. Dr. O explains that he would like to wait until Monday to do them because he would like to see Kinley off of her ativan completely before introducing new drugs to her system.

Kathy and Kinley had 3 breast feeding sessions today, each one with a lactation nurse on hand to assist. Our first attempt of the day was unsuccessful. Kinley was kind of tired before we began and messing with her simply made her fussy. The second try was a bit more successful. It took a while to get Kinley situated comfortably and then we had to revert back to the nipple shield before Kinley would latch on. We were able to remove the nipple shield half way through and Kinley would continue to latch, but we couldn't tell if she was pulling hard enough to really be getting a lot of milk. She had just finished a feeding through her NG tube so she might not have been very hungry to begin with. Going forward we will try our attempts at breast feeding right before she gets fed with the hope that she will be hungry. Our third attempt went a lot like the first. Kinley was really fussy and didn't want to latch on. Overall it was a pretty rough day, on both sides, for breast feeding. We will have to wait and see, but this could be the beginning of the end for breast feeding.

A family that we have grown very close to at Children's Mercy is going home today. Jackson, one of Kinley's close buddies from back in the ECMO days, has decided that he has been at Children's Mercy long enough and he is packing up his stuff and taking his parents home. Before they head home though, the entire family stops by to check up on Kinley and say good-bye. It is always great to see a family going home. (We are so jealous.) Hopefully our day will be coming up soon.

Kinley is officially IV free!!! Katie has removed Kinley's PICC line. It came out very easily. The hardest part of taking it out was removing the tape from Kinley's arm. Now she is down to only one tube, her NG/feeding tube.

At 6:00 pm it is time for Kinley's bottle feed. I take this one since Kathy has been hogging all of the breast feeding sessions with Kinley. Kinley takes the bottle like a champ. Honestly, I had more issues getting Kinley set up to feed than Kinley did taking her bottle.

After shift change we return to find that Kinley has thrown up and pooped in her diaper again. Kinley's nurse tonight, Cathy, was taking care of another baby so went ahead and took off Kinley's dirty clothes and stripped the bed of its dirty sheets. Then we moved on to her dirty diaper. Honestly, this had to be Kinley's seventh or eighth poopy diaper today. Due to all of these dirty diapers, Delores decided (earlier in the day) to cut Kinley's erythromycin dosages in half. This should help Kinley to have fewer bowel movements in a single day. When Cathy had finished with her other baby she took over setting up Kinley's new bed.

Kinley waiting for her bed to be changed.

Check out that left hand. I think somebody is ready to try breast feeding again.

Since Kinley had thrown up on herself, and was now entirely IV free, we ask if we can give Kinley her first real bath. Cathy gets everything prepared and then walks us through Kinley's first bath. Can you believe it? Kinley is two months old and this is her first real bath. She did great. She only got fussy when she was first placed in the water, but the remainder of her bath she was pretty quiet and content. After the bath we get Kinley all dried off and into a new outfit. It is after 9:00 pm by this time and that means that we can give Kinley another bottle. This time it is Kathy's turn. Kinley takes it all without any problems and then it is bed time. We can only hope that Kinley will sleep well after a bath and a bottle, but we have to leave before she is asleep so we can get some shut eye ourselves.

This isn't so bad.

At least I get to keep my binky while I am in the tub.

Um, I really don't think you should be taking pictures of my while I am naked.

That's better, fully clothed.

Picture Update or Fashion Show?

Pictures from July 22nd

A truer statement could not be made.


Check out my matching pink socks.

I'll give you something to take a picture of dad!

Pictures from July 23rd

I thought it was Seep? I'm confused now.

Where did my binky go?

Ahhh, that's much better.

Spending some time with dad.

I think dad is trying to copy my hair style.

Pictures from July 24th

Look at all of this pink. I bet Aunt Mary loves this.

Just chillin' in my "crib," which happens to be a crib.

Does that camera ever run out of power?

Thusday, July 24th - Who Needs a Bottle?

When I walked in today I found Nancy, the occupational therapist, at Kinley's bedside. I had arrived just in time to work with Kinley on some "tummy time" and to give her her morning bottle. During tummy time Kinley raises her head the highest I have ever seen it. I think the reason for this is that her arms are getting stronger and she is able to push against the bed a little bit. Towards the end of her tummy time Kinley's eye lids begin to get heavy so we decide to move on to her morning bottle before she falls asleep. Kinley does not gulp down her bottle like normal, but she does finish it (all 10 ccs) in about 4 or 5 minutes without coughing or gagging. As soon as I take her bottle away she begins to cry. We joked that Kinley was getting fussy because she wanted more to eat, but the orders are only for 10 ccs per bottle feeding, so we have to stop. I burp Kinley (while she is still upset) and then I lay her against my chest to try and help calm her down. She fusses and moves around for a little while, but soon she is fast asleep.

I missed rounds, but Anne (Kinley's nurse today) gets me caught up to speed. It does not take long because there was only one change to Kinley's care made during rounds. Kinley's ativan dose will now be given every 24 hours instead of every 12 hours. Everything else (methadone, erythromycin, Prilosec, feeding amount and schedule) stays the same as it was yesterday. Anne tells me that Kinley's 2 month immunizations will be postponed until Monday, when she is off of her drugs. They want to wait for her to get some of the drugs out of her system before introducing new ones. This time frame does not sound possible because Kinley still has quite a ways to go before she come off of her methadone. We (Anne and I) decide that they are probably just waiting for Kinley to be off of the ativan before doing her 2 month immunizations. That seem much more doable by Monday.

At 3:00 pm Laura, from music therapy, stops by visit Kinley. This is Kinley's first "official" visit from music therapy. Laura did stop by once, when Kinley was on ECMO, to give her an iPod with speakers to use during her stay at Children's Mercy. This time Laura is here to interact with Kinley. Music therapy will stop by twice a week to help work on Kinley's mental development by stimulating her with sound, sight and touch. Today Laura did some visual tracking with one of Kinley's toys and she also sang Kinley the ABCs while stroking her head.

Around 3:45 pm Kinley decided to add a little more spice to her afternoon by pulling her NG tube out. Luckily, Anne was able to get it back in on the first try, and right before Kathy arrived.

With Kathy here we can give breast feeding another try because it simply isn't working when I try. Anne pages a lactation nurse to come and sit with Kathy and Kinley. She will observe and provide help to try and make sure these breast feeding sessions are successful. The lactation nurse arrives very quickly and we (Kathy and Kinley only) get started. It takes a little while to get Kinley situated, but once she was comfortable we were off and running. That's right, today was our first successful breast feeding day. Kinley latched on and fed for about 10 minutes. Hopefully we can continue to have feeding sessions like this, but we will need new orders from Dr. O before Kathy can feed Kinley for longer periods of time. Remember, right now Kinley is still receiving full feedings through her NG tube.

Sorry for the lack of pictures the past few days. I will do my best to remedy that tomorrow.

Wednesday, July 23rd - A Very Fussy Day!

Rounds were pretty short and sweet today. There is only one change, Kinley's methadone dose will be lowered by 10%. All of her other medications (ativan, erythromycin, prilosec & her multivitamin with iron) will remain at the same dosages as yesterday. Also, her feedings will remain unchanged today.

Nancy, from occupational therapy, came by this morning to do some work with Kinley. She started by having Kathy give Kinley her morning bottle. Once again, Kinley ate all 10 ccs without any issues. After Kathy burped Kinley, she and Nancy worked Kinley out with some tummy time and range of motion stretching.

A little after noon a lactation nurse came by to work with Kathy and Kinley on breast feeding, but soon after her arrival Kinley threw up. Needless to say, they were not able to work on breast feeding today. Aside from throwing up some food Kinley also threw up her NG tube. Megan, Kinley's nurse today, had to try three or four times to get a new NG tube in place because Kinley was screaming so much. I arrived (from work) just as Kinley was calming down. Kathy told me that was the loudest that she has ever heard Kinley scream before. I guess we should be happy that Kinley is able to scream and cry, and that she is not as sedated as she has been, but it was still hard to see Kinley so upset. During all of this drama Kinley had a dirty diaper that needed to be changed. Kathy had to leave for work before we can change the diaper, but it was full of poo and that was probably one of the reasons Kinley had been so upset.

I do my best to make Kinley comfortable after Kathy is gone, but she won't stop squirming around and she keeps making faces like she is in pain. Since she just threw up not too long ago I am guessing that her belly is upset. It turns out that her belly was not feeling its best. Kinley blew up her diaper again, for the second time in just over an hour. After changing her diaper I move Kinley so she is laying on her right side. This should help her food move through her stomach a bit easier. Luckily, Kinley falls asleep, probably from all of her morning exercise and mid-day drama.

Unfortunately she does not stay asleep for very long and she wakes up very fussy. I check her diaper first and it is barely wet, so I leave it alone. Next I try her binky, but just trying to put it in her mouth makes her more upset. Lastly, I pick her up and try to rock/bounce her to sleep. This works to create moments of calm, but she is soon upset and screaming again. I agree now with Kathy's comment from earlier. This is the loudest I have ever heard Kinley scream. It is either because she is more upset than ever before or the fact that she is older and her vocal cords are healthier. I set Kinley back in her crib and decide to change her diaper, even though it is hardly wet. It worked, Kinley is calm and quiet after her diaper change. I do not know if it is just today or if it because her methadone was decreased, but Kinley seems to be overly sensitive to dirty diapers today. For the remainder of the day I made sure that Kinley's diapers were clean and dry and she spent the rest of the day calm and quiet.

Around 5:00 pm I fed Kinley her second bottle of the day. She ate all 10 ccs again. I wonder when they will begin to increase the amount of milk she eats through a bottle?

Tuesday, July 22nd - Who Needs Drugs, I Have Mom

Good news, Kinley did not throw up her multi-vitamin with iron supplement this morning. She is going to need that nutrition now that she's on a diet of straight breast milk. Her PICC line is still in her left arm, but it is only there in case of an emergency. Once they feel Kinley is stable enough with only her feedings they will remove the PICC line because it could be a possible source of infection in the future.

Kinley has a new doctor. Dr. O started his two week rotation with Kinley yesterday. Dr. O is not new to Children's Mercy, but he did just return from serving in our armed forces. During rounds Dr. O decided to move Kinley's ativan doses to every 12 hours and leave her methadone and erythromycin doses the same as yesterday. He also has orders put in to begin compressing Kinley's feedings. Today Kinley will receive 46 ccs per hour for two hours and then she will have one hour where she does not receive any food. Then the feeding cycle will continue with two hours on and one hour off.

Kathy and Kinley had another breast feeding session, this time with the lactation nurse. Kinley is still having some problems with finding her comfort level with breast feeding so they try a nipple cover that will give Kinley the more familiar feel of a bottle. It seemed to work as Kinley would latch on more often, but we still don't think she is really getting anything out. Kinley ends up getting a bit worn out and the practice session comes to an end.

A few hours later Nancy, the occupational therapist, comes by to see if Kinley is ready for a bottle feeding. This time it is Kathy's turn to feed Kinley. We have had our guesses, but today confirms that Kinley does not need any sedative when she is around her mother. Kinley fell asleep as soon as she was snuggled up next to her mommy and while this is extremely cute it can cause some problems when you are trying to feed. Nancy and Kathy work together and find that the best way for Kathy to feed Kinley will be to sit her up on Kathy's lap so she is not leaning against her mommy. In this position Kinley will remain awake and therefore able to eat. And eat she did, Kinley finished her 10 cc bottle quickly and quietly.

Another example of Kathy's relaxing effect on her daughter is that Kinley always poops when her mom is around. The last two days they have actually been explosions in her diaper. Once while Kathy was stretching Kinley's leg and once while Kathy was leaning over Kinley talking to her. We joke that I will be the one who has to always feed Kinley and Kathy will be responsible for making sure she goes to sleep.

Kinley's residuals (the amount of food left in her stomach after a feeding) have been great today. At 3:00 pm she only had 1.5 ccs remaining and at 6:00 pm she had 4.5 ccs. This means that Kinley is processing her feedings of breast milk very well. Way to go baby girl! Keep up the good work!

Sofie Update: Sofie's repair surgery was pushed back to late this morning. The surgery lasted 2 hours and went very well, according to the surgeon. He is hoping to extubate Sofie tomorrow and he thinks that she will probably only need one week to recover. Thank you for all of the prayers, positive thoughts and well wishes.

Prayers for Sofia Miller

Please pray for Sofie. She is back at Children's Mercy tonight after reherniating her diaphragm repair patch. She is back on a ventilator and they will be doing her repair surgery tonight.

Sofie and her parents, Jennifer and Kenny, mean so much to us. They have been our guides through this crazy and unimaginable world of CDH. Kathy and I met Sofie and her mother back in March when we received our tour of Children's Mercy. Jennifer was kind enough to let us stop by Sofie's bedside. She gave us their blog information (www.babymiller08.blogspot.com) and we have been Sofie fanatics ever since. Reading Sofie's blog prepared us the most for what we were about to go through with Kinley and we are grateful every day for her and her parents.

Monday, July 21st - Our 1st Bottle Feed

When I arrived I found Kinley asleep on her belly in her new "big" crib. As promised, there are pictures of her new crib below, but I waited until she was awake before I took them.






Brecklyn is Kinley's nurse today (she is one of Kinley's ECMO nurses) and she tells me everything I had missed. Nancy, from occupational therapy, has already been by and given Kinley her first 10 cc bottle of the day. Kinley took all 10 ccs without any problems and then Nancy did a little tummy time with her.

Amber, the nurse practitioner, stopped by and gave me an update on all of the changes they will make to Kinley's care today. Yesterday Kinley's continual feed was moved up to full feedings (28 ccs per hour), but they are going to increase it again today to 30 ccs per hour. The reason they are doing this is because they simply want Kinley to have the extra calories for growing and gaining weight. For medications, her ativan and erythromycin will remain the same today, but they will lower the dosage on her methadone. They ran some tests on Kinley this morning and found that her hematocrit and hemoglobin were a bit low. This means that her red blood cell count is down a tiny bit so they are going to start giving her a liquid multi-vitamin with iron supplement, once a day through her NG tube, to help stimulate the production of red blood cells. Amber and Brecklyn both tell me that the iron supplement tastes horrible and can cause an upset stomach, but they are hoping that the milk from her continual feeds will lessen the stomach irritation. Luckily, since Kinley has an NG tube, we can avoid the taste, but lets hope her stomach can handle it. Also from this morning's tests they noticed that her sodium levels were on the low side. Sodium is an electrolyte that helps the body retain water. To help raise her sodium levels they will give her a dose of sodium chloride through her NG tube.

Kinley is asleep when both the sodium chloride and the multi-vitamin with iron supplement arrive. Both are liquids and can be given through her NG tube. Brecklyn gives the sodium chloride first and then the multi vitamin with iron supplement. Kinley remains asleep and it looks like the new additions to her belly will not be a problem, but about half an hour after receiving them Kinley vomits all over herself and her bed. From the smell I can see why the iron supplement causes an upset stomach. We have to replace Kinley's entire bedding and her clothes. Brecklyn also has to put Kinley's NG tube back up her nose. While we were getting her cleaned up she decided to make the moment a bit funny and pooped her pants.

Kinley was weighed the other night. She is now up to 10 pounds and 1.6 ounces.

Yeah, mommy's here. Kinley either finds mommy very exciting or very relaxing because soon after Kathy begins talking to Kinley she explodes in her diapers. It was so loud that it startled Kathy, not to mention that she was also leaning over Kinley when it happened. Kathy and I are becoming quite the pair at changing poopy diapers. We did not get any extra diapers dirty and Kinley never got upset.

Around 6:00 pm Kathy and I get our first opportunity to give Kinley a bottle. Kathy says that I can give her first bottle since I can't breast feed her. That works for me. Brecklyn helps me get situated and we begin. Kinley didn't want me to be too comfortable so she begins to cough before the bottle is even in her mouth. I don't think I like her sense of humor. Brecklyn gives me a few pointers on how to give the bottle without making Kinley gag and once she took a hold it was pretty smooth sailing. Kinley seems to have a pretty good grasp on the "suck, swallow and breath" pattern of bottle feeding. We are very lucky in that instance. Now all she has to do is get breast feeding down. Kathy and Kinley will work with the lactation nurse tomorrow on that.

Sunday, July 20th - Full Feedings

The very first thing we noticed when we arrived today was that Kinley was in a new crib, compliments of Katie (Kinley's nurse today.) This new crib seems massive compared to her previous one. We thought Kinley was in a "big girl" crib last time, so I guess she is in her big "big girl" crib this time. (Sorry, we don't have any pictures of it yet. We will make sure to get some tomorrow.)

Katie let us know that they will not be doing "official" rounds today and we will simply have to wait for her new orders to come through in the computer before we know what changes will be made for Kinley today. She also informed us that Kinley has not thrown up since yesterday and all of her residuals have been pretty good (between 4 and 15 ccs). When the new orders did arrive we found out that no changes would be made to any of her medication. Her continual feed will be increased from 24 ccs per hour to 28 ccs per hour. 28 ccs per hour is considered a full feeding rate for Kinley at this time and this means that they will stop all of Kinley's extra fluids going through her PICC line. Kinley will keep her PICC line (IV) for now in case they need it, but nothing will be flowing through it. All of Kinley nutrition and fluids will now be coming solely from her feedings.

Kathy and Kinley gave breast feeding another try and it went much better than yesterday because Kinley did not get fussy or upset, but she still didn't really get what to do. She latched on a few times, but for the most part she simply licked and that is not going to the job done. OT (occupational therapy) will be back this week and hopefully they will be able to give us some helpful hints. Overall I felt that today's breast feeding attempt went really well and I think that Kinley will simply need a little time to get things figured out. It also probably doesn't help that she is on continual feedings. With continual feedings Kinley never feels hunger so she probably doesn't have much desire to breast feed. When they begin to compress her feedings to smaller amounts of time and she begins to feel hunger then we might have a better shot at a successful breast feeding session.

Kinley got a little bit of tummy time today and she did great. While laying flat on her belly in her crib she lifted her head and turned it once each direction, all by herself. Granted, she did not do either turn very fast or back-to-back, but the point is she did them all on her own. We already knew this about Kinley, from earlier tummy times, but for the most part she really doesn't seem to mind laying on her belly. After her little head turning display she fell fast asleep and we let her lay like that until she woke up.

After shift change we find that George (Georgianna), Kinley's night nurse, is back. During George's last rotation she had to help take care of a baby that was on ECMO. From being on ECMO for 21 days, Kinley knew that the other baby needed George more than she did so she was more than happy to wait and see George tonight.

While George was in working with one of her other babies tonight, Kathy and I decided to work with Kinley on her flexibility exercises that OT showed us. In the middle of stretching out her left leg, Kinley's backside let out a tremendous noise and we knew right away that she had a dirty diaper. Together Kathy and I worked to change Kinley's dirty diaper and clothes. That's right, we had to change her clothes because her diaper could not contain her dirtiness. Our teamwork, as a family, was amazing. We did not get any extra diapers dirty and we got Kinley into her first shirt ever where both arms were in their sleeves. Before today we could not put Kinley's left arm in a sleeve because that arm has her PICC line and it had always been connected to a fluid line.

Kinley ended up sleeping away a good portion of her afternoon so Katie was not able to feed her any bottles. This means that George will need to try and fit in 2 bottle feeds with Kinley before the morning shift change. Unfortunately we had to leave before either bottle feed. We will just have to wait until tomorrow to find out how Kinley does.