Born May 25th, 2008
2:59 pm
6 pounds 13 ounces
Length 19 3/4 inches

Saturday, June 28, 2008

Saturday, June 28th - Business As Usual

Yesterday, for the most part, was pretty uneventful. Kinley's high frequency vent support was lowered a bit and we are hoping that she will be able to move to a conventional vent soon. Her blood oxygen saturation remained consistently in the 90s and the oxygen from her vent ranged anywhere from the high 20s to the mid 30s. Kinley continued to show signs of withdrawals, mainly vomiting, but Kathy and I did learn a new sign of withdrawals from Kinley's night nurse Stacey. Sneezing is a sign of withdrawals and Kinley must have been having some serious withdrawals around 9:00 pm last night because she had a little sneezing fit. It was about 4-5 sneezes right in a row and, to be honest, I thought it was really cute until I found out it was a sign of withdrawals. The nurses keep score sheets on Kinley's withdrawal symptoms to help the doctors make decisions on how fast or how much to wean her narcotics. They have also begun to weigh Kinley each day. She is around 8 lbs 13 oz.

We have Phyllis back! Phyllis is the first ECMO nurse that Kinley has had since moving out of the operating room. Many of the ECMO nurses have stopped by to visit Kinely, but Phyllis is the first to be scheduled to care for her outside of the ECMO and operating room. Now don't get me wrong, every nurse here at Children's Mercy has been absolutely amazing, but we will always have a special bond with all of Kinley's ECMO nurses. Kinley's first 28 days of life, and therefore 28 straight days of our lives, were spent entirely with Children's Mercy's NICU ECMO nurses.

Phyllis gets us back up to speed on Kinley. Last night she required two extra doses of morphine and versed to calm her down. They also increased her morphine drip from 20 to 25 because Kinley had scored too high on her withdrawal symptoms score sheet. This morning Kinley has been calm and sleeping. The oxygen from her vent is at 37% and her blood oxygen saturation is in the mid 90s.

For rounds today we had Dr. K, Delores (nurse practitioner) and Dr. W. It was really nice to see Dr. W again. Based on all of Kinley's numbers Dr. K has decided to increase her methadone dose and stop the morphine drip completely. I will be interested to see how Kinley handles this, but it will be nice for her to have one less narcotic running through her tiny body. Kinley will continue on the high frequency ventilator, but Dr. K has put in an order to have the support turned down a bit more. The reason that Dr. K wants to keep her on high frequency vent is because it helps to keep the lungs constantly expanded. This will put constant pressure on any fluids collecting in her chest and force them out of her chest drain. We will also continue to wean Kinley's vent oxygen as appropriate.

Friday, June 27, 2008

Friday, June 27th - Playing Catch-Up (for all three of us)

Hello everyone, sorry for the lack of blog posts in the past 24 hours. Lack of sleep combined with stress and worry has finally caught up with us. We had to leave Children's Mercy early yesterday to try and get caught up on sleep, and also to maintain our sanity.

At one point yesterday the oxygen settings on Kinley's vent was down to 23% (the air that we breathe is 21% oxygen) and she was keeping her oxygen saturation between 98 and 100%. Then Kinley began a long, slow decline with her oxygen settings. This did not help our current physical and emotional state. By the time that we had to leave (around 4:30 pm) the oxygen coming from her vent was 40% and her blood oxygen saturation was around 91%. Granted, this is not much of a setback, but it felt monstrous to us. To watch our baby girl slowly move in the wrong direction after making such positive steps since surgery and coming off of ECMO, and to be helpless to stop it, was almost too much for us to take.

We arrive back at Kinley's side a little after noon today. We notice immediately that Linda is back for a third day in a row with Kinley (Linda is such a trooper) and that Kinley's NO machine is gone. Also, the oxygen setting on Kinley's vent is down to 30% and her oxygen saturation percentage is in the mid 90s. Linda gets us caught up on everything we missed yesterday and this morning.

After we left yesterday, Kinley's morphine drip was lowered from 100 to 50 and her methadone dose was increased. Around 5:30 pm, Pablo returned to remove Kinley's abdominal drain. Once the abdominal drain tube was out Pablo put in two stitches to close the hole in Kinley's side. Kinley got a bit fussy during the procedure, but calmed down immediately after it was over. Around midnight Kinley's NO (nitrous oxide) machine was taken away. This is a big step in the right direction because it means that Kinley does not need any additional help keeping her pulmonary hypertension down. During rounds this morning Dr. K has decided to lower Kinley's morphine drip again. This time from 50 to 20. To help offset this drop Kinley's methadone dose will be increased again. Other then that it will be business as usual. Continue to watch Kinley's blood oxygen saturation and wean her vent settings when possible.

Thursday, June 26, 2008

Thursday, June 26th - Quick Morning Update

When we arrived this morning Linda got us up to date on Kinley news. Last night was pretty quiet. Kinley only needed one PRN (an extra dose of morphine and versed) and that was when George, the night nurse, was changing the dressing around Kinley's surgery and drain sites. As of this morning, all of Kinley's numbers (BP, heart rate, O2 saturation) are looking good and the oxygen coming from her high frequency ventilator is at 28%.

Pablo, a surgeon, stopped by to deliver some good news. After checking out Kinley and seeing how much her abdominal and chest drains have been putting out they have decided to remove her abdominal drain. Pablo will return later today to remove it and he will place a single stitch to seal the hole in Kinley's side.

Rounds have not happened yet, but we are very anxious to find out what the doctor's thoughts are on Kinley and what changes they plan on making today.

Wednesday, June 25, 2008

Wednesday, June 25th - 1 Month Birthday

HAPPY BIRTHDAY KINLEY!!! You are 1 month old today.

A beautiful mommy with her beautiful baby.

Already rolling her eyes at mom and dad

Check out my new birthday bow!

During rounds this morning Dr. K and Delores, a nurse practitioner, discussed changes to Kinley's treatment. We will continue to try and wean Kinley off of her morphine. Today her morphine drip will be lowered from a rate of 150 to 100 and her methadone doses will continue every 6 hours. Kinley's versed (sedative) drip will continue as is, at a rate of 180. They prefer to wean only one drug at a time. Kinley's high frequency vent settings will continue to be lowered today and as long as she handles it well they will decrease her NO (nitrous oxide) input. The abdominal and chest drains are still draining fluids so they will stay in for at least one more day. They are not concerned that there is excess fluid in her abdomen or chest because her belly is nice and soft and they know that her chest will continue to produce fluid to try and fill the void from her underdeveloped lungs.

All of Kinley's blood gas tests today have been great. She has kept her CO2 and O2 levels within normal range all day. This has allowed for her high frequency vent and NO settings to be lowered. If Kinley can continue this pattern she should be able to move back to the conventional ventilator soon.

Kinley has had a fair amount of visitors from within the NICU today. Dr. M, Dr. W, Phyllis, Kristen and others have stopped by today to check in on Kinley and see how she is doing. The amount of support we have had, both inside and out of Children's Mercy, has been amazing. I know that we would not have been able to make it through Kinley's first month of life with our sanity if it hadn't been for that support.

Tuesday, June 24, 2008

Tuesday, June 24th - Where did we go wrong?

Today it took us a while to get to Kinley's bedstation since we stopped by the ECMO room first, probably out of habit. Once we did make it to Kinley's room we found Andrea caring for her. Andrea told us that Kinley was doing really well and she was able to wean Kinley's oxygen a little. (Kinley was actually getting 41% oxygen from the vent when we arrived, which is more than yesterday, but she had to have her oxygen increased after the big move.) Now that the move is over she is back on track and is tolerating the wean well. We also noticed that Andrea changed Kinley's bedding. Kinley looked really settled in to her new room.

Around 2:00 pm Kinley had a blood gas test. She had great numbers, especially her CO2, so Delores, Kinley's neonatal nurse practitioner (NNP) was able to change some vent settings for Kinley. She also decreased the amount of nitrous oxide that Kinley was receiving from her vent. An hour and a half later Andrea drew another blood gas test which showed that Kinley was tolerating the changes well. By the time Kevin and I left today Kinley was back down to 30% oxygen from the vent and was holding her numbers strong. Yeah!!

Now for the "where did we go wrong" part of the post. Kevin and I have only been parents for about a month now and already we have a child on methadone. This is actually not bad at all, and is a good sign. The doctors and nurses have decided that it is time to start to wean Kinley off her morphine. Since she is on a really high dose of morphine it will take a long time to wean her and we have been told that Kinley will have withdrawal symptoms such as sweating and vomiting. I am not looking forward to seeing Kinley having to go through that, but she needed the high amount of morphine to get her to where she is today, so I am thankful it was there when she needed it. In order to wean Kinley off morphine, she has been started on methadone. Methadone is a medication that is easier to wean off of, so as the morphine is decreased, the methadone will be increased until Kinley gets to a point where she can be weaned off of the methadone. Kinley had her first dose of methadone today and will get a dose every 6 hours. Her morphine was dropped from 190 to 150, which is a pretty big drop, so hopefully she will tolerate it pretty well.

Tuesday, June 24th - On The Move Again

Kinley has a NEW room!!! And it has a WINDOW!!!

After shift change last night we found out that Kinley would be moving soon. Partly because she is doing well with her recovery (although she is still considered "critical"), but mainly because another baby in the NICU needs the operating room. The plan was to move Kinley sometime before the morning shift change. So before we left for the night Melissa, last night's charge nurse, gave us a tour of the open bedstations and we picked out Kinley's new room.

Here is a pic of Kinley before the move to her new room.

My pink mittens are to keep me from pulling on any of my tubes

Monday, June 23, 2008

Monday, June 23rd - Heart Echo Update

More good news for Miss Kinley Melcher. We just got the results of her heart echo test back and her pulmonary pressure is down to within normal range. Way to go Kinley!!! This means that the likelihood of her pulmonary hypertension returning is much less. The pressure in Kinley's lungs before her diaphragm repair surgery was 85 -90, but this most recent heart echo shows that the pressure in her lungs is now in the range of 45 -50. When Kinley's pulmonary (lung) pressure was high it was difficult for her blood to travel to her lungs, therefore her blood could not be oxygenated, and therefore she needed to be on ECMO (heart and lung bypass machine). But now that Kinley's pulmonary pressure is normal her blood flows easily to her lungs, where it can be oxygenated.

Monday, June 23rd - A Busy Morning

Today we arrived to find Katie watching Kinley again. We could see from looking at Kinley that she got her art line placed (it is in her left foot) while we were gone. Katie also informed us that Kinley had a pretty good night. When we arrived this morning her oxygen coming from the vent was at 38% and Kinley was still able to oxygenate her blood well at that setting. Her blood pressure was also normal and Kinley looked even better than yesterday thanks to the lasix taking off excess fluid. She is starting to get her girlish figure back.

The doctors rounded on Kinley around 9:45 am today. Basically the plan is to continue to try and wean her vent settings. She will be weaned on the percentage of oxygen coming from the vent and also weaned on some settings on the high frequency vent since she was doing a good job at keeping her CO2 down as well. We will just monitor her BP today and so far it is looking good without any interventions by the doctors. Lastly, Kinley will get another heart echo test today to determine if Kinley's pulmonary pressure has come down since her diaphragm repair surgery and coming off of ECMO.

Since Kinley already has her mid line in and just recently got her art line placed, the only other line that she needs is her PICC line. Barb, the ECMO coordinator, is going to try and place that line later this morning. Once that last line is in, Kinley will be able to have her belly button tubes taken out and will officially be a "big girl", at least as far as IV lines go.

Kinley now has all of her "big girl" IV lines, the PICC line, Art line and Mid line. Barb was able to place Kinley's PICC line by going through her right leg and Katie has removed all of Kinley's belly button lines.

The heart echo technician arrives a little bit before noon, but before she can begin, Kinley needs to have her dressing pulled back. This is so the tech can have direct access to her chest. The exam does not take long, but we will need to wait for the cardiologist for the final results.

With Kinley's dressing already partially removed Katie and Delores, a nurse practitioner, decide to change the entire thing. This time they will only re-dress the areas around where the drains enter and leave the surgery site open to the air to help it heal. Kinley gets a little fussy at the beginning when all of the gauze and tape are being removed, but she soon calms down.

Here are a few pics from yesterday.

Sunday, June 22, 2008

Sunday, June 22nd - 4 Weeks Old

Kinley is 4 weeks old today. It is amazing to think about what she has been through already. The list is too long to imagine (or type), especially for an individual who is not even a month old. These CDH (Congenital Diaphragmatic Hernia) babies definitely have one of the roughest first months of life around. Kinley is still in a "critical" condition today and I know that Kinley is not "out of the woods" yet, but we are very happy with where she is now since she has already spent 3/4 of her life on a heart and lung bypass machine (ECMO) and undergone major surgery while on blood thinners.

Today however, is Kinley's third day of recovery from her diaphragm repair surgery and it is her second full day off of ECMO. Kathy and I tried to get caught up on some sleep last night and returned to Kinley's side around 10:30 am. Katie is back for a second day of Kinley duty. She gives us a quick update. They increased both of Kinley's morphine and versed drips, but she is doing well with her gas exchange. Over the night Kathy (the nurse) was able to lower some of the vent settings since Kinley was doing a better job of getting rid of her CO2. Her most recent blood gas shows that her oxygen levels are holding strong and her CO2 levels have come down. And lastly, Kinley is currently without any BP (blood pressure) medication.

For rounds today we had Dr. P and Dr. P. The overall decision by both doctors is to continue to try and wean Kinley on the oxygen level coming from the vent. They will now lower the vent's oxygen level as long as Kinley can keep the oxygen saturation in her blood above 93%. If Kinley's BP goes up today they will plan on using lasix instead of BP medication. Lasix is a diuretic and it will help Kinley urinate out any excess fluids. By lowering the level of excess fluids it should help to lower her BP. It sounds like the biggest part of Kinley's day today will be the replacement of her belly button lines with a PICC line and an Art line. The lines going into Kinley's belly button are being used to put in meds, nutrition and blood products. They are also used to draw blood for tests. Belly button lines are normally removed after one week of life, but Kinley was on ECMO by then and could not have them taken out while she was on blood thinners. The PICC line, which stands for peripherally inserted central catheter, will be used to input all of Kinley's meds and nutrition. The Art line (art is simply short for arterial) will be used to draw blood. A Mid line will probably be added tomorrow and it will be used as an all purpose IV. It can deliver both meds and blood products.

Brian, one of Kinley's previous nurses, came by around 3:00 pm to try and place a PICC line for Kinley. Brian allowed us to remain in the room as he worked, but we were not allowed to get too close because we needed to make sure the area he was working in remained sterile. Brian started the line in Kinley's right hand and the goal is to thread it up her arm and into her chest where it will end right outside her heart in her superior vena cava. Brian was able to get the to the middle of Kinley's chest, but the line wouldn't make the last turn to end by the heart. So Brian decided pulled the line back to end at Kinley's shoulder and make it her mid line. This means that Kinley's belly button lines will have to wait until tomorrow to come out. Barb or Mary Kay will try to place Kinley's PICC line tomorrow and they will most likely try to reach Kinley's heart by going through one of her legs and ending in the inferior vena cava outside Kinley's heart.

Next up, Dr. P! Dr. P was scheduled to try and place an art line for Kinley as soon as Brian was done, but we will have to reschedule for later today. Dr. P is thinking it will probably be later tonight before he can place Kinley's art lines. Art lines are a bit trickier to place because they go directly into an artery and tend to have a bit more bleeding involved.

Around 6:00 pm Katie and Sarah took a look at Kinley's dressing and decide that it needs to be changed due to the fact that it had soaked through in a few spots. I was able to help out with part of the dressing change because Katie needed to change all of the tubing for Kinley's drips. In reality I was more of a glorified arm and hand holder for Kinley while Sarah did all of the work. Overall the entire process went pretty smoothly and Kinley handled it really well. Early on she got a bit upset, but soon settled in as she got comfortable with all of the attention.

When Kathy and I return after shift change we find Kinley's newest victim, Debbie. (I am just kidding. Every nurse loves Kinley for her ability to send her BP through the roof and her never ending supply of urine soaked diapers.) And Debbie is in for a special treat tonight. Kinley's BP has been a bit high throughout the day and, instead of using BP medication to bring it down, the doctors have decided to give Kinley lasix which will cause her to pee even more than normal. (FYI - Kinley's urine output for the day shift was 7 cc/kilo/hr so it's not like she has been having a hard time going today.) Kinley's first wet diaper, after the lasix was given, was 225 grams. That is far and away her biggest diaper to date. It looks like Debbie is in for a long wet night. Sorry Debbie, but thank you for taking care of our little urine factory.

As of 10:45 pm the oxygen coming from Kinley's ventilator is at 43% and Kinley is still keeping the oxygen saturation in her blood above 95%. Way to go baby girl!!!