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

Saturday, May 31, 2008

Saturday, May 31st

We arrived at Kinley's baby station around 11:00 am. Today's lucky winners are. . . . .Phyllis and Dianne! Come on down! You are the next set of nurses who get to take care of our baby girl. Congratulations!

On a less fun and more serious note, Phyllis and Dianne inform us that Kinley's neck is still oozing blood. The surgeon came back last night and put in one more stitch, but it wasn't enough to stop the bleeding. The surgeon also said that one stitch was the most that he could do. Since the one stitch did not fix the bleed, Kinley's heparin levels will be lowered so that hopefully she will be able to clot the leak herself, but we don't want to lower her heparin levels too low because that could cause a clot to form in the ECMO machine.

After lunch Kinley received some red blood cells to help replace what she has been losing and some platelets to help her clot the leak in her neck. As a group, we do not want to move Kinley too much for fear of making the bleed worse and we also don't want Kinley moving too much on her own for the same reason of possibly worsening the bleed.

Around 2:30 pm, Phyllis and Dianne called the surgeon to discuss how to handle Kinley's neck bleed. The surgeon suggested that they completely remove Kinley's bandages and redress the area. At 3:15 pm Kristen (another nurse in the NICU) came in to change Kinley's dressings with the assistance of Dianne and Phyllis. Instead of using regular gauze Kristen brought in some special gauze that the operating room uses for internal bleeding. Overall it was a pretty messy job, but Kinley's neck looks 200% better and does not appear to be oozing anymore. The entire nursing staff here at Children's Mercy does an amazing job of caring for, not only Kinley, but all of the sick babies here. Thank you so much.

For the first time, that we had ever seen, Kinley had the hiccups around 4:45 pm. We all made a little joke of it because while she was hiccuping her O2 saturation (in her blood) went up to 99 and 100%. That is the highest it has been since she has been here.

Our little urine factory is doing great. Around 5:20 pm we found out that her urine output for today has been 5 cc/kilo/hour. (Remember - we want that above 1.)

With Kinley being on ECMO her morphine and versed doses have been less than when she was on the high frequency ventilator. This has allowed her to be much more awake today. She has been opening her eyes and looking around the room for good chunks of time. We are very thankful that, for the most part, today has been uneventful. We hope for many more in the near future so Kinley can rest up to come off ECMO and have her CDH (congenital diaphragmatic hernia) repair surgery.

Friday, May 30th - ECMO surgery 1 & 2

It is 1:00 am and we are heading back to our PCU room, from the lactation room, when Dr. H finds us and lets us know that surgery has begun and should last 45 minutes to one hour. We wait in our room until 1:40 am when Dr. H and the surgeon, Dr. M, come in to let us know that surgery went well and Kinley is officially on ECMO. They also let us know that we should be able to see Kinley soon. Dr. H stays with us to talk about how Kinley's treatment will change now that she is on ECMO.

Kinley's new ECMO treatment: She has been moved from the high frequency ventilator to the conventional ventilator. This will allow Kinley's lungs to rest more. She is no longer receiving NO2 and they also took away her trial blood gas tester. Her BP medications will be weaned and most likely discontinued because the ECMO machine will maintain her BP. She will receive a head ultrasound every day for 5 days to check for bleeding in her brain. This is because Kinley has to be on heparin (a blood thinner) to make sure that no clots form in the ECMO machine. After the first 5 days, the head ultrasounds will done every Monday, Wednesday and Friday until she is off ECMO. It will be at least one week before the surgeons try to determine a date for Kinley's diaphragm repair surgery. They can do the diaphragm repair surgery while Kinley is on ECMO, but ideally they will want to wait for her to be off of ECMO. The reason for this is due to the heparin (blood thinner) that Kinley has to be on for ECMO. Heparin greatly decreases your blood's ability to clot and that is a huge concern if they have to do surgery while she is on ECMO. Only after Kinley has been on ECMO for two weeks will they consider doing her repair surgery while she is still on ECMO. The maximum time for Kinley to be on ECMO is three weeks.

If there is anything positive about Kinley going on ECMO, it is that she will be more stable and therefore less sedated. This means that Kinley should be more awake and that we will be able to touch her more.

At 2:40 am Noel, Kinley's night nurse, came to let us know that they are almost ready for us to see Kinley.

At 4:00 am we get to see our baby girl again. Kinley looks good, but it is hard to see her tiny body hooked up to the ECMO machine and all of its tubes. Due to going through surgery her morphine and versed are both up to 40. Her BP medications, both dopamine and dobutamine, have been turned off completely. As informed by Dr. H, both the high frequency ventilator and NO2 machine are gone. Her only new machine, other than ECMO, is her conventional ventilator. It is currently set at 30% oxygen. The pressure from the ventilator is just enough to keep her lungs from collapsing. This is to allow her lungs to rest as much as possible. Unlike the high frequency ventilator, this ventilator allows her to breath on her own if she needs to.

4:15 am, we are about to fall over from exhaustion and the stress we have been feeling the past 6 hours. We head back to our room for some sleep knowing that Kinley remains in the best care possible.

At 10:00 am, after a little shut eye, we head back in to see Kinley. Very quickly we hear some news that does not lighten our spirits. Apparently one of the tubes in Kinley's neck got a kink in it and now it needs to either be adjusted or replaced. It sounds like the surgery team will be back around 1:00 pm to perform the procedure/surgery. We can see that something needs to be done by the way they have Kinley situated on her bed. To get around the kink for now, they have Kinley's head positioned at an odd angle that does not look like it would be comfortable for anyone. They have also given her an extra dose of morphine and versed to make sure that Kinley is not too uncomfortable. Kinley has a new medication, it is milrinone, and it helps her heart to circulate blood while she is on ECMO. I don't think this is true, but Kinley might have done all of this for the attention. She will now have 2 nurses per shift. One will take care of Kinley and the other will take care of the ECMO machine.

I (Kevin) received a call from my parents around 10:20 am. You may have been wondering why you have not read much about my parents. That is because they are in Europe (a trip they had planned prior to finding out that they were going to be grandparents). They were scheduled to be back before Kinley's due date, but once again Kinley had different plans. Don't worry, they have been well informed via phone, e-mail and the blog. They will be back soon and can't wait to see Kinley in person.

By 2:30 pm, Kinley still has not been seen by the surgical team to fix the kinked tube so we let the nurses know that we are going to head home to clean up and pack a bag for the night. Aunt Kate (Kevin's sister) has gotten us a room for the night, at the Hyatt across the street. That will be a much shorter drive to see Kinley and hopefully we will be able to sleep better knowing that we are close by.

While at home, around 3:50 pm, we receive a phone call from Children's Mercy. Apparently one of us has to be present to give consent for the surgical team to fix Kinley's kinked tube. And we cannot give a verbal consent over the phone because it is considered an elective procedure/surgery. (It turns out that this was simply a miscommunication between the hospital and us. We never would have left if we knew they still needed us there) Between the two of us, Kathy is the only one close to being prepared to leave. Luckily our good friend Kim is there and can get Kathy off to meet her parents who can take her the rest of the way to Children's Mercy.

Kathy arrived at Children's Mercy at 4:45 pm to give our consent. The surgical team and nurses were all in place when Kathy arrived and began to work immediately.

At 6:00pm, we found out that the surgery went well and that they had to replace the entire tube. Poor Kinley with her double surgeries in 17 hours time.

At 6:40 pm, Kathy and I are allowed back to see Kinley, but we soon have to leave for shift change. Before we leave the nurse (Dot) shows us the kinked tube that Kinley had been dealing with for the better portion of a day.

After the shift change we return to meet Kathy and Carrie, Kinley's night nurses. Kathy (the nurse) attempts to give us a run down of the ECMO machine and how it works, but unfortunately we are still to tired to retain everything. Since Kinley was in a odd position most of the day due to her kinked tube, Kathy (the nurse) and Carrie spend about 40 minutes trying to adjust Kinley's position to make her more comfortable and maximize the flow of the ECMO machine. The doctors want Kinley's ECMO flow to be 0.39 - 0.40 liters/minute, but the best that we can get tonight is 0.36 - 0.37 L/min. More concerning is that Kinley has begun to bleed/ooze from her neck where the ECMO tubes go in. For now the nurses have addressed her bleeding with gauze. They also decided to stop trying to reposition Kinley for fear of making the bleed worse. Kathy and I remained with Kinley until everyone felt that she was pretty stable and then headed to the Hyatt to try and get the sleep that we missed last night.

Thursday, May 29th - Anniversary & ECMO

Kathy and I arrived at Children's Mercy around 11:30 am, but we had to go by admissions before we could head up to see Kinley. It did not take long, just a few forms and getting a copy of our insurance card.

When we arrived at Kinley's baby station we found that Dorothy, or Dot, was taking care of Kinley today. She gave us an update of last night's events. They increased Kinley's vent settings because her O2 levels dropped down into the 50s. They gave her some extra saline to help increase her BP. They also gave her some extra morphine and versed to try and calm her down. They thought that her stats might have dropped because she was agitated. Finally, they took an x-ray around 5 am and everything came back looking good.

At 3:00 pm Kinley became 4 days old. This is very special to us because today is our 4th wedding anniversary.

Around 4:20 pm the Neonatal Nurse Practitioner (NNP) came by and ordered a blood transfusion to help increase BP and increase oxygenation. She also informed us that the surgery team is still following Kinley's case, but feel that she is not stable enough for surgery yet. Right after, Kathy got to change her first diaper! (She was really excited about it.)

At 6:30 pm we received the results of Kinley's most recent blood gas test. Her Ph was 7.35, CO2 was 54 and O2 was 81. Also her urine output is at 5 cc/kilo/hr. Like we said before, Kinley is a urine making machine. Way to go baby girl!

At 8:45 pm Kinley's night nurse, Noel, gave Kinley some extra morphine and versed to try and settle her down and get her O2 levels up. Overall we felt that Kinley was doing pretty good so we decide to head home and try to get caught up on some much needed rest.

No rest for us tonight. Kathy received a call at 10:30 pm from Dr. H who was calling to let us know that Kinley's O2 levels had dropped into the 40s and that they would do another blood gas test at 11:30pm. If her stats did not increase by then they would likely have to put Kinley on ECMO. Kathy and I decide not to wait for the results of her next blood gas test and head back to Children's Mercy. We were a little over half way there when Dr. H called back to tell us that Kinley's numbers were getting worse, her O2 levels had dropped into the 30s, and that they were getting everything prepared for ECMO surgery. We arrived at Kinley's bedside around 11:45 pm and sign the ECMO consent form. They are going to have to do the surgery right there at her baby station because the baby operating room already has a baby in it. We both give Kinley a kiss before surgery begins. We are not allowed to stay for the surgery so they show us to the Parent Care Unit (PCU) room they reserved for us to stay in tonight. Surgery should take about one hour. We end up sitting in silence until around 12:30 am when we both go to the lactation room so Kathy can pump.

Continued on "Friday, May 30th."

Friday, May 30, 2008

Another Update, Another Surgery

Today, May 30th, has been an extremely rough day for everyone, especially Kinley. Not only did she have to go through ECMO surgery early this morning (1 am), but one of her tubes got a kink in it and it was disrupting the blood flow from her ECMO machine. The only way to correct the kink was to replace the tube. Around 5 pm they began Kinley's second surgical procedure of the day to replace the kinked tube. By 6 pm they were done and we heard that everything went very well. We were so relieved. Sitting and waiting for results on life saving procedures can be heart wrenching. At 6:30 pm we were allowed back in to see Kinley. We were so happy to see her again.

Overall, this has been the most physically, mentally and emotionally exhausting day ever. We would give anything to have an "uneventful" day tomorrow.

Sorry for falling so behind on our blog updates. As you can imagine we have been pretty preoccupied with Kinley and all of her recent issues. We will do our best to get past events posted and also stay on top of Kinley's current progress.

Quick Update

Kinley fought hard to stay off ECMO, but late last night, May 29th, she began to have problems keeping her O2 level up. Around 1 am, May 30th, they began the surgery to place Kinley on ECMO. The surgery took about 45 minutes. Thankfully, everything went smoothly and Kinley's stats are doing much better.

We still plan to get a post up on all of May 29th, but wanted to make sure to let everyone know as soon as possible of these recent changes. We also will post a more in depth description of last nights events. Below is a pic of Kinley after surgery.

The top red tube coming from Kinley's neck is taking blood to the ECMO machine to be oxygenated and the lower red tube is bring the oxygenated blood back to Kinley.

Thursday, May 29, 2008

A Special Day for Many

Today, May 29th, is not only Kinley's 4th day of life, but it is also Kathy's and my 4 year wedding anniversary. To celebrate our anniversary we decided to visit Kinley. I couldn't think of a better way to spend it than with my beautiful wife and baby girl.

Here is Kinley on her 4th day with us and on our 4 yr wedding anniversary

Speaking of baby girls, one of Kinley's friends is going home from Children's Mercy. Sofia Miller and family got to go home today. She has been here since March 10th. Kathy and I have been following Sofia (on her blog) ever since we met her on our tour of Children's Mercy. Sofia has done such a wonderful job of fighting through her CDH and she deserves nothing more than to go home with her loving mommy and daddy. We wish her and everyone in her life all the best.

Wednesday, May 28, 2008

Wednesday, May 28th

It was another slow morning, but this one was due more to the exhaustion that has been beating up both mom and dad. We arrived back at Children's Mercy at 10:30 am and quickly got updated on changes from last night and earlier this morning.

Nurse Phyllis is back and taking care of Kinley again today. She informed us that over the night Kinley's Ph and CO2 levels were good, but her O2 levels had dropped down into the 60s and 70s a few times. To help increase her O2 levels they increased the percentage of oxygen coming from the high frequency ventilator. Kinley's BP remained low last night, but they did not give her any hydrocortisone. Instead, the increased her dopamine setting from 15 to 17. Originally we were given the impression that 15 was the maximum dosage for dopamine, but we have now been told that they can go as high as 20 or even more in some cases.

As of this morning, but before we arrived, they had stopped Kinley's antibiotics because all of her cultures had come back negative. A surgical team came by to evaluate Kinley, but no date yet for surgery as she is still too unstable. Her most recent blood gas test was at 9:50 am and her results were Ph at 7.4, CO2 at 41 and O2 at 180. All great numbers. Keep up the good work Kinley!

We got another set of blood gases at 2 pm. Kinley's Ph and CO2 were good, but her O2 had dropped to 89. While this is a lower number than the previous result, it was not low enough to cause a huge concern and her treatment will remain the same for now. Speaking of blood gases, Kinley is trialing a new toy for the nurses and doctors. The new blood gas tester gives instant results and decreases the amount of blood loss at each test. Currently when the nurse runs a blood gas test, they take blood from Kinley in a syringe and take it to be processed in the lab and then the blood is discarded. The new blood gas tester takes blood from Kinley, tests it directly at her bedside and then cycles the blood back into Kinley so that she doesn't lose any blood. Since Kinley is just trialing the new machine they will not use any of its results to make decisions on Kinley's care. They will continue to do current blood gas tests on top of the new machine and then compare the results. So far the results from the new machine have not been as accurate as the current system.

New blood gas tester at Kinley's bedside.

At 5:15 pm Kinley was given a dose of morphine and versed (a sedative) since her heart rate was a little elevated. We could see Kinley trying to breathe over the ventilator again which means that she is not as comfortable as we would like to see her. Hopefully the meds will help her relax. (I think she gets the inability to relax from her mom.)

At 7 pm we got another blood gas test and the results were Ph 7.2, CO2 65 and O2 97. Since her CO2 was a little high they ordered a chest x-ray to check the placement of Kinley's tubes and also to see if there was any air in her stomach and/or intestines. They also decided to increase her vent settings to help decrease the CO2. At 7:40 pm Kinley was given another dose of morphine and versed since she was still trying to breathe over the ventilator. Hopefully once the CO2 comes down Kinley will not feel the need to try to breathe over the vent.

After the shift change we came back to visit and found that Noel is back again tonight to take care of Kinley. A bit of exciting news for us was that we were able to help care for Kinley a little. Up until now we have barely been able to touch Kinley for fear that we might upset her. Noel let Kathy check Kinley's temp and Kevin got to change Kinley's diaper!! We actually felt like real parents for a minute.

After we finished taking care of Kinley we received the results of another blood gas test. Her Ph was 7.32, CO2 was 60 and her O2 was 207. Her CO2 was a little high, but we are just going to wait and see if Kinley will respond to the changes that were made earlier. We also were informed that Kinley's x-ray came back with nothing out of the ordinary, which is always good news. It is getting pretty late here, so mom and dad are going to head home knowing that Kinley is in good hands here.

Tuesday, May 27th

Kathy and I did not have the fastest start to our morning. Kathy was extremely sore and had a difficult time moving around. A few ibuprofen helped a bit and we ended up arriving back at Children's Mercy around 10:15 am.

Kinley has a new nurse today, Dorothy, and she gave us an update of Kinley's activities through last night. Apparently, soon after we left yesterday Kinley was placed on NO2 (nitrous oxide). NO2 is a pulmonary vasodialator and it helps decrease the pressure in the lungs, which in turn helps the blood flow to the lungs since blood will always move towards the lowest pressure. The reason they started NO2 is because her O2 had dropped to 70. After getting Kinley onto NO2 they also gave her a dose of hydrocortisone to help increase her peripheral BP.

As of this morning Kinley's CO2 level is a little high and therefore her Ph is a little low. Her O2 levels are looking really good due to the help from the NO2. Kinley's mid-day was pretty uneventful. At 3 pm we did a blood gas test. This one looked really good. Her Ph was 7.38, her CO2 was 35 and her O2 was 214. From here Kinley continued her day of uneventfulness and around 6:45 pm we ran another blood gas. This one was another good one. Her Ph was 7.35, her CO2 was 44.5 and her O2 was 128. The numbers may not look as impressive as her previous test, but these were really good results. Shift change is coming up. Kathy and I have decided to eat dinner at the cafeteria and stay with Kinley for a while during the night shift.

After dinner Kathy and I came back to meet Kinley's nurse for the night, Noel. Noel was Kinley's nurse last night also, but we did not get to spend much time with her since we went home during the shift change. As always, Kinley's BP was low and around 9:40 pm they ordered 2 doses of hydrocortisone to try and help raise her peripheral BP. The plan was for one dose to be given now and the other in 8 hours. Before the order of hydrocortisone arrived we ran another blood gas test. The results came back with Kinley's Ph being 7.4, her CO2 at 37 and her O2 at 165. Both the doctor and Noel agreed that since Kinley's numbers were good, even with her low BP, that they would not give her the doses of hydrocortisone. In fact, they decided to drop her vent settings from 36 to 35. This should help increase her CO2 levels. It is not a drastic change, but remember how much a 2% change in oxygen settings affected her before. (If you can't remember, it dropped her O2 levels by 120.) As I have read in Sofie's blog and others, many of the changes that will be made to Kinley's care will be minuscule, but very important. They will plan on doing another blood gas at midnight, but we are getting pretty tired and will head home for some shut eye.

My One Day Old Party

It is 3:00 pm on May 26th, Kinley is now one day old. What a celebration we had. It is too bad you all couldn't of been here. The following information is how we celebrated.

Kathy headed down the hall to pump milk while Nurse Phyllis, Kinley and I received the results from Kinley's x-ray taken earlier today. For the most part everything looked as it should, but there was some air collecting in the stomach and intestines that are in Kinley's chest cavity. To remedy this Nurse Phyllis attached a syringe to the end of Kinley's NG tube (this is tube running directly to her stomach) and began to try and suck out the air in Kinley's stomach and intestines. Unfortunately, Phyllis could not get the results she was looking for. After a few adjustments to the NG tube with no changes in the results Phyllis decided to pull out the entire NG tube for a closer inspection. With the entire NG tube out, we could see that last inch of tube had been clogged. Rather than try to unclog the tube Phyllis simply replaced it with a brand new tube. With the new NG tube in place Phyllis was able to remove the excess air from Kinley's stomach and intestines.

Around 4:15 pm Kinley was given a new bag of nutrients and close to 4:30 Kinley gave us back a wet diaper. With that wet diaper Kinley was up to 4 cc/kilo/hr. (Remember, we want this to be at least 1) Way to go Kinley! Our own little urine factory.

Around 5:20 we had another blood gas test. This one showed Kinley's Ph at 7.32 (good), CO2 at 46 (good) and O2 at 101 (not bad).

With Kathy just getting out of the hospital today, we decided to head home during the shift change so we could try to catch up on rest. (Shift changes at Children's Mercy are between 7 and 8, both am and pm, and during that time no one other than nurses and doctors are allowed in the nursery.) Good night sweet Kinley. We will see you tomorrow morning.

Tuesday, May 27, 2008

Mommy's Coming

Right before noon, on the 26th, Grandpa Seep arrived at Kinley's baby station with some great news. Kathy has convinced her doctor that she is ready to be discharged. It will take a little while for her to get checked out, but she should be here soon.

Around 12:30 pm Nurse Phyllis gave Kinley some antibiotics in case of an infection. Phyllis said that Kinley's temp was a little elevated, but nothing they would consider a fever. They simply want to be safe and stop it early in case it is an infection. Kinley was also given another dose of hydrocortisone to help increase her BP. We also discussed Kinley's urine output. The minimum output they want is 1 cc/kilo/hr (please don't ask me to describe this measurement because I do not have a clue) and Kinley is currently at 2. This is good news because it means that Kinley's kidney function is good and that she is not dehydrated. If she can increase her urine output, that means Phyllis and the other nurses will be able to give Kinley more fluids to help with her BP.

At 1:15 pm, we received the results of another blood gas test. Kinley's Ph is normal, her CO2 is 35 (we want it between 35 -45), and her O2 is at 250. Overall, a good blood gas test. Her O2 did drop from 370, but this is because her ventilator was turned down 2% since her last blood gas test. Phyllis made sure to point this out to me to make sure that I was aware of how sensitive Kinley was to changes in her settings and environment. A 2% change dropped her O2 by 120. Phyllis also informed me that even though her CO2 level was good we really want it closer to 45. Believe it or not, but this is because having too low of a CO2 level in your blood is a very dangerous thing. If her CO2 levels drop to 20 or lower that is when it gets dangerous.

1:30 pm - The radiology team brought in a portable x-ray machine to take a look at Kinley's chest cavity. (We will get the results of this x-ray later today)

1:45 pm - Mommy's here!!! Kinley is so excited, but I make her wait in her bed while I wheel mommy back to her room. I can be such a strict parent. After we have Kathy in the room we bring in one of the taller chairs so she can sit at Kinley's bedside. On top of the gift of simply having mommy there, Kathy brought a gift (pictured below) for Kinley. Actually, Kathy had this gift packed in her delivery bag just to make sure that we did not forget it.

Mommy Melcher watching over Kinley.

Kinley with her 1st gift.

First Morning as Parents

It is the morning of May 26th. I did not think that I would sleep for very long, but I must have been pretty exhausted because I slept for eight hours. I called Kathy as soon as I woke up to find out how she was doing and what she has heard about getting over to Children's Mercy. Kathy did not get such a restful sleep because she has begun pumping milk, which must be done every three hours, and the nurses kept waking her up to check her vital signs. Kathy's milk will be frozen until the time that Kinley is able to use her digestive system, this will not be until after her surgery. It really stinks that Kathy could not get a good nights sleep because she really needed it. She has been working so hard on such little rest for the past 36 hours. (I hope she does not try to steal Kinley's sedative medication when she gets here.) Kathy is planning on being discharged today, but her nurse is thinking that she will only be given a 3 hour pass to visit Kinley before she would be required to return to St. Luke's. The final decision will be up to her doctor, who will visit Kathy later this morning.

Kinley's new nurse for today is Phyllis. She informed me that Kinley's blood gases are still good. Her Ph is good, CO2 is 36 and O2 is over 300. Her BP, on the other hand, is continuing to be an issue.

First Night Update

It is now 1 am. Kinley's BP is still needing help so her dopamine level has been increased to 15 (that is the max.) They have also given her a dose of hydrocortisone (a steroid that helps to increase BP.)

Her most recent blood gas test came back with some great numbers. Her Ph and CO2 are still in good range and her O2 levels were at 339. Kinley is an oxygenating champ! How about that? I have two champs in my life. (Maybe I need to start pulling my own weight) I have got to be one of the luckiest guys ever.

As I said earlier, it is 1 am and I am having a hard time staying awake. To be honest, I have fallen asleep twice while working on the blog and once woke up to an entire line of the letter k. I should probably call it a night and start fresh tomorrow. One of the chaplains here at Children's Mercy, whom I met earlier, was kind enough to reserve one of the bedrooms here at the NICU for me to sleep in tonight. Good night Kinley, see you in the morning. Hopefully Kathy will be discharged from St. Luke's tomorrow so she can join us here.

Kinley's First Night at Children's Mercy

It is almost midnight on Kinley's first day of life and her first day at Children's Mercy. To increase Kinley's BP they are giving her dopamine, extra saline solution and they can also give her some steroids, but they haven't had to do that yet. (Don't worry yet, there are other BP drugs they can use in case these do not do the trick. I simply don't know the names of them yet and hopefully I never will need to know them.) The maximum amount of dopamine that they can give Kinley is 15 micrograms/kilogram/minute and she is already at 13. Kinley is still continuing to try and breathe on top of her high frequency ventilator so they have decided to give her a paralytic drug, to paralyze her and stop her from trying to breathe on her own. Whenever a patient is put on a paralytic drug they are also given morphine. This is a precautionary measure to make sure Kinley is not in any pain while she is paralyzed. Kinley will only be paralyzed for about an hour, but that will be plenty of time to let the ventilator take control of her breathing.

The most frequent and best test to give us an indication of how Kinley is doing is her blood gases test. For this test, they take a sample of her blood and it is checked to find out her blood Ph (acidity) level, carbon dioxide (CO2) level and oxygen (O2) level. We want the Ph level to be in the 7.3s, the CO2 levels between 35 -45 and the O2 levels above 100 (anything below 60 will require ECMO.) As of midnight her Ph and CO2 levels are looking good and for the first time since she has arrived her O2 levels are above 200. They were 260 to be exact. Way to go Kinley!

Another positive move for Kinley on her first night was a wet diaper. Once again, way to go Kinley! It was only 8 mL, but it is a good sign that her kidneys are working.

Trying to Keep Up on Blog posts

Kathy and I have been doing our best to keep the blog updated, but just can't seem to get caught up. We have added a few pics to some previous blogs so please back track a bit to see some pictures of Kinley at St. Luke's and after her transfer to Children's Mercy.

Thank you everyone for all of your prayers and well wishes. We all really appreciate it.

Monday, May 26, 2008

The Heart Doctor

Later that evening, after visiting the Miller's, a cardiologist came by Kinley's bedside to take a look at her heart. The cardiologist, Dr. K, brought a portable ultrasound machine and was able to do the entire process without moving Kinley. (CDH babies are very sensitive and their stats can begin to drop if they receive too much stimulation, whether it be physical, noise or light) After a lengthy analysis, Dr. K said that Kinley heart looks very healthy and he cannot see any defects. Another reason Dr. K was checking her heart was because Kinley is having a hard time keeping her blood pressure (BP) up. He was looking to see that her arteries were completely full and they were. He was also measuring the pressure produced by the left ventricle - this is the ventricle that sends blood to the entire body. The reason they need to know the pressure produced is because CDH babies have a difficult time with pulmonary hypertension.

Pulmonary hypertension has to do with the pressure in the babies lungs. When the baby is in the womb it does not use its lungs to oxygenate its blood, the mother handles that through the placenta. And since the baby does not need to use its lungs the baby's body increases the BP in the lungs so that all of the blood stays away from the lungs. Remember, blood travels from high pressure to low pressure. Now, when babies are born they need to lower the BP in their lungs (so that blood flows to the lungs) since they are now responsible for oxygenating their own blood. CDH babies have a problem with lowering the pressure in their lungs (due to their inhibited growth) and therefore have a problem with getting their blood to their lungs to be oxygenated. One way to try and correct pulmonary hypertension is to raise the baby's BP in its peripheral arteries above the pressure in the lungs so that the blood will move to the lower pressure of the lungs. This is why it has been such a concern to keep Kinley's blood pressure up.

Visiting the Miller Family

Back in March when Kathy and I received our tour of Children's Mercy we met Sofia Rose Miller and her mother. Sofia had a CDH and was on ECMO at the time of our visit. Her mother was very kind and gave us the web address of the blog they started for their daughter. Kathy and I follow her blog closely and to be honest most of our knowledge about CDH either came directly from their blog or stemmed from one of their many links about CDH.

Sorry, I kind of got off topic. The point of this entry was to let everyone know that I was able to visit the entire family on the same day Kinley came to Children's Mercy. After visiting Kinley, Dr. H escorted me to Sofia's current baby station. Speaking of baby stations, Kinley is staying in the exact baby station Sofia was in when we came on our visit. Sofia is very close to going home now and we wish the entire family all the best. Thank you Miller family for allowing us to follow and experience your journey.

Kinley's New Home

At 8 pm, Kate and I went into the NICU to visit Kinley in her new home. When we arrived, Kinley had just finished having some x-rays taken. The x-rays were taken so they could look at her internal organs and also check the placement of her IVs. Kinley's new home is in the "ECMO Room" at station B 19. She is not on ECMO, but they call it the "ECMO Room" because it is connected to the operating room where babies are placed on ECMO. We visited with Julie, the nurse who would be caring for Kinley, about how Kinley was doing. Julie told us that Kinley is trying to breath over the high frequency ventilator (behind Nurse Julie in 1st pic below) which is what they don't want her to do because the ventilator should be doing the breathing for her. So they are trying to use drugs to slow her breathing and allow the ventilator to do most of the work. They have done a few blood gas tests to check on Kinley's O2 (oxygen), CO2 (carbon dioxide) and blood Ph levels (the acidity of her blood). They want her O2 levels above 60 (anything lower than that will require ECMO), her CO2 levels around 45 and her Ph level around the 7.3s. So far her Ph level is a little low and her CO2 level is a bit high. Her O2 levels keep fluctuating between good (above 100) and low (in the 70s).

Here I am at my new home at Children's Mercy. My nurse Julie is taking really good care of me.

Here is a litte better pic of my baby station at Children's Mercy.

Waiting to see Kinley

When we arrived at Children's Mercy, Kinley went into the NICU to get set up on their machines and I went to check in at the NICU's nurse's station. They gave me a brief orientation and showed me where to scrub in whenever we (or anybody) comes to visit Kinley. From here I was introduced to Dr. H who sat down with me to discuss Kinley's care. Dr. H informed me that Kinley was already on the high frequency ventilator. We also talked about the "honeymoon period," this is the first 48 to 72 hours where the baby tends to do well, but typically does not give an accurate idea of how the baby will do in the long run. Dr. H also wanted to make sure that I was aware that we would soon be riding the emotional rollercoaster of having a CDH baby. I felt that Dr. H delivered all of this information very well. After orientation and the meeting with Dr. H I had to wait in the lobby until they had Kinley settled into her new home. Unfortunately for me, Children's Mercy NICU has a shift change between 7 and 8 (both am and pm) where no one, not even parents, are allowed with the babies. This allows the nurses to exchange information without any distractions. I feel that this is a good practice, but I can also see how frustrating it can be to not be allowed to see your baby. Long story short, I had to stay in lobby until 8 pm before I could go in and see Kinley. Luckily, Kate (my sister, Kinley's aunt) came to keep me company and she brought the laptop so I could continue to update the blog. Kathy is doing well although she is extremely exhausted. Her parents and sister are keeping her company at St. Luke's. We are hoping that she will discharged tomorrow morning.

Transfer to Children's Mercy

After Kinley was stable at St. Luke's NICU (Neonatal Intensive Care Unit) they called Children's Mercy to let them know that Kinley was ready to be transferred. The four person transfer team arrived around 5:40 pm. They reviewed all of Kinley's paperwork and analyzed all of her stats and settings. The next step was to move Kinley from the hospital's machines to their portable baby care unit. I felt that this went very smoothly. The transfer team was very professional and extremely efficient through the entire process. Originally Kathy and I were given the impression that I could not ride along with the transfer team and Kinley, but they were more than happy to let me ride with our new baby girl. I am not allowed to ride in the back so I got to ride shotgun. The transfer team moved Kinley to the ambulance and were ready to go by 6:20 pm. The drive to Children's Mercy was smooth and eventless. Just the way we wanted it. We arrived at Children's Mercy around 6:40 pm and Kinley was in the NICU by 6:45 pm. We couldn't have asked for a better transfer and transfer team. If fact, all of the care we have received so far has been excellent. Thank you everyone for your help with our baby girl.

Sunday, May 25, 2008

Welcome Kinley Seep Melcher

After less than one hour of incredible pushing, by her beautiful mother, Kinley Seep Melcher joined us in the world. Kinley's main appearance came at 2:59 pm on May 25th, 2008. She was 6 pounds 13 ounces and 19 3/4 inches long. We were able to hear her cry, but she was soon intubated and being prepared for her move to St. Luke's NICU. At one point during her preparation I was allowed to help lift Kinley so her bedding could be changed. This was a HUGE moment for me because I have read so many CDH blogs where the parents could not pick up their children for at least the first month of their lives, due to the ventilators. Kathy was also given the opportunity to get up close with Kinley before she left for the NICU. Watching Kathy's face light up was one of the best moments of my life. We are parents now. That is so awesome and scary, all at the same time.

This is one of the first pics of Kinley at St. Luke's courtesy of Aunt Kate.

Kathy is a Champ!

Kathy's contractions had slowly been getting stronger through the morning. Around 11:25 am our nurse, Jill, checked Kathy and she was already dilated 4 cm. Way to go! At 11:45 am, Kathy received an epidural which helped to dull the pain, but it did not remove it. 12:20 pm rolled around and Kathy was still having pain with her contractions. Right before 1:00 pm Kathy was put on oxygen, for Kinley's sake, and tried to take a nap. Unfortunately her contractions were keeping her awake. At 1:20 pm Kathy received her second epidural and this one worked perfectly. By 1:50 pm Kathy was at 7 cm and no pain during her contractions.

A Little Help

Dr. G came by to see Kathy and I around 7:00 am. The only problem was that I was asleep on the couch and no one woke me up. During this brief meetings(of whispers,) they decided to get Kathy started on some drugs to move the birth process along.

Off to the Hospital

Yesterday, May 24th, Kathy and I (and Kinley) went to see Wicked with Kathy's family. It is the greatest play we have ever seen. After arriving home Kathy went upstairs to get ready for bed, but sleep wasn't on Kinley's agenda because around 12:45 Kathy's water broke. She handled herself with poise and after beginning the process of having her first child, grabbed her pre-packed bag and started CLEANING THE HOUSE!!! Meanwhile, I was running around the house trying to pack a bag (I procrastinate as well as Kathy prepares), attempting to convince Kathy to stop cleaning, and keep my heart-rate below 400. I succeeded at one - I left the house with a poorly packed bag.

We called Dr. G from the house to let him know the time had come and headed to the hospital. One good thing about leaving for the hospital after 1:00 a.m. is there are very few people to get in your way on the roads. We got to the hospital around 2:15. We were checked in and in our room around 2:30. Kathy and Kinley were immediately hooked up to monitors and we've been in a holding pattern since. Dr. G checked to see if Kathy was dialated, but unfortunately she was not. Kathy’s handling everything like a pro, and I continue to wonder how I could feel more useless.