My sweet little girl keeps getting better! (Mon 1/5/09)

I arrived at the hospital and saw the doctor and a number of nurses standing outside of Kenzie's room. My heart fell...only to be greeted with smiles and assurances that they were only doing rounds and she was doing great. Their plan was to wean her completely off the nitric oxide today, as she was only at 5 ppm. When she arrived at Children's, she was at 30! They were supplementing her oxygen at 25%, and her blood gases were still very good. If she continued improving, the doctor said they may even try to take her off the ventilator today or tomorrow! What wonderful news this was!!!


I could see her from the door and she was so pink! The nurse told me that she had a couple of very full diapers, so she wasn't very puffy either. She was awake almost the whole time we were there. The charge nurse got her a mobile to look at since she spent so much of today awake and alert, she wanted something for her to look at. Someone also put a bow in her hair this morning. She looked so cute. And her big sister, Kailey, will be so proud. She cannot wait to get her home and put bows and headbands on her little sister!

We actually left while she was still awake and I could feel her watching us...it was very hard to leave her today.

I am so happy I could jump up and down!!! (Sun 1/4/09)

I called this morning to check on Kenzie and was given some very good news! They had just taken her off the oscillating vent and put her on the conventional vent and she was completely off the blood pressure meds. She actually did very well on the CPAP while they were switching the vents, but the doctor did not want to push her since they had already done so much. She was no longer sedated and the nurse said that she had to make sure that she was wrapped up really good because she was pulling at the breathing tube. She said she was a pretty feisty little girl!!!


The room was so quiet now that she was on the conventional vent. The oscillating one was so loud. I am confident that if Kenzie could sleep with all of that noise, she will be able to sleep through anything once she is finally able to come home!


She now remains on the vent, nitric oxide and oxygen, but her levels are much lower than they were when she arrived at Children's Friday night.


While I know that we are not out of the woods yet, I am amazed at how much better she is doing. I am trying to be cautiously optimistic, but am very pleased at how well my little fighter is doing!

I saw God today... (Sat 1/3/09)

I just love that song by George Strait...so I borrowed the title. And it really means more to me now that it did before I had Kenzie.


What a blessed day we had Saturday. I was discharged from the hospital...I have never seen a nurse move so fast! She knew I was anxious to get to Kenzie so she didn't mess around! I am very thankful to everyone at Medical Center of Plano for everything that they did for us during our stay.


When we got to the hospital, we were greeted with very good news. They were continuing weaning her off of her meds and the machines. We were able to change her diaper and she opened her eyes. I could really feel her looking at me...I could feel that she knew who I was. I could see Kenzie in there, fighting away.

By the end of the day, she was completely off the dulbutamine, one of the blood pressure meds, and they were working on weaning her off the dopamine. They were also able to lower her nitric oxide and oxygen and reduce the pressure on the ventilator. She is also completely off her antibiotics and has not run a fever since she arrived. She is already improving and the nurses and doctors are amazed at how quickly our little girl is doing. The doctor does remind us, though, that she is still critical and that she could turn for the worse, but we are basking in the good news for now.

Finally...A little good news (Fri 1/2/09 pm)

It was after 9:00 by the time they got her settled into her room and the doctor saw Kevin. Kenzie was stable and tolerated the move beautifully! Kevin was pretty frazzled with all of the activity, rightfully so, and I was still in the hospital for one more night. My mother, cousin, and a friend were with me and we had a minister come pray with us. I called the nurse to check in on Kenzie and received some positive news...the first positive news we had gotten in a long time. They were working on weaning her off of everything gradually since her blood gas tests were coming back so good. Her oxygen levels were still over 100 and stable. They had actually already reduced her dulbudamine from 20 to 12. They reduced the amount of oxygen she was on from 100% to 85%. The nitric oxide was reduced from 30 to 20 and she no longer had a fever. I was relieved by the news and it provided comfort that the move was definitely the right thing to do.

A very bad day??? (Fri 1/2/09)

We received a call at 7 am this morning from the neonatologist. They did another chest x-ray and blood gas at 4 am. The chest x-ray still showed no air in the chest cavity, however, they were still a bit hazy. They think there may still be some fluid in them, but think that the nemothorax is no longer an issue. However, the blood gas numbers decreased. They put her on nitric oxide gas to assist in circulating oxygenated blood throughout her body as well as utilize dopamine (a blood pressure medicine) to increase her body's circulation pressure. The example that was given to me was of a person my size trying to get through a hallway blocked by a 400 pound person. The nitric oxide would work to make the 400 person smaller and the dopamine would work to make me bigger. This would equalize the size of each person and allow the other to pass. So basically, both the nitric oxide and the dopamine are required to get the lungs arteries to open up to accept the blood from the heart and the dopamine is needed to get the blood out of the lungs and circulated through the rest of her body. It is starting to feel very desperate. While we aren't maxed out on the settings of the vent and meds, we are getting close to running out of options.

We went down for the 8 am "touch time," we were informed that the doctor decided to also put in a ventricular line. This would be used to inject medications as the IV's in her arms were too delicate to keep using. They also put her on a second blood pressure medicine to assist with the first called dulbutamine. She was also going to be moved to a quieter area in the NICU as her current location was a bit noisy and she did not tolerate stimulation well. We also informed that we could only see her during touch times and that it could only be Daddy and me. I left the Dandle Doll with Kenzie and the nurse also gave me the idea of putting pictures of the family in her bed. I left the NICU feeling very distraught and helpless. I felt like we were fighting a losing battle.

We anxiously awaited the 12 pm touch time, and when it finally arrived, we were met in the NICU with more chest x-rays. They had to administer the surfactant because her oxygen levels had fallen and they could not get them back up. They also changed the type of ventilator that she was on. She was originally on a conventional ventilator so they moved her to an oscillating or HI-FI vent. The new vent would use vibrations to help distribute air into her lungs instead of the single puff of air that the conventional vent provides. We left before the vents were changed and we didn't get to change her diaper or even touch her this time because of all the activity,

At 3pm, the neonatologist came to my room. She informed us that while Kenzie was "stable," she was not responding to the changes as quickly as they hoped. She felt like we needed to look into transporting her to Children's Medical Center in Dallas as soon as possible before she got worse and then transporting would be riskier. This was quite a shock because we really didn't realize that we were at that point or that it was even an option. Medical Center of Plano's NICU is one of the best ones around, turns out it was level 3, it was hard to believe that she would need to be moved to another hospital! She asked us to come down to the NICU so that we could be there while they prepared her for transport.

When we got to the NICU, we were informed that they would be transporting her by helicopter and they would be there in the next couple of minutes. I was terrified, we thought it was going to be by ambulance. The fact that they were doing it by helicopter means that it was more urgent, right? Once the transport team arrived, the paramedic reassured me that they used the helicopter because it was easier than the ambulance. This made me feel a bit better. I met the team and then they began to work on transferring everything. This process took 1 hour and 45 minutes! They had to transfer every medication, gas, machine that she was on, one by one. After each one, they would monitor her stats to ensure that she was stable and would tolerate the changes and she took each one beautifully. The biggest surprise of all was when they changed her vent, the very last thing to change. Her oxygen levels were below 100, around 75, on the old vent. As soon as they changed over to the portable one, they did a blood gas it was over 300! The paramedic even ran it a again to make sure it was right and it was under 300, but still very high. We viewed this as a sign that this was a good move. The loaded her up, let me say good-bye and took her off to Children's.

Happy New Year (Thurs 1/1/09)

I woke up Thursday morning with a plan of attack. I needed to pay attention to the doctors and the information that they were sharing with me. I needed to ask questions...make them spend as much time as they needed in order to make me understand what was wrong with Kenzie and how they planned on attacking this disease and helping her get better. I started a journal to monitor the tests and their results to monitor our progress. I felt stronger and more involved in her care.

4 am - blood gas and chest x-ray: Blood gas numbers monitor the amount of oxygen in her blood and the acidity. These numbers have remained stable from the previous tests, however they are still not optimal. The chest x-ray shows that the nemothorax appears to have resolved itself, as there is no additional air in the chest cavity leaking from the lungs. This is positive news and we are very happy.

11 am - Blood gas: They remain stable, therefore, no changes will be made to her pressure settings on the ventilator or her medications.

2 pm - Again, blood gas is stable, no worse or better from previous readings. While this is good, the neonatologist is hoping to see some improvement soon. Also, an echo cardiogram was performed this afternoon. There are 2 valves in the heart that close soon after birth, and the tech thinks that one of them may still be open. We need to wait to hear back from the cardiologist to confirm.

4 pm "Touch Time" - Since Kenzie's condition classifies her as "low stimulation," they are only "touched" a couple of times a day. During this time, their diapers are changed, turned, adjusted, etc. and the family is allowed to help. Nonnie, Daddy and I went down to the NICU for this one. Daddy was able to take her temperature and Nonnie and I changed her diaper. It was good to be able to interact with her, even though she was still hooked up to all of the machines. In a small way, it felt like caring for a normal newborn.

5 pm - Another visit from the neonatologist. The cardiologist believes one of the valves in Kenzie's heart is still open, thus creating the pulmonary hypertension. Time is needed to see if the valve will close on it's own as well as give the lungs more time to develop. The original plan was to start to try weaning Kenzie off of the respirator, but this will have to wait until the valve closes and the lungs get stronger. Very disappointing news.

8 pm - Blood gas tests return numbers that are the highest so far! We are happy to get some form of good news. The nurse reminds me that this is how it works in the NICU...sometimes you get steps forward only to take steps back.

11 pm - Blood gas numbers stable.

The Bad News (Wed 12/31)

Kenzie has been diagnosed with PPHN - Persistent Pulmonary Hypertension of the Newborn. After much researching on the Internet (I am not doing this anymore because there is some scary stuff out there...) and discussions with her doctors, I have learned that this is a very serious disease. When a baby is in the womb, their lungs are not needed. So the arteries in the lungs are bypassed and the heart circulates oxygenated blood that is received through the placenta. When the baby is born, a "switch" is flipped to divert un-oxygenated blood from the heart to the lungs. Basically, Kenzie's "switch" did not work correctly. Therefore, her heart cannot push the blood into the lungs to pick up oxygen to move through her body.

The neonatologist came to my room to deliver the news. She said my baby was in critical condition. The nurse gave me a small pink blanket shaped like a doll, called a Dandle Doll. It was for me to sleep with next to my skin and then to leave with Kenize. It was a sweet idea, but it was also very sad.

It was New Year's Eve. Kevin and I had our "Celebration" dinner in my room and hoped 2009 would bring better news.