This is Liam writing this posting. I can't believe I'll be a month old tomorrow. Life has been weird outside of mommy, but I'm slowly getting the hang of this "real world" stuff.
Isn't this blog coo. Mommy said I could write in it whenever I want. This is my first postin....but be on the lookout for more. And there are lots more pictures of me at http://monkeytails.shutterfly.com/. Mommy is doing her best to keep pictures posted and up-to-date, but I take up a lot of her time (and hands).
I know most of you reading this know that I had to go up to The Children's Hospital in Denver a couple of weeks ago. It was my first road trip and I have to say, I prefer to ride in the car seat in mom or dad's car versus the incubator transport system the hospital drove me in up to Denver. Not cool...and they had to stick this tube down my throat to make sure that I kept breathing. That tube made my throat a little sore, but it wasn't too bad. I know mommy and daddy were scared at that point.
I know many of you are wondering what actually caused me to end up in The Children’s Hospital in Denver a few weeks ago and where we are today. As you probably know, I came home from the hospital with mommy and daddy a few days after delivery. (Did you see my cute hospital pictures??). Everything was going well...and I was feeling good. I was eating and sleeping and pooping - I loved my new life outside of mommy. And, my room was awesome - jungle animals - my favorite. On that Tuesday (October 26) after I came home, Grandma Douglass was holding me and all of the sudden something inside of me started to hurt and I started to cry. And, I was having a hard time getitng comfortable. This is Liam writing this posting. I can't believe I’m a month old. Life has been weird outside of mommy, but I'm slowly getting the hang of this "real world" stuff.
I know most of you reading this know that I had to go up to The Children's Hospital in Denver a couple of weeks ago. It was my first road trip and I have to say, I prefer to ride in the car seat in mom or dad's car versus the incubator transport system the hospital drove me in up to Denver. Not cool...and they had to stick this tube down my throat to make sure that I kept breathing. That tube made my throat a little sore, but it wasn't too bad. I know mommy and daddy were scared for me (they worry too much!).
Many of you are wondering what actually caused me to end up in The Children’s Hospital in Denver a few weeks ago and how I am doing today. As you probably know, I came home from the hospital with mommy and daddy a few days after delivery. (Did you see my cute hospital pictures??). Everything was going well...and I was feeling good. I was eating and sleeping and pooping - I loved my new life outside of mommy. And, my room was awesome - jungle animals - my favorite. On that Tuesday (October 26) after I came home, Grandma Douglass was holding me and all of the sudden something inside of me started to hurt and I started to cry. And, I was having a hard time getting comfortable. I was still kind of hungry, but I had started to have trouble breathing as well. Daddy held me for part of the night and then mommy took her turn. I still wanted to eat from mommy, but I was struggling and mommy and Grandma Liebsch could sense that something was wrong. I finally fell asleep but mommy called the 24-hour number for my doctor, and they said that we should go see my doctor the next morning.
Wednesday morning (October 27) was about the same as the night before - I was still uncomfortable. We went to my doctor's office and from there we were asked to go to the ER. I started to notice my skin color changing - I wasn't pink anymore...but was really white. And my darn breathing - I still grunted when I breathed. I could tell the doctor was concerned.
The ER at the hospital looked a lot different than where I was when I was born. At the ER, they admitted us to the pediatric care unit where they started to run more tests and monitor my breathing and then from there moved us to the Intensive Care Unit. I did not like all of the poking they were doing on me. And, there were a lot of nurses and doctors touching and staring at me. I could tell they were worried, but I did not have the energy to stay awake so I decided to go to sleep. In the ICU, the doctors decided to do a spinal tap and an ECHO on my heart and a “million” other tests. After they did all of these tests, the original theory was that I may have critical aorta stenosis. Aorta Stenosis is caused when the valve between one of the heart chambers and the aorta (the artery that pumps blood from your heart to your body) is too narrow and doesn't function properly. This thought process led the Colorado Springs doctors to transport me to Denver's Children's Hospital where there were more cardiac specialists available to assist small people.
Because of some of the drugs that they had started me on in Colorado Springs, the transport team had to put the tube down my throat. When we arrived in Denver, they informed mommy and daddy that I had depressed heart function and a weak left ventricle as well as very high blood pressure. Throughout the night in Denver, the team of doctors were doing everything they could to try and stabilize my heart and blood pressure. They started me on medicine for my blood pressure as well as some medicine that would help my heart beat stronger. And – it worked!
The true issue – the high blood pressure. In adults, high blood pressure happens, but in young children (especially infants like me), high blood pressure is usually secondary to another problem. What was causing this? I had no idea – I didn’t think I did anything wrong.
Throughout the 4 days and nights that we were in the Cardiac ICU in Denver, the doctors ran numerous labs and tests and scans and MRIs and Ultrasounds and ECHOs – but are still looking for answers to the high blood pressure question. They were able to rule out (for the time being) the theory of critical aorta stenosis. The doctors did notice a small narrowing of my aorta but they do not believe that is causing a lack of blood flow that would cause the high BP. They also noticed that my aortic valve is a bi-cuspid versus a tri-cuspid - which is what most of us have. They don’t think this is a problem for me right now, though – but could be in the future. And about 1% of the population has a bi-cuspid valve – do you? My cousin Jonah in Texas has a bi-cuspid valve. They’ve also asked to have mommy and daddy checked because this can be hereditary.
The doctors are still stumped as to what caused the depressed heart function and weak left ventricle and high blood pressure. Although they were able to stabilize those areas with medication, they need to know what caused those problems so that we can fix it. Is it an endocrine problem? A metabolic problem? A genetic problem? A problem that sometimes just happens and will go away in 6-9 months? All answers they’re searching for. My vote – I hope it just goes away and there is nothing wrong with me. I’m not a big fan of the doctor’s offices.
By the time we left Denver 2 weeks ago, I was doing well without much medication. We left on blood pressure medication and my BP is steady, and my heart function had improved and we were looking good.
In Denver, I was slowly gaining back my weight that I had lost since birth. However, over the last couple of weeks, I started to lose weight again. I was pretty tired and a little fussy for mom and dad. After two visits to our doctor’s office over the last 2 weeks, I was still not gaining weight. With everything that is had been going on with me and with some unanswered questions still out there, our doctor sent us back up to Denver on Tuesday. I was about a pound less than what I was at birth – I weighed 7lbs 10 oz at birth. It is normal that a baby loses some weight after birth, but by about 2 weeks, they should be back up to their birth weight.
After some deduction and some truly scientific experiments at home, though, mommy began to think that part of the weight loss was caused from breastfeeding. Since we came home from the first visit to the hospital, I had been feeding “weird” from mommy, but I didn't think too much of it (it’s really hard for me to communicate with mommy and daddy right now). However, the other day, mommy did a round of pumping to see how much breastmilk she was actually producing, and it turned out it was not much – this is why I was so hungry and irritable. So, mommy immediately started me on some stored pumped breast milk that she had from the first hospital stay. Immediately, I felt better and mommy and daddy noticed a change in my behavior. Much less fussy after feedings and much more alert.
We are now home, but I really liked my all of my nurses and doctors up in Denver. We were mostly there for observation and calorie counting, but I think the fact that we had to come up here qualifies me for the "failure to thrive" title which means the doctors also looked at other factors as to why I was not gaining weight. (They should really come up with a better term for “failure to thrive” – it’s so negative). I’m doing pretty well though..eating and pooping – but I’m still spitting up some of my food. My stomach gets upset sometimes after eating and it causes me to cry and throw up some of my food. But, I think we’ve figured that out. I’m trying not to eat as fast and mommy and daddy are monitoring how much milk I’m drinking at one time. Feeding times takes awhile, but my food is staying down and my stomach is not upset either.
Since we were up in Denver again, the doctors took the opportunity to re-run some tests and labs that came back abnormal from my first stay here. From what we have been told, the abnormal tests results from before have apparently worked themselves out as they came back normal this go around. They did take me off my blood pressure medicine, but after another ECHO on my heart, the cardiologists decided to put me back on the medicine until I see my new cardiologists, Dr. Duster, in Colorado Springs. But, My BP is staying steady –when I don’t cry too hard. And, I have started to gain weight. I gained 5 oz the first two days in the hospital and then another 4 before we were discharged. Yay…..I’m on the right track.
The Children’s Hospital is AMAZING!!! The teams of doctors and nurses are so caring and have kept mommy and daddy in the loop every step of the way during both of our visits. I really got used to sleeping in my own crib at home - hospitals do nothing for getting a good night’s rest with folks coming in to do vitals and checks every couple of hours – so I’m so excited to be back at home.
Later this week, I get to meet my cousins, Tyler and Madelyn, for the first time..and my Aunt Kellen and Uncle Andy. I’m so excited. And, Grandma and Grandpa Liebsch and Douglass are coming to celebrate this holiday called Thanksgiving. Apparently, you get to eat a lot of food and then undo your belt after you eat and watch football all day. Sounds like a weird experience…but I do like to eat and sleep….and I’m going to do my best to get along with Tyler and Madelyn.
Gobble Gobble…..Happy Thanksgiving to everyone.
Love, Liam
PS - Thanks for the bib Aunt Debbie!
