A shunt for Tripp and a marathon for Natalie

Monday came and a head ultrasound was done. Tripp's ventricles are still normal newborn size, however, the plates in his head are spreading out. That is one of the first signs of excess fluid on the brain. Peter and Dr. Nagib decided that it would be best to schedule surgery for a shunt placement. I had to handle the news alone, as Kenny was with Natalie at her school marathon day. I was hoping so hard that we would get the all clear to go home. I did, however, pack the Halloween Kleenexes just for this case. I didn't want to rain on Kenny and Natalie's day, but I knew daddy would be worried if he didn't hear from me soon, so I called him with the news. Understandably, he was scared, angry, and sad. If you have ever watched your child hurt, for any reason or in any way, you can understand that anger is inevitably a part of the equation.
Surgery was scheduled for Tuesday at 1:15. While waiting in the surgery waiting room, I was organizing all the children's book, separating the books that were written in Spanish in to their own area and taking out all the Halloween books to "put on display". Jeni brought Natalie and Megan to the hospital to wait with us. Trust me when I say that was a very welcome distraction! Jeni, Kenny, and Natalie were throwing foam blocks at each other and building and knocking down each others houses! It was also good to see Natalie. I miss my little bug more than I have ever missed anyone in my life. After Tripp was out of surgery, we were told that everything went wonderfully. He was brought back to NICU for observation through the night.  Natalie wanted to see him so bad, but because of the nature of his surgery, mom and dad said no to that. I can't imagine the headache he must of had! His head was all bandaged so we didn't get to see what the incision looked liked, but we did get to see the little incision on his abdomen. Dr.Nagib was extremely thoughtful and saved his hair from where they shaved it as his 'first haircut'. He's had his first haircut before his sister. :)
This morning he is doing well. He's still pretty sleepy and you can tell he's in pain with a lot of movement, but Tylenol seems to help with that. He's eating 100ml's at a time (a little more than 3 ounces!) and that's down slightly from 120ml's before surgery. Eating is definitely NOT his problem! He will be staying in NICU, at least for the time being, because all the rooms in ICC are full. Which is okay with me. I'm just glad he is doing well enough to be transferred if he there was room. Dr. Marker came by and we were told that Friday looks like the discharge date if all continues to go well. If Dr. Marker says that, Kenny and I are pretty sure it will happen since he his so cautious and the one that wouldn't let us go home the end of last week. Of, course, we are keeping our hope in check *just in case*.
Natalie had her school marathon on Monday at Baylor Park. She walked had daddy carry her 2 miles and raised $150.00. Her entire school raised over $6000.00! Jeni took pictures of her and daddy and in their matching sweatshirts. Natalie has a field trip again today to the fire station. Dad was suppose to go along to chaperon, but is staying with us instead. Aunty Jeni is to the rescue again, and going with her and her class. I'm sure she will have a blast. All the kids in Natalie's school know my sister because her kids go to school there and she helps out with everything there.
I have said many times how much I love my sister. I cannot tell you how much that love and admiration has grown for her over the years. She is such a remarkable person. The love that she has for her kids as been a guiding influence on how I am as a mother. The love she has for my kids equals that she has for her children. There is nobody in this universe that I would want helping me with my kids than her. Kenny feels the same way and I feel overwhelmingly blessed that she is such a big part of our lives. Thank you, Jeni! I love you and appreciate you more than you know and I will never be able to repay you for all you have done for us!
For those of you that are curious, Tripp had a VP shunt placed. You can click here for more information. There is a lot of information out there, so don't get overwhelmed looking. The information is not specific to our child, so what you read is just a general overview.... Like all the information out there, take what you read with a grain of salt. If you have questions specific to Tripp, ask us! We will tell you what we know and get the answers if we don't.

The LONG wait

I cannot tell you how difficult the last few days have been and yet I know that I will look back on these times and think "that wasn't sooo bad." Tripp has been transferred from the NICU to the ICC (Infant Care Center), a step down unit. His back is healing from surgery, but fluid is building up at his incision site. He had 22mL of fluid removed yesterday and more today. The good(?) news is his ventricles are still too small for a shunt. I question the nature of it because we have to wait until Monday for another head ultrasound to determine whether he will stay and get a shunt or we will be sent home and he may have to have a shunt at a later date. In all honesty, I don't know if it would be better to just stay and get it over with or have a break and get to go home for a little bit. I don't know if I would come back without kicking and screaming.
Last night, we were unable to get in to the Ronald McDonald house for the night, and most likely the weekend. After a lot of back in forth in our heads and to each other, Kenny and I decided to go home for the night. I had to go through my bags and repack only what I actually used and do some laundry. It had been over a week since I was home. We got Natalie from my in-laws and cuddled on the couch watching movies for a couple of hours. It was glorious! Even having her "need" to take a shower with me and watching me like a hawk while I pumped breast milk did not deter my good mood at being home. The ache for my son, however, was huge. I wanted him there so much and yet I felt like I couldn't imagine being stuck in his room for another minute.
I was so happy to see him this morning, to hold him close and kiss and snuggle him. I broke hospital rules and let Natalie hold him so I could get a picture of them two. Natalie was so excited to finally hold her brother. She wouldn't let Kenny take him out of her lap! She also had to help "eat" (feed) him. I'm trying to work on how to phrase that with her. :)
If anyone in blogger land would like to help out, click here. That will bring you to a page where you can buy a Spina Bifida awareness t-shirt with proceeds going to help cover medical expenses. Thank you to all for your love, support, and prayers. They mean the world to us.

He's Here!

Kenneth Wilbert Buesgens III made his debut on September 25th, 2014 at 10:17 a.m. He weighed 7 pounds, 9 oz and measured 17 1/2 inches long. Mom, Dad, and Big Sister Natalie think he is perfect and are beyond excited that he is finally here. Aunty Jeni, Nana, and Boppy were all at the hospital waiting to meet him for the first time.

We had to be at the Mother Baby Center at 7:30 in the morning to prep for a 9:30 C-section time. The surgery went off without a hitch and I heard his beautiful cries as he was taken out of my tummy. The anesthesiologist and nurse anesthetists were wonderful talking to me and explaining everything as it was happening. They even took a few snap shots of Tripp as he was coming out. I felt like I was going to throw up and pass out when they administered the drugs. I became very bradycardic (I had a heartrate in the low 40's) and my blood pressure dropped low. Those things are actually very normal when being given high doses of sedatives. That is why you are monitored very closely and I was given epinephrine and a blood pressure medication to counteract those effects. After I was all sewn up and monitored for an hour, I was wheeled to see Tripp who was already in the NICU. He had his first bowel movement in utero but did not aspirate it. Which means he pooped inside of me, but did not breath any meconium (baby's first poop) in to his lungs. He was hooked up to various monitors but was breathing on his own. Dad was with him the whole time and was already wrapped around his finger by the time I got to meet him!
His back surgery was scheduled for the next day (Friday) at 7:30. As you can imagine, we were very anxious and nervous for him to have it done. The neurosurgeon team- Theresa, Peter, and Dr. Najib- came to my room around 10 to tell us that the surgery went wonderfully. We were told that there may initially be more paralysis immediately following surgery, but some of that may resolve as the nerves heal from the trauma of surgery. We are happy to say that he moving his legs really well and his does move his little clubbed feet as best as he can. Dr. Marker has already started him on some foot and leg exercises that mommy will have to do multiple times a day with him. It's been a few days and all of his tests have come back promising. He had a pneumo-cardiogram, head ultrasound, kidney pressure test, and a couple of others that I have already forgotten what they are called. As of today, he does not need a shunt. We are told to expect that he will before to long. 90% of children with SB will need a shunt within the first year. 100% of those that have a shunt put in within the first month of life will need it replaced by the time they are one. While we know we are not out of the woods, the longer we can hold off on him having one, the better the healing his body will do. His incision is puffy, which is a good indicator that he will need a shunt sooner rather than later, but it's also better to be collecting fluid there than on his brain. Peter said they may need to drain some of the fluid from his back and that can buy a little more time.
Tripp was moved from the NICU to ICC, a step down unit yesterday evening. Dr. Marker is saying maybe he will get to go home on Monday. I'm pushing for Friday. I figure that Dr. Marker is not here on the weekends and we can bring him back first thing Monday morning to be evaluated. Kenny keeps telling me to be patient, but it's been extrememly hard on me to be here with Tripp and away from Natalie. I haven't seen her for two days and it's killing me on the inside. I have to be very careful not to think too much about it because when I do, the tears start flowing and don't stop. I know that these emotions are to be expected, but they have led me to some pretty dark places at times and I truly don't feel strong enough to find my way back. My friends and family have been extraordinary to me. I have the best family and friends in the whole world. They have been here to see me, call me, text me and let me know that they are thinking of me, and more importantly, praying for me and my family. They are the type of friends that I know I can call on anytime day or night and they will be there. I am so grateful for you guys. I love you more than you know!
Mothering duty calls- :)

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My life- as a wife, mother, sister, caregiver, daughter, career woman- uncensored.


Liberal Catholic. Working mom. Chronic pain warrior. Opinionated introvert. I speak fluent sarcasm. I'm married with two kids- a girl and a boy. My son was born with Spina bifida, hydrocephalus, Arnold Chiari malformation, and bilateral club feet. I may blog about food, politics, religion, medical updates, or our life in general.

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