So I'm sitting at my computer and tears are running down my face. I'm on empty and I still have a hundred miles to go. Tripp has been super crabby the past couple of days and yesterday when I got home from work, I noticed one of his casts has slipped. This could be what the issue is, but with all of his other health problems, you just never know. I feel like I'm constantly over reacting, but then I'm guilt riddled if I don't do something. What if this is the time it's more serious and it's his shunt? What if he ends up back in NICU? So today I called in to work and spent the morning on the phone with various people and will spend the afternoon various clinics. I have to bring Tripp to his specialist in Minneapolis and then to Gillette's to get his casts redone. Meanwhile I feel like I'm a huge disappointment to my work for always having to call in. There always seems to be some medical emergency I need to tend to. I feel guilty because this is the second time I've had to cancel meeting a person to pick up something I bought from them. I don't feel like I can make any plans farther than an hour out otherwise I'm going to end up disappointing someone. Tripp is screaming his head off and Natalie is yelling for him to be quiet so I better go.

My computer was out of commission for a few weeks while a friend of Kenny's looked at it to see why it was running so slow and kicking me off the internet for no apparent reason. Believe it or not, I had written a whole post about bringing Tripp home and adjusting to life out of the hospital. I thought I had posted it and everything when- surprise!- it wasn't here when I checked. It didn't save or anything, so I knew my computer was bugged. I'm glad to say that it is running wonderfully now and I'm so grateful to tech savvy friends!
Not only did I not have a computer, I don't have my computer room due to delayed construction on our house. Back in April, Kenny and I decided we needed to convert our deck into a four season sunroom. We found a company and contracted them to do the work. We were told they were backed up and wouldn't be able to start construction until the end of September, first week in October "at the very latest". Yeah. I can tell you how smooth that went. They finally started construction last week. The room we were using as the computer room is now Tripp's bedroom with my computer set on a card table and my desk in our dining room, next to the kitchen table. Things are crowded and cluttered at the moment, making getting back to normal with a newborn even harder.
We were discharged from the hospital October 9th at 9:30 at night. We had to wait until that late so Tripp could be circumcised before we left. After working with geriatric patients for my entire career, I knew that I would want my son circumcised. But after all he had been through, I did not want to cause him more trauma and pain. However, because of the spina bifida, there runs a (high) risk of having to catheritize to empty the bladder and not cause back flow into the kidneys. I was not aware of this as I 1. am not a male, 2. do not work with infants, and 3. did not have another son, but you can not pull the foreskin back on an infant. That would make cathing him a lot more difficult. So, we had to wait until a doctor came on that could do it and then they had to recheck him in an hour because he's a "bleeder". My poor little man. We didn't tell anyone that we were coming home that night because we wanted to surprise them but then we ended up getting out so late that we just went home and slept. It was kind of nice, though, to go home and just be. The only thing missing that first night was Natalie.
Since being home, Tripp has been doing great. We have had appointments 4 out of 5 week days since coming home. Tripp has had weekly head ultrasounds to check his shunt and overall progress and is doing so well that we have a few weeks off. From that doctor anyway. Tripp started getting casts put on his legs to begin to correct his club feet. We are doing the Ponseti Method which involves getting a new cast on each week, sometimes twice a week, for 8 weeks. The casts go up to his hips and are on both legs. It gently stretches them until they are back in normal position. After that, his achilles tendon will need to be surgically lengthened and another set of casts will be on for a full 3 weeks while it heals. Now, I say gently, but let me tell you that it still is very uncomfortable. It has been likened to getting braces tightened. Is it out right painful? No. But it does agitate and annoy him. As a parent, you put yourself in your kid's shoes. What would I like? How would I feel? I would HATE it. Not being able to bend my legs, itch them, or curl up...the thought makes me start to panic. That is where the devastation, anger, and depression comes from with all of his diagnosis. Putting myself in his onsies and knowing there is not one damn thing I can do to ease his trials. I am grateful that he's young enough that he won't remember all of this. Tripp also had to go to a pediatric eye doctor. With spina bifida, there is an increased risk of having crossed eyes and with hydrocephalus there is a higher risk of having extra pressure put on the optic nerve. He has to go back in three months because his optic nerve is not the right color. Apparently, that could be due to immaturity of the eye (normal newborn stuff) or a damaged optic nerve. Only time will tell.
I'm not sure if I'm missing something or not, but if I did, it will have to wait for another post. My babes need some cuddle time.

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.

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.

Wednesday, July 30th, we went to Abbott Northwest for a fetal MRI of baby B. After that, we were scheduled to meet with a doctor for a "transfer of care" appointment. This appointment was for me to meet the new doc that would be taking over my OB care until I deliver and for them to get to know us and our expectations/desires for the remaining pregnancy.
After being brought 3 different places, we finally arrived where we were suppose to be for the MRI. I have had MRI's before, so I kind of new what to expect. I was to lay very still in a small tube for about 30 minutes. This appointment was early in the morning, so I had no problems just laying there! I was told to hold my breath anywhere from 20 to 30 seconds. This is where things got tricky. I'm overweight and 31 weeks pregnant, lying flat on my back. Breathing was already compromised, but then I was to hold my breath over and over again for them to get all the images they needed. It not only depended on me holding my breath, but also for baby B to cooperate and hold still. Needless to say, it took a lot longer than it was suppose to!
After the MRI, I was on my way to my doctor's appointment. I had to fill paperwork out that asked the same information I had already given to the social worker, genetic counselor, and nurse manager, all of whom were with the same office. The nurse came in to go over the paperwork with me, (all the same information was in their computer system) and to get my vitals and collect urine. In the middle of talking, their came a very annoying and loud buzz from the hallway. It was the fire alarm. Kenny, Natalie, and I were then ushered from the room and had to go down five flights of stairs and outside. When the fire department arrived, we were given the all clear to go back in. The appointment resumed and a nurse midwife came in to talk to us. Again, I was asked to go over my history and asked the same questions. Then we were told we would have to come back to meet with the doctor for the second part of the transfer of care. At this point, I was crabby. Not just annoyed crabby, but angry crabby. On Monday we have 8 hours of appointments we need to be there for and you want to fit one more redundant one in?! Why the heck can't we do it all at once? Or better yet, can't they just read the notes and only talk to us about things we haven't been over ten times before? This is a 45 minute drive one way, 3 hour appointment, and we have to pay almost 10 bucks in parking EVERY time we go.
 Now I am going to say that I am truly grateful that there are places like this out there, giving our baby every advantage he can get. I appreciate they are so thorough and take the time to get to know us and make sure nothing is being missed. I just wish they were a little more respectful of our time and how this diagnoses has completely turned our lives around. For those who have gone through something like this, I'm sure you can relate to what I'm about to say next: I want things to go back to normal. I crave normalcy. I know that I will have to get used to this new normal. But right now, I just want some sort of routine or some sort of resemblance of what my life was pre-sb diagnoses. Now, instead of fitting OB appointments in when I have off work, driving to my local OB's office that is in the same town I live in, and my doctor knowing me, my history, and all my preferences, I get to start over at a new clinic, with new doctors that don't know me and I will probably (God willing) never see after I deliver, taking full days off to go and see, and driving an hour and a half to go to. It's just been very overwhelming and has taken a toll on my mood.
After my appointment, I had to go into work. I was not in the best mood. Some days are okay, some days aren't. This was definitely not a good day for me. That all changed when I got a text from a friend who is expecting a boy that she has decided to place for adoption. She wanted to tell me that she has decided to give her baby to a couple that I introduced her to! I was, and am, ecstatic! This couple is made up of my best friend (and husband's cousin), and her awesome hubby. After trying fertility treatments for about two years, they decided to look into adoption. If you aren't familiar with adoption or know very much about it, I highly encourage you to look into it. It's an amazing thing that my family has been blessed by a few times. (Both sides of it- adopting a child and placing one for adoption.) This gives them a little under 2 months to get all their affairs in order. I will write more about this at a later time, as this entry is already fairly long. I am asking for your prayers for both the birth mom and the (hopefully soon-to-be) adoptive parents. I pray that the whole adoption process will go smooth, that God grant's the birth mother "His peace, which transcends all understanding" (Phil. 4:7) in her decision, and that, above all, His will in this child's life will be done. Thank you for your prayers and support!
Thursday, I was called with the MRI results. The good news is nothing has changed from the ultrasound. The spine splits where they thought it did, the chiari malformation is a level 2, which is what they were guessing, and NO signs of hydrocephalus, which is wonderful.