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.

Computer, casts, and construction... Oh My!

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.

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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Add it to the list...

Baby B has been progressing wonderfully. We had a growth ultrasound today and he is measuring over all in the 36th percentile for size. The best news is there is still NO sign of hydrocephalus. He is still breech which doesn't change a thing since we already scheduled a C-section. He also has been a little stinker at our weekly appointments. Although he still scores 10/10, he needs a lot of encouragement to move around and accelerate his heart rate. Today, I was told I have the beginning of preeclampsia. My blood pressure, which is normally 100/60, was 138/64 today with protein present in my urine. My feet have also swelled up and I have been exhausted. I was told to take the day off, stay off my feet, and I have to go back in Friday to be rechecked. If my bp is at 140 or higher, there is still protein in my urine, and any labs come back abnormal, my C-section will be moved up to the coming week.

Last Thursday, my sister (who has a seizure disorder) started having seizures around 6 a.m. We are unsure of how many she had throughout the day. Around 5 p.m., she was brought to the ER by her step-daughter, Megan. Kenny and I met them there and counted at least 6 seizures in about 3 1/2 hours. She stayed in the postictal stage, never fully coming out of the seizures. She was admitted to the local hospital's ICU on a Dilantin drip to try and stop the seizures. Around 6 Friday morning, she was sedated and intubated and the decision to transfer her to Abbott Northwest's Neuro ICU was made. She continued to seize even after being put on a propofol drip. Around 10 or 11 that morning, they were finally able to stop all seizure activity. She would stay intubated, sedated, and restrained until Saturday. They had also placed an NG tube to give medications orally that could not be given through her PICC line and would be utilized for nutrition if needed. She was in the Neuro ICU until Sunday, when she was transferred to the epilepsy floor at ANW. She was discharged to home on Tuesday and has been slowly recovering since. 

I cannot even begin to express my deep sense of fear, loss, and uncertainty seeing my baby sister like that. I am very close to her and our relationship has always been on the top of my priority list. To say I lost it would be an understatement. I had no idea what was happening to her. What was causing these? Would she come out okay? Would she come out at all? I "prayed without ceasing" for 5 days. Seriously God?! You haven't given me enough to deal with that you thought you would just add this? What greater good can come of this? What is this suppose to teach us? I highly doubt I will ever get those answers during this lifetime. Funny thing was, I kept talking to her. About everything. Everything that was going regarding her, her kids, life, the weather. I didn't stop talking to her. And, guess what? She answered me. Not out loud. Her lips didn't move. But I could hear her replies. Most of them were on the smart ass side, which is totally normal for her. :) But I felt confident and at peace with every decision I made for her or on her behalf because I knew it was what she wanted. Even if I wasn't so sure. Now, I'm not saying she was coming to me from the other side. I'm saying that we have the type of relationship and know each other so well, that we can anticipate how the other would respond. I am so incredibly grateful to have that type of connection with someone in this life and then call that person my sister.  All I can say about this experience is to make sure your loved ones know what you want in any circumstance, no matter how unlikely you think it may be. Don't just make sure they know what you want, have it documented. No one wants to be put in the position to make decisions for you about your life. You can make it a little easier on them by making your wants and needs known.

So my past week would explain why I am beginning to develop preeclampsia! It has been immensely stressful. But again, I have to give thanks for my amazing husband, family, and friends who really rallied around me and Jeni. Your thoughts, prayers, and gestures kept us going. I really have to brag up my husband here... He's such a great person and I'm humbled by his love. I can only hope that I can be deserving of that love and reciprocate it back to him. I wasn't even off the phone with Megan when she was bringing Jeni to the ER, when Kenny started turning everything off and getting his shoes on. There was no need to ask him to come with or explain at that moment all that was happening. He was already on board to go and sit for who knows how long until we had answers. The next morning, he was arranging everything so we could be at ANW with her. Even though he worked all weekend, he came straight there after work and even offered to stay the night with her. He has been there every darn step of the way without so much as being asked or prompted to. God broke the mold when He made Kenny.

To have a loving relationship with a sister is not simply to have a buddy or a confident — it is to have a soulmate for life.
-Victoria Secunda -

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Not much has changed the last 3 weeks with Baby B. He has been doing well on his non-stress tests and bio physicals. We had one day last week that he wasn't being cooperative, but I didn't have to go to the hospital to be monitored. I went back the next morning to redo the test and, although he was reluctant at first, he received a 10 out of 10. I think we just caught him during a nap and he was not going to be disturbed! He continues to practice breathe all the time. Seriously, they tell you that they only do it sometimes, but there has not been a single ultrasound in which he did not practice breathe the entire time they were doing it.

Baby B has been breach since about 32 weeks. I asked the nurse at my last appointment how long babies have to flip into the head down position and she said they are usually in the position they will stay in 32-34 weeks. There is a small chance he will flip, but it usually only happens when there is a lot of extra amniotic fluid. Thankfully, both baby's and mine measurements have been within normal range. Armed with that information and my fear of another emergency C-section, Kenny and I, along with our team of doctors, have decided to schedule our C-section. When the ultrasound tech told me that he was still breach, I actually looked at that as an answer to my prayers. I have been praying about whether to attempt a VBAC or just schedule a C-section. I am so scared that I would have to have an emergent one and with all my other concerns about how baby will be, I don't think I could handle the stress. So, Thank you God! I needed that decision off my plate. :)

Knowing when you are going to have your baby is both freeing and anxiety ridden. I am able to arrange Natalie's care. Kenny and I have been able to let our employers know the exact date our leave will start. My sister is able to know when she will have to arrange for someone to take her kids to school and pick them up so she can be at the hospital with me. Yet, on the other hand, I know exactly how little time I have to get my butt in gear to get everything ready! The difference between my first pregnancy and this one is astounding. I had the nursery done over a year before Natalie was born. Everything was ready to go, from the bottles being sterilized, all the clothes and bedding washed in free and sensitive laundry detergent, to my bag packed and car seat in the car by the time I hit 36 weeks. Here I am, almost 36 weeks and I don't even have the crib up! I don't know which outfit I will bring him home in.(Which is more because I don't know what will be appropriate for him to wear than not having options.) I don't have a single bottle sterilized or diapers and wipes ready to go. The more I think about all that needs to be done, the more I just want to roll in the fetal position and cry. I have grand plans every day to tackle things, but there are more days like today than not. Today, beside battling a cold I have had for over a week and a headache that made me nauseous, I have also been having really bad Braxton Hicks contractions all last night and today. Who ever says that BH contractions aren't painful deserves to be kicked in the gut with steel toe shoes every couple of minutes for a few hours. They are painful enough to wake me up from a dead sleep.

Enough complaining, though. With a date set and being pretty sure this is our last child, I have been really wanting to have maternity pictures taken. I have been thinking about booking them, but get momma guilt because I didn't do them with Natalie and feel like it would unfair to do it with this one. However, I'm sure there will be things that I will have done with Natalie that I won't do with Baby B. I don't know if I can fit one more thing into an already jam packed schedule. But just writing it down that I have wanted to have pictures has made me more decided on doing it.

Natalie will be starting pre-k this week. I can't believe my little girl will be going to school already. I honestly wouldn't have thought to start her this early, but she goes with my sister to her kid's school and LOVES it. It's a very small private school and Natalie will go and sit in with the pre-k class when she is bored with her aunty. She loves the teacher, Mrs. Petzel. Every time she sees a school bus, she wants to ride it, carries her cousins backpacks around, and "helps" them with their homework. She is so excited to start. I know she won't carry that enthusiasm long for school, so I'm glad we can start her when she wants to go so much.

The BIG appointment

What a crazy August this has been. Between appointments, birthdays, fairs, and work, life has been more than crazy! I wanted to update all of you in blog land about our big appointment on Monday, August 4th.

We had a full day scheduled at Abbott, Children's hospital, The Mother Baby Center, and the SB clinic. We started with a non stress test (nst) to measure the baby's movements and uterine contractions. Baby B decided to be an overachiever and had 5 "accelerations" (that is what they call it when baby moves and heart rate goes up by at least 10) within a few minutes. They look for 2 within 15 or so minutes. Than we had a growth ultrasound and biophysical profile (bpp). Baby B's head grew and he is now measuring in the 15th percentile and NO hydrocephalus! So his head is getting bigger in the best way possible. That is such a relief for me. It takes one thing off our plate of things to worry about. They told us that they were also looking for practicing breathing, but it would not be a big deal if he wasn't yet doing because I was not quite 32 weeks. But he was doing that the whole time we were looking at him. I think God knew we needed some good news and a sign that he was doing all right. They also look for muscle movement and amniotic fluid levels. Between the nst and bpp, he scored a 10 out of 10. 8 out of 10 is passing and anything less wins you an overnight stay at the hospital with more tests and monitoring. After this, we met with Dr. Ney. She is one of the 8 or so physicians that I will be seeing and may deliver my baby.

We then toured the birth center where I will be delivering. Kenny and I have been talking about whether or not I should have a repeat C-section or try a vbac, or vaginal birth after cesarean. With Natalie, I labored a long time, was fully dilated, and then had to have an emergency C-section because her umbilical cord was wrapped around her neck. I do not want to go through another unplanned C-section, so I will admit that I am scared to try a vbac. Not only because it sucks to go through all the nasty parts of labor, but I'm also scared I won't know when I start to go into labor. You think I would have figured it out since I've been through it before, but I am seriously afraid I wouldn't know. With Natalie, I didn't really know that my water had broke. It wasn't like the movies. There was no big "whoosh" of fluid. I had a small leak in my bag and wasn't going to get it checked out. Thank heaven I worked with a nurse who was also a friend, and listened to her insistence that I go in to be checked out! So we told the nurse that was showing us around that we weren't sure what we were going to do in terms of delivery. She showed a post partum room for C-sections, but didn't show us the vaginal birthing rooms or regular post partum rooms because they were all full.

Next, we met with the Mother Baby/Children's social worker. We took a tour of the NICU and had what would happen after I delivered explained to us. The social worker told us that the baby would be held up for me to see and then taken to another room where he would be checked over by the neonatalogist, respiratory therapist, the spina bifida specialist, a nurse, the anesthesiologist, and who knows who else. He would then be brought to the NICU just down the hall from where my room is. She showed us how we would get to the NICU "after the initial separation." I lost it at that phrase folks. The last thing you want to think about after giving birth to the baby that has been inside of you for 9 months, is that you will be separated from them. I want my baby put on my chest. I want to kiss him and welcome him to this world. I want to see his face, look into his eyes, count his fingers and toes. I want to explore this little human that has already made a place in my heart. Walking through the NICU was just as hard as hearing those words. Seeing all the babies in there that are so sick, so tiny, tubes coming out of every orifice is heart breaking. Seeing the ones without anybody in there was devastating. For all I know, the parent(s) could have been using the bathroom, taking a lunch break, attending to other kids at home... but just knowing that, for that instant, they are alone is such a scary place upset me greatly. 

After the NICU tour, we grabbed lunch and then were off to meet with the neurosurgeon, Dr. Najib. I try and not judge people before I meet them, but I had started imagining what he would be like based on his title alone- pediatric neurosurgeon. I thought he was going to be a no nonsense, tired looking, a little jaded, and pompous jerk.  He was anything but. He came to the waiting room to greet us, brought us back to his office, and talked to us like we were on the same level as him. He was upbeat and positive, saying that the baby looks better than he thought he would and this should all go on without a hitch. He wasn't arrogant about how good he was and this was only going to go so well because he's awesome. He was just very reassuring and kind. Both Kenny and I walked out of his office feeling 10 lbs lighter. 

Dr. Marker was the last doc of the day we were to meet with. He's an infectious disease doctor by trade, but is apparently one of the leading physicians on sb. I will be honest, when I left his office, I was crabby. I had questions that I wanted answered. I'm a realist. I know that some things might happen, some things might not happen. It will depend on my baby and what is found when he is born. But this doctor did not give us any information we didn't already know. He stressed the fact that this was going to be hard on our relationships. Not just with each other, but with family and friends also. He told us to talk. Hold hands. Kiss. Go on dates. Really?! We know that this is a major stresser on our relationship. We can already feel it wearing on us. What I want to know is if my baby's kidney pressure will be measure before he leaves the hospital so we will know whether or not he will have to come home being cathed? Are there leg exercises we will have to start right away to build up strength in his legs? Please don't be my marriage counselor when I need you to be an authoritative figure on my son's condition. 

All in all, I would say every one is extremely helpful, friendly, and empathetic. We are very blessed to live so close to an amazing facility like this and have access to this type of care. We are continuing to pray for a miracle and Baby B will come out with as little wrong as possible.

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Fetal MRI and Adoption

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.


This week we have a fetal MRI scheduled. This will give us a more in depth look at baby B's spine
to see where it splits. An ultrasound showed it was right at the bottom of L4, beginning of L5. Hopefully this will confirm that, or place it lower. (I'm crossing my fingers for lower!) We will also get to see the Chiari malformation in more detail.
A week from today is the BIG appointment. Our day will start at 0730 at Abbott Northwestern and the Perinatology Clinic of MN.  From there we will go to The Mother Baby Center and meet with the NICU staff. We will also get a tour as this is where baby B will be for the first couple of weeks of his life. After that, we will get to meet the neurosurgeon that will be doing the surgery to close the spine. We will meet with a doctor that specializes in sb, a social worker, and a nurse manager that will be our go to person. We will also get another look at baby B as they do a growth ultrasound. I believe our last appointment is scheduled at 1545. I will be wiped after that, but hopefully I will go to sleep having most of my questions answered.
After a lot of "why me" questions to God, I was lead to the Bible to look for comfort. My aunt had sent my a verse that I took great comfort in, and I was looking in up when I came across the story of Hannah and Samuel. It's about a faithful woman who prays to God for a child. She tells God that if he grants her that request, she will give her son to the Lord. God grants her this and she brings Samuel to the temple to serve God all the days of his life. This story brought to mind Abraham, Sarah, and their son. God granted them a child in their old age, but then asked Abraham to sacrifice the child. For Abraham's faithfulness, God spared the child. At this point, my mind went to Mary, mother of God. The holy spirit told her that she was chosen to carry a special child. Many times, over the course of Jesus's life, Mary had to let him go. First when he was a child and went to the temple, and last when he was crucified. My thoughts, besides I'm in the company of some great women, were feelings of honor and blessings. For whatever reason, GOD CHOSE US to be this special child's parents. I don't know why. I'm not as holy, honorable, or faithful as these woman of the Bible. But yet, I am being given a child whom I have prayed for, asked for, and I know that he will live his life for the glory of God. What parent doesn't want that?
There are still moments when I start crying. When I see a child in a wheelchair, my heart sinks. These are not things I want for my child. But I'm trying to focus on the positive. On the silver linings to every cloud.

Heartbreaking news

We've had a week off from the hustle and bustle of everyday life. We had a week to come to terms with the news that our baby boy (due the end of September) has Spina Bifida (sb). Most days are fine. Our baby is constantly on my mind, but I push the fact that he has a "defect" to the farthest corners of my consciousness, concentrating  more on the fact that he is going to help make our family complete. But today, after getting home from a week up north, it's the only thing on my mind. Waiting in the mail was a letter from the perinatologist's clinic I was seen at 11 days ago. The specialist I was sent to that told us that our baby has mylemenigecele. The most severe form of spina bifida. Apparently, they send follow up letters that detail everything that was talked about at our 3 and a half hour appointment. There, in black and white, it was: "Our ultrasound today confirmed the finding of spina bifida, and associated chiari malformation, and clubfeet." Ouch. I don't remember any other words ever said to me that cut me to my core quite like those did. 
Among the mail was a card sent from a well meaning friend. The card said that they were sorry for news and knew we had "to make the hardest decision" we will ever have to make. That no matter what we decided, it would be the right decision for us and our family. I'm not going to lie. I wanted to rip that card up into the tiniest pieces, crumple them together, and burn them in the hottest fire I could build. I don't know how this person meant what they wrote. What decision did they think we had to make? I can tell you how I took it. I can tell you how I took a couple of other people asking me if we were going to continue our pregnancy. NOT well. Why, in God's holy name, would this child I am carrying- MY CHILD- be any less worthy of life than any other child without a "defect"?! So my child has spina bifida. Would you abort your child if you found out they had an extra toe? I know the difference in diagnoses are huge, but my child is not any less loved or less perfect in my eyes. If you know me well enough to have the audacity to ask that question, then you would already know the answer. If you don't, you obviously shouldn't be asking it!
Waiting to hear what was found on the ultrasound was terrifying. A million different thoughts run through your head. I was actually relieved (a little) to hear that it was sb. At least it is compatible with life. At least I would get to hold, kiss, and bring home my little guy. That being said, I'm still very angry with all of this. I'm mourning the loss of the life I had imagined for my baby boy. I'm angry and sad that he will have to endure so much in life. He will have so many obstacles and I won't be able to fix everything. No parent wants this for their child and I am no different. I pray for the strength and acceptance I will need to help my little man live his life to the fullest. 
My thoughts, feelings, my life, really feel jumbled right now. Some days, I am accepting of the diagnoses. Other days, I can't believe it's happening to our family. I did everything "right". I took a prenatal vitamin before pregnancy. I didn't go in hot tubs, or saunas, or drink, or smoke. The hubby and I don't have a genetic history of birth defects. So why is this happening to us? God knows I am not a patient person, so I don't understand why he would give us a child that needs parents who are. I just don't understand.

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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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