Dear Jesus thank for this easy relaxed baby! I think if she had colic or just was super fussy I might be completely overwhelmed especially with everything else going on. She truly is a joy.
Thursday, July 28, 2011
Dear Jesus thank for this easy relaxed baby! I think if she had colic or just was super fussy I might be completely overwhelmed especially with everything else going on. She truly is a joy.
Tuesday, July 26, 2011
Saturday, July 23, 2011
I ran away from home today. After 4 weeks of being needed by someone (be that child, husband or mutt) almost every minute of my waking hours it finally got to me today and I ran away. Okay fine…I didn’t exactly run- I more fed the child and left her with the husband and the mutt so I could get a much needed minute to myself at the Roasterie. For the first time I understand Jesus trying to escape from the crowds. Can you imagine being continually needed by that many people?! I mean I know he was fully God, but he was also fully man and GOSH he must have been tired! Cause I have only been doing this “consistently being needed thing” for 4 weeks and he did it for years!
So speaking of Jesus/God this is going to be a post about God and what I feel like he is doing in my life. So if you have a huge aversion to this topic just be warned. My blog…my topics. =)
I have realized over that last few months that I am extremely emotionally guarded. I’m going to try to work on this because it isn’t a good thing.
I know I have mentioned before that I have always felt loved by God. That I have always felt him in my life and know that he has loved me and wanted me to be in a relationship with him. Over the last few years and months really I feel like God has really asked me for more than just a relationship. Due to situations over the last few years, trials we have endured I feel like Faith is something I have been working on a lot. It’s not always fun, but I grow. I become stronger, and my faith becomes greater. Because God has never let me down.
I grew up in a pretty conservative church. A church that didn’t focus a whole lot on the Holy Spirit and the gifts of the Holy Spirit. Since I moved back to KC in 2006 I have attended a church that not only believes in the gifts of the Holy Spirit but also encourages us to practice them and even though they are often awkward and often feel uncomfortable to believe in them and work through some of that stuff. So I’ve been doing that.
I believe in healing. I believe God CAN heal people if he chooses. Time and time again in the bible he does! And it is often due to the persons “great faith”.
Since we found out about Emmaus and the rhabdomyomas and probable TSC I have asked God time and time again to heal our baby girl. To protect her from this disease. I have examined my faith in God’s ability to heal. I have worked on increasing that faith and trusting God instead of worrying. Believing in God and his ability to heal over the science and real life that I see everyday working at CMH. Because I have no doubt that God is bigger than “real life”. Like I said I believe God CAN heal her.
However. The other day when I was spending some time reading my bible and praying for our baby girl I felt like God ever so gently spoke to me. Weird I know. It wasn’t audible. But I have no doubt that what I “heard” came from God and was not of my own invention.
He said “Laurisa, I really appreciate that you believe that I CAN heal Emmaus. But I need you to believe that I WILL heal her”. Uhhh WOAH?!?
Now let me clarify a bit. I did not hear God say “Laurisa, I am going to heal your daughter” or “I WILL heal her” but I heard “I need you to believe that I will heal her” Although those things might sound the same they aren’t.
For a while I contemplated if there even is a difference between “CAN HEAL” and “WILL HEAL”. I spoke to a couple friends about it and got varying reactions or no reaction or odd looks like “I think you should get more sleep friend”. After much contemplation and discussion came to the conclusion that there is a HUGE difference.
Believing that God CAN heal is safe for me. It means I believe God has the capability to heal but it doesn’t invest me emotionally. There is no factor of disappointment if he doesn’t. There is no commitment from me. (If in my wedding vows with Dan I said “I can stay faithful to you, I can stay committed…it would have had a lot less of an impact than me saying I WILL stay faithful. I WILL stay committed. Because it just means I am capable, but not that I will do the thing.)
Believing that God WILL heal isn’t safe. It makes me take an emotional risk. To step out in faith in a way that I am VERY uncomfortable doing. It makes me vulnerable. It has the chance of disappointment. It has the potential to make me look foolish to those that don’t understand what I am talking about, that don’t believe in the same God that I do, or that do believe in God, but don’t believe the miracles of the bible “exist” on earth today.
However, I am not afraid of looking foolish. I am not afraid of completely emotionally exposing myself here (okay…maybe I am kinda sorta uncomfortable with this but I am doing it anyway). Because the truth is that I would rather step out in the faith that I feel like God has directly asked me to; I would rather stand firmly (no matter how scary) in believing God WILL heal my daughter than be “safe” in the place of believing he CAN heal her”. I would rather have people think I am crazy, foolish, or wrong, than pass up this chance to follow my Jesus to where he is leading me. To increase my faith, my relationship, and my trust in the creator of the universe.
So I guess what I am saying is, I believe God will heal her. I don’t know what that looks like. But I do know that I have never been disappointed in following Jesus and doing exactly what he asks of me. So I am resting in that today. In the history of our relationship and his failure to ever disappoint me.
Wednesday, July 20, 2011
Monday, July 18, 2011
My baby girl has a pretty impressive rat tail/shullet (she-mullet) at 3 weeks old. And I freaking love it! Hil to the arious! (She's also gotten some pretty impressive baby acne this week-which is kinda sad!)
Friday, July 15, 2011
Monday, July 11, 2011
*My gma recovered the chair for us and gave us the mirror which we repainted. I did the artwork.
Here is a project we did this weekend. Here is the before and after.
Sunday, July 10, 2011
Monday, July 4, 2011
Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:16
God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, Ps. 46:1-2
Emmaus is a name I have loved for a couple years now. We studied the passage in church one night and I just thought it was pretty. I used to refer to our unborn/unconceived daughter as Emmaus. Dan hated the name at first but then when we actually found out we were having a girl he wanted to name her Emmaus. I threw out other names and we seriously considered one other, but it was always Emmaus.
As time went on the passage began to mean more to us than just being a pretty name. In the story Jesus is walking with a group of believers after the resurrection, but they cannot recognize it is him. They feel a burning within their hearts but do not realize it is him until much later. We find this significant to our lives in several ways. First Dan and I have both gone through times where we didn’t necessarily know Jesus was walking with us, but when we look back it is obvious he was all over the situation. Secondly we pray that our daughter would feel that same burning in her heart and learn to know Jesus in her walk through life.
On May 18th I woke up when Dan was leaving for the day. I lay in bed for a while and became concerned because I wasn’t feeling her move. She was most active in the mornings. I called my midwife and went in to see her. She did an ultrasound and agreed that the baby wasn’t moving much. She was making fine movements (fingers, toes, ect) but no major movements so she sent me on to see the perinatologist group she refers patient’s to- if you have a midwife and have complications you go to a specialist to deliver generally. Anyway, later that afternoon I got in to see Dr. Wickstrom for a biophysical profile. Since Dan was at work my friend Emily went with me. I was thinking, “worse case scenario baby comes today”. I was almost 34weeks pregnant so I knew she would be little and spend time in the NICU but that she would be okay. Well the ultrasound lady scanned me for a long time. Baby passed her biophysical profile no problem. I felt extremely relieved. The ultrasound lady said Dr. Wickstrom would come in and scan me as well and she left and was gone for a while. When Dr. Wickstrom came in the room the mood immediately shifted. She sat down and said “The biophysical profile looks great, but we saw something wrong in your daughters heart” She preceded to tell me that Emmaus had multiple tumors growing in the ventricles of her heart but that they are benign. They are called cardiac rhabdomyomas. I think all I got out was “okay”. She let me know that she had spoken to Cathy Gordon my midwife and that because of the tumors I would need to transfer my care to the obstetrix medical group (the perinatology group that she worked with through st. luke’s) because I would not be a candidate to deliver at a birth center and we would have to very closely monitor the tumor growth over the next few weeks.
I kept my calm until I got into the car-I felt bad that my friend was with me and not Dan- I just never thought we would get news like this. When I was alone and on my way home I called Dan and through broken cries told him what she said. He was almost home too and I waited to start researching these tumors until he got home. Well the research made things worse. It turns out that Benign Rhabdomyomas are very highly associated with a disease called Tuberous Sclerosis Syndrome (TSC). This disease is found in 80% of the cases of fetal rhabdomyomas. TSC is a disease in which the tumor suppressor gene doesn’t work. It is generally is genetic- (Dan or I are probably a carrier for the disease) although it does randomly occur sometimes. The next few weeks were filled with Drs appointments for me (weekly biophysical profiles, non-stress tests, and office visits) and then a consult with Children’s Mercy Cardiology to do a fetal echo for her. An amniocentesis could be done to check for TSC, however it took 12weeks to get the results. Since I was already 34weeks pregnant it was pointless to test this way. TSC has several skin markings associated with it and you only need two major criteria to diagnosis the disease positively, then blood tests are available as well. The plan became to have her at St.Luke’s on the plaza and transfer her immediately after birth to CMH if necessary. After we met with the CMH cardiologist he was pretty certain no NICU stay would be necessary because the tumors were not impeding blood flow. Huge relief since if blood flow were being blocked she would need emergency surgery. As time went on we began to feel more comfortable with the diagnosis and possible TSC. We have great support from family and friends and knew that although this is not what we wanted for our daughter’s life or for ours- this is the specific baby that God trusted us with. We started praying for God to bless us with a baby before we conceived her. We prayed specifically for the child that God would give us and that child was her. We prayed for her while she was in utero, for the person she would become and the plans God would have for her. So even through this time of waiting for her to get here, waiting to see what would happen we knew without a doubt that “Jesus was with us” and that he would not give us more than we can handle. And most importantly that Emmaus was the child he gave to us to parent…with our without TSC.
When she was born she looked perfect. Perfect color, perfect circulation, they did an echo that looked the same as in utero. Her EKG was funky, but that was expected due to the tumors in her ventricles, but her heart rhythm was fine. However, she did have one of the skin lesions on her arm that is typical of TSC. As soon as I saw it I new she had TSC..Dan did too. Everyone else tried to remain very optimistic, however, we knew. Our pediatrician confirmed at our appointment giving us a verbal diagnosis. (we will do blood work this week)
TSC can vary extremely widely. Really Dan or I could HAVE the disease and never have any idea because it is such a mild form. It varies from having a few skin markings/ the rhabdomyomas and functioning extremely well to having lots of tumor growth especially in the brain and kidneys. Often resulting in multiple surgeries, seizures, autism, kidney problems, ect.
We obviously have a range of emotions about the diagnosis. Mainly we are just trying to trust that God will equip us with the strength necessary to face whatever comes our way. We are being followed closely by CMH cardiology to watch for growth of the rhabdomyomas (They generally shrink over time and become a non-issue). We also will be followed by CMH genetics- they have a regimented plan on how to follow these kids and a timeline of tests, ect. However, currently there is a 6-9month waiting period to get in to see them. (Any CMH people have any strings to pull with genetics clinic??)
I think as a nurse at mercy working with kids with seizure disorders/syndromes that cause them, I often let myself go to the worse case scenario. It is something I have to be very careful of. Dan will say something like “Just think so soon she will be calling you mommy” and I think “I hope she can call me mommy ”. I have had to work very hard not to live in a place of fear, but to live in a place of joy and hope. To be thankful for the tremendous blessing we have and not think “why us?”
I am so thankful that we found out about all of this while was still pregnant. It gave me times to work on the fear issue. We are not supposed to live in fear. It is still something I have to face everyday, and decide to walk away from instead of wallow in. I share all of this on my blog not because we want pity, but because it is the truth. It is our reality. It is our story. And because it’s kind of therapeutic.
Sunday, July 3, 2011
And here is her Birth Story
I worked Friday night overnight and gotten off around 730am. I went home and got to bed around 8am and then only got to sleep until about noon. We were hosting a surprise 30th birthday party for my sister-in-law Sarah. (yah-I know that I am somewhat crazy to suggest we host a party when I am 39weeks preggo) All day I feel pretty crappy. No contractions, just really felt bad. My pelvis hurt, my legs hurt and I just felt bad. Everyone left around 10pm and Dan and I went on a walk, which ended up being very short because I was not feeling well. When we got home I went to bed immediately, Dan came to bed around 1230am. Around 130am I woke up having some pretty good contractions. I tried to wake up Dan but he was out and I was hurting. I texted a friend to let her know I was in early labor and to ask her to pray. She was at work and called me immediately, which woke Dan up. I got into the bath and Dan started timing contractions. I stayed in the bath for a while, then got out and got into bed. I had Dan call the Dr when I got in bed to let them know I was in labor. Dr. Wickstrom was the Dr on call and I was thrilled! She was the doctor I saw the first time when I transferred to the perinatology practice. She is whom my midwife loves and the reason she refers to this practice. However, when I entered the practice, they told me straight away that she does very little at the St. Luke’s downtown office and that she probably wouldn’t deliver me. So I really was happy she was on call. I definitely wasn’t as comfortable in bed, so I ended up in the bathtub again. At this point my contractions were anywhere from 2-6 minutes apart but were definitely hard contractions. Around 330am Dan called my friend Emily, who was going to be at the birth, and had her come to the house. She arrived shortly after by about 4am. I was having pretty consistent contractions about every 2 minutes apart and I was starting to feel nervous and trying to decide if it was time to head to the hospital. I started feeling pretty nauseous around that time so decided it was time to go. I knew that throwing up could rapidly progress your labor and I didn’t want to have that baby at home. I started throwing up before we left the house and continued to get sick periodically throughout the rest of the process. (Glamorous I know….) We got to the hospital around 5am and began the check in process. My nurse was pretty rude. (Word to the wise- before you have a baby PREREGISTER! I tried to do that but apparently the ONE WOMAN who could register people was out of town…she conveniently called me Monday morning to do the preregistration with me.) They checked me in a triage room and said I was dilated to a 4, 90% effaced and in active labor. The Doctor came right in because the initial monitor read showed baby’s heart rate to be in the 70’s. Well turns out that was my heart rate and hers was fine around 130. They just got nervous for a minute. They moved me to the L/D room and then started the paperwork with me. It is extremely challenging to do a full set of admission paperwork all between contractions that are 2 minutes apart and stay focused to handle the contractions. It did kill time though because they wanted me to be continuously monitored for 45 minutes which is about how long it took. After the continuous monitoring, I got in the shower and labored in there for 2 hours. I kept thinking “I know this is going to get worse so this can’t be pain at a 10/10 yet, so I need to stay calm and breath through this contraction.” While I was in the shower they would come monitor me via Doppler once an hour but I didn’t have to be hooked up to the monitor. (The night nurse was not happy about this inconvenience…too bad. More work for her, but more comfort for me. ) Around 7am I got out of the shower and had them check me because I was feeling pressure. They checked me and I was at an 8. Around this time my friend Jess and my mom came in. (I realized after the fact that I never looked either of them in the eye until they were leaving and I was about to start pushing- I was just so focused and I knew if I gave any attention to my surroundings I would loose that focus). I labored for two more hours and then was finally complete about 9am and got to start pushing. My day nurse was AWESOME. She monitored me with the Doppler or the belt monitor, but never made me wear the belt. I pushed in 5 or 6 different positions that the nurse or Dr would suggest. They were very flexible and supportive of what I wanted to do. At one point when I first started pushing I asked for a coke. (My midwife told me that it can help boost energy while pushing due to the sugar and caffeine-and this momma was TIRED!) The nurse did her duty and offered me a popsicle instead but did not argue when I explained my reasoning. At one point, when I was squatting on the floor to push, the nurse was actually sitting on the floor next to me so she could better monitor the baby. That is amazing nursing care! And that is not a compliment that nurses hand out very often. Anyway, I pushed for a whopping 2hours and 45minutes before baby girl decided to enter the world. The pushing process was a hard one. It was wonderful at first because when you are pushing you are not really feeling the pain of your contraction anymore. However, the end of the pushing process is definitely painful, and when it takes a while it is hard to be patient through the pain. Baby girl was born at 1156am. She immediately was taken to be examined by a neonatologist in the room but received apgars of 9 and 9, was pink, and was crying loudly with great circulation! She did have to be suctioned a bit due to having a bit of fluid in her lungs but that didn’t affect her at all. We then got an hour without anyone even coming in to access her or anything! It was a very sweet hour for our new family of three to get acquainted and count our blessings. Dan was impressive through the whole process. He was calm and encouraging and seeing the birth of his baby was definitely a cool thing for him. He asked me at one point what I was thinking for the 6hours I didn’t speak to a single person. (I think that is a bit of an exaggeration) I guess I was extremely quite and introspective during the whole process. It was a wonderful process and I would definitely do it again the same way. One of the coolest parts was when the doctor was leaving, she asked what we were naming our baby girl. I replied Emmaus Anne. She smiled and said “And they met Jesus on the road to Emmaus” I smiled and said yes, they did meet him there and that is our prayer for her. That she would meet Jesus in her walk through life. Yep. God was all over that delivery. We are so blessed to have this exact baby girl in our lives. She is the child that God chose for use and that we prayed specifically for before her conception.