Persistent Ache

I still have good days and bad days when it comes to my sweet Sarah. And I also have good days and bad days when it comes to the reality of what Tesh is going through. Some days I feel confident, and sane, .... others...... I feel that reliable pain, that is always there, the most. Sometimes I sit and just think on the events of that horrid day for me, wonderful for her. I think on how she felt when I first found her, my thoughts of denial that 911 needed to be called. And then I switch to a future imagination of me setting Tesh on her big pre-op bed, giving her her last kiss, letting the nurses and doctors take her away from me. How do you let go? How do you be content with "that last touch"? I know the odds of her passing during surgery are slim to none, but then, again, so was Sarah's situation.
With Sarah, I had no choice in the matter. She was gone, and there was nothing I could do to bring her back. No good-byes, no preparation. But with Tesh's situation, I'm deciding, as her mother, that the doctors are right in that surgery is needed, and I am willingly preparing her to do so, having the ability to say, "I'll see you later". Although it will be hard to see her recovery unfold, at least she'll be alive. The instant I say that, I feel guilty. I do not wish suffering on my daughter, but I selfishly want her here, to stay. Should I be confident that her place is here because she has a purpose on Earth when I have a God that gives and takes away as He sees fit? She does indeed have a purpose, but is it to stay? is the question. Will I lose another child, all so people can see His glory and mercy? Which He knows that I will. Or will she, herself, be able to speak on her own behalf, with her own testimony that will give glory to the Most High? And that, only He can tell if she will. Which am I to stand on? Both ways, He will receive glory. And that is what I must be content with. I say this as my heart breaks, and I am holding back tears, just to get through writing this blog post.
Sometimes I feel like Job, wailing in a "woe is me" attitude. But then, I see where I am growing, or struggling more clearly when I'm under such pressure. I look back at where I was, and think, 'I've come so far' and then I look at the road ahead and think, 'I have so far to go still'.

Tesh is gaining weight. Praise God. The fatter she gets, the more she looks like her older sister Sarah. Thank you God for that little sweet face, but she still has Papa's ornery smile. :) Tesh is still sickly though, and I intend to get it checked out more evasively. Next wed. we see the neurosurgeon team at Iowa City. I have so many questions. and of course, life goes on....... Isaiah is acting out due to all the chaos in the home, Eve is coming to a close with potty training (thank you God again :) and my husband and I, simultaneously, pretty much missed Valentine's Day, not giving it much thought, but are enjoying the chocolates that the kids received. We are not big V-day people anyway. I'm a deep well for quality time, no V-day is going to suffice that. I adore him so much. I can't even think about anything happening to him. Not going there.
Anyway. Taxes are in, bills are due, debts to pay........... life goes on. And that is probably one of the hardest things to hear and to accept when you're in such trials, but the world does not care, as we've learned through our bank. Now I must go and clean house, making ready for the nurse that is to show up at my door in a few hours.

Thank you to all of you who have said to me in the last few weeks, "Keep taking it day by day." It's amazing how quickly I forget such sound advice.

Matthew 6:34 "Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."

In My Place

As I was talking with Amber, a woman at church, I was gazing into her tired eyes, and imagining what it would be like to be in her place. She has a baby boy that is a little older than Tesh who is very sick. As she and her husband desperately try to find answers, one can only pray that he continues to grow and become healthy one day. My heart broke as we talked about the similarities and the differences between our trials at hand. We are both relying on the faithful prayers that are sent up from the church body and that God's mercy finds us.

I know that I may sound crazy saying this, cause I've lost a baby to SIDS, and now I'm facing another baby needing head surgery, BUT it still gets to me when someone's quality of life is under pressure. This mother had to watch her baby being hooked up to so many tubes and wires, for weeks and weeks. There were times where they 'could not' hold him, for if they moved him, it could make something go wrong. This little baby is six months old, they've been doing this for 6 months! I just couldn't imagine having to do that. Here I am whining about my situation, thinking it's so detrimental that I nurse, and hunt down all these details with her feeding, when she IS gaining weight, and she IS getting healthier, and she WILL more than likely survive this surgery with flying colors, and I have this mother in front of me that is praying that she can just stay out of the hospital, bring her baby home for good, not have to have this oxygen tube with him at all times cause he can't do well without, and for him not to vomit everything that he eats.

It really put me in my place. It made me thank God that I don't have to do what she's doing right now. I was holding Tesh in my arms while we were talking and she couldn't even bring him there. My situation could be so much worse. I honestly can say that I do not know their struggle. I can relate, and understand the heart wrenching pain of losing a baby, and will understand what it's like going through head surgery with your baby, but I do not know their initial pain and struggle that they are faced with everyday until he is well.

I'm not trying to belittle my struggle, like it's nothing. But what I'm trying to say is that it really could be worse. Sometimes I get so wrapped up in my own world of grief that it's a blessing to run into great people like Amber. It puts me in my place. It helps me to stand where I am and thrive cause of who I am. It helps me to rise up, and do my job well, all for the glory of God.

"Lift your head high, child of the Most High God."


*if you'd like to follow Amber's story, their blog is www.theflinnfiles.blogspot.com

Silver Lining Moment

"Isn't it nice to know.... that the lining is silver?" - Relient K

God is God, and I will never be able to say that He has turned His back on me. With my last post, I was desperately looking for answers. I talked with a few "cranio mommies" and they gave the advice that a team must be there for her head surgery. So I, one afternoon, called Dr. F's (CFS/PS) office and asked the nurse about sending our case to Iowa City cause we want to get a second opinion from a "team" of doctors. She said she would, so I thought, 'ok, that will make our options a little clearer.' 30 min. later, another nurse (from Dr. K's office) calls and tells me that Dr. K wants to send our case to Iowa City. I asked her about the timing of this decision (cause I had just talked to another nurse) and she said that it was written on a note that was given to her that morning. When I got off the phone, I cried, thanking God that He had given an answer to my prayer.
I appreciate Dr. Karas for his humility in realizing our case would be better carried out somewhere else. Our Ped. also called my house, in extreme agreement that she will be better taken care of at Iowa City, and she was raving about the doctors over there. Dr. Menezes is the neurosurgeon that will be meeting with us. We just learned of our appt. on Feb. 24th, @ 1:30pm in Iowa City.

On another praise,..... After 2 days on the alimentum formula (very expensive hypoallergenic formula) she gained 6 oz. !!! She seems a little stronger. There are little quirks to work out, but

I see that silver lining, that is shining over the clouds, showing us God's smile. It's there, we just have to wait for this storm to pass, using the water coming from it, to grow us so we can bloom. That is only a fraction of God's power.

Sick To My Stomach With Decisions

I think this is by far the most stress I've ever been under. I have been feeling very depressed, not about one specific thing, but a lot of things together. My body is doing something weird that's making me feel sick and tired often. "I have my suspicions, but we won't know for sure until we figure it out scientifically." (Jonah- Veggie Tales) But, of course, that's being put on the back burner due to Tesh's health status. I have 2 ornery kids that are acting out cause of all the chaos. My husband and I have made the decision to move because our income is just not cutting it for this house anymore. My poor Yeshua, he's trying so hard to keep things up and running.( and of course, having to deal with a "going crazy" wife)
I'm not nursing due to mucus coming out of every orphus when she intakes my (no lactose) breast milk. That still saddens me, greatly, but I've been learning to deal with it because she means more to me. I just wish we could figure out why. She's on just soy formula, but not sleeping well during the day. Very restless and agitated, but now there's very little to no mucus anywhere either. She has this lasting crud cough, that we can't figure out. She spits up undigested formula all the time, so now we are trying some acid reflux med. , which seems to be making things worse. (?)
We had our appt. with the neurosurgeon Dr. K last week. As he introduced himself, he also told us that our craniofacial specialist/plastic surgeon Dr. F (we had been meeting with Dr. F this whole time) is gone. He took a leave or something. So here we are standing in front of an actual neurosurgeon and he tells us his "team" doctor is gone. Dr. K was good about it though, he sat quietly as we digested all of this newness, so we could think of what to ask. I did like him, but I feel more comfortable with the "team" aspect about all of it. You see, Dr. K would be the one cutting bone and protecting the brain, whereas Dr. F was going to be the one shaping the skull, making it correct. Dr. K assured us that he was qualified to do this alone, but that, ultimately, it's our decision. He said we could go to Mayo (in MN) or Iowa City to find "the teams" but they are not here in town. I've got other "cranio moms" telling me that they would NOT let just an NS work on their child alone. Also, there is another suture that is fused, called a "metopic" suture (touch between your eyes and run your finger up your forehead), that none of the doctors breathed a word about, so now I'm confused as to what exactly is going on. And the "cranio moms" said that if that metopic suture IS fused and needs work that we NEED a plastic surgeon on it also. What do we do?? How do you, as a parent, pick which person is going to cut open your baby's head?? I feel so lost in all this.
Mean while, she's back on the charts, she's at 3rd percentile now, and everyone is happy about that, but I can't help but noticing that something else is going on. OF COURSE, these are two separate issues going on with our little Tesh.

You think I'm being tested? Maybe to see how much Kailan can cry? I found myself last night, pleading with Jesus to just hold me. I know that with the ministry that we aspire to be in, that there is a lot of pressure, my guess is that we need to learn to live under pressure? That's all I got though. I'll tell you one thing for sure though, my faith remains ultimately immovable. I will never stop believing that there is a God. I may feel at times that God has turned His back on us, but I'm reminded very quickly that He is merciful and compassionate. He'll get us through this, as He always does. A phrase Josh and I have adopted is, "Everything is going to be ok, we just don't know what ok looks like."













(top left) Profile shot: you can see how deformed her head has gotten from her brain pushing her skull back so it can keep growing. The cracks you see are sutures. Those are what they should be. (top right) This face-down shot shows you the fusing of her sagittal suture. There should be a suture going up and down. You can see a ridge where it's supposed to be, you can also feel it on her head. (bottom) Face shot: there should be a suture going up her forehead called the metopic suture. You can also see and feel a ridge there too.

It's crazy the technology that we have today. Thank God for it, this "gift" of ours has had too many close shaves away from death. That is a very unnerving thought process, but a very real one to me everyday.

If you run into me, give me a hug. Your hugs are God's hugs and they can be very healing...

.... as I'm typing this, I'm realizing that my 2 yr. old Eve, has her arms tightly around my shoulders. God is in everything that is love, even in a 2 yr. old that doesn't want to get off your lap. :)

Exodus 20:20 "And Moses said to the people, "Do not be afraid; for God has come in order to test you, and in order that the fear of Him may remain with you, so that you may not sin."
Deut. 8:2 "And you shall remember all the way which the Lord your God has led you in the wilderness these forty years, that He might humble you, testing you, to know what was in your heart, whether you would keep His commandments or not."
8:16 "In the wilderness He fed you manna which your fathers did not know, that He might humble you and that He might test you, to do good for you in the end. "
Job 7:17-18 " What is man that Thou dost magnify him, and that Thou art concerned about him, that Thou dost examine him every morning, and try him every moment?"
Psalms 139:23-24 "Search me, O God, and know my heart; Try me and know my anxious thoughts; and see if there be any hurtful way in me, and lead me in the everlasting way."

Failure To Thrive

Last Wednesday, Teshura officially fell off the growth chart. She was 1% for a little bit there, and then finally took the dangerous dive. She is almost 3 months, and weighed at 8 lbs. 4 oz. ... the average size of a newborn. I was nervous, but thought, finally, we'll get some answers.
It had taken me 3 weeks to get her to exclusively nurse. I thought we were doing well. Almost all her signs of healthy baby were there. She was alert when awake. She slept a lot. Her urine was a nice hydrated clear color. Only it was her stools that worried me. I saw her weight, but thought, she must be a slow weight gain baby. I was ok with that as long as she seemed healthy. The Saturday before sed Wed. we were with family for Christmas. There was a little cousin of mine that was 2 days younger than my Tesh. He was so cute and plump. I asked how much he weighed. "11 lbs..." I thought, I remember those numbers at this age. I looked at him, then looked at Tesh, and realized for the first time, how frail she really was. It made me want to cry. I thought there must be something wrong with her.
Well, lo and behold, just days later, she fell off the charts. We had a CT scan scheduled that same day, so I had her seen by the Ped. to make sure she was ok, which she wasn't, she had the croup. But I thought we should at least try to get her to sleep during the scan, that was an option. The Ped. said, "I'm going to have you guys admit her and then you can get the scan done, but she needs to be admitted, cause she fell off my charts, and we need to get to the bottom of this." My heart sank. ' Admitted? Into the hospital? CRAP!!'
well.........here we go again. Josh and Kailan going to the hospital with ANOTHER infant. I'm telling you, this is definitely making me think twice about having another one. I did not want to do this, but at the same time, I wanted answers also. And this was the way to do it.
I was on day 3 of going dairy free in my diet cause her stools were always this mucusy consistency, so I thought I'd try it. It was so stressful in the hospital, it stressed Tesh out, it stressed me out. They did not allow me to nurse, they had me pumping and feeding her bottles with fortified calorie mix into my milk. She drank from the bottle, no problem. I was so numb to what was going on that it took me a day or two to really miss nursing her. We got her on a soy based formula mixture cause she reacted very badly to the milkbased. My milk supply was dwindling due to my stress. And that, of course, stressed me out even more. I won't go into detail but I started cracking, and became very sore.
Her CT scan was successfull. We got her to sleep through it. That was a chore, but worth it. The next day it was confirmed. "Partial closing of the sagittal sutures. Sagittal Synostosis."
She was able to gain an ounce a day doing all this, so they let us go home on strict feeding instructions. I was overwhelmed, coming home to my sick 2 year old that needed her mommy and my 5 year old that had so much to tell me and realizing the task of taking care of Tesh through it all. There is a nurse that will come to my house everyday to weigh her.
Today, I woke with mastitis, and during my kid's morning bath, I found lice in their hair! eeeee so gross!! I cried and cried, feeling even more overwhelmed and weak. My father in law, Jeff, came over and took care of the kid's hair, putting the medicine on it and starting the endless combing, while I talked with the nurse, that was visiting for the first time for Tesh.
Today was a bad day for me, but a great one for Tesh. She is a grand total of 9 lbs. 1 oz. geeesh! 10 oz in 2 days. That's ridiculous. But, whatever..... for now. I've tried nursing her, and she won't have me. That has broken my heart. I cried to my mom about it, and she said something that had just struck me. She said, " well, Kailan, just know that you got 3 months out of her." She was trying to comfort me, when it actually put me into shock. 3 months! My nursing was cut off at 3 months when my daughter died, and now my nursing is being cut off with another at 3 months. How cruel is that?! I went a little crazy after that, not towards my mother, but towards myself. I was realizing that I'm not just fighting a physical battle, I'm fighting a spiritual one within me. I was not giving up control. I was not embracing the peace that He was trying to give me. I was being selfish. My stubborness always gets the better of me. It was time to end this crazy cycle of crying over my "spilled milk" (pun intended)
I got up and paced my living room floor, and said out loud, "Satan! You have no power over me. In the name of Jesus, get out away from my house. Because the blood of Jesus, you have no power over me. You have lost. I am a child of the Most High God, and once He has me in His grasp, He will never let me go. You will never have me. I am a child of the Most High God." I had tears streaming down my face through all of it, but by the end I was calm and the tears had stopped, and I was able to think clearly for a moment.

I believe that when we are in heat like this, that it is God allowing things to happen, and satan thinking that he could use it, for both to see, "What will Kailan do?" "How far will she fall? and How high will she rise out of it?"

Now, I'd like to say that I didn't fall for the rest of the day. But what I can say is that I didn't fall harder than what I had before, and I came out of it that much faster. Thanks to a dear cousin of mine.

Fellowship is beautiful. I can just feel these hands on my arms holding them up, so I can clinch onto the staff that must rise in order for us to win this battle. Thank you for your prayers.

Teshura? Sagittal Synostosis?

Teshura, Teshura, what will we do with you? Let me go back a little with this to give you a better picture of the grey hairs I may be getting very soon. (not that I don't already have some)

This pregnancy was very hard on me. I spent the first 4 months puking my guts up, and then had a little break of enjoying my pregnancy. At 30 weeks (7 1/2 months) I was contracting regularly and didn't realize it. I knew the contractions were there, but didn't realize they were 4-5 min. apart. :) I think my midwives lost faith in my judgment after that, especially since this had been my 4th pregnancy and I should've known better. ? They found an infection that they were able to treat and also put me on bedrest for 2 weeks. (especially since I now had a history of pre-term labor with my previous daughter) After 2 weeks, my contractions went back to normal braxton-hicks and I felt fine, BUT my fetalfibronectin test came back positive (meaning there is a hormone present that makes me at risk for going into labor within 2 weeks) so it was back to bedrest. 2 weeks after that I failed another test for that.... more bedrest. I finally got off bedrest at 36 weeks only to find out that this baby is breech. They said I had some time for the baby to turn, but it did concern them. I tried chiropractic care. I was coming upon my ninth month, and they wanted me to "lay low" as to not go into labor, giving this baby a chance to flip. I started dilating a little but nothing out of the ordinary. I was 37 weeks when my contractions started to feel real. I waited at home doing some "labor" excersizes and my contractions got closer and harsher. We went to the hospital and I walked up and down those hallways wanting this to be over. Head was down (maybe due to the chiro.) finally and things seemed good. I took a hot bath, and things started to calm down. I was so disappointed. My labor came at a stand still due to the fact that this baby that was head down, was now transverse. (sideways) They sent me home later, I was crying, feeling very uneasy about everything, not trusting this baby at all. I went in the clinic with more contractions a few days later, all to be sent home again, because baby was not fully head down.
Third times a charm, I went into labor, progressed beautifully, and with many anticipation the head was down, but still not totally engaged. My water was broken when I was dilated to 6 (you need to get to 10) and there was so much water, they said, "No wonder your contractions were everywhere!" They lost her head. The baby had gone up somewhere where they couldn't even tell what was what. My heart dropped as I labored in pain, not knowing what was about to happen. I knew that I may have to have my first c-section, and was terrified. The decision was made, though, that c-section was the safest option at this point.

My baby girl Teshura Lyn was born October 18th, 2009. My first sight of her, I was nervous. My husband was with her, and my midwife took his place beside me, holding my hand. I looked at my baby girl for the first time, blinking as to see better through my tears, and noticed this enlarged forehead. I said to my midwife, "Kim! Her head!" She comforted me saying that it was a normal "breech" head, and that it would go to normal as she grows. 'ok', I guess I could deal with that.
She is so precious though, she seemed to nurse ok, but just ok. There were major sleepy issues, greater than what I dealt with, with my sleepy Isaiah. It took 3 weeks for her to nurse properly, and still she's a little lazy, but she gets the job done.
Her head was still not getting back to normal, but of course, she wasn't growing very much either. So she has slow weight gain issues, along side of her weird shaped head. Her forehead still kind of sticks out a little, and there is this ridge that runs up it. The back of her head has a narrow bump shape to it, making her head this elongated shape. My pediatrician sent us to a cranial specialist. The specialist gave us the name ' sagittal synostosis' He wanted us to get familiar with it, cause he "highly suspects" that this indeed is her diagnosis. This diagnosis means that when babies are born, they normally have all these sections of skull that are not fused together yet, letting the brain grow properly and then at 2 years old, they close. These normal "cracks" in the skull are called sutures. The diagnosis is stating that these certain, "sagittal sutures" are prematurely fused, causing her head to grow this abnormal shape, which can lead to intracranial pressure. Scary!! Good news is it's fixable! Praise God!! Bad news, surgery will be needed. Yes, to reconstruct her head. very very scary. I asked him if this was why she never settled head down. He said that it was a great possibility but that I would never have a definite answer.

Our CT scan is tomorrow which will confirm this diagnosis. I'm very stressed about all this at this moment. My worst fear is losing another daughter. I think Sarah has completely amplified my fear with all this. I have shed many tears with all this already, and I know that once again God is using us. Sometimes I wish that He didn't trust us so much, but then the moment that that comes out of my mouth, I realize that I desire to be trusted by Him. Let's just hope I can make Him proud. I don't know how we are going to get through, but I'll never forget the why. I am a child of the Most High God. He is my peace. He is my strength. He is the King that I serve, and that's why I will do this with the certainty that I will come out of it alive.

I'm using this blog to update everyone about this and to someday be a support to all who endeavor this same journey. Feel free to ask any questions. Thank you to all the "cranio" moms out there on the craniokids.org website with so much support.

This Marks 3 Years

Just when I feel like it's starting to not hurt as much, my heart sends this suffocating pain to my body, reminding me of what was torn from me. A part of me feels very selfish when I get this way, only because she was never mine to begin with, she was on loan, and her Creator saw fit to take her back. But, of course, my human heart cannot just accept that. I must ache. But I think He wants us to ache, I think if we become numb to it, then the testimony is dying.

Oh, how I miss her. If I close my eyes, I can see her beautiful fat cheeked face smiling up at me. I can feel her soft "blueberry" nose under my finger as I applied medicine to it due to her humangioma. I can smell the lotion that I put on whole body after every bath. I can hear her little squeaks that she would do when you walked by her. There are some things that I will never forget, but my vivid memory of her is starting to fade a little and that breaks my heart even more. Isaiah talks about her all the time, drawing pictures of our "whole" family. Eve doesn't grasp the concept of Sarah........ the concept of Sarah...... that hurts too.
We have another little sister too, now. Teshura Lyn, she'll be 2 months old tomorrow. She's so sweet. She loves her mommy. :) She has some features that look like Sarah and all the others too. I can't wait for the day when we can all sit around the table, talking about Sarah extensively. I dream of the day when my girls will be older and I can share how wonderful their older sister is.

:) I tried to explain how Sarah is Eve and Tesh's older sister, and after about 10 minutes I gave up. He did not understand that Sarah is ALSO their sister, but not just that, that she's their older sister. Again,... concept.

Everything is bittersweet, to every hurt their is a blessing somewhere.
So I embrace my aching, knowing that with pain, comes remembering, and my testimony relies on me remembering.