Unveiling the Present

The long awaited appt. with this doctor finally came. I had Tesh on my lap, and he walked through the door, this older man from India, sat in front of me and one of the first things out of his mouth was, " What was her birth weight? " I answered, " 6lbs. 5oz." He then asked, " What is her weight now?" I answered, " 10lbs. 13oz." Shaking his head, he said with a serious tone, "She's gained 4 lbs. in 4 months. .... That is not good."
He went on to explain to me the diagnosis that we already knew about her head, and declared that she, indeed, needed surgery. BUT he can not touch her right now. He said, "I can't go into a baby like this. We call these babies "failure to thrive"." My face felt a little numb as I was trying to swallow that word, once again. That took me back, but he continued, "She needs surgery, but I can't and won't do it until she is well. Do you know WHY she is not gaining weight?"
My answers seemed so weak, but I gave him all that I knew. I found myself stumbling over my answers realizing what weak statements they were, " well....... they think that there might be a milk protein allergy.... she's on acid reflux med...." As I'm saying all these things, he's shaking his head, seemingly becoming more disappointed. He looked upset. He interrupted my ramblings about her health with, " WHO is THEY?" I answered him, " My Ped. and the GI specialist." Shakes his head again. As a father instructs his child, he said very seriously, " They need to get to the bottom of this. They need to figure out what is going on, why she won't gain adequate weight."
I went on saying that I've been feeling like they haven't been listening to me, and that I have theories, but they seem reluctant to try them out or test for them. He's shaking his head again, and then stands, " Do you know who I am? I am a neurologist. I am a professor of neurology. I've done....." and he went on about how many surgeries he's done, and how many of that were infants. and then concluded it with, " I am the one they all go to, I am it. THEY will listen to ME. I'm going to talk with these doctors, and make them get to the bottom of this. She needs surgery, but I can't do it with her in this state. They need to fix it, and if they can't, she will come here to get it done, and see the doctors here. " All I could say to that....... "ok"
I did ask him a couple questions about the actual surgery, but I almost felt I was getting off topic. It was a short-lived appt. and not what I was expecting.
I was expecting some productive consult about what surgery and when, and preparation, But what I got was a different form of productivity, which took me a little bit to see it that way.

He was the only Doctor that was standing up for little Tesh. He took the veil over my eyes, that the docs. back home put on me with words like" she's fine" " keep doing what you are doing", he lifted it up from my face.
This forced me to look at my daughter once more, and then I thought, " What am I doing??" He fueled the fire that, in my heart, was fading like embers. I was fighting back tears.

He felt around at Tesh's head, reassuring me of some flex with the metopic (forehead) suture, which made me feel better about the future for that issue. She started pouting at him, as he felt around explaining what was wrong about her head, and why. But then he instantly, turned into "Papa mode" and said to her with the sweetest voice, " Oh no, sweetie, I'm not talking about you. You are beautiful! It's ok, I'm going to fix this head of yours." It put a smile to my face, but I don't think Tesh was buying it. :)

He left shortly after that, with instructions to do whatever we have to do to get to the bottom of this, and that he'll see us back in 6 weeks, and see how she's doing then. April 9 is when we return for "take 2" and hopefully this mama can move this mountain with God's strength that He's so willing to bestow me with.

When we left that hospital, walking into the parking lot, packing everything back into the van, tears started slowly coming down from my eyes. I looked at sleeping little Tesh in her carseat, and my heart broke. We left there feeling very uneasy, not necessarily about the surgery, which there was, to some degree, disappointment. But we were trying to digest the seriousness of her present state, and that it's keeping her from a surgery that may save her life.

I was angry. I began wailing angry tears almost the whole car ride home. I was angry with the docs. back home, I was angry at myself for not pushing harder. I knew something was still wrong, and yet I sat in that feeling, becoming numb to what I ought to have done. My flame was burning now, and I was getting ready to forgive myself, and move onto what I needed to do now.
As I had moments of calmness, we watched the sunset, homeward bound. I was comforted by it's beauty, and remembered that as the sun sets, it will rise again. Of course, I went back and forth from crying, madness, and fighting depression, but as the sun, it still sets again, and rises again, so my life shall be on this earth.

Which is better....... to watch the sun rise or the sun set? They both look the same, but take on different passions. There is hope in sun set, because all the days trials are finally coming to a close, and there is rest. For there is joy in the sun rise, for a new day has been given and you are awake!

Isaiah 45:6 "That men may know from the rising to the setting of the sun that there is no one besides Me. I am the Lord, and there is no other. "

Curious Hospital

I'm writing two different posts about my day at the neurologist's appt. because there are distinctly two different emotions.

As we drove the hour and a half, it took to get to this neurosurgeon, I was sick with anxiety. I was glad and excited that it was finally here and that we were going to finally get some good answers. Then I was also sick with nerves, I was nervous about what he was going to tell us and what if I don't like him?
Josh and I talked the whole way there, I read a little to him out of our "car" book, "A Grief Observed"- CS Lewis. (good book)

We got to this massive hospital, parked, set Tesh up in the stroller and away we went to explore the place she is to have surgery. Within a fashion, we found our way to the clinic. We waited for a long while, and noticed that some were taking pagers out and then coming back when paged for their appt. so....... we jumped on the band wagon. We explored a little bit of the hospital. My nerves were getting a little easier, getting to know the place a little better. I began to imagine what it's going to be like being here, and eating in that cafeteria when our little girl is recovering.
I found that hospital very curious though. As we walked the halls, we ran into certain sitting areas and cafe's as we passed. There were medical personnel, patients, family/friends waiting with their loved ones. People were staring at Tesh, but in the same, I was looking at them. Both sides, seeking out "what is wrong with that person?" Some have been here for days, some for months. You could never really tell what their situation was.
We stopped at this cafe cause, of course, Josh HAD to get coffee. I was looking and watched all the people sitting at the tables. Some were talking and laughing like it was a complete oasis for them. Others, had very tired expressions on their faces, not speaking so much to the person sitting next to them. I saw this teenage girl, sitting alone, with her ipod in her ears, and her phone texting away. She had bags under her eyes. I wondered 'Is she here with a sibling? or a parent?'
While we were looking at books, our very loud pager went off. We looked at eachother and thought, this is it! Let's go! As we made our way back to the clinic, I saw a nurse pushing a wheelchair along with all these cords and tubes. In the chair was a another teenage girl, with her face engrossed in texting her friends. I had to smile inside. Nothing will stop a teen from being a teen. :)





Anyway, we sat for a few minutes and were finally called into the room. We sat in there for a while, so much so, we got bored and started taking a bunch of pictures.

Then he finally came in..... with a mission in his eyes.....

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.