Update on Kara

MEDICAL STATUS INFO FROM YESTERDAY...

We finally got to meet with Dr. Morse to discuss our baby girl when we were at Shands yesterday afternoon. Kara, evidently, has a very difficult airway. Her lungs are functioning fine, but her airway is so small. If they remove the vent, it will collapse. I believe this has to do with her anatomical structure and it's part of her "mid-line" defect which is related to HPE. In order to get her home we would need to do a tracheostomy. I was thinking we would need to do this... What they are trying to determine is what the risk of doing this procedure is with little Miss Kara. Because her anatomy is so difficult the risk may be too great. We don't want our little girl to pass away in the OR...
**Our prayer is that the risk is minimal and that she would be able to have a trach.

She was still hooked up to the eeg study when we arrived. They upped her phenobarbital to a higher dose for "maintenance" so that she would not have seizures. Some of them are sub-clinical meaning you can't see them, but they show up on the monitors. We don't want her to be over medicated and Dr. Morse agrees. The Neuro Doc wants the seizures ALL gone, so I think Dr. Morse took the middle road on her dosing and they were watching overnight to see how new dose worked. I am hoping when we return this morning that the eeg machine is gone. Suzanne (NICU nurse we love) said she needs a bath. I would love to see that!

Another condition they found on Kara yesterday is a problem with her heart. It's called Tetrology of the heart which is a narrowing of one of the arteries (?). She has what is called Pink Tet. Dr. Morse said it is not a problem right now. Normally, a baby would have surgery at around 6 months to correct the condition. If she is still with us in one month, the cardiac team wants to see her and re-evaluate this condition. So currently this area is not an immediate concern.

Dr. Morse says she is stable. The MRI shows very underdeveloped eyes (optic atrophy). She has not opened them, but she cannot see with them based on the MRI. (I do have a friend whose daughter has the same thing and opened her eyes at 4 weeks old...) Kara is taking 32 ml of formula (or the breastmilk project I am currently working on) at every feeding. This is about 1 ounce.

Right now we just want to spend time with our precious daughter. We don't know what her future holds. We are trusting in God and thanking Him for the miracle of her life. I treasure every moment I have with her. Stuart has been going up in the late evenings and reading books to her and praying over her. Our immediate needs are people to come care for our children so that we can be in the NICU. Yesterday when I went it had been 24 hours since I had seen her. Right now I would like to go twice a day if I can physically handle it. Jamie is probably going to be watching the children in the evening hours when we go. I just don't want to overburden him. The 5 youngest seem to listen best to an adult, not their own sibling.Thank you for ALL of your prayers! We covet each and every one! We know that God can move in Kara's body (and he already has) and make things possible. I am trusting in His plan for her and just offering my praise and thanksgiving for Kara Faith's life so far.

A Peek at Kara 4 Days Old

INTRODUCING...

Kara Faith

Born on January 8th, 2010

6:42 a.m. via C Section

5 pounds, 14 ounces

I will post more information soon... Kara is in the NICU and is on the vent, but breathing room air. Please pray for us and Kara in the days to come. It will be hard to leave the hospital without her tomorrow... Go HERE for more photos.

36 Week Check & Amnio Reduction & Update

36 week check-up
We went in on Tuesday afternoon for a 36 week check-up. I had been having lots of contractions the day/night before so we were anxious to see Dr. Duff. He approximated Kara's weight right at 6 pounds even which puts her in the 45% for weight. (I have NEVER had a baby this small, so this ought to be interesting!) My amniotic fluid increased a lot, so that probably contributed to my weight gain in one week of 5.5 pounds. Eesh! The AFI last week was 24.1 and this week it was 45+. (Anything over 25 is polyhydramnios.) That's one week of fluid production! So we were sent over to L&D Tuesday evening for an amniotic fluid reduction procedure...

My 3rd Amnio Reduction in 25 days
Went to Shands Tuesday evening and got checked in. I was having contractions during our wait--a good amount of them. It was around a 3ish hour wait, but we finally got our amnio reduction around 9:45 p.m. They took 1.8 Liters of fluid off in about 11 minutes. The docs that were there were great--I had 3 and 2 nurses and a med student observing. (I really did feel like a science experiment!) The fluid was sent off to do a test (FLM-fetal lung maturity) to see if Kara Faith's lungs were mature. They were looking for a number around 45. Her number was 10... My heart just dropped. Immediately afterward I had what they call "uterine irritability." Let me just say the thing went crazy with contractions and it was quite painful. During the couple hours following Kara's heart rate dipped a couple times. I received IV fluids and nifedipine for the contractions plus tylenol #3 for a bad headache. They recommended I stay overnight in the hospital and rest because I was still having lots of contractions. Stu had to go home. That was hard because I had never spent the night alone before...

Thank you to Teri who came that evening and played and watched the kids for several hours. They had so much fun with her! Jamie helped put them in bed expecting us home by midnight. Stu came home at 2 AM and Max (8) was on the couch holding Joshua (1). He had woken up crying and Max and Joshua were watching Transformers. (He is a good big bro to take of little bro not knowing when or if Daddy would come.) I came home about 11 AM on Wednesday. Dan, Teri's hubby, watched the kids while Stu went to get me. Then my good friend, Liz, from church arrived and spent all day cooking soup and chicken pot pie from scratch. The kids love her and she is the best funny story teller!

Since I've been home...
I have not been feeling well. Initially, I got home and had terrible chest pain. It was very scary. We got my OB on the phone and he thought it was acid reflux from the meds they gave me to reduce the contractions, so I was not to take it anymore. I was still having contractions all afternoon, so he called in terbutaline. It makes you really shaky, sometimes I get headaches, and it's kind of working. Also, I was not dilated when I left the hospital, but last night I lost my mucous plug. I immediately contacted Dr. Duff. He decided today to give me steroids to help mature Kara's lungs. I went in today for my 1st shot of betamethasone. I have another tomorrow afternoon. Even on the terbutaline, I am having contractions either every 3 minutes or 5-6 or so this evening. We are hoping not to go back in to L&D, but haven't decided what to do yet. It is looking like we will have a c section on the 14th which is next Thursday. Unless we have to go earlier...

Some thoughts... Time is eroding. I don't feel ready for this in too many ways--especially on the home front. It has been very difficult doing nothing and letting things go. I feel like my life is completely out of control right now. I know God has things ordered, but it is hard for me to not be able to do much of anything at all. Stu asked me the other night while we were in the hospital, "Are you okay?" I remember I just started crying. All I could think was that going through a 3rd amnio procedure was SO hard and getting the news on her lungs. I thought, "I will never be the same again..." Not after this. No matter what happens. I hope I don't totally fall apart at one point. I'm sure all the meds, no sleep, worrying, pain, hormones, etc. aren't helping my state of mind. I am trying not to be afraid and concentrate on God's goodness. He gave me this gift of Kara's life. I want to celebrate and treasure it.

(While I type this I should be laying down. We have lost the power cord to my laptop--hope it turns up soon. Please pray for the contractions to stop, so I can stay home and Kara can get the full benefit of the steroids I received today.) A special thanks to Lorie and Lisa who helped us with the children today!!

35 week Check-Up

Yesterday, we went in for my 35 week check-up with Dr. Duff. I have been feeling a bit better since my amnio reduction last Christmas Eve (6 days ago). My fundal height was 42. It had been 46 before last week's fluid drain. Baby looks good on ultrasound, but we still did not get a weight measurement on Kara. (I have been a bit disappointed since we have had NO weight on her since I was 28 weeks pregnant...) I was told we would do that next week. My C Section date was moved up to January 20th with an alternate date of January 14th. I expect the fluid issues to return by my appointment next week, so I think we'll probably be doing that earlier delivery date. I expect we may have to do another amniotic fluid reduction sometime next week. At that point, they would test for lung maturity. Be in prayer for Kara Faith's lungs to be mature when her time comes. I have had a lot of contractions lately and do have meds to take for them, but they make me feel badly. It is difficult to manage the children and the house right now. I am trying to rest as much as possible. My next OB appointment is January 5th. I look forward to that! Please pray that Kara Faith stays as healthy as she can be safe inside me. I want to meet her desperately and bring her home.

Heartbeat of Heaven

Here is a video of Kara Faith's hearbeat. Her Daddy was really enjoying listening, so it's rather long. I know I will treasure this. I'm so glad we brought the camera that does video to our amniotic fluid reduction on Christmas Eve!

Update on Amnio Procedure

Here's an update on our amnio reduction procedure. We went in at 9 on Christmas Eve. They were all waiting for us and didn't make me get an IV this time. (Happy dance!) The same resident that did it last time was there and performed it this time, so we knew each other. They got 1.7 LITERS of fluid off in just under 15 minutes and it wasn't nearly as painful as last time. I had lots of contractions afterwards every 2-3 minutes, so they gave me terbutaline to stop them. I was sent home 2 hours later. I was in and out of L&D in about 3 hours. I had a lot more pain at the site where they put the needle this time, but I'm chalking it up to using a larger needle. (At least it didn't take 35 minutes like last time!) Also, I had contractions most of Christmas Day and had to take meds for them. I'm still having some this morning, so may take more meds, but they make me dizzy and I pretty much can't do anything.

We are anxiously awaiting the arrival of our Kara Faith and think it will be near the end of the first week of January... We'll see what the doctor says next week on Tuesday!

Prayer for Amnio Tomorrow

After our OB appointment today, we are scheduled to go in tomorrow (Christmas Eve) for another amniotic fluid reduction at 9 AM. I am supposed to call to make sure they're not too busy before we go in. Please pray that this can be done with no complications and I'll be home on my own couch tomorrow afternoon enjoying Christmas Eve and Christmas Day with my family. I measured 46 weeks again and I'm 34.5. I don't feel prepared to have her tomorrow (or the next day). My house looks like a bomb went off and I have no idea how to coordinate child care. Please pray for God to be all over the details! Thank you!

Stuart & Me, Christmas Photo

Here is a picture of my hubby, Stuart, and I at a recent church Christmas Party. Notice the big belly! It's sweet Kara's huge swimming pool. :)

33.5 Week OB Visit

I went in to see my OB on Tuesday. After all I went through with the amnio drain on Monday, I felt I didn't gain too much. He measured me (fundal height) at 43 and I was 33 weeks pregnant. It has been more tolerable since then and my contractions have slowed. I received meds for contractions when I need to take them, but so far I haven't needed to--praise the Lord! I was very disappointed that we didn't take a good look at Kara and do a biophysical profile to check her approximate weight. It has been over 5 weeks since that was done and I felt they would be following me more closely... I have no idea what her growth rate is at this point. I can only pray that she is doing well in that area--I have spent much time crying and worrying over this, but have had to take it to the Lord. The doctor wanted to see me back in 2 weeks. He will be out of town for Christmas next week. I don't know what my polyhydramios issue will look like next week, so I requested to be seen by someone to touch base next week. I'm supposed to go in on Wednesday, but don't have a time yet. Dr. Duff would like Kara to stay in there until at least 36 weeks. We don't want immature lung issues to complicate her already challenged state. Please pray that I would not be discouraged during these last few weeks. It is very difficult for me to get around and take care of my little children (and it's Christmas!). My church family has been wonderful with meals and coming over to help at times. That has been a blessing! I have a hard time not being totally self-sufficient.

Fluid Drained Off Today

Due to several hours of middle of the night contractions Sunday night, Dr. Duff instructed us to go to L&D at Shands and have fluid drained off to increase my comfort and prevent baby Kara from coming early. We were greeted by a lovely nurse, Vikki, who is a personal friend of the Walters family at AGCC. She said she knew of us and had been praying for our baby. WOW! Late afternoon they drained 1.325 LITERS of fluid off. It was horribly painful and Dr. Duff wanted 1.5 L, but I couldn't go any further as it took 35 MINUTES to do it. We are now home, but I am still having cramping from the procedure and contractions every 5-10 minutes. We are hoping NOT to go back in tonight. I see Dr. Duff tomorrow afternoon at 4:15 to check on Kara's weight, etc. They say they can do the procedure again on me when it becomes necessary. (I'd rather not!) By the way, I was measuring at 46 weeks pregnant and I'm 33.5! But we'll just take it day by day. I am supposed to be doing nothing, for now, which is hard with such a busy household. Thank you SO much to our generous friends at church for helping out with our children and to all our prayer warrior friends from far and wide. We appreciate ALL of your help and every one's prayers!

Our God is big enough...

They say that I am crazy for letting you be born,

But one look at your angel face makes crazy all the scorn.

They say we can’t afford you–that you’ll need a lot of stuff,

But your pudgy cheeks remind us that our God is big enough.

They say it’s strange–seven kids so far–and ask what’s wrong with us,

How could we know that proof of married love would cause this fuss?

God’s Word tells me He made us, so when they look at you,

I’ll tell them not to ask me why, because He made you too!

Kelly Crawford @ Generation Cedar

Prayer Request

Evidently, I don't do things half way... I went today for a check-up with Dr. Duff and I had gained a significant amount of weight. Over the past several days I have just been feeling HUGE in the belly and was afraid that the amniotic fluid had increased. Well, I was correct. I am currently measuring 39 weeks (fundal height) and I am 31.5 weeks pregnant. This is an issue because it could cause me to go into premature labor due to my body "thinking" it's time. Just to let you know how much I grew recently: I measured 32 at my last visit 12 days ago and now I'm 39. That's a 7 week hop in the matter of 12 days!!! At this rate, I am afraid of what may happen. I think the biggest I've ever been is 44.

Dr. Duff said if I get too uncomfortable, have contractions, or trouble breathing that they can do an amnio and drain off probably about 1 Liter of fluid. This might buy me another week or so at the point that we do it. I don't know if we would do it more than once. I've never had an amnio and I have heard they hurt! I'm a bit overwhelmed by it all. We want Kara Faith to stay in there as LONG as possible. Dr. Duff says there is nothing I can do, but I am still going to tighten up my diet so that my sugars are even better and don't fluctuate as much. Maybe this will help.

Please, please be in prayer that this doesn't continue at the rate it is and Kara can stay in there until at least 36-37 weeks. Thank you!!!

Thankful!

I am extremely thankful for little miss Kara Faith. She is doing so well! I am 31 weeks today. Here's a picture of me on Thanksgiving. I'm getting so big that I don't know how I'll make it another 8+ weeks. Pray that God blesses the rest of this pregnancy abundantly.

Loved by Littles...

Taken by Max (age 8)

I am 30 weeks, 4 days and these are Eden & Tommy's hands.

Our Beautiful Baby Girl's 3D/4D

Caught with her hand to her mouth--so cute!

Kara's foot pressing against Mommy.
Her hands are so perfect!

Here is Kara's face. No cleft lip! Fingers curled around her cord.

She looks concerned here. She likes to keep her hands over her face.

We were so excited to get a 3D/4D ultrasound of Kara Faith on Monday! She looked so beautiful! We were all surprised at how wonderful all of her features appear. The doctors kept saying her eyes were small, but on ultrasound they look proportionate even though she kept them closed (which is normal). Kara has no cleft lip and a cute little chin! We did confirm that she has one nostril--I'm just happy for that! The opening appears to be large enough for an airway, but we won't know until she is born. She is doing a great job of "practice breathing" which we saw on this ultrasound, too! Pray for no airway difficulties at the time of her birth. We are so very thankful to God that Kara looks so good! (I am thinking she looks like her big brother, Dan, but we'll see in January!)

The tech was a little nervous because we brought Celeste, Dan, & Max with us to the appointment. She asked if they were prepared. She had only seen pictures in journals of HPE babies. You could tell she was quite surprised and happy to see Kara looking so wonderful!

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Psalm 139:13-16

28 Week Check-Up

I went to see Dr. Duff at Shands yesterday. Kara Faith looks great on ultrasound! Dr. Duff said, "Look, there's some hair." Sure enough you could see an edge of fuzz on her head. I got a quick glimpse of one of her ears, too. Her weight has come up. They are estimating her at 2 pounds, 9 ounces which puts her in the 47%. She was moving all round and had her legs crossed. She looked just beautiful!!


Our only concern currently is that I am carrying extra amniotic fluid (already). The report did say I do have polyhydramnios. I am measuring 31 weeks and I am 28. It's just over the normal limit right now, but prayer would be appreciated for this particular issue. I feel bigger in the last few days and my belly has been hurting some, so this must be why. I have measured as much as 6 weeks ahead in a couple past pregnancies, but that evened out later. I am currently taking insulin in 3 injections a day and testing blood sugars 4 times per day. My sugars have been very good. I think the hardest part for me right now is to eat when I'm not hungry or to drink when I have heartburn. All in all, I'm just happy that Kara looks great and I am almost recovered from my bout with the flu! We have a 3D/4D ultrasound scheduled for this Monday, November 16th--can't wait! I'll put pics up from that. We didn't get any this time.

A little update

Just a little update:

~I am sick with a coughing, achy virus. I am hoping I don't develop a fever or ear infection to go with it... Please pray for quick healing.
~I see Dr. Duff November 10th for a check-up which includes an u/s to check Kara's growth and my amniotic fluid levels. I will be in my 28th week then.
~We have a 3D/4D ultrasound scheduled on November 16th thanks to Dr. Marichal!!!

I am enjoying the cooler days. This is the "boring" part of pregnancy and I love it! Kara moves a lot and I am enjoying the baby belly, too. I hope to get some pictures done in the next few weeks. Thank you for your prayers! They keep me calm and comforted.

A Place for Kara...

"In my Father's house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also."

John 14: 2-3

Alone with my thoughts at 6 o'clock in the morning is not always a good thing... I started thinking about the fear I have. Yes, I am afraid. I have never come home from the hospital without a baby. Not only this, but I will probably never come home with Kara. I am trying to treasure the moments I have with Kara and focus on the good gifts from my Father above. I am afraid. Afraid that when I get home my arms will be empty and aching for my little girl. My heart will be at a loss. Will this crush me? I pray not. I fear the hormonal changes and the demands of my large family. I want to be a good mother to my children... Who will care for me during my recovery from major surgery? Who will help me care for my children? I have been told not to "borrow trouble" from the future. I am praying that God would order things in His way and that these concerns would be answered perfectly. Of this I am confident, that God is preparing a place for Kara and that in His timing she will be with Him. I will see her again some glorious day.

I contacted a photographer from Now I Lay Me Down to Sleep foundation. I am hoping they can come do photos of me pregnant soon. Then maybe we can do another session closer to her birth, but sometimes these babies come early and I want to be prepared for that. Pray that Kara Faith would stay healthy in her secret place and that fluid levels would remain normal. Your prayers are what is holding me together. I know it!

Things New

Here Kara is showing off her profile. Her hand up there cast a shadow across the bottom of her little face.

Yes, we are sure she's a GIRL!

We met with our new OB, Dr. Duff, this past Tuesday. God has blessed us with a very kind man for a doctor. We went over our diagnosis and what we were want to do for Kara. Dr. Duff is going to take very good care of me and Kara Faith. I am sure. He will be seeing me every 2-3 weeks and then we'll go to every week near the end of December. We have a C Section tentatively scheduled for January 25th. It's a Monday... I am hoping maybe we can move it up a few days because it's easier to get someone to help with our 7 other children over a weekend. I'm trying not to borrow "trouble" from the future, but we are going to need a lot of help. I am praying that God will provide all the answers. I am thankful He has arranged everything perfectly so far!

I major concern I am having is my blood sugars. Dr. Duff added regular insulin to my regimen, but I am having a little trouble with that. I "crashed" yesterday morning, so we are going to have to play with the doses and times, most likely. Also, my fastings have not come down significantly. Please pray for this to all stabilize. I am taking the dose I took at the END of my last pregnancy.

Please pray for Kara Faith's health. She is looking good on ultrasound and her growth is right on for how far along I am. We got the best profile picture yet! I am at a point of peace in my pregnancy and enjoying it.

"For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end." Jeremiah 29:11 KJV