Daddy's Gift

Many nights my husband, Stuart, goes up to visit little Kara and he reads books to her. A couple nights ago he took this favorite to share...

From Schoolastic.com: "A young girl and her father take a nighttime stroll near the farm where they live to look for owls. It is a beautiful night, a moonlit winter night. Bundled tightly against the cold, they trudge through the pristine snow, "whiter than the milk in a cereal bowl." As they go, hidden in ink-blue shadows, a fox, a raccoon, a field mouse and a deer watch them pass. A delicate tension builds as the father imitates the great horned owl's call once without answer, then again. Finally, from out of the darkness "an echo/came threading its way/through the trees."

Author Yolen has given the very youngest readers an understated vignette, completely from real life. The young girl, in fact, is based on her own daughter. There is nothing overtly fantastical here. But John Schoenherr's Caldecott Award-winning watercolor paintings have made the familiar wonderful and strange. From his brush emerges the bold stare of a nocturnal owl, and farmhouse seen from the point of view of one. A beautiful picture book, infused with poetry, which is perfect for reading aloud again and again."

And from the last page:

"When you go owling

you don't need words

or warm...

or anything but hope.

That's what Pa says.

The kind of hope

that flies on silent wings

under a shining Owl Moon."

I have that hope for Kara, that she will be able to experience God's creation with me in some way, the way this little girl in the book was able to share and be shepherded by her father... (by her Daddy, Stuart)

Extubation Day

Kara was all dressed up when we arrived...

Kara's face without tape or tubes!!

Kara doing her trial off the vent...

Mommy loves you SO MUCH! Resting comfy with a new vent.

Yesterday, when we arrived at the NICU, Kara was all dressed up in a cute little outfit thanks to her nurse, Melissa! I was so thrilled! It was a big day for her. Dr. Morse pulled her off the vent around noon and they worked with Kara for about 30 minutes. She is able to breathe on her own, but she kept shutting her mouth. Since she has no nasal airway, her heart rate would fall and her O2 saturation would fall also. They tried several things, but she was being stubborn, so they re-intubated her around 12:30 with a slightly larger tube. She seems much better with the larger tube. The next step is to contact Dr. Collins, her ENT, and schedule surgery for a trach. We are waiting to hear when that can be done...

It was a scary day for me. I felt like I had to face the situation that Kara could leave us yesterday. I was very teary and I still am. It is very evident that I am not ready to let my little girl go... She is so funny. She is showing preferences to certain things. She doesn't like the hand splints that the OT made for her. She does calm when I put my hand on her head, pat her belly, and speak in her ear. Please pray that she does not get sick during the rest of her stay in the NICU. She will be safer at home from some bad germs. I am hoping we only have about 2 more weeks and then we adjust our home life to a "new normal." Thank you for ALL the prayers and I will try to keep things updated.

GTube Results and Plans

Kara's New G-Tube

Kara had her gtube surgery on Friday 1/23 and it went very well. As of yesterday (Sunday), she was taken off of IV fluids for the first time since she was born AND she was back on breast milk via a continuous feed. She finally started pooping last night late. These are ALL wonderful things which show her system is adjusting well to the new gtube. Saturday and Saturday evening once she came out from under the anesthesia she was having some pain, poor little thing, so they were giving her Tylenol, but she is doing just great now!

On to the next thing! This Wednesday, January 27th, Dr. Morse plans to pull her off the vent (extubate her) sometime between 9-10 a.m. Stu and I both plan to be close by for this. It may be immediately evident it won't work OR it could take several hours. He wants to do it in the morning so he can watch her through the day. Her oxygen sats could fall after several hours and that would mean she's working too hard. In either case, they would intubate her again and use the vent to keep her airway open until we could get a tracheotomy surgery scheduled. So we will know something by the end of Wednesday is my guess.

Otherwise, Kara seems to be doing well. She is tolerating her feedings and she is gaining weight. Her weight last night was 6 pounds, 2.2 ounces. Keep praying so we can bring our little girl home and SOON! I need to get ready by moving the crib and such. We'll be needing help from various agencies and that has to be lined up. Plus I will need to figure out follow-up appointments with various specialists. Kara has a Neonatologist, an Endocrinologist, a Cardiologist, a Neurologist, a PT, and an OT. Hope I didn't leave anyone out!! LOL!

Having G-tube Surgery Tomorrow

Sweet Kara was laying like this when I arrived for today's visit.

Daddy, Dan, & Kara Faith

Kara Faith is having surgery tomorrow morning at 11AM. It is to insert a gastro-tube (G-tube) for feeding. This is supposed to be a simple procedure that is done laproscopically. The surgery is supposed to be 2 hours or less. This is one more step closer to getting our little sweetie home. Please be in prayer for no complications from the surgery and for good healing. Kara has been losing weight so they have been adding fortifier to my milk. She won't be able to "eat" for about a day or so and then they will increase her feedings over several days. Please pray that her weight doesn't drop too much.

11 Days Old

Kara Bear with her Momma

Plan and Update for Kara Faith

All settled in for the night...

Mommy watches over her Kara Bear.
Daddy really enjoyed holding you!!

Big sister, Celeste, gets to hold Kara Faith for the first time.

First of all, let me thank EVERYONE for your prayers, our Gainesville friends for lovely meals, and for helping us with childcare while we visit our sweet baby girl! Kara is doing better than many predicted and we are so very thankful for God's mercy in this area.

Currently, she is on the vent still, but breathing room air. It gives her a little air now and then because it's like breathing through a straw and if she forgets to breathe (apnea) it reminds her. She has an arterial line through her umbilical area. Also, she is hooked up to several other monitors to watch her O2, her blood pressure, heart rate, and respiration. Kara had been having a lot of seizures which is very common with her diagnosis. She is on phenobarbital which initially caused to be very sedate. Yesterday, she seemed to "wake up" and was moving more normally and it was an exciting thing to see! Her phenobarbital level was 38.5 which they wanted it no more than 40, so were happy with that. We finally got her off the EEG study yesterday, so she is free of all the wires and I was able to hold her last night for more than an hour. Sweet time, that was!

CURRENT MEDICAL PLAN FOR KARA:
Dr. Morse (our neonatalogist) has decided that the first procedure we will do is to get Kara a G-Tube (gastrointestinal tube) placed for feedings. Currently, she is scheduled to have this surgery on January 25th. Recovery is 4-5 days. We will need extended childcare for that day as we would both like to be present at Shands while she is undergoing this surgery.

The pediatric ENT, Dr. Collins, spoke with us. He looked at the CT scan of Kara's nose and there is no way to do an airway through her nose. It is closed and there is no connection through for any possibility of breathing that way. He wants to try to extubate her and see how she does before he would do a tracheostomy surgery. Dr. Morse says we will give this a try, but that babies are nose breathers and she would have to "learn" to breath a different way, so it may not be successful. We will do this after her g-tube surgery is healed. If removing Kara from the vent is not successful, then we will proceed with doing a trach and that is the way to get her home. Kara has good lung functiion and Dr. Collins believes there is no more risk to do the trach procedure on Kara than any other patient. Praise the Lord because we were previously given other information! Recovery from trach surgery is about 1 week. All things considered, I believe we are looking at around 3 more weeks in the NICU if all goes well.

In addition, Kara had an endocrinology consult. One of the scans done showed that Kara is missing half of her pituitary gland. She is currently getting hydrocoritisone to replace that hormone which is lacking and caused her cortisol levels to be off. They are watching her thyroid function, also, and may add synthroid if she needs it. Kara is taking 50ml feeds of mom's milk and tolerating it perfectly. No reflux or anything! She's peeing and pooping just like any normal baby does. I am doing amazingly well with pumping every 3 hours and she is totally on mom's milk. I am hoping to keep this up as the antibodies this provides is best for her as she goes through surgery. Kara was 5 pounds, 14 ounces at birth and as of this morning is 6 pounds, 1 ounce. We are praying she gains weight appropriately as I usually have trouble with supply and fatty content of my milk. (I am wondering if they will call to supplement her if her weight gain doesn't pick up...)

We have been impressed with the nursing staff at Shands. They have been very friendly and helpful and caring with our baby. Also, we've been approached by many of the staff members that had known of Kara and had been praying for her before she arrived. God is so good!

So currently we are in a holding pattern for the next week awaiting Kara's g-tube surgery. Pray we can hold it together at home, at work, and with our sweet daughter. Stuart is going back to work this week. I am hoping to be able to drive at one point. My truck is in the shop and we are praying it's a minor repair... This race can be exhausting. I feel torn because my family needs me and my baby needs me. I am praying for God's grace one day at a time. If I seem scatterbrained, I am! Sometimes I am tired. Thank you for all of your prayers!

6 Days Old

Today sweet Kara got a bath and I just wanted to show her off!

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!!!