Thursday, January 28, 2010

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!

Thursday, January 21, 2010

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.

Monday, January 18, 2010

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!

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!

Thursday, January 14, 2010

6 Days Old

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

Wednesday, January 13, 2010

Update on Kara


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.

Sunday, January 10, 2010


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.

Thursday, January 7, 2010

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!!