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!

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.

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!

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.

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.

Sinking In

Now I'm 17 weeks, 3 days and counting...

So far I have been just living with Kara's diagnosis and letting it be part of me. Sleep is not as elusive the past few nights. We have had some trouble with some family having very different opinions about our choice to let God decide our baby girl's days. Unfortunately, some have removed themselves from our lives. We are praying that God would change their hearts and that we would be a testimony of His grace to them. For the most part, our family, our friends, and our church has been a wonderful support. I think the reason I am feeling such peace is the covering of prayer we are receiving by so many. Thank you!

We saw my personal OB, Dr. M, last week. We still have lots of questions. Again he was not the most encouraging. HPE babies are so rare that he has not delivered one. We were told that the level II special care nursery at my favorite hospital would be adequate for her, but we are still praying about that. (I am really not sure. I would prefer my care be at that hospital, but her care may be best done at a hospital with a level III NICU.)

What we know about our baby girl:
**she has Alobar Holoprosencephaly (HPE)
**at 15.5 weeks, all of her other systems looked normal
**she did not appear to have a cleft lip or palate (which is common in HPE)
**she has two small eyes and we're not sure about her nose yet
**I can feel her moving every day
**she is fearfully and wonderfully made by our Lord

What we don't know:
**Which hospital is best for Kara and me (I am having some anxiety about this.)
**What her respiratory status will be once she is born
**How long we will get to enjoy her sweet spirit (I'm hoping for weeks or more...)
**What conditions she will have that go along with HPE

I am hoping and praying for: a doppler to listen to her heartbeat at home and record it (this is in the works), a 3D/4D ultrasound to have as a keepsake of her time inside me, and for God to work a miracle in her. I go see Dr. M on 9/10 and I have another big ultrasound with the specialist on 9/23. Keep praying!

I am reading and savoring James 5: 7-20. May God bless you this week!

"fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10