The A-Team

Wednesday was not a good day. I was excited to get up in the morning and get the day going as we were to be released! I got everything packed up and the great waiting game began. I had to wait for the pulmonologist to come around and tell me the results of all the tests and give me the plan of action and send us on our way. I was happy to be going home because sleeping on a couch in Abilene’s room isn’t exactly quality sleep. Docs usually made their rounds by 9 am and when the clock struck 10 am and still no doctor. I asked my nurse to look into it. She did and said they were still making rounds. Then it was noon and then 1 pm. I made it very clear at 2 pm that if I hadn’t seen the doctor by 4 pm, I was discharging us. We were going to leave. Dr. C came to see me at 3 pm. She apologized and then started in on the findings.

Abilene’s echocardiogram, bronchoscopy and sleep study all came back negative. Her chest CT also was read as negative but it did show some collapsing of the posterior lung tissue and a diffuse haziness throughout both lungs. Nothing super worrisome but not conclusive to determine anything either. All common causes of tachypnea were ruled out. Now they have to look for the less common causes. So the next course of action was to perform a lung biopsy. My jaw hit the floor. This is not a simple procedure. She would have to be sedated. She would have an incision made in her chest and pleura and the tissue removed. Then she would be placed in ICU until she recovered from the procedure which could be a couple days or weeks. It just depends on her ability to recover from the trauma of the surgery. This was horrible news. We had 4 options:

1. Do nothing. Get discharged and move to OKC and wait this out.

CON: Her body may fail her at any time and/or she will suffer from confusion (which means she will not be able to control breathing/eating properly and she will aspirate).

2. Move to OKC and have the procedure done there.

CON: I have NO help with the boys during this.

3. Wait until we get back from OKC to have the procedure done.

CON: She may not be thriving by that point. This problem could progress.

4. Get the biopsy done as soon as possible.

CON: Aaron has to go to OKC by himself and we figure out a way to join him after she is better or Aaron cancels starting the new job altogether.

Aaron and I both were very much against the biopsy. Having to have her sedated and her pleura punctured is just not good for a baby so young. I just couldn’t consent without seriously praying about it. Our doctor was very kind to allow us to sit on the decision overnight and get back with her in the morning.

Sit/stew about it is what we did all night long. We did some internet research and have some more questions for the doctors and will most likely resolve to have the procedure done here at Riley while Aaron goes off to OKC.

So now it is Thursday morning. I get to meet with Dr. C and we discuss some of the questions we have. I get some answers. I still don’t feel like I can say “go ahead” and fortunately Dr. C had contacted her dept head who was coming into the office and wanted to meet to discuss our case. She is from North Carolina and recently came to Riley. She might be able to offer another perspective and possible alternative treatment plan. So we put the decision on hold until that meeting takes place. In the mean time, Aaron and the boys come up to Riley to hang out with me and beans. Dr. C returns and we are able to hear the results of the meeting with Dr. D (the dept head) together. It turns out that due to our delay in response some of the lab results from Abilene’s bronchoscopy sample started to come in. There is a bacteria culture that is GROWING! She has a bacteria in her lungs!!!! With this news, the biopsy is put on hold. Abilene will be put on an antibiotic and start steroids to help her expand her lungs. They will also be ordering a feeding study to see if she is aspirating milk (which could be the cause for the bacteria in her lungs).

I cannot tell you how much I appreciated all the prayers from everyone. We know that this test result coming in when it did was God answering our prayer for wisdom not to open her up. The lung biopsy is no simple procedure and we REALLY didn’t want to do it unless we ABSOLUTELY had to. Thank you Lord for showing us the way!

Abilene was put on a course of antibiotics, steroids and Zantac for reflux. She does not like the Zantac but will easily take the other meds (which are more important anyway!). Now we wait and see how she responds. We are also going to have a feeding study done to see if she can protect her airway.

Friday was awesome. She definitely has started to respond. Her respiratory rate has dropped into the normal. She is in the 60s when excited and 40s or lower when sleeping! This is normal!!! We are so excited that the steroids are working! She is so happy too! This little lady has been smiling and playing games with me. I even got some shots of her smile on camera! I notice a HUGE difference with her. Granted she is becoming more mature every day but I honestly think she feels better to not be panting.

On Friday morning, Dr. C came in and let me know that she is noticing an improvement and to let me know the feeding study will be done today.  I get word that the study will happen at 10:45 am. Poor beans can’t eat 4 hours prior except for just a little to get her through until study time because they need her hungry. Let’s just say Abilene didn’t much care for that. She wanted to eat when she wanted to eat. But thankfully, she was hungry enough to drink from a bottle (which she has had NO practice) and did it well! She protected her airway perfectly although she did have a little bit go up into her nose/nasal cavity which explains what Dr. M saw on the bronchoscopy:) We are getting somewhere! The plan as of Friday was for us to stay the weekend to monitor Abilene’s progress and make sure she has no reaction to the meds. We would be released on Monday. That was doable. We could still take off to OKC as planned and follow up with the pulomonlogist out there. As of Friday afternoon, Abilene was doing so great that our release time had been upped to Sunday! Yippee!!

Saturday morning: Now it is Saturday and I met with Dr. T who hasn’t met Abilene yet. He listens to me and I ask to be released today. She is doing AWESOME. She is eating. She is gaining weight. She is happy as all get out. She is breathing NORMALLY!!! Let’s go home! Dr. T sees no problem with that. He just wants to check with everyone else (nurses and Dr. P) to make sure they agree that she is truly doing great. I am super stoked that we may be home today!! And that Abilene is responding to the drug treatment and that we did NOT have to send our baby girl for surgery. Seriously, this big of a change and turnaround is nothing short of a miracle. God’s intervention is written all over this and I know it is because we have been surrounded by loving prayer warriors who were petitioning on our behalf  – THANK YOU!!!

I will keep you posted on our departure:) In the mean time, enjoy these pictures.

**pictures will be forthcoming as my computer is acting silly!

After writing to you all last night I realized something. I am truly blessed beyond measure. Abilene is NOT experiencing a life-threatening event. We are not having to stay at this hospital because she will be dealing with some catastrophic problem. Yes, her issue is serious but nothing like the little boy who is missing his colon and will never live a full life or the other little boy I saw recovering from major brain surgery. These are just 2 of the many kids here. I even feel guilty that we are taking up a room here when there are so many other much more severe problems. I am exceedingly thankful that Abilene is “fine” by comparison. We just need to get to the bottom of this breathing issue so she can live a full and vibrant life without restrictions. God formed her and knows what she needs and we pray for the wisdom and courage to get her the care she needs.

I love my family so incredibly much. I despise being away from any of them…right now I am actually all alone (haven’t been alone in about 4 years!). Little Miss Abilene is having her sleep study done. I will get a picture of what that looks like…it was so hard having to help get all the leads put on her and them wrapping her up like a mummy.  Gotta go…Beans woke up and she is doing a SLEEP study!

I am sitting here in Abilene’s hospital room. We had our appointment with the pulmonologist and it landed us an admittance to the hospital. Abilene’s respirations should be around 40 to 50 but she runs about 100 to 120. That is not good. She does have good oxygen saturation, so she is getting the O2 she needs but she has to breathe a whole bunch to get it. We are currently working to find out why. She had a CT scan performed tonight and tomorrow she will have a sleep study performed and on Wednesday she will have a bronchoscopy. We still are waiting to find out when the EKG will be performed. The tests are being run to find out what exactly is going on. She could have lung disease, a heart problem or “floppy” cartilage that is blocking her airway.

I am tired. I am discouraged. We are leaving in a mere 7 days and I get to spend the next 3 of them at Riley Children’s Hospital. Not exactly what I had planned. But I know God is in control. We are doing the right thing by getting her into the BEST place possible with the BEST doctors and right here near home. It is just tough to do and be away from my husband and boys especially when I have TONS to do…like PACKING!!! Oh well. It will happen when it happens. Please pray for all the testing to be done quickly so we can be released and sent home. Also, please pray for a good outcome/results and to have this resolved quickly or at least be something easily treated out in OKC.

I need to sleep…thank you all so much for your prayers.

Thank God we got into a pulmonologist at Riley on Monday! God is good! Hopefully we will get this resolved or at least have a plan of action before we leave for OKC.

Thank you for the prayers!

Just thought I’d post a few ideas to use some of the in-season delicious summer fruit while it is still on sale.

We make smoothies pretty regularly around here, especially since Abel will not eat fruit to save his life, but will drink a fruit smoothie down in a hurry! We typically just throw various ingredients in that seem like they go together into the blender, liquefy it, and enjoy.

Here are 2 experiments from this week that I thought tasted so great I wrote them down and even gave them [cheesy] names.

The Full Spectrum Smoothie

• 1/2 pint red raspberries
• 2 medjool dates
• 1 nectarine
• 2 bananas
• 1 cup green grapes (organic)
• 1/2 pint blueberries
• 1 plum
• 1/4 cup chocolate almond milk
• 1 teaspoon honey (optional)

The Red, White and Blue Smoothie

• 1/2 pint red raspberries
• 1 banana
• 1 plum
• 1/2 pint blueberries
• 1/2 cup water

The Red, White and Blue has been my favorite thus far and it has the most amazing aroma, like a bouquet of fresh flowers and it’s incredibly delicious.

Abilene is 37 days old! She had her “1 month” appointment today. She weighs in at 11 pounds 2.5 ounces. She is 22 inches long (not 100% sure as I didn’t get to see the measurement). Her head is 16 inches in circumference! She is one big girl:)

All went well. We have had some concern over her breathing ever since she was born. She pants. Also, her chest cavity just doesn’t look right. We mentioned this at her 2-week appointment but all was considered normal. Well, it hasn’t stopped. She still pants. The nurse and doc were able to see it today and ordered a chest x-ray just to be sure. They called me tonight at 6:15 pm to let me know that a radiologist from Riley had reviewed her x-rays and they have determined she has low lung volumes. She is not fully inflating her lungs. Not sure why but that is causing the panting. We will be seeing a pulmonologist ASAP. Please pray that we are able to get answers quickly and are able to help her to live a full life. We don’t want her to be restricted in her activities due to her breathing. Please pray for peace for Aaron and me as we make decisions and go to the doctor appointments in the midst of us moving 700 miles away from home.

We have had lots of visitors since my last post. Abilene got to meet her Great Grandpa Shinkle and Mary, Great Aunt Connie and Great Uncle Robert, attend her first wedding and meet her Great Aunt Brenda and Great Uncle Jerry and Great Grandma Fern! Abilene also got to travel outside Indiana before she was 4 weeks old! She also got to meet her Uncle Adam and celebrate her Grandpa Daniel’s birthday:)

Anyway, here are some cute pictures! **No, I haven’t forgotten the boys, this post is just for my beans (aka Abilene).

Love how she looks like she is giggling with her Grandpa

Loving the popeye look while she is sucking on her fingers (a fave past time).

Her first trip to Incredible Pizza Company

Our snugglebug

She is so alert at times and just loves to take it all in.

This is the dress she wore to the wedding. She is so stinkin’ cute! I wish the weather weren’t so hot because she burns up in most outfits…so she spends many days in just a diaper or diaper and onesie!

LOVES BATH TIME! **side note** creepy resemblance to Fargo…anyone watch Eureka?

One of our rare trips OUTSIDE. As you can see, she was NOT happy about the heat.

Cuddling with her pops

Uber side note*** I have started riding again! Yeah!! I have 19.5 miles under my belt since returning to riding on Monday:) It is awesome! I can’t believe how much I have missed it. It would have been a year in September since my last ride. Craziness. I look forward to riding out in Oklahoma:) Also, I am 2 pounds LIGHTER than my lowest ever (besides being a kid) and I am well below my starting weight from Abilene’s pregnancy! I am within 3 pounds of saying I have lost 85 pounds! Woohoo! Thank you Jesus!

Here is the link to her newborn photo session! Please feel free to let me know if you want me to send you any of these photos and what sizes you would like. I will make an order in the near future and send them out. Love to you all:)

http://photos.willowgrovephotography.com/p478134732

Just a quick update (more detailed post to follow in the next few weeks) about the FAA situation.

Firm Offer Letter is in hand:

Destination: Oklahoma City, OK

Date: August 10, 2012 through December 14, 2012

We are in the midst of closing up the house for the summer/fall and packing  up like the Beverly Hillbillies and move the entire A-Team to OKC for 18 weeks. We’re leaving on Tuesday evening Aug 7th and planning on driving straight through the night, it is a 12hr drive that I presume will take more like 24hrs with the little children. Just a reminder that this is only temporary, we’ll be back to our house in time for Christmas and also, presuming I graduate, so I can start my new job here at the En Route/ARTCC facility at Indianapolis International Airport.

We’re a little giddy about it, but excited! We have lots to do in very short time. Stay tuned.

Goodness, how can she be 3 weeks already? Time sure is flying by! We even celebrated her first “first” holiday – Independence Day! Here are some pictures but pictures are so much fun!

Hilarious sleeping position

She really enjoys bath time

Our family – now 5! We were decked out for Independence Day

Our little girl’s first 4th!

Mommy and Daddy

Sweet baby kisses

Abel wanted to give Abilene kisses

And Abraham had to give Abilene kisses too!

This is how we have been beating the heat…indoor pool (kinda)!

I am how old??? 3 weeks today little missy!

We don’t venture out much these days between the heat and my immuno-suppression going on right now (which affects Abilene). Hanging out at home has been tough but worth it for sure. Still trying to catch up on everything and get into the new “normal” for our family. Abilene still wakes to eat about every 2 to 3 hours so sleep is few and far between. That’s okay. Life will go on! This mama needs to crash as the baby is now asleep. Goodnight!

1. My hives are better! Thank you for all the prayers! We still have no idea what caused them other than possibly hormones. Who knows. I am just glad they are gone! I am still on meds but just the steroid now. Hopefully once that is done, things will be right as rain…ah, rain…

2.  Abilene had her 2-week weight check appt on Tuesday. She weighed in at a nice 9 pounds 9 ounces. She is doing great. We are working on this whole sleep at night thing and hang out with us during the day versus flip-flopping it. Plus we have a nasty case of diaper rash which made for 2 very unpleasant nights. We are working through it though and have it mostly under control.

3. We started potty training Abel on Sunday. He has it down pat. He is a pro at this…except pooping. That kid cannot control his urge to poop his pants. He has done so well at the other part of potty training that he actually wears underwear. We really have to be johnny on the spot with him and the poop or it’ll end up in his drawers! Oh well. We think he gets stage fright when he has to think about pooping on the potty. Kinda funny all things considered.

4. We were so blessed to have newborn photos taken of Miss Abilene. Here is a quick preview!

http://blog.willowgrovephotography.com/2012/07/her-name-is-abilene.html

5. Last but not least we are just trying to stay cool in this ridiculous heat. Our poor AC can’t even keep up. It still hits 81 degrees upstairs at bed time which makes for miserable sleep for all involved. It has been rough and I pray that the Lord will send relief soon!

That’s it for now. I will try and get another update done this coming week!