The A-Team

Little Miss Abilene is 13 months old today! She is growing like crazy and just an absolute joy to have in our lives. She is so happy and content 99% of the time. She only ever really gets mad when she is hungry or we leave her at the church nursery.

We had her followup appointment with Cardiology on Tuesday. It was supposed to be simple. We go in, have an echo done, seen the Cardiologist and be sent on our way. I was completely unprepared for what actually happened. That is where YOU come in. We are praying for a miracle right now.

Abilene still has a moderate-sized hole in her atrium (upper chamber of the heart, also known as an ASD). This is causing shunting (blood flow over the pulmonary valve in excess to what should be there) and it has not yet caused dilatation of the atrium but it is coming. We have been told to prepare for surgery. She is going to have to have this hole repaired since it did not close on its own during her first year. We have 2 options – heart catheterization which will place a device in her heart to seal the hole or open heart surgery. This is not happening tomorrow or even in the next few months. We will be monitoring her for the next year once again and see how she does. If this winter does not go well (as far as frequent respiratory illnesses) then we will be repairing this defect sooner rather than later. Most likely we will wait until she is 2 but it all depends on her and if things start to change. Since she is going to be entering a HUGE development change (walking, running, massive mobility) issues will start to become apparent. She may tire easily, need to rest, want to take more naps, not meet mobility milestones, etc…

When the news was shared with me (Aaron was home with the boys “thank you, honey!”) I was actually stunned. I had not expected to be told that my precious baby girl would need HEART SURGERY. I came away in a daze. I just looked at her and held onto my precious baby and said a prayer. I am now…correction WE are now asking everyone who reads this to please be in prayer for little Abilene. We are asking the Lord for a miracle. We are asking that He heal her heart. We really don’t want to go through heart surgery with Abilene. She has been through enough. We know that whatever the outcome, God is in control. He has known from the beginning and we will trust in Him. But still…I can ask, right?

Anyway, you all have been really patient with me…here are some pictures!

Here I am celebrating with my bubs at his 3rd birthday in May!

She has a nickname “Queen Sugie” – She was able to sit on the throne for her birthday!

CAKE!

Look at my ponytail…look fast too because I will rip it out in about 5 seconds!

Yikes! Where does the time go? Abilene is 7 months today! She did have a visit to the pediatrician this morning for a vaccine but I asked the nurse to check her weight and they are always so kind to oblige. She weighed in around 19 pounds! Healthy baby girl! She is VERY long and wears 12 month clothing. She is a true joy to have in our lives. She is the most relaxed, laid back and easy going kiddo. She just rolls with the punches and only gets mad when she is hungry and/or super tired. She does have her particulars: like NOT taking a bottle or formula for that matter. She has forced mama to jump through NUMEROUS hoops to keep her supply but I have been off meds for just under a month now without any drop in supply levels! Yippee! Especially since the medication I was taking made me gain about 20 pounds. Yuck. Anyway, when she sleeps she never liked to lay down. So she slept in a reclined position (thank you nap nanny and rock n play). Whenever she feels kinda yucky, she wants back in that position. Once she is up, she is out!

Little Miss Abilene has now settled into a pretty good routine with sleep. She wakes around 9 am, goes down for her morning nap between 10:30 and 11 am, wakes again around noon-ish or so and hangs out until about 3:30p and crashes again anywhere from 45 minutes to 2 hours. She then is ready for night time sleep around 7 to 7:30 pm. Pretty regular schedule.

She absolutely LOVES to eat. Nursing is okay but FOOD (fruit to be precise) is her passion! She eats an entire packet (around 4 oz) of food 3 times a day! Plus her cereal and snacks! This little lady just gets so much enjoyment from her feeding times.

Abilene loves bath time. I did not have experience with a baby with hair and she has a ton of it. So this was a bit new to me. We have to actually dry her hair every night before bed! She loves it:) It is so cute to watch her watching herself in the mirror. She also loves her excersaucer and jumperoo. She has very strong legs and uses them every chance she gets.

Tummy time was not a fave of this gal’s. So we didn’t do much of it. She has really had NO interest in rolling. But she will go from tummy to back when she gets tired and will get on her side to get at toys.

Teething. Oh the joys (pain) of teething. We are pretty sure she has been experiencing some teething pain. Poor baby. It has been kinda rough but thankfully it comes and goes.

Abilene loves to chew/taste/manipulate/swing/bang/bat/grab/hold onto/smash just about anything within reach. It is so sweet to watch her interact with her brothers. She has the 2 best big brothers in the whole wide world (of course I am not biased or anything:)

Sitting: Ah yes, the “sitting” milestone. She does quite well in the highchair and in the bumbo but no, she is not sitting on her own. Not really her thing right now. She is quite content being waited on hand and foot.

Oh, I almost forgot, she is SUPER DUPER ticklish! I love it, daddy loves it, the boys love it and we exploit it frequently! And now without further ado, here she is!

Loving eating all the toys!

Ooh, squishy turtle, he is super tasty!

Hmmm, what part should I taste next?

Thanks Mom! New toys to munch on!

She got to spend the evening with her Great Grandma Brown and celebrate her birthday. (And yes, Abilene just gets super comfy wherever she is)

We are officially drawing the proverbial “line in the sand.” We will have 1 final procedure for Abilene on Friday and should none of these tests prove anything, we are no longer going to pursue this “mystery” illness. Abilene is doing great and actually showing improvement! We are so blessed to have such a sweet and happy little girl. She is in no stress and we see no reason to continue to subject her or us to any more tests. We love her so much and we already feel robbed of some of her infancy that we do not wish to continue. It has been one crazy ride but we are officially done. We are leaving this (whatever it is) in God’s hands. He is the great Healer – what more could we do?

Abilene’s heart has been cleared. It is not the cause and/or contributing to her symptoms even though the Cardiologist would like to followup on her ASD when she is a year old. Fine.

Her CT scan showed collapse of her posterior lungs but it is far improved from her original CT scan. She may be outgrowing this? The pulmonologist is just as puzzled as we are. She is glad that Abilene is doing better but curious as to why her lungs look the way they do. So, we agreed to have her airway more closely examined via a scope on Friday. She will be sedated once again and submitted to this exam in the OR at Riley. Should this final test give us an actual diagnosis, then we will move forward with that. Otherwise, she is just a happy, sweet little girl who is growing and beating all the odds – so we will leave this alone.

Prayers for her continued healing would be greatly appreciated. It has been a trying time for all of us. I believe God has been leading us to this point for a reason…time to let go and give it to Him completely. Even in my daily devotional last night (just minutes after Aaron and I had this discussion) it talked about “doing the best you can but giving your kids to God.” It doesn’t get much clearer than that! I heard God’s voice and now I am trying to obey.

Sorry for my lack of posts…life is…well, crazy to put it lightly. I have many things I wish to put on here for you all to read and understand where we have been over the past couple months. It has been an interesting road but I am tired and ready to SLOW DOWN.

– Be still and know that I am God. ~Psalm 46:10

Here she is!!

This was SO cute! I loved the note Aunt Connie included! Thank you so much for the adorable outfits!!!

Miss Abilene at 6 weeks!

Saddest picture ever! This is her all wrapped up for her sleep study of which she only slept 35% of the 3 hours. Poor little baby. It broke my heart to see her like this.

Notice the hair. It was STUCK like this! The “glue” they used for all the leads from her sleep study did a number on her do. I made sure we washed up in the room:)

This was a favorite spot for the boys when they came to visit us at Riley. It was great to escape from the testing and just go play with my boys.

Now that my computer is up and running and I have gotten us pretty well settled here in OKC, I will be getting more posts up! Thanks for waiting!

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!

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!

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!