New Opportunity

In the midst of everything going on right now, I have also taken on a new role at work. I know--I can hear you saying, why in the world would you take on a new position with a two week old baby?! While the timing isn't the best, sometimes it can't be controlled and one must jump on new opportunities when they are presented. This past week I started learning the duties of the Academic Dean of Students. Again, timing isn't good and there is a lot to figure out in this new role. Essentially I will be chasing down the students who aren't doing what they are supposed to be doing and help them start doing what they are supposed to be doing. (Basically, go to school and do your work!) While the position does move me back into administration, (which I love!) it is more of a lateral move. The position will aide in the renewal of my admin license, which is quite important at this stage.

It was quite helpful to have my mom here last week as meetings were often and long. Hopefully as things get going, the amount of meetings will decrease. Wish me luck! (OH, and A LOT of prayer!) :)

Carter thinks that Abigail's bows are perfect around his neck.

Medication

After the first tiny taste, Abigail arched her back and screamed. I knew at that point her twice daily medication was going to be a long process. Even though the pharmacist flavored it "tutti frutti," she doesn't care. Not that I could blame her! The hardest part is the amount--a full teaspoon per dose, twice a day. That is a lot for a small infant. However, since it is a compounded medication, the pharmacist can't decrease the volume any further. On top of that, insurance refuses to pay any portion of the it and it isn't a cheap medication. I think I got about 80-90% into her last night and this morning. I consider that a success! I suppose she will get used to it and then it won't bother her as much.

Biotin Deficiency

The other night I told Craig that I was pretty sure Abigail had the Biotin deficiency that was flagged in her first infant blood screen. Her left eye tends to be "goopy" and I had read that one of the symptoms could be conjunctivitis. She doesn't have conjunctivitis but the eye has caught my attention.

Turns out my suspicion was correct. I received an email from our pediatrician asking me to call him. At that point I knew that Abigail's second newborn screen had also been flagged. He and I spoke over the phone and he confirmed that the metabolic doctors he spoke to believe that the test is now accurate and that she has the deficiency. (One reason why I keep all the kids going to our doctor--he is on location with all the different specialists down at the TCH campus and can easily access anyone and everyone.) While I did have to take her today to have a regular blood draw (not a heel prick) to confirm the diagnosis, he feels quite confident in the findings. The drawn blood is being sent to the Mayo Clinic for further analysis and confirmation. I am also supposed to get a urine sample (right...) and submit that as well.

The good news is that it was caught very early and she can start taking Biotin tomorrow. She will need to remain on this medication for the rest of her life. The bummer news it that she needs to be on a medication for the rest of her life. I say bummer instead of "bad" because there are worse things in life. But, honestly, I am bummed. No parent wants anything "wrong" with any of their children. Again, we are so thankful it was caught early. Finding this early means that she probably won't experience any of the issues associated with it. If left untreated, it can be severe. It is considered a rare nutritional disorder.


It doesn't take away from her cuteness factor!


Ignore that her bow doesn't match her shirt--I finally found a bow that fits her little head.

Happenings

We have had a lot going on this past week. Here are the highlights:

Last Thursday Abigail had her first appointment with her pediatrician. She weighed 7 lbs 11 oz. Abigail was born with a skin tag on her chest but we had her pediatrician remove it because she was catching it with her nails. He tied it off and it fell off today. A few days prior to her appointment, I received a call asking for information regarding where to send blood test results from birth. I had a feeling that something was flagged on her initial state blood tests by the way questions were asked. At her appointment our pediatrician confirmed that her test was flagged for a Biotin deficiency. Right now, it doesn't mean much because there is a high false positive rate during the first round of blood tests. Abigail had her second round of blood drawn and we will wait to see if it was flagged again. Otherwise, she checked out perfectly!

She is a good eater, although I don't think I will ever be convinced that nursing is "comfortable," as some claim. While numerous lactation consultants have assured me that we are doing everything perfectly, it is far from "comfortable." I know things are better than they were with Carter so I guess it is just one of those things.

Abigail is also a great sleeper. I call her "squeaker" because she often squeaks in her sleep as though she is telling us about her sweet slumber. She loves movement but sleeps wonderfully in her bassinet. She only fusses when she is hungry--dirty or wet diapers don't bother her in the least bit.

This past weekend we had a garage sale. I know, I know. You are thinking, what?! a garage sale? You guys are crazy! I agree. However, we had a pile forming in the basement for a future garage sale and our sub division was hosting the sale. Therefore, the said event was advertised by our sub division, saving us time and money. I know, we are still crazy. It wasn't like we have anything else going on right now--a less than two week old, a two year old and a four year old. ;)

Tomorrow I go back to work. How am I going to do it you ask? Great question! My mom is here this week so she will be a profound help with the boys and allow me to attend the multiple meetings I already have scheduled. It is going to be fine. Really, it is going to be great.... (Insert a lot of prayer here.)


My sweet baby girl.

Firsts

The pictures are out of order. The ones from the walk were from over the weekend. The ones below are from today.


Today Abigail weighed 7 lbs 8 oz. She is growing!

Abigail's first buggy ride. This used to be my buggy as a baby.

Family walk

Her first bath! Initially she wasn't thrilled but then she got nice and comfortable in the warm water.

Tonight Ethan was feeling a little better. He is still on the Vicodin and does tell us that he hurts. It is good that he is so vocal about his pain as in the past he would not tell us if he was hurting.

Three procedures

Ethan did well today. We didn't say anything regarding the activities of the day until we were about ready to leave. At that point we couldn't avoid the topic any longer due to his persistent question of, "where going, mom?"

It was a long day, so for now I am just going to post the key points.

--From ENT: Ethan's trachea, while it does have piece of "floppy tissue," looks decent for him. They were able to use the appropriate size breathing tube instead of going down a size, which is a good sign. The doctor decided not to remove the tissue but instead let him continue to grow.

--From Pulmonary: Ethan has the same level of compression, though the doctor felt as though she saw less swelling and secretions this time. At this point, we are to see pulmonary again in a couple of weeks and work at tweaking his medications to see if we are able to maximize the benefits so that Ethan can keep up with his peers and function as well as possible.

--From General Surgery: Ethan's g-button closure went well. It seems as though they needed to work a little harder at closing the site than normal. It is considered abdominal surgery as the doctor has to close the actual stomach as well as the layer outside of the stomach and then the skin. The surgeon feels that it will heal well with not much of a scar. Since it is abdominal surgery, Ethan is in a lot of pain. He is on a version of vicodin and he is still moving gingerly and telling us that it hurts. He was pretty scared to go to sleep tonight since the last time he "went to sleep" he woke up in pain.

Honestly, we are all pretty tired today. I will update more soon. Thank you dearly for your prayers!

Tomorrow

Just a quick post to ask you to pray for Ethan tomorrow. He has three procedures under general anesthesia. It will all start around 11:45 am. I don't know how long it will go yet as there are three different specialists. While we are praying for safety and good results, we also pray for him as these times going under general anesthesia are getting increasing hard on him. I don't blame him for getting so upset. Craig and I will both be with him tomorrow, along with little Miss Abigail. We will keep you all posted. Thank you!

Abigail

Abigail has a sweet personality. She actively and willingly participates in Perciante family nap time—each day, 1:30-4:30/5 pm—as do both of the boys. She eats the typical every three or so hours and sometimes goes close to four. Like the boys, she enjoys her hands by her face but also likes to be swaddled.


Enjoying each other

Being together

Yep, she has been in a dress each day.

Abigail bought gifts for the boys

She knew Ethan's favorite thing is cars

He gave her kisses

And, Carter's favorite thing is construction vehicles

Sweetness

He also received a Mr. Potato Head

The bouncy seat is dual purpose--fun for Abigail and great vibration for a teething little boy!

Going home

Our stay was at the hospital was better this time. The big problem is the reception at the hospital--meaning there is none once you get to the recovery rooms. Neither cell phone would work and that was quite frustrating considering all of our immediate family are out of state. Otherwise, things went well. Abigail and I were discharged on Wednesday. She has had no problems with jaundice as her levels were quite low at her 30 hour check. At the time of discharge, she had lost only four percent of her body weight. Abigail is a great sleeper and good eater.

It was very exciting to leave the hospital and start our lives as a family of five.


I love her nose and how all three kids have the exact same one.


Her dress to go home--the bow was way too big.

Our family of five ready to go home.

The boys can't kiss and hold her enough.

I didn't know if Carter would care that much about her being here, but he adores her. He will spread out a blanket on the floor for her and insists on holding her numerous times a day. Both boys hate when she is sleeping because they want to hold/play with her. I hear "my turn" a lot during the day--both want her near so badly.

Meeting their sister

The boys were beyond excited to meet their sister. I wanted to get video of them walking into the room, but one of the staff was speaking to me when they walked in. I was thrilled to see how much they deeply loved her already. It is so sweet.


Ethan gave Abigail a Daisy Duck and Carter gave her a Minnie Mouse.


Carter was thrilled.

I love how they put out their hands to hold her. They could not get enough of her!

Ethan adores her. He continued to say, "I love baby Abigail."

Carter has been just as smitten. He loves her!

Can you tell he is excited!?

They were very proud of their "big brother" t-shirts.

The hospital even gave them big brother bracelets to wear.

Abigail's arrival

There was definitely some anxiety as we drove to the hospital Monday morning. I had never been induced before and didn't know totally what to expect. We dropped the boys off for some fun cousin time with Kenley and Sophia before we headed to the hospital.

By the time we arrived, when through the paperwork, etc., the actual induction didn't begin until close to 9 am. While I didn't have as hard of a time with the I.V. as I did with Carter, it was still a little difficult. (Blood draws, I am great--my son's open heart surgeries, no problem. Getting an IV, not good.) But, the nurse was able to numb the spot to help out. I had a fabulous nurse! She was wonderful.

At first, before the contractions kicked in, I was bored. I normally don't just wait around and have nothing to do during the mornings! But, of course, after those contractions start, the last thing I was thinking about was being bored. They were much worse than with the boys--I am assuming because of the pitocin. The doctor broke my water a few hours later and then, not long after the glorious and amazing epidural, Abigail was born. My doctor had to ask the NICU nurse (that is who they have come for all babies) if she was ready about two minutes after she walked in the room because I started pushing at 7:04 pm and she was born at 7:09 pm.






Her first bath