Surgery Day Update 7/31 6:23pm

Her surgeon just updated us, she made transport perfectly, she is now in her room getting situated and all hooked up. We will get to go back within the hour. Preparing for what I'm about to see, if that's possible. We've been warned it will be hard. Hoping to keep my strength, but will allow the tears.

Surgery Day Update 7/31 5:05pm

Ryleigh is out of surgery, they took her off bypass to monitor her heart and now she is back on for the duration of recovery. Surgery went well, some minor complications occurred requiring them to make a small hole in one chamber to help lower her blood pressure which may need closure later or it may close by itself, her electrolytes were off and a few other things, so she will be on multiple heavy drips. Her good valve is leaking, and will need a procedure down the road.

 

All in all they are pleased with the outcome, next critical step will be transport from OR to her picu room as they switch her life-support twice, which will occur in the next hour. Then the next 12 hours will determine if her heart will have any failures or issues. After those two milestones the next one will be to monitor her heart and body systems until her chest is closed, which should be closed on/by Friday. She's stable at the moment. Hoping she continues. She will be sedated to a degree for the next 3 days until chest is closed. Then under mild sedation, they will remove the tube down her throat and we can begin to see how she does off life support. Her cardiologist says we are 50% out of the woods. It will be a long 3 days coming.

It begins...

The day of surgery was so tough. I recall the drive to the hospital, as agonizingly slow, it seemed everything I looked at along the way was new to me, as if I never really took the time to look before. I remember just wanting to scream and burst into tears, but not wanting to scare my husband half to death.

When we got to the parking garage my stomach started to turn sour, I didn’t want to face this day and I certainly didn’t want Ryleigh to, but without the surgery she would not make it. It had to be done and the time was now. We walked into NICU prepared for changes, but she was as we left her the night before, sleeping restfully. When the nurse came is she asked how we were and we both in unison said good, it was so trite and cliché but what else could we really say? None of it was good or normal. She then asked if we wanted to give her a bath, which we both agreed to do with her help. The monitors, IV lines, and bed setting did not make it comfortable to do it alone.

So we finished that and held her for a while each before the nurses came in to transfer her to her transport bed. We each gave her a kiss as they explained what would happen next. The moment had arrived, it was almost a week to the moment since birth that they put her in her transport bed and began to wheel her out of the NICU and off through the white halls to prepare for surgery.

Our job before surgery was complete, we kissed her, hugged her, loved on her, fed her, bathed her…priceless moments that we were very lucky to get, not to mention developmental moments and monumental moments that would increase her chances for a fast recovery. The team let us walk a bit with them as they wheeled her through the bowels of the hospital floor. She was sleeping, I was weeping, and her daddy looked on with great concern and admiration – he was being strong for us all.

We came to a cross road and her surgery team told us this was it, they would go one way and we would go the other, this was the realest anything had ever felt in my life! I watched them take her down the hall until she could no longer be seen, we were walked to the waiting room and were told the first we would hear of anything would be when the surgery was about to get underway, then another update when it was done, and the final update would be when she was being transported to the PICU, which is a critical time as they change over all of the life support systems to mobile ones. It was going to be a long day!

We got the call at about 10 am that surgery was about to begin, so here we go. Hoping for the very best, that is my sweet girl in there!

More Photos taken in NICU Awaiting Surgery

NICU Stay

Ok so the last 3 weeks have seemed like a blur but so much has happened! So let’s recap.

Ryleigh was born on 7/24, that post you have. I was discharged from the hospital the next day (good behavior and fast recovery).

Ryleigh was taken to the NICU the moment she was born (7/24/12 - 7/30/12). This was not because she had issues, but because her doctors played it safe, she was then hooked up to monitors and IV’s. She spent 7 days and 6 nights there learning all the wonderful things normal babies do, eating (small amounts to test her gut), filling her diaper, getting bathes…etc. The eating part was the best part because she learned how to develop those sucking skills so after surgery she can start right away and not risk losing weight. She also took to the paci right away which was also great! We got to hold her and love on her while she awaited surgery. It felt as normal as it could, being we were in a NICU ward and she was hooked to 20 different things. At first, it was hard to see because no momma wants to see her baby that way – but trust me it got worse. I recall them trying to get a PICC line in because the IV’s kept failing, tiny veins I guess. I came in one day and she had an IV in her head! The next day they shaved half her head to get the PICC line in her head, yikes, so glad they were able to get one in her arm instead.

What is a PICC line anyway?

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice.

A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement. The entire procedure is done in the patient’s room decreasing discomfort, transportation, and loss of nursing care.

A PICC line may requested for a variety of treatment options which include some of the following:

-Prolonged IV antibiotic treatment;

-IV access obtainable by less invasive and longer lasting methods;

-Multiple accesses obtainable with one access line;

-TPN Nutrition;

-Chemotherapy;

-IV access related to physiological factors; and

-Home or sub-acute discharge for extended treatment.

PICCs are frequently used to obtain central venous access for patients in acute care, home care and skilled nursing care. Since complication risks are less with PICC lines, it is preferred over other forms of central venous catheters. A PICC is not appropriate for all patients. Proper selection to determine the appropriateness of this device is required.

The PICC may have single or multiple lumens. This depends on how many intravenous therapies are needed. A PICC line can be used for antibiotics, pain medicine, chemotherapy, nutrition, or for the drawing of blood samples. PICCs can be inserted by radiologists, physician assistants or certified registered nurses. They are inserted using ultrasound technology at the bedside or ultrasound wit fluoroscopy. Chest radiographs are also used to confirm placement of the PICC tip if it was not inserted using fluoroscopy.
Ok so let’s fast forward to the day she went to surgery…

Ryleigh Ann Walker

She is here, born 7/24/12, at 7:49 a.m., 6lbs 8 ounces, 19" long. Here is a short video of some of her photos of the first 2 days of life...

Viewing tip, once the video starts playing, hit pause until the gray load bar at the bottom shows it has loaded all the way, then it won't be interrupted. :-)

She is beautiful and already has her daddy wrapped around her finger.

Her repair surgery is set for Wednesday, August 1, 2012.

We go to see her each day and each day it gets harder to leave her. She has all kinds of wires, tubes, and IV's coming from her, she is so tiny, it is hard to see her lay there hooked up, but I know this is not the worst part of it all. She looks at me with tender eyes, I just want to kiss her and swaddle her, she is one tired kiddo, lots of activity during the day. I am hopeful all will go well and we can bring her home in a few weeks to love on her. My heart breaks a little more each day, it is overwhelming and almost more than I can bear, but I am being strong for her and hoping she feels our presence with her and it provides her with peace.

We love you sweet girl.

Final Countdown

We have reached our final countdown; Ryleigh will be here this week. We are ready I think as much as anyone can be, independent of her surgery and all that will follow shortly after her birth, we plan to enjoy every moment we can. She did wind up waiting for her cousin Bekah to get here so her little brother would have a caretaker. Lol

I think delivery will go fast, we shall see, she is ready and full term. The next post will be her birth announcement and photo! Last weight on July 6 was 6lbs 6 ounces, so I am expecting her to be 6 lbs 13 -15 ounces.

Any bets on weight?