Friday, August 17, 2012

A Photo Worth a 1,000+ Tears

As a heart mom, we see our babies unconditionally as they are, but it may be hard for others to understand what we see and go through each day.  While we were in the PICU I refused to allow any photos taken of her hooked to the life support machines, IV’s, tubes, her chest open, chest closed with stitches and bandages, etc, it wasn’t an image I wanted looming for years to come, haunting me, haunting her.

One of the PICU nurses came in and saw my husband on one side of her bed and me on the other both holding a hand each looking down at her – she got excited and said, “do you want a photo, this is a photo moment.” I looked at Craig and looked at her and said “no”, she was shocked, she said, “this is a beautiful photo though, you don’t want a picture of it? I wish you could see what I see!”, and I said, “it is a memory I will always keep in my mind, but I don’t want the other elements in the photo”, she was surprised, but to her she - sees it each day and of course it was not her child laying there, so for her she was used to it, but as a mom I wasn’t and would never be.

I will never forget the day I saw her right after her surgery with her chest open and the next 9 days after recovering, it is not how I choose to document the ordeal, her memory will live strong, but her present is what I choose to live in.

Now that we are over 2 weeks out from surgery, I look at her incision and cry; I am amazed at her resilience and strength. I see her surgery sweet spot and it brings a flood of emotion – of the day, of the event, of her life. I am going to share the one and only photo that I will take of her incision not for exploitation, but to show that my strength too has grown.  

I love her so much!

Surgeon Visit - Update

Today we took Ryleigh to meet with her surgeon for a post op visit. Routine. They took xrays to look at her chest and heart. Heart looked great normal size. Such an awesome visit today! Ryleigh's surgeon says her heart looks fabulous, no issues, slight murmur they will monitor that, no chest swelling, lungs look and sound great. She's even gained weight & grew an inch! 7lbs 6 ounces, 20 1/2"!

Chest healed nicely, pretty zipper! :-) My girl! So pleased! No stent needed at this time to fix the narrowing of one vessel. Her surgeon says it’s too early and we will monitor it :-). That's awesome.
Some say she is a miracle, I would agree.

She has to stay isolated from crowds and people who don’t live in our house until after her vacinations, but over all that is not bad, so we have just over 4 weeks left on “house arrest” I am ok with it because I get to love on her all day! J

While she is the best case scenario, we are not taking any chances, momma bear is very protective of her baby cub! A cold may be annoying to healthy people, to a heart baby it can be deadly. I think we will stay home and wait it out. J Better to be safe!

Lots of love!
August 29th we see her Cardiologist for an echo and follow-up, routine! More to come.

Wednesday, August 15, 2012

First 4 days at home

It has been an amazing 4 days since we brought her home, she is acting so much like a normal newborn, no special needs, good appetite, likes to let us know when she is hungry or not happy, loves to sleep, looks around, so alert, lots of facial expressions. We are enjoying her so much!
Her brother has been such a huge help!

We meet with her surgeons on Friday (8/17) and her cardiologist, we will hear the game plan going forward and all about her upcoming surgery.

Momma is tired, I forgot how much work a newborn is!

The Ah Ha Moment

I have waited for this moment and it is better than I could have imagined! Ryleigh in her crib, moments after walking in the door!

8/11 1:26pm Coming Home...

Ryleigh is coming home today!!! I'm excited and terrified! She is 18 days old, 11 days post surgery and 9 days post chest closure. She gained 5 ounces since surgery and is eating almost 2 ounces every 3 hours. Wow! They did tell us in 2-3 months she will need to come back for a cath surgery to put in a stent for a narrowing artery, but as far as her surgery and recovery, she did amazing. It has been a crazy couple of weeks! It is hard to believe all that has happened in this amount of time too.

The time has come, we are getting discharged!

8/10 9:28pm, in Step Down Unit

Staying with my Ryleigh tonight in the hospital, all is well, but she will be coming home tomorrow. She has done great. We were told today she will need another surgery in 2-3 months to place a stent in an area of her heart that is narrowing, but should be pretty simple, in and out same day - one of many mini surgeries along the way of our "new" life and new “normal”. She's been sleeping for 2 1/2 hours, why didn't I sleep??? lol lol

To my heart mom friends 8/09 2:20pm

To my Heart Mom Friends
I just heard we are bringing Ryleigh home this weekend once she finishes her final 2 days of antibiotics. I'm terrified and excited! I am going to need you as I'm sure you each felt this too! We are heading to stepdown in a bit. It's becoming real. I'm about to conquer the hardest feat of my life. This is one of those moments I'm not sure if I should smile, cry, or both.

Heart Mom, Lee Ann

8/9 10:59am

60mls every 3 hours. That's like 2 ounces!!!! We've reach the goal, docs say she can eat to her fill now. :-) too bad I don't produce enough to eat to her fill :-(. No stress though, I did my best in a very unnatural environment.

8/8 8:11pm

Sleeping, sleeping, and still sleeping, she is acting more like a regular newborn every minute. Eating 45mls by bottle every 3 hours, amazing! She's almost there. YAH!!! So proud of her! Only has her oxygen cannula!

8/7 11:21 am

Ryleigh is off to her final hospital recovery hurdle, swallow study! She's about to eat her hand!!! Lol If she does good, she may be home this weekend! She's done super. So proud of her. One healthy baby. I've given her the best of me and it shows. :-)


She did good on her study not 100% but what child ever is that has been through her ordeal! She will remain in PICU until discharged, doctors are real impressed (duh!!), she had a tough day getting her feeding coordinated but in a few days she will be a champ, I just know it! Looking forward to having her home!

8/06 3:16pm

If you had my view you would feel as close to heaven as I do. My angel is right where she needs to be. Love it!! Finally.

8/6 1:06pm

Ryleigh's heart pacer wires are out! She's doing it all by her self! They are giving her, her final blood transfusion then the chest tubes will be out next this afternoon! She's sleeping so peaceful. She's got the PICU team amazed. She's upto 14mls per hour now!!!! I'm gonna run out of milk! Lol lol time to go pump! :-) I get to hold her this afternoon, I'm going to cry just typing this, it's been so long I can't wait!!!

8/6 at 10:05am

Ryleigh is still defying the odds! What a trooper she is. She started getting fed to her small intestine on Saturday, but she has figured it out that it’s not going to her tummy and is one cranky baby! She gets her chest tubes out today and a feed study done to see if she can begin eating to the tummy, if she does well, she may skip the NJ tube to the belly and get the bottle, nice! Either way she...
will be content once she gets food in the belly. So today will be another day of healing and hoping. I am hearing rumors that she may be home very VERY soon! Yesterday they were feeding her SI 6ml’s an hour, wow, I am going to deplete my reserve at that rate, lol. She looks good though, pressures are nice, oxygen great, heart is smooth, wonderful. I may teach her how to live life, but she teaches me the meaning of it every day!

August 4, 5:09pm

Ryleigh is VERY vocal today. Her ventilation tube came out and a nasal feeding NG tube went in. They are going to start food tonight to her small intestine to see if she can tolerate. I am so glad to have that ventilation tube removed, but they stopped her pain meds until her vitals shows she needs them, poor thing she looks so uncomfortable. She’s on heart meds so if she gets pain meds it further...
lowers the heart rate. She has her moments of peace though, sis starting to look more and more like the baby I had before surgery. Each day is healing!
Monday she gets her chest tubes out and then we can start holding her again Tuesday!!! So Excited, she loves her head rubbed and for me to talk to her, she knows I am here and I am sooooo in love. What an amazing (and very feisty) little pea pod!

Emotions that set in...later that day...8/3

Just got home from visiting Ryleigh, poor thing is so miserable, she is fighting the tubes, makes me sad, she looks at me begging me with those eyes to do something, she looks so uncomfortable, I wish I could, breaks my heart, but tomorrow the ventilation tube down her throat will be removed, yahoo.
Hold tight sweet girl, soon comfort will find you, and your paci too. Can’t wait to bring her home ...
and really “baby” her!! Can’t wait to hold her, can’t wait to touch her again, can’t wait to smell her, can’t wait to kiss her, can’t wait to dress her, bathe her and change her…so many things I miss and can’t wait to do.
Love your babies; take nothing for granted even the small things like a simple touch, peck, or hug. I would give anything to rub her little feet.

72 Post Surgery 8/3 10:04am

Ryleigh is out of surgery. Her chest is closed. Yahoo. It went very smooth. We are officially on the mend now. She will be heavily monitored for the rest of the day, word is she may get off ventilator/breathing tube tomorrow afternoon and I've requested to have her paci ready!! She was still under sedation and a paralytic when we saw her, but they said she will be awake in an hour and more alert tonight. So proud of her!!!

48 Hours Post Surgery 8/2 4:49pm

Whew we are 48 hours post op and so far she is TEXTBOOK truncus heart baby! She is still holding her own, a lot of the meds have been decreased, so they are weaning her off, which means she is doing more of the work. Her chest closure is set for Friday sometime near midday, it will take a few hours and then she will be sleepy from the sedation. I am excited because if she stays this way, we were informed by her cardiac nurse that we will start to see some of the tubes, wires, and IV’s removed this weekend and ventilation probably by Sunday, even better news, IF she stays this good, she will be moved to the almighty 6th floor (the 6th floor is STEP DOWN) mid-next week, yeah baby girl! She will spend about a week in step down if she eats well and vitals stay like this, so in 2 weeks from tomorrow she could be home, in her own bed (but she can’t have visitors for a while, sorry)! S
tep down is the integration unit where the parents provide most of her care, the cardiac nurses will teach us how to care for her and her needs, educate us on what to expect, and observe. Most babies get held in step down because they have problems eating, but Ryleigh is a head of the game because she was eating for 6 days before her surgery, sooooo she has developed the breath-swallow-suck skills – so we are encouraged by this, which is also HUGE, oh and she loves her paci which is also a plus – it’s good for heart babies (or poor feeding babies) to take a paci if possible, faster skill development!
The chest closure will be a huge milestone and of course when she eats through her NG tube this weekend will also be a huge milestone to see how her gut handles the blood flow and her heart handles the strain. The most action we saw today was the nurse treated her left eye for a clogged tear duct, . She is moving so much now, they had to weight her arm down because they are afraid she will grab her ventilator tube and pull it out. She doesn’t like it and I don’t blame her. I think she handled this surgery better than most adults!! My new normal is setting in and I could not be happier I am her mommy, at least I know under my wing she will be well cared for and loved by all those in her life.
My heart hero, Ryleigh, we love you sweet girl!!!

24 Hours Post Surgery 8/1 at 4:06pm

Ryleigh has officially made it 24 hours post op with OUT any issues, her vitals and gases are all great. She had a great night, she is on a diuretic to drain some of the excess water so they can close her chest on Friday, we heard they might do that tomorrow, but the chief surgeon just came in and said Friday, that’s ok because that means she will soon be off bypass and her drugs will be decreased
so we can see what her little body can do on its own. She is comfy and on pain meds, lightly sedated, we can talk to her and she opens her eyes and raises her little hands – she knows we are here. They plan to remove her chest tubes, breathing tubes, and life-support on Friday as well. She got one line of about 20 out today. She is doing great, best case scenario she is so far, but we have a long way to go.
She has one dedicated nurse each shift and they are AMAZING! All in all I am amazed at her resilience and strength, her heart is doing great, the next major milestone will come when her chest is closed and tubes are out – we can see if she has what it takes to function on her own (which I know in my heart she does, she just must!). It’s good that they want to remove this stuff quickly so she doesn’t become dependent. I am one proud, encouraged, deeply in love momma. I am so fortunate I am her momma, I have learned so much from her 8 days of tiny life. I hope this encourages all parents to go and hug your children a little tighter, love them a little deeper, and enjoy them - every moment you have them.
I banned photos of her while her chest was open and her chest tube is in. I don't want to remember her like that ever again, I hope when she is older she is ok with that.

Surgery Day 7/31 8:46pm

We just got to see her, it's heart breaking. Omg I don't think I will sleep! I can't even explain how horrific it is. No mom should see her baby like that!!! She is stable but it's like seeing a bad horror film featuring my baby. I wish I had NOT seen her chest, it will haunt me forever. So heartbroken. I know lots of heart moms and my hats off to you, I had no idea how hard that was going to be. Hoping the next 72 hours passes quickly and her chest gets closed!!! I am weak compared to my daughter, that is strength to the core. Her team of doctors ARE gods! Believe is science. Wow.

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


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 patients 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;

-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…