http://www.facebook.com/video/video.php?v=248848310592&subj=629332291

Hi everyone,

I found this correspondence between myself and another heart mom, who’s baby was due for surgery and she had to pack and travel far from home, and didn’t know what to expect.

Keeping in mind that hospitals the world over have their own unique ways of doing things, here are some of the things I found during Naomi’s stay that were helpful to her, and our girls had their surgeries at the same hospital in Cape Town, SA.

Hope it helps:

“One more very practical bit of advice: have tops for Kiara that open in front. you won’t be able to lift her arms for a while, so makes changing clothes easier. Another heart mommy told me that, and she was right! And some of her fav toys and books.”

“Thanks for the advice i actually thought they don’t dress them and i was going to just take all her clothes:-) WEre you allowed to feed you baby bottle while in hospital or did they do everything or was she on a drip? How long was the op for that must be the worst part waiting for the Dr to come out:-( Sorry for all the questions”

“no prob Naomi’s op was supposed to be 3-4 hours, but was longer because they found TAPVD and had to repair it. Her cardiologist came to give me an update during the surgery.
when Kiara comes out of theatre, she’s go to Surgical ICU. When they have transfered her from the theatre equipment to her ICU monitors etc, they’ll call you. She’ll prob be on a ventilator (breathes for her) and drips and lots of monitors.   It looks more scary than it actually is. I posted a pic of Naomi straight after surgery if you want to prepare emotionally for it. it helped me to do that, but everyone is different. up to you.
They will keep her heavily sedated for the first 2 days or so, and then ween her off the ventilator. Then gradually day by day, depending on her rate of recovery, they’ll remove drain pipes and drips and monitor equipment. Then she’ll be transfered to paed ward for the rest of her recovery.

you’ll be able to stay with her through the 1st night  in the paed ward, but you may not stay overnight in SICU. but there isn’t much you can do anyway, and you do feel a bit spare, so that’s the best time to get some rest. Kiara will need you when she wakes up. they will actually encourage you to do that. They have a phone next to each bed, so ask for the number of the one next to Kiara’s bed and you can call to check up on her. She will have a dedicated sister with her only 24hrs a day while in SICU. when she wakes up then they’ll offer her a feed.  might ask if you’d like to feed her.  Once you are transfered to ped ward, then you will need to be there all the time with her.

In ICU they will need Vasaline or lipice (her mouth might get dry and it soothes dry lips), nappies, wet wipes, socks (their feeties get cold), her bottles, pacifier (if you use one), milk (they do stock some brands, but i just took my own). then when she wakes up you can use her own blankets. by day 3 or 4 she’ll need those tops i told you about, and a toy. I also found that Naomi enjoyed glycerine on her dummy to help with the dry mouth.

-Don’t be shy to ask questions.
-Listen to the sisters, if they ask you to move aside so they can see to Kiara.
-Sometimes (but not always) in the first few days post-op, babies get overexcited when they are aware the parents are close and their heartrate and blood pressure goes up, and that is not ideal. So if they tell you that is happening and ask you to back off, don’t be offended. They are doing what’s best for your baby.
-They will ask you to wait outside when they do physio, suctions and stuff like that. It’s not fun to watch, so listen to them.

That’s most of the info i can remember, that i only found out wonce Naomi was already there.”

Naomi was born on Thursday 31 July 2008. Healthy pregnancy, uncomplicated birth. She was healthy, weighed 3.45kg and fed well right from the start. On Saturday 2 August, we were told she had a heart murmur that required further investigation. It turned out she was born with congenital heart defects that would require surgery later on. Jonathan and I were absolutely shocked. She stayed in High Care till Tuesday 5 August before we could take her home.

Her combination of Congenital Heart Defects (CHD’s) include:

-Dextrocardia

-Atrioventricular Septal Defect, complete (AVSD)

-Double Outlet Right Ventrical (DORV)

-Congenitally corrected Transposition of the Great Arteries (TGA)

-Severe Pulmonary Stenosis

-Supracardiac Total Anomolous Pulmonary Venous Drainage (TAPVD) (which was only descovered on the operating table!)

If you wish to check out these conditions, visit
http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3012
or
http://www.pted.org/

Naomi was healthy and happy, though she did show telltale symptoms of her condition. She would go blue (cyanotic) when she was tired, and she drank and ate little at a time.
At around 6 months old Naomi started having “spells” where her pulmonary valve would spasm and restrict the blood flow to her lungs. These spells were very scary! She was medicated for it, and the goal was to get her to 9 months of age for her surgery.

Her surgery was scheduled for 23 April 2009 at Chris Barnard Memorial Hospital (the same hospital Dr. Christian Barnard performed the world’s first heart transplant), but was postponed after her Ped Cardiologist saw something during the echocardiogram that he could not identify. So instead of surgery, he took her in for a Diagnostic Catheterization. It turned out to be an extra vein feeding into her heart next to the Superior Vena Cava. We were grateful that it had been identified. Her surgery was rescheduled for 30 April 2009, with slight changes to the “game plan”

She was admitted on 29 April 2009. During the night while she was sleeping, I made peace with the fact that we were actually going to have to go through this, and that Father God was not going to perform a creative miracle on Naomi (Although He surely can!). My prayer changed: “Lord, I pray that you would guide the surgeon’s hands tomorrow.  Be with my baby.  Give Dr. Vosloo and her team supernatural insight and wisdom tomorrow.  I know that whatever happens, this little one was born to give you glory.  I look forward to seeing how that will play out, and I trust you.”

On 30 April she was taken to theatre for “Bilateral Glenn & PA Banding”. Her surgery took longer than expected, because Dr Vosloo found another abnormality called “Total Anomalous Pulmonary Venous Drainage”. Basically this means that Naomi’s pulmonary veins carrying oxygenated blood from her lungs to her heart did not feed into her heart at all, but rather attached themselves to the Superior Vena Cava, which in turn fed into her heart! So Dr. Vosloo repaired that. If they had not seen it, Naomi may have died! Thank God for answering prayer!

Just out of theatre 30 April 2009

It was so heartbreaking to see our precious little child hooked up to a ventilator, drips and monitors. She recovered well, and was discharged on 8 May 2009. Her big sister Rachel was so happy to have her home!!! We were all rejoicing at having come through all this, and thought this trial was over.

But on 13 May 2009 Naomi was admitted to ICU again with what turned out to be Chylothorax. This means that during her surgery, her lymphatic system was damaged, and was leaking lymph fluid (chyle) into the area around her right lung. A drain pipe was inserted in her side, and conservative treatment was started to try to decrease the amount of chyle her body produced, to allow the lymphatic system to heal. This included taking any source of fat or protein out of her diet, special medium trans fat formula, drips, etc.  This went on for 2 weeks, but the drain did not dry up.

On 29 May Dr Vosloo operated on Naomi to try to resolve the problem.  She came out of theatre with her right lung compressed, and was ventilated for 5 days.  She struggled so much! That was more difficult to cope with than her first surgery!

But nothing changed, so on 9 June she went into theatre again.  By this stage Dr Vosloo had tried all she could, and had never had a chylothorax case go this far. This time was successful and the chyle leak stopped.

On 17 June, Naomi was transferred to Blaauwberg Netcare, and was treated for food intolerance. She really turned a corner under the care of the Ped and Dietician there, both very dear people to me.

She finally got to come home on 26 June 2009. I was blessed with another 3 weeks at home with my girls before going back to work, which gave us all a chance to bond again.

4 September 2009 – Naomi is completely recovered, wounds healed, eating well, catching up with the milestones she missed. We never imagined we would have to go through so much, but Jesus Christ, in His grace and mercy carried us through. There were days when my faith wore thin, but He gives grace to the weak, and strength to the weary. When people say, “Wow, you’re so strong!” I have to give the glory to God, because my strength comes from Him! I must also say that this experience has birthed a new confidence in God in our hearts, and a maturity and appreciation for one another that is far deeper than before.

She is due for another surgery (Fontan) in a few years, and each day till then is a gift from our Father,  and we’ll cross that bridge when we get to it …. And Jesus Christ will be right there with us!

Thank you Father for your unfailing love, and thank you for Naomi
and for her life and testimony! You are truly GREAT!!!

Thank you also to ALL who were the hands and heart of Jesus to us
during this rough season. You are all precious to us and we will never forget!

With love, Jonathan, Samantha, Rachel and Naomi Roberts

January 2010 – Naomi is almost 18months old now, and is doing so well! She has caught up on all her milestones, and her Ped Cardiologist is super happy with her !  He just shook his head and said he can’t believe this is the same child he saw in hospital so sick last year! Praise God for all His blessings!!!

Last thoughts:

I know there are lots of heart hero’s out there with happy ending stories, and I also know there are plenty of heart parents who have not been as fortunate.  In honour of all the little Angels in the hearts and memories of  their loved ones, I want to say that I never, for a second, ever take Naomi’s life for granted.  My heart goes out to you.

And my prayer is that you will remember that your little ones are in the arms of their Creator, who loves them so much, and I hope you get to see them again one day.