Thursday, December 14, 2006

third trimester...

Time just seems to be flying by! So much has happened in the past month & its hard to believe that in just 12ish weeks, our little boy will be here! He's grown quite a bit over the past four weeks & the baby bump is large & in charge now! As of December 1st, he's grown to 2 lbs 2 oz, putting him in the 44th percentile at this point in the pregnancy. Babies with HLHS usually are on the small end of the growth scale, so he's doing great!
Jordan & I have been busy getting things ready for his arrival. We've cleaned & organized every room in our house & are ready to begin transitioning the office into his nursery. While we were in Tampa over Thanksgiving, some friends Jordan had grown up with threw us a delightful baby shower, so we now have some baby clothes hanging in his closet. So precious! Currently, we're finalizing our registries at Target & Babies-R-Us. Who knew babies needed so much stuff! We're hoping to nail down a room design theme & bedroom set today, while we've knocked out most of the other big items, such as a stroller, car seat, etc. has been tremendously helpful to us new parents in knowing what's tried & true.
More excitingly, we've narrowed the baby names list quite a bit & are beginning to really feel some direction for what his name will be. Growing up with an unusual name that tells part of my story, I would love to pass that on to our son. So that whenever someone asks him, "hey, why did your parents name you __________?", he can share the testimony of the great things God has done in his life, carrying him through the HLHS to victory! So something meaning "overcomer, warrior, God is my strength"...along those lines. We'll keep you posted on our progress with the name :)
On December 1st, we had a sonogram at UNC to give them their own view & records of our growing boy. Boy, was he feisty & proud that day! Shortly after getting him on screen, he did "The Worm" move for a while...he's got rhythm already! :) It had been about a month since the last sonogram & Jordan & I were amazed with how much he has grown! You can clearly see where the cartiledge is becoming bone & muscles are strengthening around his long legs. That day, he had decided it would be fun to see how far down in mommy's hip he could bury his little head. No wonder my leg had been cramping all morning! We weren't able to see his little face well w/the position he was quite content in, but the back of his head was looking just fine. With his growth, we were able to have a better view of his heart. Nothing has changed in that arena. The HLHS is still very present, w/the missing mitral valve & fibroelastosis surrounding the left ventricle far more visible now. The good news is that no additional problems have presented themselves. So other than his heart, he's growing perfectly! His kicks get stronger every day. What a blessing to feel his life moving about within throughout the day. There are many nights that Jordan & I just watch my belly move about as he plays inside. We can't wait to meet our little boy & kiss his precious face!!
As many of you know, we've been in the process of determining whether to have the Norwood Procedure done at UNC of Children's Hospital of Philadelphia (CHOP), where the procedure was developed & HLHS babies are operated on every week. Our care coordinator at UNC was kind enough to set up a meeting w/Dr. Michael Mills, Chief of Cardiothorasic Surgery at UNC. We spent an hour & a half with him, asking questions about his background & experience w/HLHS & Norwood Procedures, to determine our comfort level w/having our boy operated on at UNC. Dr. Mills was simply delightful! Brought to UNC in '88 to develop the heart & lung transplant program, he has been performing the Norwood on infants since '91. His success rates are equivalent to the national standards put out by Children's in Boston, Philly, & Ann Arbor, which is 70-75%...awesome! Granted, with the mitral arteriosis & fibroelastosis of the left ventricle, our boy is towards the 70% range of that rate, but luckily Dr. Mills is familiar w/this form of complication & had much success before. He works with a very close-knit team in the O.R. & while UNC is a teaching hospital, Mills will be the principle surgeon on our son. No one's learning on our little boy...we're only having experienced hands in his chest.
The meeting was truly such a blessing to us both! We left feeling tremendously encouraged & more hopefully in the face of these surgeries. He explained why they wait 3-7 days to do the first operation: this allows the infant time to adapt to living outside of the womb, strengthening the lungs & digestive system, & ensuring that he does not go into surgery with any illness. Babies who undergo the Norwood Procedure between 3-7 days after delivery do much better than those that go under the knife just hours after birth, both in surgery & in recovery. The entire procedure will take only 3.5 -4 hours. Most of the babies Mills has operated on w/o complications have been able to go home around 2 weeks after surgery, which is shorter than we expected. We will be able to hold our son from delivery till surgery. After about 2 days post-op, we'll be able to hold him again. The greatest determinant to the amount of contact we can have with him is his need for a ventilator, as that would only allow us contact through touch rather than holding his whole body. On any given day, 30%-40% of the infants in the PICU are those Mills has operated on, so they are very familiar with infants who have undergone open-heart. God has put our worries to rest once again by bringing us to the perfect people to help our son. What a loving God He is! He has everything under control!
So that's all for now. Updates will come more frequently now as the doctors visits increase in regularity & the countdown to his arrival comes to a close. This has certainly been a time of testing & faith, but praise be to our awesome God who carries us through every fire & flood. As our friend Tami Poland stated so eloquently last weekend in service: no matter how grey the sky appears, nor how loud & long the thunder rolls, behind those clouds God is ever-shining. Even when we can't see its light nor feel its warmth, we can have hope & joy knowing He is there in complete control & shining His love & light over the whole earth even still.
While we don't know the outcome of this situation yet, we have confidence in our God & that He is in complete control. When fears, doubts, impending medical bills, & dire diagnoses try to cloud our minds & hearts, His rays of light & truth prevail. For He is the First, the Last, the Great Physician, the Everlasting One. From Him & through Him & to Him are all things! To Him be the glory, now & forever more. Amen!

Wednesday, December 13, 2006

thank goodness for nutrition!

As most of you know, I've been quite sick through out this entire pregnancy. 24-7 morning sickness, migraines, muscle cramps, etc. Needless to say, it has not been the joyous, glowing pregnancy we'd thought I'd have. However, thanks to our incredible families, Jordan & I were able to travel up to DC in mid-November to have some nutritional testing done. Dr. George Mitchell, a phenomenal internist & old family friend, collected & shipped blood & urine work to the MetaMetrix Laboratory in GA to have an ION (Individual Optimal Nutrition) Profile done on it. MetaMetrix is the world's leading functional laboratory, performing services for medical & research groups globally. The ION Profile is a sophisticated testing process that analyzes the individual's nutrients on a molecular level, determining on an individual basis what the body is getting too much of or lacking & how best to supplement it for optimal cellular health & function. This Profile performed tests on the amino acids in blood plasma, homocysteine in blood serum, mineral (element) analysis in the red blood cells, fat-soluble vitamins & lipid peroxides in blood serum, & organic acids in the urine. If it sounds complex & confusing, that's because it is! For more information on the ION Profile & all the specifics therein, visit
Three weeks after the blood & urine work was collected, we received the full 16-page Profile report. No wonder I had been feeling so sick throughout this pregnancy & even weak before conceiving...I'm a nutritional mess! The results allowed us to determine that I've had a chronic yeast infection in my digestive system for quite some time now, explaining the multiple symptoms I constantly was experiencing as well as the depletion of my nutrients even though I'm a healthy eater. So between the chronic infection & this little baby, I was nutritionally depleted in many areas. The ION results were then compiled to create a customized formulation to restore & balance my entire nutritional spectrum, down to the amino acid level - which of the 10, I was alarmingly low in 8 of them. Dr. Mitchell also put me on a strict yeast-free diet to eliminate the chronic infection through nutrition, as I can't take any medication currently due to pregnancy. No sugar, white flour, lactose, or eggs. While it has been difficult & at times creative adapting to this new eating plan, words cannot describe how much healthier I feel! Between the diet & 25 supplements I'm taking daily (no worries...all natural, custom-formulated, & pregnancy friendly), I'm feeling more like myself than I have in a long, long time. People seriously underestimate the difference good nutrition can make! The migraines have gone, no IBS problems, edema has not recurred, muscle aches don't haunt me throughout the day, I can't remember the last time I had a bought of morning sickness since beginning this regimen. And to top it all off, our baby is now getting the full nutrition he needs to grow healthy & strong! Dr. Mitchell has formulated my supplements to specifically strengthen the development of cardiac tissue, so as to give our son the best chance possible while still developing. Isn't God good?!?!?!!!!
Jordan & I are truly humbled & grateful to have had this opportunity. Thank you to the Leino parents for providing the means for us to get to DC to have all this testing done. Thanks to the Roddy parents for both arranging & supplying the testing & necessary supplements. This is all something we could never have had the opportunity to do on our own. Thank you, thank you, thank you to our families!!! Once again, God has provided what we needed most & has brought us closer together through the process. Its wonderful feeling healthy again, able to enjoy time with Jordan before the baby is here & simply experience more of life once again rather than being bound by physical ailments.
Praise be to our loving God & thanks again to our amazing families! We love you all so very much!

Thursday, November 09, 2006

more details on what lies ahead...

Its hard to believe that we're already 5 months into this pregnancy! Baby Leino has been moving a lot over the past several days, to the point that you can see it happen. Jordan was able to feel him for the first time recently, making this journey even more real for the both of us. He's growing quite a bit. Every morning, I wake up feeling a bit bigger (pictures soon to come). It certainly is an exciting time!

We've been fortunate to qualify for the Perinatal Care Coordinator program at UNC. Based out of the Center for Maternal & Infant Health (, our coordinator takes point on arranging all of our appointments, procedures, etc. She will meet with everyone involved in the full care of our baby each month to keep everyone on the same page & moving forward. Accessible to us at any time, she either knows the answer or can obtain the answer to any question we may have as his arrival approaches. What a blessing this is! We no longer have to worry about keeping everyone up-to-date. She'll also arrange tours & meetings for us of all the locations our baby will be treated & everyone who will be working with him before D-day. Once again, God has provided us the best possible care within this difficult situation. He is so good!

Our pediatric cardiologist, Dr. John Cotton, has also been tremendously helpful. Taking the time to personally answer our questions, giving us a better grasp on what our baby's arrival & days following will look like. At this point, we'll have a normal, spontaneous delivery. He'll undergo the Norwood Procedure 3 to 7 days after birth. Following this first open-heart surgery, he'll spend approximately 1 month in the hospital, going first to the NICU, & then the CICU (Cardiac Intermediate Care Center) once he's not in critical condition to continue his recovery. The CICU is a step-down unit for all children who have undergone heart surgery. Once he is taking all medication & food orally, he should be able to go home.

Initially, he'll be fed through an NG tube (naso-gastric) while recovering from surgery to supplement his nutrition intake for better recovery from surgery. He should be able to come home after 4 weeks or so assuming no other complications arise. If for some reason he still needs the NG at the time of release from the hospital, UNC will send someone to our home ahead of time to set it all up for us & teach us how to operate the equipment. Other than this, he will not require additional equipment for life at home post-surgery.

So that's all we know at this point. We're still praying for a miracle by God's healing touch. But even if nothing changes, we know that He'll provide everything we need to make good decisions & care for our little boy, however long he may be here - be it a few days or a lifetime. He is in control & we give Him all the praise for the great things He has done. With every kick from within, I'm reminded that God is crafting his little body & nothing is a surprise to Him. We are so excited for all He has in store for the three of us!

Thursday, November 02, 2006

its a beautiful day!

Praise God from whom ALL blessings flow!!

Jordan & I received a phone call late yesterday afternoon that the full amnio report had come in & we could call the doctor first thing in the morning to discuss the results. Well, after a long, sleepless, prayer-filled night, we made the call this morning.

The entire amnio report came back NORMAL!!!!!!!!!!!!!! Thank you, Lord!!! Now we know for sure that other than his heart, our little boy is perfect & healthy! An who knows, there may be more miracles to report in the days ahead! This news honestly came as quite a shock to our family & doctor, as his case of HLHS is so severe. What a blessing! Now we can move forward with surgery plans without the worry of other possible complications.

Thank you for your continued prayers & words of encouragement. Though this journey has not looked anything like we thought it would, God is showing His mighty hand & great love for us every step of the way!

Give thanks to the Lord, our great God & King. His love endures FOREVER!!!

Monday, October 30, 2006

A ray of light amidst the storm...

God is so good!

The preliminary results of the amniocentesis fish test have come in. This test is for the presence of extra chromosomal 21, 18, 13, & the gender chromosome. This included severe syndromes such as Downs & Edwards.

Well, praise the Lord, the test came back as NORMAL!!! What a blessing & truly an unexpected one with the severity of his heart condition. Any one of these extra chromosomes would have compromised his eligibility to have the necessary surgeries once he's born. We will have the full report by the end of this week, which screens the full spectrum of chromosome abnormalities. But what a step in the right direction!!! After several weeks of hearing bad & worse news with every doctor's visit, this certainly is a blessing!

Thank you again for your many prayers & support. To God be all the glory & praise!

The miracle of life...

Thank you so much for visiting our site! Jordan & I are now 22 weeks pregnant w/our first child - a son! We're so very excited that God would bless us with a child! We did not plan to become parents so soon, but have once again learned that God's timing is absolutely perfect! We couldn't imagine any other route at this point...How exciting! While this is a wonderful time, there is much need for prayer.

We've known for about a month that he has a heart defect, but could not determine at the first two ultrasounds what it was due to the baby's position, contractions, etc. Thankfully, UNC Chapel Hill Hospital is nearby & we were able to get answers two weeks ago. Our little boy has an irreversible heart condition called HLHS (Hypoplastic Left Heart Syndrome). This syndrome is comprised of several heart defects, most notably a severely underdeveloped left ventricle & aorta. Right now, he's fine while in the womb since the whole heart is working together to distribute healthy blood to the entire body & the placenta is providing the oxygen needed to his blood. However, distribution of oxygenated blood to the body is entirely dependent on the left ventricle & aorta after birth, & thus presents a huge problem as his heart will not be able to do this on its own with this condition. Survival after birth is dependent on one or both of two options. This first is a process of 3 open heart surgeries, the first occurring during the first week of his life & the last at two years to fully reconstruct the structure & flow of the heart. The other option is a full heart transplant in order to survive once he's born. Both options are equally viable & risky. Simply put, he cannot survive w/the heart he currently has. There is no specific known cause for this condition, simply something that can develop in some babies. Thankfully we were able to find out about this now, so that plans & surgeries can be put into place once he's here. Otherwise, he would not last one week after birth if left untreated. The form of HLHS which he has is an extreme case, with other defects such as a missing mitral valve & endocardial fibroelastosis, which means the left ventricle is completely made up of scar tissue at this point, preventing it from both developing & functioning. We learned last week that these added complication prevents him from being a candidate for an in utero procedure at Boston Children's Hospital, but at least we know we've tried all we can in that arena. To learn more on this condition, visit & search "HLHS".

Hard news to take, but this is God's baby & His ways are higher than ours! We're praying for healing & that all will be amazed at what God does, whether that is the supernatural healing of his heart or the success of these surgeries. No matter what, we know God is in control & He will provide everything we need to walk through this.

So please keep our family in your prayers. It is difficult at times, finding the balance between healthy grieving over the situation & making the plans that now seem necessary once he's here, and maintaining faith & trust in God...because there is NOTHING He can't do! What a roller coaster :) We appreciate your prayers for wisdom during this time as we go through more tests to learn more of what's going on with the baby & to make plans for once he's here in light of his medical situation. God has provided some of the very best medical facilities & options available just a few cities away from us - what a blessing! He is in control & our eyes are on Him.

That's the scoop on our little boy. Keep checking this site for updates on his status as we learn more about his condition & make plans for the necessary surgeries once he's here. God is in control!!

Diagram of a Normal Heart

Diagram of a Heart with HLHS