Its crazy how a mother's intuition begins to work, and also how God begins to slowly prepare you for things in life in the most subtle ways...

over the last three weeks Andrew has just been "off" to me. I spoke with my pastors, began the trek in getting our hearts and minds in a good place and was just told to "rest" three weeks ago. Ive been forcing myself to go to sleep at 10:30-11 each night and was just told to take care of momma, so she can take care of those entrusted to her.

I told one of our pastors I just "felt" like it was time to get our faith in a better place. Lord knows my husbands struggles watching our son suffer all these years. He's in a better place now with that. Gods placed some awesome people in his life. :) just fyi. I began weighing what was most important in life and spending a little more time with my kiddos than usual. Letting house chores sit a little longer, and Andrew and I have had a lot more play time in, time outside, and the night before we were admitted I just wanted to be with him. I had plenty of other responsibilities, final exams, and research papers due, but I just felt the need to go outside this night and swing. We lit the torches and began to swing and he serenaded me with twinkle, twinkle little star. :) The last week Andrew has really been having a hard time catching his breath or he would just start deep and heavy breathing randomly. His hands and feet stayed blue, and his pretty pinkish (as we can get) little lips began staying purple and blue.

Its been two years since any admittance to CHOA so all that began flooding back and the anxiety that comes with it. This time though, God has placed a team of loving church family and pastors and more friends to keep the anxiety at bay. I know how great and good our God is, but its hard to tell the human mind to remain focused on that fact. Thank you Lord for your love and grace and for continuously chasing after me when Im so far from perfect.

The team here knows when we call for an urgent add-on visit that we mean business. We have always maintained well at home when episodes or illnesses start, but this time I just have had the unsettling feeling. I began monitoring him last week with his vitals and watched his heart slowly increase, and his oxygen steadily decrease. I began voicing to show (ok maybe getting a little more panicky)Shaun each time I noticed these spells, and Shaun normally tries to talk me out of my craziness, but this time he began really getting concerned too. No matter what we did, hydrate, keep warm, make him rest...he just wanted to keep staying blue/purple. I told my motherinlaw Tuesday as we walked out to her van that hes just been off and I called to get him in the next day, and well...here we are.

In clinic in his urgent visit we got to see his old inpatient cardiologist Dr. Clabby. She knows us fairly well and can just picked up on our nervousness. She watched him cry the entire time in the appointment, through his echo, and when he finally wore himself out and fell asleep in my arms, she watched his color and picked up his little hand and said, he should have had his color back now. He still looks pretty dusky. I talked to Dr. Sallee, and he and I agree we need to get him admitted and a full work up and a heart cath done. There could be narrowing, some vessel clusters popping up on his lungs (decreased O2), or its just that time for surgery number 3. Shaun was visibly upset at this point and I just watched the anxiety flood his face. Andrew jostled in my arms from sleep and just said, "I hurt" at one point in the visit. His anxiety was HIGH.

Dr. Clabby gave me the look and asked if we came packed for a longer stay. Not prepared, but we had bare essentials, aka a one night stay bag. I rushed that morning out the door 15 mins late, but i was running through the house like mad trying to grab the necessities. Shaun convinced me we would be back so I only grabbed one change of clothes instead of going with my gut...I know for next time now haha

Ive been laying awake since 4AM. Listening to my sweet boy's precious sounds as he sleeps. It never gets easier. Handing him over for procedures, no matter how big or small. He always has a high risk. We know that going in, so I leave it at the Lord's feet. Im hoping we get answers today. No matter how big or small. I just want to know whats next. Your prayers are greatly appreciated. Thanks for letting me vent. This blog is a lifesaver when everyone I know is snoozing. :)

Well this is a blog I didn't think I would be writing at this point (and it's long, sorry), but Andrew is looking so much better now...because he is so much better now! Cardiology and the transplant coordinator wanted to stop by and talk to me today about Andrew's mystery echo he had 2 days ago that we couldn't get anyone to tell us about.

Andrew's heart has significantly improved...meaning improved so much that they are moving him to status 7 on the transplant list, meaning he is currently temporarily inactive. They said they don't know why or how, but his heart is in better shape now then it was when they discharged us after surgery in December. They also said that his heart was functioning in two different rhythms in different parts then, and now it's synchronized and functioning all together (one rhythm). He has regained almost full motion in his right side (just a little slow on the hand grasping, but he's doing it and getting stronger every day since his stroke...5 days ago!!) Five days ago they didn't know if and when he would regain that strength back...

They didn't have many answers for why it's dramatically changed now, but God had different plans for Andrew…That's the only explanation. Medically, there isn't one. They're stumped. It was so poor before that he said it was doing nothing on it's own, no squeezing, and had no room to get worse. He just smiled and said this is very good for Andrew because a transplant for him is very high risk at this time and we want to keep his own heart as long as we can, get him HOME, and get him stronger! Yes, HOME!! What seemed so distant before, is now possibly in the next few weeks!! God is good, and only God could give our sweet Andrew this miracle! He is not being set off radar, just status changed on the transplant list and if needed he would go right back on to critical and right back where he was with the time he waited already.

His guess today was the common cold and tummy virus really hit his heart and that's all he could come up with. They've not seen it where they bounce back so quickly like that often, if ever before. Today I have to report that he absolutely melted my heart and I probably had the biggest smile on my face but he was happily playing and smiling at me and his nurses. He was talking to us again and sticking out his tongue. My sweet Andrew was back, limb strength and all.

I walked away crying and felt God's love so deep in my heart that it was almost overwhelming. Saturday night after I watched seizure episode after seizure type episode I begged God to take them from my son. It was crushing my heart. I never know what God has laid out in the future for us… I do know that His will, will always be done either way regardless. No matter what I want in this lifetime. So I continued in fervent prayer and I know that so many others have covered my sweet boy in prayer too. I just wasn’t ready for the outlook we were facing…
 
2 days later he had the new echo done....2 days after that here I sit writing that they can't figure out how his heart improved so quickly and so much....but I know that it's because we still serve a merciful and loving God. His heart is not healed 100%, but it is healed enough that it will buy him some time until transplant or his next major surgery. It is healed enough that we can possibly be going home under one roof again in a few weeks with all of our children and this nightmare be a thing of the past for a while.

Andrew is not out in the clear right now. He will always stay "listed" and the notes for "Severe heart failure" for all of this are there, so he would be closely monitored if they get him off the milrinone and doing well enough to go home. Even then he would be monitored closely at home. The plan for now is to get him up to full feeds and tolerating those this week and Monday regrouping and seeing where he's at and then hopefully trying to wean milrinone to off and him maintaining this level of function to get home. If he cannot tolerate it then he would go right back on the active critical status and continue waiting because he would be listed as medication dependent to live. Either way we still have a very long journey ahead of us, and transplant somewhere in his future. It's just hopefully being deferred a little while longer. Andrew had 2 major surgeries in one in December and needs the time to gain strength and size back. His stroke he's had would also make it very high risk to experience a worse stroke on bypass in surgery if he got his heart this soon too. Blessings all around, and can't thank you all enough for your prayers. God can still step in if He has another plan in life for you, no matter what anyone else says. I’m thankful it wasn’t my son’s time yet…


Psalm 73:26

26 My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.

Andrew's verse ♡

Andrew has been followed by Neurology in the CICU for several days now. He wore an EEG for 48 hours with no abnormal brainwaves. They gave him the all clear to move to stepdown yesterday. Once in his room he stayed fairly aggitated like he had been for a while now. The previous 3 days were a nightmare. he had been having episodes where he would stare off and apnea spells. he would hold his breath for a good 5-7 seconds then start irratic breathing after each episode. He was rushed to CICU and monitored closely and they weren't seeing any episodes. I went in and stood over him the next day and noticed the breathing spells again, but no stare this time. I brought it to their attention and all doctors laid eyes on him and saw it and called the neurologists in.

Once they got in they could see the screen by his bedside and it wasn't showing any abnormal activity. They ruled out seizures and took him off the EEG and got him moved over after a swallow study. 

I woke up this morning, 22nd, and his nurse was doing her usual assessment at shift change and I stood by his bed and she noticed he wasn't moving his right leg or arm at all. My heart dropped. :( I had a weird feeling all night and stood over his bed praying over him off and on all night. Now I really knew something wasn't right. He was kicking like crazy with the left leg and swinging that left arm, but nothing on the other side. The nurse kept picking up his leg and arm and they kept flopping right back down. I just wanted to cry, because my poor baby boy has been through enough, and at this point...we have too! I just want to take it all away from him. Breaks my momma heart. :(

He was rushed down to CT and they took his second scan in the past few days and this time a small clot showed up in the left side of his brain.

In morning rounds they dropped the dreaded word on me and it hit like a ton of bricks..."stroke". I'm thinking, hasn't he been through enough already?! Of course nothing an upset mind and momma could fix, so I have looked for positives in his day today. For instance, his face doesn't seem to be affected. He was slowly starting to make movements with his right arm, and I have never been more excited in my life to see my sweet baby's arm move. I literally cried!

He will now see neurology, hematology, physical, occupational, and speech therapies, cardiology,  and transplant team here. Whew! We will have PT and OT 5 days a week and hopefully get his right side stronger again. Just another set back, but he has proven at what a fighter he is!

He was also officially listed on the transplant list (UNOS) yesterday, so the nerve racking count down is on.

We are going into our third week home from the hospital and I have to say I was starting to feel a little better about Andrew's situation and then his cardiologist appointment last week one of his cardiologist said that Andrew's aorta is starting to narrow. It's natural scarring from the surgery and something they look for, but enough that his cardiologist said it was a little worrisome for her, so she wants to check it every week via ultrasound now. It's narrowed more since his surgery and since we left the hospital. They would have to move his heart cath sooner and go in and balloon that back open if it continues to narrow.

I can't really put into words the amount of responsibility, stress, and worry that was thrown on my shoulders (and my husbands!) when we found out we were having a heart baby. I love Andrew more than anything in this world and would never change him for anything (unless I could completely take this nasty CHD away, I would!) I wont lie, it terrifies me sometimes that I am the one responsible to keep him thriving every day... aka alive. He gets his medications twice a day, feeds every three hours, and anytime he throws up and gets strangled and all that other stuff it's me every one runs to make sure he's okay. Which God knew I could do it and that's why we were blessed with this miracle baby! :) I know I can do it because I'm doing it, it's just a lot of work some days!

It's hard enough with a regular newborn, but throwing in the...does he look blue today? Is he pinking up enough after his bath or crying spells? THEN the oh no he's crying, I've got to get him calmed down asap so he doesn't turn blue/purple too long or get too worked up. :( Does he feel warm or running a fever? Has he thrown up twice today? Is he breathing too hard or show labored breathing signs? Do I have his NG tube placement right or has it floated around to his lungs? (Man, I really dont want fluid to build up around his lungs again!) Man, he threw up after his meds, I hope his aspirin stayed in his system to keep the shunt clot free. Oh no he's gagging again is it reflux or is he about to get strangled and possibly aspirate his feeds? And WAITING for that one poop a day like it's Christmas because he was up crying all night long trying to push and grunting and he literally just wears himself out and falls asleep trying to go, shortly wakened to try again. With all of that I'm up every 2 hours (no matter what I'm doing) around the clock 24/7 tending to Andrew's needs and way to often in between. He definitely keeps me on my toes. Of course I may be over paranoid, but one mess up on my part and he can be heading into trouble fast. :( Every day I wake up I'm super ecstatic that we're one day closer to his next surgery. After that one I know we will be no where near out of the woods yet, but the "set up" (as his surgeon calls it) will be more stable and out of this critical setup we're in now. Hence why they wait so long between the second and third surgery, because it's a lot better setup on their little bodies and blood flow/circulation etc.

I can't help but wonder if the other heart families and moms feel as overwhelmed as I do some days? I swear if it wasn't for God giving me strength some days I would have gone crazy by now. :/ I don't mean to complain because I know some sweet little babies and children that lost their battle all too soon to HLHS and other CHD's and their parents would love to have those worries back, but I am literally on pins and needles every day, even at night time. There's no "off switch". It's pitch dark in our room at night and any little sound or reflux gag, or throw up spell it sends me into a mini panic and then I'm sitting up with him for half an hour or more making sure he's okay. :(  Everyone and other heart mommas say it gets easier and I'm really hoping and praying for that point, because right now I feel like I'm constantly going, constantly worrying, and I dont know if that will ever really go away...

He is having these three major open heart surgeries in his life, but it doesn't really "fix" the problem. He has and always will have half a heart. It's just being modified so that he can live. That's hard for me to swallow sometimes. (Sorry for my rant, I'm just having a rough past few days and wish more than anything I could take this from him.) CHD is a horrible thing, and I wish there was more I could do for those around us who suffer from it. These kids are truly the biggest heroes and fighters I've ever seen in my life. CHD has forever changed mine and my family's lives. My older two daughters understand that something is majorly wrong with their brother and my oldest especially has been on pins and needles probably just about as bad as I have. She's a good little momma hen! ;)

On another note...My son is only going on 7 weeks old this next Monday and has been hospitalized for the majority of his life so far, an ER visit, 2 ambulance rides and a med flight, and then open heart surgery at only 3 days old...3 days old! That's when they are normally cutting you loose to go home and enjoy your newborn at home and relax and have a big welcome home with family. Most of you carry around a diaper bag and car seat with your babies, I'm carrying his diaper bag, car seat, feeding pump equipment, medications, and a cardiac handbook/ paperwork from most recent visits, and bag packed in case he for some reason has an emergency. So yeah, life has been an adjustment and we're still "learning".  I am now a heart mom, we are a heart family...this is our new "normal". We just have to find our groove.

Now I will say this, because no one gives my husband enough credit that he actually deserves sometimes (including me!) He is stepping into a management position of a company with over 150 employees literally as soon as we got to come home, and has to "fix" ALL the screwups from the previous manager, he's going to school, and when he gets home he still makes time for the kids and me and makes sure to help with Andrew plenty. He even gives me a night out of the weekend where he takes over the night shift with Andrew to let me catch up on some sleep. On top of all of this we are stepping into the home buying process as of this past week. (Ahh!) I know he's uber stressed and busy lately, but I am still so very proud of him! We kind of got thrown into all of this and he's carrying us right on through it all. We couldn't do this without you babe!

Over the last ten years we've been together we have developed this mentality of, "That's all you got?!?!!". OR we just buckle down and embrace the ride day by day pushing each other forward and encouraging one another. That's all you can do sometimes. You are your spouse's biggest motivator and cheer leader. We may not have had our groove and everything where it should be when we first got married/together, but over the years we have become quite the team! <3

Anyway, we will go back in late October for his first heart cath to get an idea on his next surgery. Which should be around November of this year if all looks well. NOT looking forward to another major surgery so soon and handing him over again. Hardest thing I will ever have to do in my life! As for now we're trying our best to enjoy each day we have with our sweet little boy and praying for many more years with him. <3

I haven't updated here in a while. Life has been upside down and so emotionally and physically exhausting since Andrews birth that I've not had a chance to update his blog yet. the day he was born was probably the craziest day of my life. My epidural not working and having ZERO pain meds didn't help either, but seems so petty to me now seeing what my little guys going through now. it is so heart breaking seeing him like this and knowing all I can do is sit by his bedside and let him hold my finger and whisper for God to heal him quickly and to take his pain. As a mother we are supposed to be able to fix any boo boos with a kiss and a smile and "all better"...That's one of the hardest parts of this for me.

He's actually done fairly well since surgery. No real surprises. just the common concerns after such a major surgery. His swelling is down a ton and they plan on closing him at some point tomorrow. Then weaning meds and the ventilator (which I can't wait see go!) He HATES the ventilator. :(

We came in this mornjng, his swelling was down and they said they completely stopped one of his meds (dopamine) and I was happy because that's progress, but shortly after arriving and seeing he was awake awake and responding to everything my mood quickly changed. I started asking Shaun if he was supposed to be this alert and of course we expressed our concerns right away with his nurse and she said oh nooooo. He's too awake. So she gave him a round of medicine and he just sat wide eyed looking into my eyes and squeezing my finger for the longest until he finally started drifting back to sleep. when he's squirmy and red faced we knew he was hurting. :( This killed me today. So I stayed out the rest of the day (I'm already weepy anyway) and let him rest. Shaun said he was good this evening and sleeping away, so that made me feel better.

Then the girls came out to visit us while Nonny and Poppy visited brother. It was so good seeing them after a week. Again I've been a crybaby and have missed them so much. That's been one of the hardest parts to all of this other than the obvious is having to leave them behind and not able to answer "When are you coming back?" Hugs goodbye at the end of the day are even harder but I am very thankful I got to spend what time I did with them today. We took pictures and played in the butterfly garden and bought them slurpees and brought them back to the Ronald McDonald house to play. Made life feel "normal" again for a little bit. I can't wait to get back home with all my babies under one roof. I've missed them. Not being able to be with Andrew or my girls this past week has KILLED me. I'm sitting idle and that's something any mommy, of now 4, never does. Not to mention the hospital food is way to expensive and tastes horrible! haha I miss cooking! :) I can't wait until home is in view, but for now Andrew needs time to heal and we have all the time he needs.

There is so much love, prayers, and support coming in that we don't know where to start and apologize if we have missed anyone. We are beyond blessed and grateful for everyone that has been a part of Team Andrew or stood behind us through all of this. it's definitely been the hardest thing we've ever had to face in life, but have seen so many here who is way worse off then our son is. CHOA kids are some tough kids! So be thankful for even the darkest points in life or all that you have now because there is someone out there who has it worse than uou. so pray for all and always be thankful no matter the situation. ♡

It feels so weird to have waited so long for something to happen and then finally get to it being only a few days away. I mean things got "real" as soon as I walked out of my very last appointment yesterday. The lady that made copies of my records walked in and said I heard somebody's having a baby! Shaun and I got really quite and I just looked at him then followed with a smile and I'm sure a confused look. Shaun then proceeded to joke about we're having a baby?! (Like he had no idea ha!) I got home and emailed my high risk OB down at Grady and let her know the super awesome news about how much he had grown and she was so ecstatic about his size now. Sibley and the surgeons wanted him as big as possible (39-40 weeks) but he just wasn't having it since he's tried escaping since 37 weeks. He's measuring at 39 weeks size though so overall God is working out all the little things to make things work for him best. I seriously couldn't believe he jumped almost 2 whole pounds in two weeks! Normally people complain about bigger babies, but I can endure a bigger baby if it means he's going to be healthier through surgery. He's going to be our little fighter!

As for now plans are to go in by 6 pm THIS (yeah that made things real haha) Sunday and meet with the anesthesiologist and the NICU and then get me all tucked in and based off the cervical exam my induction will be started between midnight and 4 AM in hopes for a late morning early evening delivery Monday morning. There were two doctors mentioned that will be taking care of me. Sibley will be notified I'm there so that they can get over and get Andrews lines in through his belly and medicine started to keep his holes open in his heart that they need to stay open and then all the other teams that will be there for delivery. So just waiting (sleepless at 3-4 AM now lol) but waiting for Sunday.

We are definitely ready for this chapter of our lives to start and get the initial delivery over with. It feels like our wait for Andrew has been FOREVER!! We were blessed with so many supporters and family and friends to help make this easier on us. I know we haven't even began really and have a long tough road with lots of emotion filled nights ahead of us, but walking into something as major as this with a small army behind you makes standing on your own two feet a little less overwhelming. Sometimes you just need to hear someone say it's going to be "okay"...

Well I'm going to attempt to get some sleep this weekend. The past two days have been a lay awake all night/morning kind of thing for me. Hopefully sleep will come for me soon. Thank you all so much for the love and support for Team Andrew! We couldn't do it without you guys!

This will probably be my last "big" update before we head in to have Andrew! Everyone's beginning to get a little nervous (I've noticed it in grandparents too!) which is to be expected with such a big surgery coming up for a little one. I have also been thinking a lot about this pregnancy. We've been so busy with doctors and tests and hospital stays that it's been hard to sit back and really let it sink in that we're having this precious little boy next week! I know that may seem odd to some because you would think you could focus on a baby while you're pregnant, but all we've really had to focus on was his "heart defect". I remember I told Shaun this past Tuesday when we went to my primary OB that we were getting close. Well when we went in to the appointment and had the dreaded "check" I think his and my eyes both got as big as half dollars when he told me I was already 2 cm dilated and perfectly ready to be induced. We then knew our little boy was really going to be here soon and started thinking about "Andrew", not just the heart defect. Then the reality set in that we were finally getting ready to have our little boy. We walked around and I looked at Shaun and got the "well are you ready?!" Nothing puts you in mommy mode quicker than the doctors telling you your sons starting to make his way into the world already lol I knew my quick loss of sanity and nesting spree this past weekend meant some sort of progress was coming soon lol

Saying that...I have enjoyed all his little kicks and rolls and bumps more and actually preparing for his birth. At first I was so scared and still am about the unknown, but I can't wait to meet him! I had a few issues yesterday and my Grady maternal fetal medicine doctor (fancy for high risk OB) wanted me to go into Erlanger to be monitored just to be on the safe side and found out I'm at 3 cm now and was having sporadic contractions and pains and severe nausea. After I got there and settled for a few hours they slowed down, gave me phenegren, and I got the all clear to go home with orders to stay off my feet as much as possible. So we're all telling Mister Andrew to stay put for one more week for mommy and daddy! lol

Something else I'm completely ecstatic about (given the circumstances) is daddy isn't being short notice deployed this pregnancy a week before I deliver like my third pregnancy, or deployed already like he was my second pregnancy, yay!! I forgot how nervous he gets come close to time for baby. Poor thing jumps in the middle of the night and asks if I'm okay every time I sit up or get up to take a potty break haha! We wont talk about how he drove like mad to the hospital when I went into labor with Maddie and the back hatch on our old jeep flew open going down the road...hahahaha Gotta love him though! ;) Im just ready to get this new chapter in our lives started and glad he's able to share this one with me. It was pretty hard the last two deliveries (although I had some awesome ladies step up and be there by my side throughout delivery when Shaun couldn't be there) when all you want is your spouse because that's your go-to comforter and safe place. I have him now and I can't be more thankful for that.

As for the date....still waiting to hear back from my doctor...but She emailed me and said the 20th yesterday evening. So I will go in that Sunday night and get everything started for my induction and have him hopefully by morning or early afternoon Monday. Sibley argued with her about me coming in at 38 weeks, but she really didn't give them a choice. Andrew's doing well and everything is developed at this point and she is mainly going off my last three deliveries, my frame and build (since I'm petite), and not to mention the progress he's already made trying to get here lol So that's it for now. We are getting everything ready on our end for the long hospital stay and delivery and getting the van ready for the trip. I will let everyone know if anything changes. Keep our little heart warrior in your prayers as his fight is really fixing to begin. I know he is in good hands, but any momma would be nervous

I know I've been a little "quiet" lately on all of our pages for Andrew. I've kind of gone into my own little world and hiding away from reality I guess. With each week it gets closer and closer and the stresses continue to grow for us. I think every single test you can have done has come back with something "out of the ordinary" or needs redone. I have literally just felt like a lab rat he past few months. I have had to do more blood tests then I think I have with all my pregnancies combined, been hospitalized for dehydration and other things for a night, genetics test came back non reportable, had to do the 24 hour urine test for preeclampsia, and just went Monday for an echo on my heart. They spent over an hour looking at my heart this time which was a lot longer than last time. So I'm hoping at tomorrow's specialist visit I will have gotten all my results back from all these tests and not get any kind of bad news. We have been going to 2-3 doctors a week the past month it feels like and have started having to see our specialist weekly now since I'll be 33 weeks this week. I seriously can't believe it's already mid June. Andrew will be here in 5-6 weeks...I hope that life will calm down just long enough to enjoy time with our girls before we have to leave them when we go into the hospital with Andrew.

Something that I tend to do a lot is lay awake and think...ALL the time lately. 3-4 months ago I sat thinking...why me?! Why my little boy?! But...I began to think about the heart God gave me for those with special needs or the "sick". When I was in elementary and middle school I would go down and help in the special education room and talk to and interact with all of these children that were wheelchair bound or had special needs in all various ways. I grew up with best friends with special needs and always felt like their "protector" and friend of normalcy that didn't see them as someone with a special need. I used to sit down and read to my blind friends in the library or work with them on their braille, guided them down the hallways, or helped load the children in wheelchairs on their buses after school.

When my pawpaw was alive we (my sister and I) were called his "little nurses". We would run to the door every day after he would get home from work (cutting trees down etc) and have a big tall glass of ice water and the first aid kid. He had diabetes and other things too so I always helped prepare his medicines and cut his prescriptions/pills in half and place them in each day for him to take. Then a few years down the road he got very sick with cancer and I was helping take care of him everyday with whatever he needed, helping with making his various medicines, and by his side throughout the day while my step-grandmother went to work. I've even been known to stop and help injured animals or stranded animals before too...so I think God has given me a task ahead that He knows I can handle and that He built me for...it's just taken some time to come to terms with my son's diagnosis.

No one wants to see their baby go through what these sweet tough little babies have to go through. I think out of everything and all the feelings I've felt I'm most upset about what I'm going to have to watch our son fight through and know that there's nothing I can do to ease his pain or make him better. Everyone knows a mother's natural instinct is to pick up their hurting child and kiss away "boo boos" and rock and love on their baby until they feel better...I just pray that God gives me the strength to be that strong part of Andrew's recovery and surgeries. I have learned to be strong in everything I face and try to be the strength in bad situations and not let on to too much "emotions" from my part, but with Andrew I can't say that I can stand there and not get upset and cry when I see him after surgery or when I turn him over to the hands of doctors after he's born. That's going to be really hard for me.

I was very blessed with such a supportive husband though. For the past ten years come August my husband has been able to comfort me in a way that no one else ever has been able to. Once God pairs you with that one person on earth that makes you feel safe and like you can face anything that gets thrown your way it doesn't make things seem so "bad". He may not always show his emotions, but I just know him and he knows me and we know when we need each other. I couldn't have been placed with a better person to face this fight with. Our son has a great daddy that displays so much strength and courage when it feels like there's none there at times. We will all get through this together and come out even stronger. That's what we've come to realize with each hardship we've had to face over the years. :)

On a good note, my husband's work is really been a huge blessing with all of this and Andrew's situation. It has been a huge stress worrying if he was going to get his paid time and vacation days and well...all things worked out in our favor and has helped relieve a little of the financial worries.
We have a bunch of other stressful things going on right now outside of medical stuff that we can use some silent prayer requests on. The good Lord knows our needs and I know everything will fall into place in His timing...Better go for now, specialist tomorrow and hoping to find good results from all my testing and that mommy's heart is doing okay too! Please keep the prayers for baby Andrew coming he will be here before we know it!

This is a picture of a baby similar to what we saw and to what our little Andrew will look like after his first Norwood open heart surgery. There were TONS of machines and tubes. It was just so real as soon as we were buzzed through the Cardiac Intensive Care Unit doors and going through the wash your hands to enter, wash your hands to leave, and seeing this huge wide open room and the babies separated by curtains. We had talked about and talked about this place, but seeing where he would be and this poor little baby similar to what he will look like was tough. The nurses in there kept talking about how much fight and strength these little babies have in them though. :)
We started out the day with another fetal echo and checking to make sure there were no changes to Andrew's heart and kind of confirming his diagnosis since the heart has gotten bigger. He still is in the same situation, same diagnosis...but the coarctation part (narrowing of the big artery that pumps blood out was not there this time. It was fine and no narrowing! So one less thing to worry over and one less thing in surgery to have to go in and fix (aside from the normal procedure)!
We talked with a cardiologist we weren't supposed to see today and she was too negative for my taste. She immediately started spouting high mortality rates with HLHS and that even if they have surgery and transplants it's not a permanent fix. She then went immediately into comfort care and went on and on about it and they offer you people and services of those that can talk to you that's been through it... (Comfort Care is just sending your baby home to slowly die on his own without fixing anything). Some people choose this option and it is in no place for me to say anything about that, but my son is coming into this world with a fighting chance and mommy and daddy are going to do any and everything we can to fight right along with him. So we pretty much shut down on her after that. I don't need someone telling me he has the worst CHD there is and all that mess. I'm aware of how serious it is, but I am also aware of how successful surgeries are.
During the Sibley Heart Center Tour we were taken to the floor where he would be until he went home in his own private room. He will have his own crib and there is a couch that turns into a bed and it has a shower in the room. This is where Shaun and I would be able to stay with him at all times and sleep if we want.
In the CICU that I mentioned first no one under 12 (including sisters) will be able to come see him. :( Also no one that is sick or even has a runny nose. Heart babies can get sick VERY easily. Also only 2 visitors at a time in the CICU. We will not be able to stay with him there (sleeping etc) but it is 24/7 access for mom and dad to come in and check on him there. They have a few times that everyone has to clear out (during rounds for confidentiality reasons since the room is one huge open room, but they will come get us when the surgeon or cardiologist come to Andrew and we will get to be a part of that). The expected stay is 7-10 days here (CICU) and then 2-3 weeks in the private room. Of course it will vary for each baby/case.
When he moves to his own room they will be doing constant teaching in there (for Shaun and I) and we will go through a discharge class and be sent home with any and everything we need to know to care for Andrew. The nurse that gave us the tour today said that feeding and getting the right amount of calories and weight gain is the key issue after surgery and before released from the hospital. She also said heart babies have really bad reflux most times. She did say they will have everything we need there for him and we can opt to bring his own things and clothes if we like for a homey feeling. She also said pictures and things can be hung in his room and on the walls in the CICU or the windows of his little bed rather. So we are going to get busy doing some projects for brother since the girls wont be able to see him for the first few weeks once he's in the CICU.
The surgeon was changed today on us, but he has been assigned, so he is the one doing Andrew's procedures. His name is Dr. Kogon. He said getting him through the first surgery is the vigorous part because it's the biggest surgery, but after the first surgery his survival rate goes to 87%. He said they like to say high 90's because that's what they experience there, but they like to say 87 instead.
He said after his first surgery he's still going to be in a very fragile stage. The second procedure is expected around 6 months and the third open heart surgery is around 3 years of age. After the first procedure the concerns could be complications from surgery (the shunt put in giving or something clogging, or since the right side does all the work for both sides of the heart since the left side isn't working or there that the right side after surgery could pump too little or too much to the lungs or to the body. They keep a close eye on them though and so will we and we will be well educated on what to look for at home.

SO ... A lot to take in, but it feels better to have a plan started. We go back in 5-6 weeks (34 weeks gestation for one last echo and then a confirmed/planned induction down at Grady in one of the last two weeks of July, or earlier if they think he needs surgery or whatever immediately). The only concern they really have with HLHS babies before due date time or induction time is the main hole that's open that they need to stay open getting smaller and right now his looks good.  That's all for now. I'm wore out and have not been home since Wednesday morning really. Keep praying for our little Andrew! Thank you

Life is starting to become pretty scary and emotional for us both right now (Shaun and me). Classes have stopped for me, we go to tour the Sibley Heart center in two weeks, the kids are out of school for the summer soon (which I've dreaded summer because that's when Andrew will make his arrival), and the third trimester is setting in. My 4D ultrasound is in 2 weeks...that means I am quickly nearing my 30 week point. It seems like this pregnancy has been a blur because we literally have been bouncing between tons of different doctors, doctor's offices, and all kinds of tests and ultrasounds. It seems to be speeding this up because we are seen so frequently.

On the plus side though...Shaun will be by my side though this labor and delivery. This might be a scary delivery for me (and him too I'm sure), but when he's with me there's just this comfort and peace he gives me that I can't get from anybody else. Just like when I've had a horrible day or my emotions are running on high (which they've been doing a lot lately) he can come home and wrap his arms around me and I completely forget about everything around me and that's going on.

We drove by CHOA a few weeks ago when we were in Atlanta to see where we would be spending the following weeks after Andrew's arrival and it felt so weird. Hard to explain, but I NEVER thought I would have to face this kind of thing one day. I had no idea that 10 years ago when I looked into Shaun's big beautiful blue eyes and his sweet ear to ear grin that we would come to face this with one of our children one day. Everyone dreams of having "the perfect life" when they get married and have children...but hey this is the life God has chosen for us and through every single hard time we've gone through...it's kind of been preparing me for this upcoming moment of my life.

We lose people that are so close to us and don't quite understand why, Shaun's missed the last two births of our children (which I thought that was the hardest thing I'd face at the time) and we've had more than our share of bad luck...but some how God still gives us hope and plenty of reason to smile each and every day. God gives me a smile every time Kaitlin kisses her brother (my belly) every single day (morning and anytime she has to tell me goodbye), when Maddie hugs me and spends time saying her special goodbyes and pats to her baby brother before she leaves for school, when my husband's Iron man alarm goes off at 3:30 in the morning and you can't help but just smile no matter what time it is :), when Andrew rolls and kicks and lets his mommy know he's no different than any of my other pregnancies...he's still growing, he still has a strong heart beat, his constant kicking and pushing are just little reminders that God made Andrew for a reason. He has a purpose in life and it's not fair for any of us to take that from him before he gets here. He's just going to have a little bit rougher of a start, but he's going to be a fighter and he's going to make his mark on this world one day! All of these sweet little babies that get here with CHD's are fighters. Every last one of them.

I know my son will touch the lives of all those around him. I know that I will cherish every last second I have with him, the times I get to hold him (when we are able) and all those little things we take for granted with our children...they are going to mean that much more to me. I can't wait to be thrown up on and to spend endless hours of each night watching over him, making sure all of his machines and stats are right...because that's what any loving and caring mom would do for their child. We're there when they need us, no matter what I have to sacrifice...he will know that mommy and daddy are there to fight right along with him with every last ounce in us.

Attitude gives your situation strength, your baby strength, those that may be struggling with his situation strength...but most of all it gives hope! Faith and hope and the good Lord is what has carried me through every single hard time in my life. If you dont have God in your life as your number one comforter, than of course there is going to be room for doubt, for negativity, and the overall mental attitude that breaks others down. People may not realize it, but your actions and attitude speak louder than words...

My son is coming into this world a fighter, bigger than any MMA fighter out there!  :) I am going to stand behind Andrew 150% because that's what my job is to do in life. I am researching, I am watching every video or movie I can get my hands on, and I'm "fighting" to get HLHS awareness out there. Right now that's all I can do, but as soon as he gets here then it's "ding ding" mommy's going into beast mode! haha! As medicine and technology advances outcomes are getting better and better and we were surprised to find more positivity from the actual doctors themselves then all the garbage we've been reading on the internet. Most of it is outdated and just plain negative. It's enough to put anyone in a downward tail spin! So I'm pushing through with the now and Andrew's case. They are all different.

If I could have one request is for those of you to pray for our sweet Andrew, pray for all the sweet babies who are fighting or soon to begin their fight in this world, and also pray for those families that have lost their little babies to HLHS and CHD's. This is a very serious diagnosis with so many different outcomes and issues that stem from it, so any and every prayer (big or small) is greatly appreciated.


King James Bible
And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.
-Matthew 17:20

Just wanted to post a quick update about how our specialist and OB visit went today... Two appointments in one day too might I add! We saw Dr. Adair at the ROC today (specialist) and he was hilarious. I liked him much better than our last visit. He helped lighten the mood a lot. It turns out we will get to see Andrew EVERY time we go to the ROC so they can keep track of measurements, his heart, and stuff like that. He's 2 oz away from 2 lbs at 26 weeks! He's going to be a good size when he gets here I'm hoping. All of his measurements are on track (so they don't think he has any kind of genetics issues) which I took the genetics blood test (not the amniocentesis one)  and will get those results within 10 days. He told us to go directly to Erlanger if I have any issues and Erlanger only. That way they can get me flown out to Atlanta (which we kind of expected that already). The only thing that's really new is they have me counting his movements and kicks EVERY day in a 2 hour period after breakfast and a two hour period after dinner. I have to get 10 movements in both those 2 hour time frames or I have to go in to the hospital to check on Andrew. So now I'm keeping a log of every movement up to 10X2 in those two time periods.  The reason for this is he said sometimes as they get bigger their movements start getting weaker and weaker and slowing down when they have HLHS and sometimes can cause heart failure in the womb and we definitely don't want that, so I'm counting away at all his movements. Lucky for me I got a super active little booger ;). The specialist will see us again in 3 weeks then as time gets closer for him to get here (38 weeks) I will be going every week for closer monitoring. My heart rate was still high today at both visits (130+ resting). :/

As for my regular OB (Dr. Anderson) he said everything looks good as can be. My BP wasn't high this time and all my bloodwork for them looked good and came back in the clear that I had done last time. He had just gotten caught up in the loop with my paperwork from the specialist and Grady and felt so bad about our situation. He said when my paperwork came in and across his desk that a movie had come to mind and he had thought of us. He took me to his office and spent a good 10 minutes trying to find this movie that was on Netflix for Shaun and I to watch that we could relate to. "Something that God made". We see him in 3 weeks again too. TONS of appointments! PS Sugar test is next visit....Yuck!

I know that everyone has been waiting on our update after today. So much to really take in and process... We saw 5 different doctors in our visit today. Lots of questions did get answered though, so that made me feel a little better. Little Andrew’s heart is in fact HLHS (which we knew it was) and they gave us the specifics of his diagnosis. He has mitral atresia, aortic atresia, and coarctation. The left side is very small and the mitral and aortic valve in the left side of the heart never even formed, they’re not there. That side is not able to really do anything. The coarctation is where the aorta valve that sends out blood to the body is also narrow in one part and it has to be fixed as well. They have three sizes as far as severity goes when it comes to enlargement on the right side because of the HLHS, and his is moderate. The cardiologist said it wasn’t the most severe (large) but it wasn’t the best (small), he’s in the middle and that’s to be expected with this diagnosis.

I will be seeing little Andrew sooner than I planned or thought on. They are inducing me at 38 (Around July 21st) weeks or sooner if the following appointments bring up any concerns with Andrew. As soon as he gets here they will stabilize him (have a hospital room full of doctors) and then let us see him real quick before he heads up to NICU. I’m not sure if this means if I can hold him or not, but I will take it either way. He will be stabilized and waiting for up to a week before his first surgery but will have a tube through his belly button (it’s already open from the umbilical cord) and will push medicines through there to keep the two holes present in the womb open (this is what keeps his blood flow actually flowing through the body, and also be a drain point if needed I believe they said. They will run tests, ultrasounds and whatever he needs as he’s being assessed once he gets here (ventilators if he needs help breathing etc.) feeding tube for sure. He will also come home with a feeding tube through his nose for a while after released from the hospital. There are some cases where these babies are born there (Grady) and then rushed by ambulance after stabilized to Emory to b worked on ASAP. So it’s really a wait and see game on how severe his case is after he gets here.

The cardiologist did tell us that once he has the surgery that after he’s going to get and be pretty ill. He said it is a very serious surgery and lots of "things"  the cases and each HLHS baby are different, but to be done. His little body is going to be pretty rough looking after surgery, but should heal over time pretty good. He said he didn't like giving percentage rates because they vary with the severity of each case. BUT the average success/survival rate is about 90% since they are such a good hospital/team. The goal after surgery is to keep infections away, make sure there are no complications from the surgery, and that he is able to get weight put on after surgery. Weight gain is the thing with HLHS babies and the length of time and size between procedures. He said Andrew’s stay should be expected to be a month. Longer if need be, but that’s what his situation is looking like now. After he’s released to go home and looking better he will see a cardiologist every week until the series of surgeries are done.

On the other hand we got one of the best doctors to work on him at Emory and Emory is rated #4 in the whole country when it comes to pediatric cardiology surgery. So that was good news to me and peace of mind. I had already looked at and hoped for this doctor from the beginning.  If I go into labor early I will be assessed and if it will be enough time to fly me out by helicopter then that’s what they’re doing to get me to Grady/Emory ASAP. If I have him they will stabilize him and then get us flown out there.

We go back in a month and meet everyone else, tour both hospitals, and get all info on the logistics of everything. We meet the surgeon and the surgical team and any other doctors that we didn’t get to meet today. They are going to do an Echocardiogram on my heart and make sure my heart can take the delivery stress since my hr is staying high and my blood pressure was high last time. If not, then they will take him by c-section more than likely…so lots to take in, but we are finally getting a plan together. Life will never be the same after this point for our family.

I told a story, it looks like I’m updating before my appointment in a few weeks. First, I want to talk about what my sweet girls have been doing. Our girls keep asking us to eat out, go to the movies, or “fun” places and we reply back that we have to save money for brother because brother is going to cost us a lot of money soon. (Uncertainty of how long and cost of ATL stay if we can’t get into one of the Ronald McDonald houses and food and necessities etc…just a lot of concern and unknowns…STRESS!) Well the girls spent one day looking over the entire house for probably a good hour and started collecting money in a jar for brother. I thought it was the sweetest thing (because everyone knows that when a kid finds money it goes right to their pocket/collection for themselves.) Even the smallest of gestures can put a smile on your face when coming from such a sweet and humble heart.

We’ve also began the process of trying to explain brother’s heart condition to the girls. It’s not easy trying to answer all the questions they have because we just don’t know at this point what’s going to happen. They keep asking when they are going to get to meet brother and if they’ll get to go to the hospital to see him (I don’t even know if Shaun and I will be able to hold him or not after he’s born), so it’s been tough…I think shortly before it’s time for him to get here we are going to either buy something special from sister’s to put with brother in the hospital or have them draw some things for him…something to help them feel closer to him since he’s going to be in the hospital a long time. We’ve shown them the “after surgery” pictures so they will understand what all the wires and tubes and bandages are on their brother…I’m still definitely not ready for that one at all!

Other than that we’re starting to “cope” with brother’s serious heart defect. We definitely couldn’t have come as far as we have without all of our family and friends’ and even strangers’ support. God has given us some wonderful people in our lives for sure! Baby Andrew will have some wonderful big sisters too ;)

I've not updated in a few days. I had my appointment Friday and we were in and out pretty quick. Dr.Anderson said it looks like I'll only see him until I'm 30 weeks, so 2 more times and then should start seeing an OB down in Atlanta, or something along those lines. I'll know more about what's going to happen with baby, appts, and doctors after we see the specialists and get down to Emory to meet with the doctors down there.

Other than that my blood pressure was a little high (140/90) pre-hypertension stage. and my heart rate was up again, but that is probably because I haven't been sleeping very well and staying stressed. Sleep deprivation will do that to you. I have recently bought an e-book copy of Hypoplastic Left Heart Syndrome: A Handbook for Parents. I am trying to get through it before our specialist appointment April 17th, so I know what to ask and am a little more informed on all of this. It's been so overwhelming. Other than that I'm keeping busy with trying to get my current classes finished up and then come May I'll be taking off from school for a little while since I wont be able to complete my in-business 16 week practicum that's required for graduation. When May gets here we'll have about 3 months left before his arrival if he stays in until 39 weeks like hoped for and I'll be preparing for our long hospital stay down in Atlanta. That's all the updates I have for now. It will probably be a few weeks before my next post.