PICC line today

Jack went back under anesthesia today. His IVs just won't hold up and the solution is a PICC line which is a more reliable IV. The PICC line is done in the cath lab and starts in the crease of your arm and stops right above the heart. This way we can be sure Jack is getting the right amount of antibiotic to take care of this infection. They will be discussing later today how much longer Jack will need to be on the antibiotic and it will give us an idea of what day we may be able to come home. Jackson and I are not ready to bring him home yet. We don't want to even play with this infection. Also we want Jack to be feeling a little more comfortable. So we better start getting some smiles!

What a relief!

Surgery went really well yesterday. They took him back at about 2:30pm and put in a couple IV lines because Jack is notorious for loosing them and being a hard stick. On a side note, one of them already went bad this morning!! The surgery lasted about an hour and a half and he was able to be taken off the ventilator in the OR which was great! Dr. Bradley said the infection was the entire length of his incision and some of the cartilage had become infected which caused all the wires holding his sternum to pull through. Dr. Bradley cleaned all the infection he could see out and closed him back up. The infection we knew he had before was coag negative staff (contracted in hospitals and ORs, lovely) and they took additional cultures during surgery, so I'll be interested to see if anything else comes up. He spent last night in the PCICU, we're already on 8D and we will be here until Friday at the earliest. They are going to watch for any signs of infection and are keeping him on a strong course of IV antibiotics (hence the importance of a good IV). I am already seeing a difference in Jack. He seems so much more comfortable than before. I am just praying all the infection is gone! As for Jackson and I, we are hoping we will be home for Christmas. If not Jack will never remember that he spent his first Christmas on 8D. I just want to take home a happy, healthy boy!





And I just had to share this one!



Don't you just want to pinch him!!

Surgery tomorrow

Yes, again we've been pushed to tomorrow. Not too big a deal in our eyes because another sweet baby needed special attention from these amazing surgeons. Jack's scheduled time is 2:30pm.

Jack is such a remarkable baby. He has been a pincushion and had his feeds withheld for hours and made no complaints. His biggest thing is his poor chest hurts when he tries to laugh or if we move him. I hope this surgery will bring our sweet boy some much needed relief.




Mr. Pincushion. Beautiful as ever.

Location:Ashley Ave,Charleston,United States

3rd times the charm?

I sure hope it is! We were discharged Monday from MUSC and readmitted today. His infection site keeps changing and Jack just isn't Jack. So we drove up to the cardiology clinic and it seems either the infection or pressure in his chest (I think from all the crying) or both has caused his sternum to separate. I think it has been like this for quite some time.

Please say a prayer for Jack because he is going back to the OR tomorrow afternoon to clean out any infection and re-close his sternum. I hope this is it because this sweet guy doesn't deserve anymore trouble. I hope the next few years of his life are very pain free and happy!

All this and I can still squeeze a smile out of him every now and then!

We're baaaack.....

Well, back to MUSC that is. We were discharged Wednesday and in my excitement to take my sweet boy home I failed to ask more questions about his fussiness and pain level. The docs had been working hard to manage his pain and I kept thinking maybe it wasn't all pain, maybe it was all the poking and probing. Well once we were home Wednesday evening he was still exceptionally fussy and at timeS inconsolable. I thought maybe getting back into our home routine would help, nope. He cried every hour. Thursday and Thursday night were no different. Friday morning I noticed the bottom section of the strips that hold his incision together looked bubbled up. He had a cardiology appointment that morning so I was glad it showed up before we went. When I unbuckled him in the parking lot I noticed he had either a little blood or brownish substance that had leaked through his clothes right in that spot. I tried not to worry, even though I knew it wasn't a good thing. At the appointment Jack's cardiologist pulled the strips off and a brown ooze began pouring out. Dr. Williams thought it would be ok not to send him back to MUSC and started Jack on some antibiotics and wanted to keep a close eye on it. I was relieved and even more so that the echo of his heart looked great! Well Friday night began very uneventful. Jack seemed to be happy and slept great until about 1am (probably exhausted from the previous nights). At 1 he woke up screaming. It took me an hour to get him calm all of which I paid close attention to his breathing. It seemed like he was having difficulty taking a deep inhale. Once he calmed his breathing sounded normal but slightly rapid. His breathing continued to sound "off" all morning and at 10am I decided something just wasn't right and it was time to make some calls. Fast forward, and here we are. The verdict is the incision infection does not look terrible but he needs a strong course of antibiotics and observation for a few days. They tried for a few hours last night to get an IV for the antibiotics, but Jack has the tiniest veins. So they have given up on that and he has to get shots everyday we are here. They said the shots hurt because the serum is really thick. Poor guy, as if he isn't in enough pain already. I hope to take home a super happy healed boy by mid week! We will see what the docs say, but I know they will take care of us here!

Some pictures too!

Oh yes, Scout (the green dog) came to surgery too. Wouldn't leave home without him! Best toy ever!

Post Op Day 4

So sorry for my HUGE posting delay. I wrote a post on Friday and it was accidentally deleted. I have been too tired or busy since to write up a new one. Well, we are on 8D! This experience has gone much more quickly than the first but has been just as hard if not harder. I will give you a little recap of what has been happening. Post Op Day 1: Jack was taken off the ventilator. I was so excited but it made me realize how much pain he was in because he could actually express it. He cried, hard for the first 15 minutes or so until he was given some pain meds and something to calm down. That was tough. He did not feel good. Post Op Day 2: Finally started feeds. I think he was hungry wouldn't you say? Feeds were started at 5cc an hour! So slow! They were progressed 5cc every 3 hours. As you can imagine I am so nervous when it comes to feeding ever since all his tummy trouble. I do not want to go through that again, especially with an open chest. Post Op Day 3: We reached full continuous feed volume and he did great! The kicked us out of the PCICU and pulled his RA line, arterial lines and chest tube! I was very surprised about the chest tube! but it had not been draining. That is awesome because it says a lot about our drainage on the next surgery! And today. We've made it to our room and even though the nurses will be in and out all night, I think I am going to sleep great now that I can see him at all times! He drank about an ounce from a bottle, but I am so happy he is even drinking from one! The g tube has been such a blessing eventhough I have cursed it so many times! I truly am thankful for it because it has sped things along. I still haven't gotten a smile and I know that is because of the headaches. I was told he would have headaches but they are so, so, so terrible. He will wake up from a peaceful sleep screaming, kicking and rubbing his head. Poor guy. The nurses have told me Jack is better than most of the babies, and I could not imagine it being worse! So we will probably be heading home Wednesday or Thursday!(I hope.) They like for the pain to be managed first. In my unprofessional opinion, we are not there yet. I have to get my smile! Maybe tomorrow!

It's over!

At last! Dr. Bradley just came and said Jack's surgery went great! We will be seeing him in the PCICU in about 30 minutes and I am itching just to get my eyes on him again!!

I was so relieved when I saw Dr. Bradley smile during our surgery debrief. I just had to hug that man. I know it isn't the first time a mom has hugged him for helping their baby. :)

Surgery day

We just left our sweet boy. He was smiling and laughing this morning, like always. We will keep updating throughout the day. It will be a while before he is finished.

Our prayer:
Dear Lord, please keep our sweet baby safe. Please be with Dr. Bradley, keep his mind clear and his hands steady. Please be with all the doctors and nurses that will care for him today and help them to do their best. Please send a team of Angels to watch over him, be with him and comfort him. Thank you for giving us such a sweet blessing. Amen.





Ready for his big day!

Surgery Thursday

So there has been a slight change in plans. There was an emergency in the PCICU and one of those babes needs operated on. So Jack is being pushed to Thursday, 7:30 am.

I was in pre-op today until after 6pm. My head has been spinning with all the details of the days ahead. The outlook is very good and there are a few things we will be looking out for. One, a fatty drainage around the heart that would be treated with a special diet. The other is part of Jack's anatomy that could cause him to have a heart attack, but they do not expect this outcome. Just like anything they have to tell you the worst scenario. Other facts I learned were he may be irritable from a headache caused by the change in the way the blood flows in his head and he will actually be bluish until he heals. Sorry I am so vague on details. There is just so much and I am still trying to put it all in order! I can answer questions, though. Please let me know any specific questions.

I could kick myself for not taking a picture of him today. He has so much personality. He only slept a max of 30 minutes the whole time we were there! He did not want to miss greeting anyone who walked by. His favorite was the attending who was barley able to wash her hands because he was saying what sounded like "hey" over and over. When she acknowledged him he would just laugh! It was absolutely precious!

Thank you all so, so much for your support and prayers. We are so lucky for each and every one of you!

SURGERY WEDNESDAY

Nope, I don't mean next Wednesday. I mean this one, as in day after tomorrow. November 30th. I got a phone call at about 7pm and on the other end was one of those voices you never forget. He didn't even need to tell me who he was, it was Dr. Bradley. He presented us with the date and the other option was to wait until sometime in January, he wasn't sure when he could do it. He strongly urged us to go forward with it because the shunt won't last forever. We decided if that was what was best for Jack, then we would do it. So we are headed down tomorrow for his preliminary work up and surgery will be Wednesday morning. I don't have many details yet, and about a thousand questions so I will let you all know more tomorrow.

Until then, please pray.

Cath and tummy results!

So after my post last week I got an email from GI at MUSC stating that they decided there were less invasive tests they could conduct before they scoped him. Jackson and I were really disappointed because we felt that is where we will ultimately end up, but maybe not.

Monday we headed to MUSC for a GI appointment. The nurse practitioner for peds cardiology asked if she could go with us to see what they had to say, and I am so happy I told her yes! We came up with the game plan that Jack would be admitted to 8D after the cath and Wednesday morning a gastric empty scan would be conducted to determine if his stomach emptied into his intestine properly. If it did they would place an impedance probe for 24 hours to see if he was refluxing above all the reflux meds.

This morning I watched the gastric empty scan. They filled his belly with only 2 ounces. I usually feed him 2.5-3. For 1 hour he laid in an MRI machine while pictures were taken as his stomach emptied. The techs couldn't tell me results but it sure looked to me like there was a lot left. About an hour later they called with the results and after the hour only 1 ounce had made it to the intestine. After all the pain I am praying this is truly the answer. It is treated with a low dose of an antibiotic whose side effect is helping the stomach empty more quickly. They said I should see significant difference in a week. The technical term is gastroparesis and after reading the symptoms it is the only thing that does fit what's going on perfectly. Hoping this is really it!

Ok now the cath. It went great which is a good thing and a sad thing. The pressures in his heart and his size is ideal for surgery. They are putting in a surgery request for 6-8 weeks and will be calling us with dates in about 2 weeks. That is so soon. Dr. Ryan Butts, also an Irmo native, drew me another one of his lovely pictures of a heart to explain exactly what happens for the Glenn procedure. I'll go into those details later.

This is Jack coming off his sedation. He was pretty funny which surprised me because I thought he would be upset.



I am so happy we got some GI answers and to know that is heart is doing so well! Thanks for all your prayers. God is listening and I know he is watching over this sweet boy! My Jack of Heart!

Location:County Road S-36-28,Peak,United States

We need some prayer warriors

I cannot tell you how crazy life has been. We have had so much going on it hurts sometimes. I wish we could get to some sort of normalcy, and I am told it will happen, but I feel like it is never coming.

So to start his third month we ended up in the ER. Fortunately it had nothing to do with his heart but of course, that stupid g tube. I seriously thought it was infected. It was so red and unfortunately still is. I have no idea what changed but it will not go back to being flesh colored. So anyways, we were sent to the ER to get IV antibiotics. Well after all the ER docs treated us like we had "done something to it" they finally called the pediatric surgeon who agreed it was NOT normal for it to look the way it did and he agreed we had not tampered with it, prescribed some antibiotics and wanted us to follow up with him or the ped surgeon at MUSC. I chose to go to MUSC and I am sooo happy I did. The visit spawned all kinds of things. First we went and saw one of our favorite OTs. She worked with Jack for a bit and we told her what had been going on with Jack's g tube, his constant screaming while eating and the white tongue he had for so long. She immediately began calling people to come and look at him. I was so happy. I really feel that everyone at MUSC is so helpful. So we started to get on the right track for some answers. Peds surgery came down and looked at the g tube. They decided to go ahead and do a g tube study just to make sure it was in the right place and not blocking the the intestine. Everything looked great so that was cleared from the eating issues. The following week we had a follow up with peds surgery. They thought, just as I had, that the white tongue could possibly be thrush. So we treated it. Unfortunately I knew after 7 days of treatment it was not thrush. So I called his pediatrician and asked if he would refer him to a GI at MUSC because in Columbia they were not helpful with entertaining my ideas to discover what the eating issue was. In addition, no matter how many times I explained it they were so dense on his heart. They aren't the only ones though. I am so shocked sometimes how people in the medical profession know so little about the heart. I know more than most!

So, MUSC GI was the best place we could have gone. When the doctor came in the room I didn't have to tell the whole story again. They had read his chart and told me what had been going on! I think my chin was on the floor. They first checked his stool for blood and sure enough! So they switched him to Neocate. I was so happy thinking "Finally THE answer." I typically try not to get too excited because most things work for a few days then quit. Well I have seen some changes. The white on his tongue is almost gone! He is recovering sooner after eating but it can still be an hour before he is up to anything, which is delaying some of his therapy. And he is not throwing up as much throwing up but it can be an hour later which makes me thing something is wrong with his intestine. Sigh.

So the prayers we need. He is having a heart cath Tuesday, November 8th. I am a little nervous about what they may find but it will tell us how his heart is doing. They will base the next surgery date from this cath. We may or may not have an overnight stay depending if they have to make any repairs. The letter they sent me also said they may have to stay "depending on the severity of the heart defect" and I would say Jack qualifies in that category. We are also working to coordinate scoping him that day while he is under the cardiac anesthesia. Please pray that his heart is ok and that we find some answers to his tummy issues!

Thank you so much for all your support! I am going to try to update more frequently. I am so happy that many of you have been asking me about the next update! Keep on me!

Happy 5 Months Jack!

November 1 this guy was 5 months old!












Weighing in at a whopping 14 pounds 10 ounces! He really starts to feel heavier after about 5 minutes of holding. He is a happy little boy despite all his tummy troubles and has started mocking our sounds and facial expressions. My favorites, one is we pucker our lips at one another and say "hmmm" then I start laughing and he laughs too. The other is I ask if he is huuuuuungry, and he will growl it back to me. He sure thinks his dad is especially funny. Their latest thing is Jackson says "Say Cheeese!" and Jack starts rolling! He is ticklish almost everywhere and I am sure he get tired of us tickling him all the time just to hear him laugh.

We've been trying out sippy cups which he seems to like and if you attempt with one don't try to give him the bottle after. He will just get mad at you. Speech therapy has us working with something called a Z Vibe and he hates it! It is to strengthen his oral muscles. I haven't even made it vibrate yet and he cries. We have to do it three times a day so I am sure he will eventually get used to it, I hope. Everything in his hands goes straight to the mouth and his lower gums look white on certain days so I am thinking teething is not too far.

Physical therapy is going great! He hates it but works so hard! We are working on tummy time still, which he despises. I make him do it anyways. The PT and I both agree that once he strengthens that chest he will be crawling. He's got the legs but that big scar is holding him back. So when you do put him down for tummy time he ends up making himself into a tent on his neck. If he could figure out how to get his arm in the right position he would roll over to his back. Rolling back to sides or tummy is no problem, he just gets mad once he gets to his tummy. He will sit for about a second on his own so I am hoping he will be sitting well in about a month.

His favorite toy is his Scout, a green stuffed dog that sings songs using his name and his favorite things. When he is upset all we have to do is let Scout start singing and he stops crying. Needless to say, I know all the songs by heart after all the times I feed him everyday!

He still sleeps in our room. Until we get his tummy issues figured out I am not comfortable with him in the crib. He loves his sleeper though. I clipped some toys on the sides for him and he happily plays until he falls asleep. He has started sucking his thumb too which I think is really sweet. Someone said to me " Oh no, you need to stop that!" I have no intention to. If he is still doing it in a year we will address it then, but for now it is sweet.

Happy 4 Months Jack!

Oh how sweet he is!

Yes, I am a little behind. His four months was October 1st. Sorry Jack!

Three months!

Our sweet boy is three months old! He just gets sweeter and sweeter by the day too. He currently weighs 12 pounds, 13 ounces is 23 inches long and we just moved to his 6 month clothes.




He does something new everyday. He LOVES to talk. Doctors and nurses are very impressed by the way he coos, smiles and jabbers with them. When I am on the phone he will carry on along with my conversation. Perhaps this is one reason everyone who meets him adores him, and as I found out today some people can't wait to meet him! When he smiles it is not only through his mouth but in his eyes. I know, everyone uses their eyes but his expression is so precious. (I may be slightly partial!) I pray every night we will find the answer to his reflux. I get so excited when something seems to be working only for it not to. I will try everything possible to make him comfortable. Feeding is still challenging. We have awesome days where he takes everything from a bottle and other days he just won't do it. Dr. Bonnet says we are ready for solids and I have been working on him getting used to a spoon so maybe that will make him love to eat! We are making big steps on head control and he is close to rolling so I know those will be coming soon. Jack loves toys especially mirrored and talking ones. Sing-a-majigs are on the top! He is taking naps in the crib some days but is still sleeping in our room at night. He is ready to sleep in the crib but until the reflux is under control I like him in arms reach. I look forward to my morning wake up. He lets out a yell and when I look down from the bed he is smiling and kicking his feet. We just adore him and he has filled out hearts with so much love!




It is crazy how three months can go by so slowly. I feel like the day he was born was so long ago. I reflect on everything we have been through all the time and how much it has changed our lives. It has been hard, and I often wonder who it was harder on, us or him. I know he will not remember a minute of this time, but we always will. We went back to MUSC 2 weeks ago for a swallow study, which he passed (this just means he can drink thin liquids). We visited the PCICU and 8D and it was so good to see everyone! They could not get over how big Jack had gotten and he played his usual possum so no one really got to see his sweet personality. The visit was great but it made me realize how soon we will be there again. After talking to the nurse practitioner she predicted, and unfortunately I agree, he will need the Glenn surgery sometime between Thanksgiving and Christmas. He is growing so quickly and in the past week I have noticed more blueness around his mouth. Just one of the signs the time is getting near. The Glenn will keep us at MUSC for 5 to 10 days and I've been told he will come back pink! We will go in November for the heart cath to officially make the determination. I thought the first time was tough, I cannot imagine this time, especially now that we really know him.

Until then I am just going to enjoy and love the heck out of him. I mean, how can you resist this sweet face!

Location:Three months!

Finally sharing...

I finally felt comfortable enough with Jack's bottle feeding to let someone else feed him and who better than daddy! Trust me, it wasn't that I was just being a crazy mom. Jack was just awful at the bottle. Either he would suck so much so quickly that he would choke or he wouldn't suck hard enough to get anything out. The choking was terrifying. If he wasn't getting anything he would be worn out, we would have wasted time and I would have to tube him the full amount. It also takes FOREVER to feed him. A quick feed is 45 minutes. Most feeds last at least an hour- 30 minutes on the bottle, burping (which he never does), then tubing the remainder. Jackson has watched me feed him so many times and I finally felt comfortable that he wasn't going to choke, so I passed it on. The first time I watched, not too closely ;), but I thought it went great! What a relief and Jackson loved doing it too! It is such a huge help. Maybe now I can get to that laundry, or dusting, mopping... Yuck.





Also, some GREAT news! Dr. Bonnett called and the test results for Maple Syrup Urine Disease are negative!! Prayers answered! Now we can move on to enjoying Jack! Also, Dr. Bonnett said I didn't have to wake him up to eat anymore! Guess who slept all night...




This guy! (and me!)

Happy 2 Months Jack!

I cannot believe he is two months old! Honestly, it has been the LONGEST two months of my life. I feel like June 1st was so long ago. I remember each day since he was born so vividly. He is the sweetest baby. He has patience, which I know sounds crazy. When he needs something he lets us know with just a small cry and if we don't respond after a minute he will let another out, like when I am heating his bottle. He coos all the time and loves to talk to anyone who talks sweetly to him or coos back. He loves his baby gym and will play for 30 minutes to an hour on it! He is beginning to smile and I am still not quick enough to catch it with a camera. In all the chaos of the day I almost forgot to take his picture. So here is what I shot!





Here is what we have been up to! It has been a long time since i updated so I will be as brief as possible! We came home Friday, July 8th. Jack slept the whole day and night. When he finally woke he studied the house. It was like he knew he belonged here. We spent the whole weekend just holding and loving on him! No more needles, exams or thermometers. Monday we had our first pediatric and cardiology appointment. He passed both with flying colors! Tuesday he had a follow up hearing screen. He passed the newborn but they wanted to be sure he could hear because downs children are high risk for hearing problems. He failed. I seriously thought I was going to be sick. I just didn't want anything else stacked against Jack. They told us we would be referred to an ENT for further testing. Wednesday we went to a GI doctor Dr. Bonnett (our pediatrician) referred us to watch Jack from a nutritional standpoint. In the office Jack had a dirty diaper that had blood in it! I was happy it happened there and not at home. So I they send me with a sample over to the children's hospital at Richland for some labs. They called me later that day to tell me Jack had colitis from antibiotics they had given him before the G tube surgery. He had to have another antibiotic to treat it. Thursday Dr. Bonnett's nurse called me to tell me they wanted to see Jack on Monday. MUSC had tested his amino acids 3 separate times and they were all abnormal. Monday Dr. Bonnett sent off the test for his amino acids. I began researching amino acid disorders, which Jackson had told me not to, and was terrified. I decided just to try not to worry and wait for the results. That Thursday I noticed Jack had developed thrush so we headed back to the doctor's office. Monday we had another appointment with Dr. Bonnett. He upped his reflux meds because Jack has the worst reflux I have ever seen. He turns red, then purple, while gagging and then it shoots out of every hole in his little face. It is terrible. That evening my phone rang and it was Dr. Bonnett. He asked me to come to his office the next day. Jack's amino acids were still abnormal. Dr. Bonnett said he may have maple syrup urine disease. MSUD is a life threatening metabolic disorder. Jack would alway be on a special diet and when he became sick he would more than likely have to be hospitalized to have IV fluids. MSUD can cause swelling of the brain, coma and death. Tuesday, after battling a flat tire, I went in, and then down to the children's hospital again for the tests. We were told the tests would take 2 weeks. I can find so many beautiful things about all of Jacks other disorders, but not MSUD.
Today we went in for his two month check up. He is doing great and weighs 11 pounds, 1 ounce! We got back the results for the MSUD blood test and they were all normal! Praise the Lord! Now we are waiting on the urine results. We also went to see the ENT today and Jack can hear just fine! The doctor said he doesn't anticipate that Jack will have any hearing difficulty!
So that has been our lives in a nut shell. Other than all our scares he has gotten lots of love and play! He is such a joy and I can't wait to watch him grow! We are so fortunate to know many wonderful photographers! The have helped me lose the feeling that I missed out on so many good pictures since he was born!












Ashley Uhl Photography




Ashley Uhl Photography

Happy 1 Month Jack

Unbelievable that our sweet boy is a five weeks old tomorrow! He is so stinkin' sweet and from what I understand, his skin is ridiculously soft. He has wild hair that is always a total mess when he wakes up, and it honestly fixes best in a mohawk. Every morning he has the cutest five minute stretching session, complete with little grunts. He rarely cries, only when he's gassy, needs a diaper change or gets a bath. He is spoiled and wants to be held often, which is ok because the first two weeks of his life he never was. I am under the impression that he is a mama's boy. Reason is that when Jackson and I take pictures together he thinks it is funny to have the first one be of me smiling and him frowning. Well Jack got him back!





This one is definitely getting framed!

Jack had surgery today to have a G tube placed in his stomach. Feeding is going to take some time. He has the hang of it but can't take near the volume he needs. This will get us home hopefully the end of this week or the beginning of the following week. There he can finish his healing and recovery, and hopefully will take off with the bottle feeds. I know this surgery is painful by his pitiful cries and his overall appearance. They say he should be feeling better in 24 hours.

The memories that I have here are incredible. They are both good and bad. Most of the time I would want to forget about bad things that have happened, but not this time. I want to remember what made my family the way we are. The amazing battle that our son over came. The day we found out he had downs syndrome, because it was hard at the time, and i know it will be a blessing. The experience that made my husband and I closer and love each other more than words could express. Leaving MUSC will be bitter sweet. I am thrilled about going home and it doesn't even feel like it is really going to happen.

There are so many things we will miss. The people. The doctors, nurses and staff have been amazing from labor, delivery, PCICU to 8D. I think I will be lonely at home not having all the nurses to talk to. Sometimes I feel I distract them from their jobs because I talk so much. Many of them have become our friends. I know Jackson will miss the ice machine on 8D. We will miss hearing the phrase "I know, right", our view of the children's atrium, the frozen yogurt and more. I know a lot of that doesn't make sense, but they are all part of our memories.

Thinking back to the beginning of my pregnancy, I remember I often prayed for a "perfect" baby. I realize now "perfect" is so relative. I can also honestly say during this experience we have all had a moment when we have been angry with God about what has happened to Jack. Recently I had gotten away from the hospital to run a few errands. Listening to the radio, a Garth Brooks song came on that brought tears to my eyes and made me realize that what doesn't make sense now, will one day.

"Sometimes I thank God for unanswered prayers. Remember when you're talkin' to the man upstairs. That just because he doesn't answer doesn't mean he don't care. Some of God's greatest gifts are unanswered prayers."

And what a gift we have received.










Yes, his onesie says I am Captain Jack. Charleston appropriate, right? Specially ordered for him by Bodie. She also sent him one that says "my mom is a pirate". Arrrggg! :)

Why us? Why the sweet children?

Two questions Jackson and I frequently ask, still don't understand and will probably never know the answer to. When I look at Jack's sweet face I would do anything to make his defect mine. Nothing could have ever prepared us for this, and trust me, we tried. This experience has not just been the battle of his heart, it is so much more.

The other families who are going through this all have their own ways of dealing. Some are negative and can find something wrong with everything. Some just avoid others, almost have a transparent appearance and won't even crack a smile. Then there are ones who want to talk and share their story, listen to yours and pray for you. Jackson and I fell into the last category and we met several others like us, one family in particular. When we were in the PCICU we were told we needed to meet the Smith family, they were a lot like us. That day finally came and we did have a lot of things in common. We would run into them and they always asked about Jack and we asked about their sweet baby Emerson. We were floor ready about the same time and I had expressed that I was dying to be with Jack and they offered me their place because the didn't mind staying a bit longer in the PCICU. Emerson was almost 3 months and had been to the 8th floor before. She had some complications and had to return. She was a hypoplastic left heart and I have to tell you the left is a beast.

When they saw us on the floor they were so happy for us. We talked about how much our babies slept, their progress and more. On Saturday Jackson had been out in the hall and came back in to tell me they were taking Emerson for a stroller ride and how cute she looked. That evening I walked out to get some ice water and heard her sweet father talking about how they chose her name. They just liked it was how I understood it.

Sunday morning when I woke our room door was open. It looked as though our nurse had left our room in a hurry because all her equipment was left behind. I laid there wondering if she was going to return, waited a bit, then got up to close the door. Shortly after some of our favorite nurses started to stop by and I could tell they had heavy hearts.

See this is what you can never be prepared for. Yes the surgery, the status of your baby changing everyday, the challenges of feeding, the constant worry you cannot prepare for but people tell you about those. They don't tell you about the relationships and loss. We were not prepared to hear that Emerson had passed that morning.

Jackson and I have had such a hard time with this. It made us ask those questions again. Why us- parents who are so loving, responsible- why do they have to go through this. Why them- why does an innocent baby have to hurt, battle for their life. It hurts more than I can describe and I cannot tell you how precious each breath and every heartbeat.

Emerson is an angel now. It brings me back to a story I read while I was pregnant.

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown

Emerson's heart is whole again.

Jack is doing well. He will probably have a minor surgery in the next week or so to put a G tube in his stomach. The feeding is very hard for these babies and it could take months before he can take the volume he needs. When he drinks from the bottle it exhausts him and he falls asleep. It was described to me as running a marathon. It takes a lot of training. The G tube will allow us to work on the feeding at home. Ahhh.... Home.





- Posted using BlogPress from my iPad

Ups and downs

Jack is doing amazing! We are down to only a feeding tube and the leads that let them know his heart rate, respiration rate, and oxygen levels. This is awesome because now we can hold him anytime we like!




We are also floor ready and waiting for a room. We love the PCICU nurses and doctors (best in the world in our opinion) but we want to be 24 hour parents we are dying to be. We had our hopes so high we would move up today but the doctors told us they do not like to move the single ventricle heart patients up on the weekends.

Our newest challenge is Jack's feeding. We have officially made four attempts but he tends to get choked on the milk. We are working on the coordination of sucking and swallowing. He has the pacifier down, but when the milk is involved it throws him off. He is going for a swallow study next week just to make sure his throat is doing the right things. Sometimes after heart surgery nerve damage can occur and cause swallowing issues. Praying we are just having coordination issues.

So here are some of out latest pictures. The nurses love his hair in a mowhawk! Last night I changed his hair dew and when we returned this morning we were mowhawked again! It is cute on him though!

Finally a short update

Hello! I am so sorry this is the first time I have updated. I have missed so many calls and texts because cell servIce has been spotty but more than that we have been on the fastest roller coaster of events ever. Jack was born Wednesday late afternoon at 8 pounds, 13 ounces. Quite a boy. I am still recovering from the delivery because I fractured my tailbone, which is apparently not uncommon when women deliver large babies. It was all worth it though!

Jack has been doing very well. He had a heart cath on Saturday to rule out the very scary coronary artery restriction. He does not have it and if he has there would not have been any surgical options to save him. Heart transplant would have been it. Fortunately we have not been faced with that because after his BT Shunt surgery yesterday his EKGs and echoes look great. We are not completely out of the woods yet because we have to see how he does as they begin weening him off all the tubes and medication.

I cannot explain how exhausted I am because of the stress and worry. Please keep Jack in your prayers. I will try to be better about updating y'all but at the end of the day I am so tired I don't want to even talk about it anymore. I will write more about his birth, heart cath, surgery and recovery. I just need to get him up to the 8th floor first. That means we are closer to coming home.

I have included some pictures of him after surgery. It was not nearly as bad as i thought it would be! He is still so beautiful beyond all the tubes and tape! And yes he does have his hair in a mowhawk. The nurses love and fight over who gets to take care of him. One of our favorite nurses gave him his last surgical bath and fixed his hair. When he came back the OR team must have loved it too because it was re-fixed that way. :)



















- Posted using BlogPress from my iPad

Showing off

- Posted using BlogPress from my iPad

Announcing

Jackson Paul Babcock
"Jack"




June 1, 2011
4:19 pm
8 pounds, 13 ounces
19 1/2 inches

Charleston

Well we had our final ultrasound! It went great just as I had expected it to because minus his heart he has been a very healthy little boy! He scored an 8 out of 8 on the test they gave him which measured his breathing, fluid, size and a few other points I can't remember. They estimated his weight at 7 pounds, 1 ounce and at the time (two weeks ago) I felt it to be very accurate. They told us he should be gaining about a half pound a week which means he is around 8 pounds right now! It is great because that weight will help him get his surgery sooner and we won't have to wait for weight gain as so many heart babies do because they tend to be smaller. We also got some new 4D photos!! They aren't as cute because he is running out of room now.





I have also made my move to Charleston to wait on his arrival. The move was hard because I miss my sweet husband and our dogs. I also miss walking into the nursery and just looking at Jack's things. My hosts have kept me very busy though with shopping trips, great food (one of them is a chef), and the cutest little 8 month old who loves to squeal with excitement often and beat on my belly to get Jack moving! Jack has been really active since my move and I have wondered if it has anything to do with another baby around all day- trust me Jack can hear him! I also have two pugs who like to check on me first thing in the morning and after my naps. The female must know I am pregnant because she always wants to snuggle and likes to be as close to my belly as she can.



I have been a bit under the weather because this weekend I came down with a stupid cold. I am trying all the home remedies and lots of rest to kick it before he gets here- which I feel won't be too much longer because he can't get any lower (I think)! I have my 39 and a half week appointment tomorrow morning and I am interested to see if I have made any progress yet because last week was still no progress at all. 40 weeks will be Tuesday the 24th!!

Just a few prayer request- pray that I kick this cold because I am so worried they will not let me in the PCICU with him which would be completely devastating. They say the mother being with the baby, although not being held, makes a huge difference in how well they do. Also pray for Maddie a blog I have followed for a while of another HRHS child that gives me a lot of inspiration and a wealth of information! She will undergo the Fontan (the third and final surgery) on the 24th http://allredbabygirl.blogspot.com/. Also the Carter family as they await the arrival of their little girl. Derrick's story has been so inspirational to me also. Derrick was their first child born with a very complex heart and like Jack had a pulminary atresia. The new baby has a perfectly normal heart which is so exciting, because once you have one heart baby you have a slightly higher risk for another (although it is rare to have 2 in one family). I can only imagine how exciting it will be to see four perfect heart chambers on an ultrasound! http://www.carolinacarters.com/

Thanks for all of your support and prayers! I can't wait to see Jack's sweet face and kiss those chubby cheeks! Hopefully my next post will be to show him off to all of you!!