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First of all, let me say that Mama and Daddy have been here through all of this - right along side us every step of the way. Daddy, being the 'Rock Star' Pop Pop that he is, has been Sam's buddy, and Sam is even more attached now than ever. He wakes up from his naps and in the mornings whining for "Poooooop Pooooooop" (he doesn't say poop, for the record!). I can't even begin to express how amazing they have been. They moved into our house on Oct 1st, and haven't been home since - except for day trips to check the mail. They have brought Sam to the hospital pretty much everyday, and at least one of them has been there everyday too... I feel so bad for them having been displaced for so long, but do not know what we would have done without them! They will go home soon, but are going to take Sam with them for a few days. We'll get him over the weekend to see how we do with both kids, then they'll take him back until Thanksgiving! AMAZING - just amazing... that's what my parents are. If you ever wonder how much a parent should love their children, or what exactly a parent who says they love their children with all their hearts would do for them... just take notes from Mama and Daddy - they would literally do anything and drop anything to be with us and take care of us... they have certainly put those words into action! I love them SO VERY much!!!!!!!!!
Well, Jake was born on Thursday, October 11, 2007 at 4:10 in the morning. The night before, I decided egg plant was the dish of choice! If there were to be a next time, I would eat egg plant for LUNCH - not dinner!!!! I woke up at 1:00 AM with contractions (real ones, b/c I had had 'fake' ones for the two weeks prior!), woke BJ up at 1:30 - then woke Mama and Daddy up at 1:45. I had to shower, because I had an AWFUL cold, and had rubbed my chest with Vicks. BJ was timing my contractions, and they were 4-5 minutes apart. They say to head to the hospital when they're 5 minutes apart - regularly. However, I had been instructed to head to the hospital AS SOON as I felt the first twinge. We did! BJ ran over to Mama and Daddy and told them that as soon as I got out of the shower, we were leaving. We did... we left at 2:30 AM to head to Dekalb Medical (normally 30-45 minutes away), and arrived at 2:50 AM. Yes, 20 minutes - BJ flew, but my contractions had gotten to be 3-4 minutes apart! At one point, he stopped at a red light, and I was in the back telling him he didn't have to stop - he kindly informed me that he needed to stop because of those headlights coming towards us... in my opinion, he could have made it!!!!
We went to the check-in desk, and she told us to sit down and wait... WHAT? ARE YOU KIDDING? We waited in the lobby for an eternity (or 15 minutes to those NOT in labor), while BJ filled out some paperwork. He turned around and asked me a few questions - one of which was, "Is the baby coming now?" He thought it was funny they asked... I did not! They finally took me back to the "Assessment Room." - and they would only let BJ go with me, not Mama too... so, bless her heart, she had to wait alone in the lobby! (Daddy and Sam were on their way, but Daddy opted to get Sam up once he got us out the door - smart move!) OK, I'm not a doctor, but there was no need for 'assessment' - I could have told them, "Yes, I'm pregnant, yes, I'm in labor, and YES, the baby is COMING!!!!" Got an IV started - great; one step closer to the all-important epidural. As the nurse is asking more questions - most of which BJ already filled out on the paperwork earlier (do they not converse here?), I am BEGGING for my epidural - saying, "Please just go ahead and call the doctor to get it ordered!" She continues to type on the computer, and I say, "You know, I really feel an urge to push." She's like, "Oh, well, I guess I can go ahead and check you." Like that's not the order she's supposed to do it in... I was five centimeters already! I continue to tell her that it's getting more severe - and please get my epidural... then, my water broke! So, she decided (even though it wasn't the normal ORDER of how she is supposed to do things), to call the doctor on in.
20 minutes after arriving in the 'assessment room', the doctor came in and checked me - I was EIGHT cm at that point. He starts telling them to get me into a room (in an urgent tone) - the assessment room is NOT a labor and delivery room!? As we're wheeling into a room, BJ says, "Can I go get her mom now?" and the doctor is pulling on his stuff, telling me to push when I feel the urge. The only thought I had was, "But, wait, I haven't had my epidural... this hurts!" Mama and BJ come in just in time to see the head, and the doctor telling me to push. The first push, I didn't really grasp that there was in fact a head there, and that I was actually going to be doing this without an epidural. So, with the second push, my thought was, "Get this baby out in as few pushes as possible," and, "OUCH!" Three pushes total, and Jake was here... at 4:10 AM - just over an hour after arriving at the hospital! Good thing there was no traffic!!!!
I'm not going to lie - it hurt. Having had one kid naturally (with three pushes), and one with the epidural (that I had to push for 3 1/2 hours) - I can't say that I recommend one over the other - they both ended up hurting and were unpleasant! End result... both totally worth it! I will say that the recovery without the epidural was a little faster. Good thing for all that followed...
We were expecting Jake to be blue when he was born. He was not! He was a perfectly pink baby! Had we not known about his heart defects, then he would have gone to my hospital room with us, and would more-than-likely have made it home before we knew anything was wrong. The odds for his survival would be A LOT lower had this been the scenario. The major thing here is that we kept his VSD (hole in his heart) open. Once he was born, I held him briefly, as did BJ. Then, the NICU team went to work - they immediately got him on the prostaglandin, which keeps the VSD open, hence allowing the oxygenated blood to flow more freely through his body. He went to the NICU and stayed there for five days. During that time, we got to hold him, and I got to nurse him. And we did a lot of praying! We just wanted him to get to Children's so he could start getting better. There were no beds available in the CICU there. We talked with Lyndsey everyday - she is a nurse in the CICU at Children's. What a blessing she has been through this ordeal. God definitely put her in our lives and made us such close friends for this occasion. She has offered us love and encouragement as a friend, but also on a professional level, she has explained everything to us, and has been there through all of this! We just couldn't understand why God would want us to wait like this!
20 minutes after arriving in the 'assessment room', the doctor came in and checked me - I was EIGHT cm at that point. He starts telling them to get me into a room (in an urgent tone) - the assessment room is NOT a labor and delivery room!? As we're wheeling into a room, BJ says, "Can I go get her mom now?" and the doctor is pulling on his stuff, telling me to push when I feel the urge. The only thought I had was, "But, wait, I haven't had my epidural... this hurts!" Mama and BJ come in just in time to see the head, and the doctor telling me to push. The first push, I didn't really grasp that there was in fact a head there, and that I was actually going to be doing this without an epidural. So, with the second push, my thought was, "Get this baby out in as few pushes as possible," and, "OUCH!" Three pushes total, and Jake was here... at 4:10 AM - just over an hour after arriving at the hospital! Good thing there was no traffic!!!!
I'm not going to lie - it hurt. Having had one kid naturally (with three pushes), and one with the epidural (that I had to push for 3 1/2 hours) - I can't say that I recommend one over the other - they both ended up hurting and were unpleasant! End result... both totally worth it! I will say that the recovery without the epidural was a little faster. Good thing for all that followed...
We were expecting Jake to be blue when he was born. He was not! He was a perfectly pink baby! Had we not known about his heart defects, then he would have gone to my hospital room with us, and would more-than-likely have made it home before we knew anything was wrong. The odds for his survival would be A LOT lower had this been the scenario. The major thing here is that we kept his VSD (hole in his heart) open. Once he was born, I held him briefly, as did BJ. Then, the NICU team went to work - they immediately got him on the prostaglandin, which keeps the VSD open, hence allowing the oxygenated blood to flow more freely through his body. He went to the NICU and stayed there for five days. During that time, we got to hold him, and I got to nurse him. And we did a lot of praying! We just wanted him to get to Children's so he could start getting better. There were no beds available in the CICU there. We talked with Lyndsey everyday - she is a nurse in the CICU at Children's. What a blessing she has been through this ordeal. God definitely put her in our lives and made us such close friends for this occasion. She has offered us love and encouragement as a friend, but also on a professional level, she has explained everything to us, and has been there through all of this! We just couldn't understand why God would want us to wait like this!
Here's our precious new baby boy... he is a little jaundice, huh?
I was discharged from the hospital on Saturday - they were nice enough to let us 'stay' in the room until 9 pm or so, but after that, we had nowhere to go. The coordinator nurse in the NICU had compassion on us - we were feeding Jake every 2-3 hours, and the Neonatologist said that he could only have breast milk since he was a heart baby (we knew through Lyndsey that this was not necessarily the case, but 'who were we to argue' that we needed to be close to Jake!? =). We lived too far away to be able to make the feedings work, so this lady arranged for us to be able to stay in an old room in the old part of the hospital (free of charge). It was not the nicest room, and anyone that found out we were staying there cautioned us to be sure to keep the deadbolt locked at all times, and not to go anywhere alone - or stay in the room alone. GREAT... We joked that we were in the bowels of Dekalb Medical. Quite the experience to say the least. We had our own shower, though, and BJ, sweet as he is, let me have the first shower. Once I let the water run long enough that it wasn't running orange, it took me FOREVER because it was barely a trickle. BJ gets in, and I hear this gush of water - he flipped a switch and made the water pressure much better... he could have mentioned that to me!!!!! Nonetheless, we were EXTREMELY grateful for the room - we DID NOT want to leave our baby!!!!!
Me feeding Jake - one of the times!!!!! He's burping...
Jake did fine for the first few days, but we could see that he was starting into congestive heart failure. Those five days at Dekalb were torture. Mainly because Jake was laying there - OK, for the most part, but not getting better. And, the last day he was there, he had really started declining. I can't even begin to say how much we cried in those five days. Saturday, when we were 'displaced' we literally boo-hooed - the fear of the unknown... and what little we did know finally got to us. Words just can't do justice to how defeated and depressed we felt. Seeing your little baby laying there - dying, actually - waiting for Children's to get an open bed, and not being able to do a thing about it was the most helpless I have ever felt in my entire life. It was completely in God's hands... all we could do was pray. One of the nurses told us that not too many years ago, if they saw a baby come in with Jake's condition that they all knew he wasn't going to make it... thank God for medical research and technology!
We had been told he would be moved by Saturday or Sunday... those days came and went. Then Monday was then the day - came and went. Finally, Tuesday, we got the call that the transport team would be there by noon. We were there for them to load Jake up and wheel him out of the room. THAT was emotional, because we knew he was on the road (literally) to help and recovery - but, again, there was that fear of the unknown, and we knew the surgery was still ahead of us...
Come to find out, Dr. Kirshbom, Jake's surgeon, was on vacation that week. He elected to come in and do Jake's surgery that Wednesday... reasons beyond what I can say at the moment - but, again, it was God's perfect timing that he made this work to do Jake's surgery - and that we stayed at Dekalb as long as we did. If Dr. Kirshbom had not come in, we would have gotten another surgeon (well-qualified and great surgeon), but Jake's defects were Dr. Kirshbom's specialty - and he was THE MAN that needed to do this surgery. We knew that, he knew that, and God knew that!
We got to Children's and did our check-in stuff, then went to see Jake. Doctors and nurses were everywhere - we already felt better. They weren't all about maintaining him - they were all about making him better. We learned that Jake would be in surgery the next day (Wednesday) by noon. That day, we stayed by Jake's bedside as much as they would let us. We finally left the CICU a little after midnight. We knew that we could only see him again for a short time that next morning before surgery. We got up and got ready and were back with him at 6 that morning. We were with him until they took him back to surgery... about an hour before they were to take him back, the respiratory team decided to go ahead and incubate him (put him on the breathing machine) because he wasn't breathing well enough on his own, and they would have to do it in the OR anyway. We knew then that Jake could not have waited any longer than he did for surgery. He was no longer capable of sustaining himself. Another testament of God's perfect timing!
We were able to walk with Jake to the OR doors - which was one floor up. We got on the elevator (me, BJ, Mama, Daddy, two anesthesiologists, and Jake's nurse), and we got about halfway up, and the elevator stops... a voice comes on that says, "We are experiencing MINOR technical difficulties." HUH???? My baby is laying there with a man BREATHING for him, and we're experiencing MINOR technical difficulties!!!!! Every one's eyes got as big as saucers, and no one said a word. Pretty soon, it started moving again, and everyone started breathing again - the dude did a great job not losing count of Jake's breath -Jake's the only one that kept breathing through that!
Watching them wheel my little boy into the OR was yet another emotional wrench. It was so hard watching him go back, and know that they were about to 'crack' his chest open and operate on his little heart for the next nine hours. We were emotional wrecks - again - and they took us to this waiting room where all of the day surgery people wait too... so, it was extremely crowded! We found a group of chairs, and headed that way. Before we even got to the chairs, this BIG lady approached us and asked if we were the Laterveer family. We said yes, and she said she was from financial and could she speak with us for a moment. I looked at her in disbelief and said, "Do we have to do this RIGHT now???" You know me - I'll accommodate anyone, but come on... Jake was to be in surgery for at least eight hours - we weren't going anywhere!!!! She said no, that she needed to talk to us then, and she wouldn't make us go down to her office and we could talk over in the corner... whatever - we weren't going anywhere with her! And all she wanted was to complain to BJ that his HR guy at work wouldn't verify information for her - he CAN'T!!!!!! We basically verified that we do in fact have insurance, and we're sorry that our SIX DAY OLD child doesn't have an insurance card yet - um, BJ hadn't been back to work to get anything filled out anyway... duh!!!! OH, and, newsflash - he doesn't have a social security number either!!!!! She was just too stinking lazy to come back and find us later - and at that, it's not like he was going to get out of surgery and we were going to take him on home either!!!! Geez, lady - use your brain here!
We received phone calls from the nurse in the OR every hour or so to report on Jake's progress - on the phones in the waiting room (which entailed us RUNNING to whichever phone was ringing b/c it was NEVER the one right next to us - if it was for another family, you had to holler the name until someone ambled on over to get it). I had to go pump every two or three hours, so I would leave the waiting room to go do that... I think that distracted me and gave me a purpose to be able to get through that day. BJ, however, didn't leave that waiting room except for a few minutes to eat lunch. We ordered pizza for dinner and ate it in the waiting room (that clearly had signs telling us not to eat or drink in there). Nine and a half hours later, Dr. Kirshbom came out and gave us the good report that Jake had done fine and the repair had gone well. What a relief we felt. When he was done talking to us, and was about to leave, he shook our hands... I grabbed him and hugged him - he had done so much above and beyond for us that I just didn't know how else to express our deepest gratitute to him (Lyndsey said she would have liked to see his face =)! When he left, BJ and I just grabbed each other and cried. Again. That was such a long day - I can't even explain how difficult of a day that was! Our friends and family that were in and out were a blessing and a wonderful distraction. Mama and Daddy were there the whole time. BJ's dad came shortly after surgery started and was there all day. Inny came and stayed as well. Bo and Jen came - then took Sam flying to get him out of the hospital (yes, Sam flew for the first time while my other child was having open heart surgery - I just got it all out of the way that day!), Cathy stopped by, Matt Piland and Bruce Hardy stopped by, Matt Beverly and Beth and Eli stopped by, Melissa came and stayed for a few hours - it was great to be surrounded by them and loved on through all of this! Lyndsey came by on her way into work... she was so concerned for Jake, and her emotion and love came pouring out when she came in. All of the love and support expressed through the Care Page - that day and everyday was amazing and humbling. Mark DeAngelo cracks me up!!! It was absolutely wonderful to feel all the love pouring in through everyone's words... I just can't put into words how warm inside that made us feel!
Bo and Sam off to fly the big plane while little brother was in surgery...
Sam literally flying - showing Uncle Bo how it's done!
Uncle Bo had to have reinforcements for this venture, so Aunt Jen went to help wrangle the little one!
Once Dr. Kirshbom talked to us about Jake's surgery, we knew we had an hour before we could go see him. We were antsy, giddy, and relieved to know that the worst was over. Once we saw him - he looked awful. His chest was open with his heart exposed (through a tan piece of tape), and he had TONS of tubes and wires attached to him. He had 14-15 monitors on him, and 12 different medicines being pumped into him. For an adult, that's a lot, much less for a little six-pound baby - I still don't know how they found enough surface area to put all of that on him. All of that, and still there was such a feeling of relief - the surgery was over, and it was all about recovery and getting better now... we sat with him again until after midnight - just looking and praying... OHHHHHH did we pray! We knew Jake was in good hands - first of all, God was taking care of him, but Lyndsey was the charge nurse, and she had assigned Meredith to be Jake's nurse that night - we knew they were looking out for him with a very special eye. Have I mentioned how blessed we were to have Lyndsey there through all of this? She called the CICU and talked to Jake's nurse every shift to check on his progress... she even called while she and Matt were in San Francisco on vacation!!! She's AMAZING!!!
We finally left and went to our sleep room and crashed for the night. We had slept for a couple of hours, and there was a knock on the door (at about 3:30 AM). Lyndsey had sent one of the nurses to come get us. Jake had progressively gone downhill all night. He had come back from surgery with more bleeding around the heart than is normal. Meredith, Jake's nurse, noticed that his potassium had increased, and the on-call cardiologist ordered an echo. The echo showed an enormous blood clot had formed behind his heart. They immediately called Dr. Kirshbom to come back and perform emergency surgery to remove the clot. The clot was the size of his heart (a large strawberry). Lyndsey, being the charge nurse had to organize and arrange for everything and everyone to be where it/they needed to be. When we got there, a fellow (cardiologist-in-training) came out to brief us on what they knew (which was that they were performing emergency surgery to remove a clot), and that a chaplain had been called. Ummmm... that freaked us out - hospitals don't usually call chaplains unless you're dealing with death. That was scary. Later, we found out that this is standard for these types of procedures... to have someone else with you. Lyndsey came back to talk to us as well. In the midst of what we were dealing with, BJ and I both felt so bad for her. She was having to do her job, but go out and tell her friends that this was serious stuff. She also did not know the chaplain that was on-call, so she told us that she had also called Matt. Again, we felt bad that Matt had to get up at four in the morning, but once he was there, we were SO GLAD he was there. We prayed, but other than that, none of us knew what to say, so we all just sat and stared at each other and the floor... but it was so comforting to have him there. We weren't about to call our parents and wake them up just to sit there and worry and wait...
Everything went well with the emergency surgery, but it made us realize that just because surgery was over did not mean we were out of the woods. It was a bumpy ride, that's for sure. Jake's lungs had collected fluid, and he had to fight off a little bit of pnemonia. Daily, they were able to take him off meds, remove the breathing tube, chest tubes, IV's, etc. Some days we saw what felt like a lot of progress, other days, it felt like we got nowhere. He was in the hospital for two weeks after his surgery, so we were really asking a lot of our little guy - but he did really well, all things considered.
The first time he was held and ate after surgery, was 12 days after surgery. I was so upset with his nurse, because she grabbed him up, cradled him and fed him... then put him back! I was furious, because I thought BJ or I should have been the ones to hold him first. Giving her the benefit of the doubt, maybe she needed to see him eat and be sure he was breathing and swallowing correctly. I DID get to hold him right after all that, though - and he knows and loves his mommy best! As good as it felt to hold little Jake in the NICU at Dekalb - it felt a million times better to hold him after this long road of surgery and scares and ups and downs!
And BJ...
We finally left and went to our sleep room and crashed for the night. We had slept for a couple of hours, and there was a knock on the door (at about 3:30 AM). Lyndsey had sent one of the nurses to come get us. Jake had progressively gone downhill all night. He had come back from surgery with more bleeding around the heart than is normal. Meredith, Jake's nurse, noticed that his potassium had increased, and the on-call cardiologist ordered an echo. The echo showed an enormous blood clot had formed behind his heart. They immediately called Dr. Kirshbom to come back and perform emergency surgery to remove the clot. The clot was the size of his heart (a large strawberry). Lyndsey, being the charge nurse had to organize and arrange for everything and everyone to be where it/they needed to be. When we got there, a fellow (cardiologist-in-training) came out to brief us on what they knew (which was that they were performing emergency surgery to remove a clot), and that a chaplain had been called. Ummmm... that freaked us out - hospitals don't usually call chaplains unless you're dealing with death. That was scary. Later, we found out that this is standard for these types of procedures... to have someone else with you. Lyndsey came back to talk to us as well. In the midst of what we were dealing with, BJ and I both felt so bad for her. She was having to do her job, but go out and tell her friends that this was serious stuff. She also did not know the chaplain that was on-call, so she told us that she had also called Matt. Again, we felt bad that Matt had to get up at four in the morning, but once he was there, we were SO GLAD he was there. We prayed, but other than that, none of us knew what to say, so we all just sat and stared at each other and the floor... but it was so comforting to have him there. We weren't about to call our parents and wake them up just to sit there and worry and wait...
Everything went well with the emergency surgery, but it made us realize that just because surgery was over did not mean we were out of the woods. It was a bumpy ride, that's for sure. Jake's lungs had collected fluid, and he had to fight off a little bit of pnemonia. Daily, they were able to take him off meds, remove the breathing tube, chest tubes, IV's, etc. Some days we saw what felt like a lot of progress, other days, it felt like we got nowhere. He was in the hospital for two weeks after his surgery, so we were really asking a lot of our little guy - but he did really well, all things considered.
The first time he was held and ate after surgery, was 12 days after surgery. I was so upset with his nurse, because she grabbed him up, cradled him and fed him... then put him back! I was furious, because I thought BJ or I should have been the ones to hold him first. Giving her the benefit of the doubt, maybe she needed to see him eat and be sure he was breathing and swallowing correctly. I DID get to hold him right after all that, though - and he knows and loves his mommy best! As good as it felt to hold little Jake in the NICU at Dekalb - it felt a million times better to hold him after this long road of surgery and scares and ups and downs!
This is the first time I got to hold Jake since we were at Dekalb... the longest 14 days of my life! (He got so much blood during and after surgery - the jaundice is gone!)
And BJ... 12 days after surgery, we finally made it to the Step-Down Unit (CSU)... that's the final step before you get to go home. We thought we could finally relax and 'spend time with our new baby' once we got there... no such luck. You're very 'alone' there (i.e. there's not a nurse sitting beside you at all times), but there were CONSTANTLY people in and out... nurses/techs getting Jake's vitals, audiologists checking his hearing, homies teaching you how to use a feeding pump, speech therapists that help with his feeding, respiratory thereapists doing CPT's, nurses bringing bottles to feed him, lab techs drawing blood, radiology to get him for x-rays... you get the picture????? And it was almost busier at night! We go NO sleep hardly while we were there! I learned how to put a feeding tube in Jake's nose... not fun! He screamed, and the nurse wouldn't help me out! After 10 minutes of pushing and getting nowhere, we tried the other nostril... went in like butter! Luckily, that was the only time I ever had to do that! Jake pulled it out after we had been home a few days, and he's been eating just fine ever since - with the bottle!!!
One of the many things we had to get through to get home was a carseat test... to be sure Jake could with-stand the angle and not get agitated, hence lowering his blood-oxygen saturation... he had to stay there for an hour - he slept... lucky!
It's still such a great feeling to hold him! I don't mind the crying jags, or the feeding every three hours, or getting up every 1 1/2 to 2 hours at night or having to feed him then pump myself - it's a labor of love, and I am so thankful to have my baby to be able to do these things for. I won't lie, though, some sleep would be nice!!!! But, it gets better and easier - he's already eating more and sleeping just a touch more!
God is good. He has been by our side through the darkest and toughest days of our lives - and he has delivered us safely to the other side. God is good!
Now, Jake still can't be exposed to germs because, if he gets the slightest sniffle, fever, or anything, it could lead to pneumonia or something worse. His little defenses just aren't where they should be yet. And this is the worst time of year for sickness - especially RVT (a respiratory virus that Jake is at risk to catch). This means we're at home unless we have a dr. appointment! Bad for me, but TERRIBLE for Sam! I feel so bad for him - not only does he have to stay cooped up at home more, but he really can't be exposed to germs either, for fear of him bringing them back to Jake!!!! It's a vicious cycle!
We have done good so far at home - we have only called Lyndsey to come look at him once - he looked a little blue to us the day after we got home... more-than-likely, that was the switch from flourescent lighting to regular sunlight!? And a little bit of apprehension on our part!!!
There's the long version of our last month or so... hopefully I will be able to keep things updated better now - I have to do SOMETHING while I pump!!!
Here are some more pictures from the last month...
The weekend after Jake's surgery, Bo and Jen took Sam to an airshow... this plane was just Sam's size!
Bo's rental car was a minivan... I think this fits - kid and all!
Sam loved the "punkeens" in the garden at the hospital!
Sam didn't go trick-or-treating, but, of course he dressed up!!!! He didn't like the costume so much, but he absolutely LOVES Elmo!!!!!!
More to come later... this one is long enough!
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