Hakuna Matata

Here is Caelin without his chest tube! Hooray! :)

We are much overdo for a positive update, so thank goodness it is finally time! Yesterday our nurse used the phrase "Hakuna Matata" and commented on how that song can put anyone in a good mood- you just can't help it. So all day, Mommy found herself singing "Hakuna Matata" and anxious to watch The Lion King with Caelin. Now if only we really could have no worries for the rest of our days... but we will take what we can get!

Caelin had a pretty good night last night- they began weaning the ventilator. He did not get as much rest as we would have liked for him to get, but he ended up making up for it today.

This morning during rounds Mommy and Daddy were very involved in the discussion with the doctors because we saw Caelin's strength and desire to improve but the past few days had passed with little changes for him. Although we understand why, we were concerned with the weekend coming and knowing they do not like to make many changes on Saturday and Sunday because they do not have a "full staff." So this would essentially mean two more days of little progress for Caelin. So we respectfully shared our concerns and observations and the doctors listened to us, in fact, they agreed with what we had to say! It was a great feeling advocating for our little warrior and realizing how knowledgeable we have become about our son and his condition.

So here were the big changes for today:

1) He got his chest tube out! :) The chest tube was in place to allow excess blood and other fluids to drain from around his heart. For the past two days, it had not excreted any fluid so the doctors decided it would be a good time as any for the tube to be removed. Jen, the surgeon's PA and who we believe to be Caelin's personal angel in disguise, came into his room and carefully removed the tube. Cael did not even budge! The tube came out easily and revealed it had clotted off which explains why no fluid had come out through it in the past two days. Jen said because of the clot it essentially was not working anyway, that his body had really already adjusted to the tube not doing its job and it was like it had not been there.

2) Caelin is back on feeds! Beginning this afternoon Caelin is allowed to have a continuous drip of 2 milliliters per hour of breast milk. It is not much, but it should help get his bowels moving again and should help to bring his bilirubin level back down. We are hoping as his stomach adjusts to this amount, they will start to slowly increase it.

3) His bilirubin level has been trending upward again. Monday it was around 8, Wednesday it was around 12, and this morning it was up to 15. Because of this, they decided to put him back on the bili-blanket as a preventative measure, hoping he will not have to go back under the lights. The blanket combined with him being back on feeds and hopefully starting to poop makes the doctors think his bilirubin level should lower.

4) His chest X-ray was much better this morning. He coughed a lot during the evening and hacked up a good amount of mucus and this helped his lungs clear out and improve. The respiratory specialists are still doing chest therapy but less frequently. This afternoon he has not been coughing as much nor has he had near as many secretions.

5) The respiratory therapists are weaning oxygen and the respiratory rate on the ventilator working toward Caelin's extubation. They are going a little slower this time than they did last weekend because his stats are good, but not as excellent as they want them to be so they do not want to push him too much. Mommy and Daddy want that tube out of him so he is not so uncomfortable, but we fully support their decision because we want his body to be fully ready to breathe on his own. Right now, he often lets the machine do all the work while he is sleeping. He has been doing this less frequently and initiating more breaths on his own since the respiratory rate went down to 20 breaths per minute from 28 but we still do not want to take any chances.

Overall, today was a big day for Caelin and a great day! After the chest tube was removed, we noticed an immediate difference. He has been incredibly happy all afternoon! He was awake for almost two hours after the tube was out (that's with extra pain medication so he was fighting falling asleep because he wanted to celebrate) and he was happily awake. It has been a while since he was awake for that long and not agitated. This was such a reassuring feeling for Mommy and Daddy. After being awake for so long, Caelin decided to take a nap. He slept pretty much undisturbed, with the exception of a few diaper changes and suctions, for about five hours and this allowed Mommy and Daddy to get some much needed rest. Again, it has been a while since he has slept that well for that long.

Two Weeks Old

Today, Caelin is two weeks old. Mommy and Daddy cannot believe how fast the last two weeks have gone by. Although a couple of Caelin's big days seemed to drag on, overall the time has flown. This Monday Daddy has to go back to work because Spring Break will be over and Mommy and Caelin are going to miss him a lot but luckily he works close so he won't get back to the hospital too late.

Cael had a pretty good day today. The doctors decided to increase his dose of Fentanyl because yesterday he was awake a lot, got agitated relatively easily, and was a little more difficult to console. So today he was able to sleep more frequently and for longer periods of time.

Caelin received an echocardiogram this morning to look at the flow of his shunt. The pediatric cardiologist reviewed it and said the flow still looks good. She also listened to it and said that it sounds very good. She said after the surgeon was finished with surgery, she would speak with him and the other doctors to decide if and when Caelin would go to the cath lab to look at the shunt further. Later this afternoon she returned and informed us they scheduled him to go to the cath lab on Monday at 9:00 AM to look at the shunt with a camera to see if he needs a stint. They will send wires through his main artery in his leg (groin area) to get pictures of the shunt. At this point, they will decide whether or not to insert a stint to reinforce his shunt.

He has been receiving respiratory therapy all day for his partially collapsed lung. Both lungs have shown improvement but his right upper lobe is still somewhat collapsed. So they are being a bit more aggressive with the therapy now, trying to expand it and decrease the mucus build up. They have also decided to work on extubating him. The doctors were waiting to come to an agreement about the stint before deciding when they would begin weaning him off the respirator. They are hoping to have him off the respirator by Sunday but it all depends on Caelin and if his little body is ready to take full control of his breathing again. They decided to work on extubating him before he goes to the cath lab to see how well he does; hopefully he does well and then when he gets reintubated at the cath lab, he will be able to be immediately extubated after the procedure. Whereas if he remained intubated the whole time, from now until after the procedure, he would need to be intubated for a few more days after the cath lab to regain strength and recover.

During rounds in the morning we intend on asking the doctors about feeds. Since he has only eaten two out of fourteen days, we are a little concerned with how his stomach will react to feeding if they continue to stray away from feeding. Again, he receives all his nutrients through his IVs but nothing is actually going to his stomach. They avoid feeding babies with the heart condition for a little while because when they eat, it changes their blood flow. Up to this point, they wanted his blood flow to be more restricted to the vital areas. But like we said, we are worried that he may struggle with transitioning to feeds if they continue to wait and that the natural bacteria in the stomach may end up having a negative effect on his little body.

One Week After Surgery

Well it has been one week since Caelin got his initial surgery. At this point the doctors hoped to have him extubated and his chest tube out but since Monday's incident, Caelin's little body just isn't there yet. Thankfully he is back on track to recovering with good stats but at a little bit of a slower pace than before. He had an overall good night last night. His chest X-ray revealed his right lung is partially collapsed. So today the respiratory specialist has been coming in every 2-4 hours to do a little bit of therapy to try to work out the mucus plug (what they believe to be the cause of the partial collapse). Since the therapy, they have suctioned his lungs and has quite a bit of excretions including some yellow mucus. He will have another chest X-ray over night and hopefully it will show the lung recovered an no longer collapsed.

A physical therapist also stopped in today to introduce herself, explain what she does, and to assess Cael. At Cael's age she checks to make sure he is moving appropriately and is positioned well to allow for movement. She said Caelin seems to be doing well and she will continue to visit sporadically.

After Monday's incident, Caelin was on Nitric Oxide mixed with Oxygen. The nitric oxide reduces pulmonary artery (blood) pressure and vasodilates the blood vessels. They saw his improvement and concluded he no longer needed it, so they weaned him off it completely. Typically they need to raise the oxygen level when they wean the Nitric Oxide but they did not have to do this with Cealin- his stats stayed high. In fact, later this afternoon they lowered his oxygen to 50% but the respiratory rate has remained at 28, which is good because although he initiates most of his breaths, he still relies on the machine for some.

Caelin will be getting another echocardiogram tomorrow to check the function of his shunt and for the cardiologists and surgeon to further discuss the possibility of Cael getting a stint to reinforce the shunt. Yesterday, one of the cardiologists said the echo shows a little bit of tapered blood flow at the end of the shunt which causes some concern about its long-term stability. He said it looks great for short term and it is doing its job now, he is just not sure how long it will hold out and if it will make it to his next surgery (around 4-6 months of age). So after the echo tomorrow they are going to discuss taking him into the cath lab to get a picture of the shunt and make a decision. The cardiologists said this would most likely take place early next week because they want his chest to heal; however, when we spoke with the surgeon, Dr. Quintessenza, and he did not like the idea of waiting because Caelin would have to remain intubated until after he has recovered from the stint being placed. The surgeon feels like this is too long for Cael to be intubated so he said he would speak with the cardiologists and they would all get back to us. We have had no updates since then but hopefully we will get more information in the morning.

Again, thank you. Caelin is able to heal not only because of his strong, resilient personality but because of all your continued positive energy, thoughts, prayers, and more! We love you.

Still Moving Forward despite a Terrifying Setback

It's the three of us against the world. Together, we can and will do ANYTHING.

Sunday was a good day for Caelin. He went through the whole day with great stats and continued progress. At 11:00 PM the doctors ordered for him to go down to the lowest setting on the respirator. From what the nurses told us, it is more difficult for Caelin to breathe on the lowest setting while intubated than if he were just breathing regularly- this is because while he is intubated, he is breathing regularly but it’s like breathing through a straw with extra pressure. So they had him on this setting from 11:00 PM and planned on extubating him around 10:00AM Moday morning (just after the doctors made their rounds). However, things did not work out this way.

Caelin had been off feeds (breast milk) and all pain meds since 4:00 AM Monday morning to prepare for being extubated. So needless to say, none of us slept from 4:00 on because Caelin was in pain, uncomfortable, and sick of breathing through the tube. So Mommy and Daddy would rotate being at Caelin’s bedside to try and calm him down. He would relax for 5-10 minutes and then start back up again. His breathing went in and out but the nurse said it was normal because of breathing on his own through the tube and feeling so much discomfort and pain. Then at 9:33 AM while Caelin had his right hand wrapped around Mommy’s finger and with Mommy stroking his head with her other hand and singing, “You are My Sunshine,” Mommy watched Caelin turn purple under the bililights and heard every machine beeping as Caelin’s heart rate plummeted and his breathing ceased. The nurse told Mommy to get out of the way as she rushed to pump oxygen back into Caelin’s struggling body. Mommy ran outside of the room and yelled for help while Daddy pressed the red emergency button.

Doctors from every unit came flying into Caelin’s room trying to assess the situtation and bring Caelin back to being stable. While he was barely breathing, the OR staff was contacted and came into the room. The surgeon, Doctor Quintessenza, told us he would have to perform immediate open-heart surgery and asked for our consent. Before he could finish we told him to start right then. We were escorted out of the room and Dr. Quintessenza began his surgery at 9:51 AM. By 10:15 AM the surgery was complete. Dr. Quintessenza made his way out to the consult room where Mommy and Daddy were terrified and anxiously awaiting good news; the surgeon told them Caelin was stable and he was able to remove the blood clot completely. A blood clot had formed above the shunt (the shunt was placed in Caelin’s heart on Wednesday during the first surgery) which prevented any blood flow through the shunt, causing his heart to crash. Around 11:15 AM Mommy and Daddy were allowed back into the room to be with Caelin. We told him that we love him with all our being, that he is the most amazing and strongest person we know, and that we are unbelievably proud of his resilience and determination to keep on fighting.

For the rest of the day and into the night his little body began making progress, but progressed much more slowly compared to Wednesday after his initial surgery and Friday after he got his chest closed. He remained on heavy pain medication, including a paralytic, to keep him comfortable and asleep. He came off the paralytic today (Tuesday) around 11:30 AM and his body is very slowly moving and waking up (it is now 1:30 PM). The doctors tell us this time around the steps toward recovery are most likely going to be slower than immediately following his first surgery but they reassure us that he is still doing well and will recover.

To try to prevent another episode like this one, they increased his Heparin (an anticoagulant) drip and he is receiving aspirin. Combined, these should help prevent blood clots in wrong areas, specifically above his shunt. Also, the pediatric cardiologist and the surgeon have been discussing the possibility of inserting a stint to help make the shunt more stable and further prevent a blood clot above the shunt. Over the next few days, they are going to track Caelin’s progress and weigh the risks against the benefits to decide whether or not it is the right decision.

Caelin is such a fighter, but even the most powerful warrior needs support, so we thank you! We thank you all for your continued positive energy, reassurance, thoughts, and prayers and more for our little boy.

9 Days Old

This is Caelin under the bili lights.

Caelin had a pretty good night last night. He had to get his lines changed which agitated him because it takes a little over an hour to get everything situated. It is so hard to watch him get upset because his little eyes squint, his muscles stiffen, sometimes his chin quivers and his mouth opens trying to cry but nothing comes out. But other than the changing of the lines, he had a pretty good night.

Over night his bilirubin level rose up to 19 indicating jaundice, so he had to start the bili lights and blanket (phototherapy). The doctor said the jaundice is unrelated to his heart condition because it does happen to many healthy infants typically within 72 hours of birth; however, he did not start exhibiting signs of jaundice until after his surgery. So we believe the procedure may have had something to do with its onset (possibly not having eaten, being on bypass, or getting blood transfusions and lipids- but we really cannot be sure).

Other than having to be under the bili lights, Caelin had another great day marked with milestones. They began weaning Calcium. They also began weaning oxygen and respiratory from the intubation machine. The respiratory specialist said she cannot remember ever weaning a baby so quickly who just had his chest closed from the Norwood Procedure. I felt proud from my head to toes and my heart skipped a beat- my little baby is already setting records and making such an impression and he is only 9 days old!

Interesting Sidenote: On Tuesday I was wearing a "Walled Lake Western Girls Basketball T-shirt" and the respiratory specialist noticed it. She graduated from Walled Lake Western in 1991! What are the odds? No one outside of Walled Lake ever knows about Walled Lake!! haha Such a small world!!!

Second great sign for today was an increase in the TPN concentration to have more nutrients and to be dispensed faster. In addition to the TPN, Caelin started breast milk feeding today! Although he detested getting the feeding tube, his tummy is finally able to get some substance! He is only getting 3 mL/hour, which is not very much, but it is better than nothing and it's best for them to start him on it slowly. These two things will help him pee more and start pooping which will help his bililevel drop and hopefully get rid of the jaundice.

Since he is feeding, he got the Foley catheter out today, too! So although he hates diaper changes, it is much better for him to fuss through a diaper than to continue to have the catheter.

Overall, he had a very big busy day. He had a lot of moments where he was not happy with the nurses, but we try telling him that everything they are doing is to help him get well. Although he may not understand what we say, Mommy and Daddy are able to soothe him pretty well these days through singing and positive touch. He loves to hold our fingers and to have the top of his head cuffed in our palm. He also likes his eyebrow line grazed and his temples lightly massaged.

Our baby Caelin is so adorable and powerful... never ceases to amaze us!

Keep checking back for more updates on the recovery of our resilient and inspirational miracle.

Big Step Towards Recovery

Caelin had a very good Thursday night. Mommy woke up at 1:00 and saw he was awake so she stayed up for a little while singing and talking to him until he went back to bed. Daddy and Mommy woke up this morning at 6:00AM and decided to head home to shower, swap clothes, and say hi to the pups before Caelin got his chest closed. Yesterday, the surgeon's assistants stopped by to tell us the surgery would start between 9 and 10, so we figured we had plenty of time. As we were leaving, Cael woke up slightly and we told him we love him, are proud of him, that he is the strongest person we know, and that we would see him later. Unfortunately the stuff at home took a little longer than expected and of course there was traffic on the way back to the hospital. We arrived at 8:55 and they already had his room set up and the surgeon had just walked into his room. We were too late to give him one last kiss or see him one last time before he got his chest closed. :( We felt incredibly guilty about this. We kept reminding ourselves of how remarkable he is, but we just did not want him to be scared or feel alone. Dr. Chai ended up following us to the waiting room as we were directed away from his room- he explained the procedure would take approximately 30 minutes and is relatively straightforward.

At about 9:50 AM Dr. Chai came into the waiting room and told us the procedure was successful and there were no surprises or complications and that Caelin did awesome. This was another huge step that our little warrior triumphed over. We were allowed back in his room around 10:25 AM and Caelin looked great. His color was pretty good, he was sleeping comfortably, and his incision was stitched beautifully. His day continued this trend of positive recovery milestones. Caelin's on only 40% oxygen, he was completely taken off Epinephrine, his lactate is down to 0.8 from 11.1, his blood gasses were pushed back from being taken every 2 hours to every 4 hours, his chest tube is drying up, he is making the right amount of urine, his swelling is going down, and overall his statistics are looking great. He has been pretty heavily medicated all day to keep him comfortable and this has enabled his body to rest, which is what he needs. He tried to wake up at several different points and he stayed awake for a few minutes in some instances, but we tried to get him to go back to sleep because his body needs the rest.

We cannot express enough how proud we are of Caelin's strength, determination, resilience, and progress. He still has a very long unpredictable road with many hurdles to travel and over come, but he has already come so far so fast, we are confident he will continue to take the obstacles head on and overcome them- We have quickly observed that it is a big part of his personality. :)

Surgery and First Day of Recovery

Caelin left his room around 7:15 AM, began his surgery around 8:30 AM, and returned to his room around 1:00 PM on Wednesday, March 21st. Mommy and Daddy met with Dr. Chai and nurse Kara before going in to see Cael. They told us how well he did during the surgery and he did not experience any complications. The one concern was a slight arrhythmia, but that is a common response as the heart experiences a great deal of stress. But the arrhythmia has fixed itself and is no longer present!

Mommy, Daddy, and Auntie Sammy came into Cael's room around 3:30 PM to see him for the first time after his surgery. He was covered with a blanket from his toes to his neck. The nurse began to explain what each wire and tube was and what it did. Cael was completely sedated and immobile. After a little while, we took off the blanket to see the incision, chest tube, and everything else hooked up to his little body. We also saw the stitches keeping his skin closed where the incision was made. Although the skin is closed, the sternum (chest/ribcage) is still open to account for swelling and so the surgeon can reassess the heart on Friday. It was a surreal and difficult moment to see our little miracle, our little warrior, in such an intense yet helpless state. Immediately following surgery, all of his numbers were where the doctors wanted them.

Just before 5:00 PM his numbers began dropping significantly. This created concern among the nurses and doctors, so an order for an echocardiogram to look at the heart anatomy and physiology was placed immediately. Minutes later the echocardiologist came in with her machine and began the scan. Right away she noticed there was fluid surrounding his heart; she measured it and it was approximately 9 millimeters- which is a dangerous amount as it prevents the heart from pumping properly and completely. So the surgical assistant began manipulating the chest tube to remove as much fluid as possible. And after a few attempts she was successful at removing most of the fluid and heart function returned to normal while his stats increased simultaneously. It was incredibly unnerving yet reassuring to have so many doctors, surgeons, nurses and support staff in Caelin's room at one time. It was a signal that something was going wrong but that if anything needed to be done, there was someone who could do it. We are thankful that nearly every possible medical person was in his room wanting to help him. The on call Pediatric Critical Care Doctor chose to stay at the hospital over night just to watch Cael and be there in case there were any other scares or needed intervention.

After the pleural effusion (fluid around his heart), he had a pretty uneventful night for a 6 day old baby who just underwent one of the most complex and unpredictable heart surgeries, the Norwood Procedure. With the exception of a little low blood pressure, his stats continued to be within the desired range of someone in his condition. So thankfully, Mommy and Daddy were able to get a little bit of rest right alongside Caelin.

Today, his numbers/statistics continued to progress. His oxygen level dipped a little bit so they had to put him on more oxygen (80%) early in the morning, but by the evening he was back to 45% Oxygen. He received another blood transfusion which his body responded well to. This enabled the lowering of the level of the amount of Epinephrine (adrenaline/ a vasoconstrictor, increases cardiac output and in turn increases blood pressure) he was receiving. The lactate levels in his blood decreased from 11.1 to 1.8 which is now in the realm of where they want it to be. His body got a little swollen due to being on bypass during his surgery, but not as swollen as we had expected. Medically, those were the biggest changes. The nurses and doctors are going to keep doing what they are doing and helping Caelin recover as his body allows. But they all agree he is doing well for a baby who just came out of the Norwood surgery.

This morning Caelin woke up looking for Mommy and Daddy. He is on pain medication so he was comfortable and still quite groggy when he awoke, but he made eye contact to reassure us that he is our victorious powerful warrior. Mommy sang to him, Daddy hummed, and we both kissed him to remind him how proud we are to be his parents and how much he is loved. He also got the hiccups, which looked like the most incredibly painful hiccups in the world. While he cannot cry because he is intubated, he did shed his first few tears, which broke Mommy and Daddy's heart. The nurse gave him more pain medication while Mommy and Daddy sang to him and rubbed his head. The hiccups went away and as Caelin fell back asleep he began sucking on his intubation tube as if it were a binky... he must really miss that binky!

Caelin was lucky enough to not only have Mommy and Daddy here during this adverse time but also to have Sam, Danny, and Rachel visit him and shower him with love and positive energy.

Although the recovery process has just begun, Caelin is heading in the right direction and he is showing his strength and resilience in every way possible. We are so proud of him! Cael is currently resting up, preparing for another big day tomorrow as the surgeon will be closing his chest. It is a short procedure, but a continuation of the surgery and a big step toward the recovery process.

Thank you to everyone who has sent and continues to send their positive thoughts, energy, wishes, and prayers to Caelin and Mommy and Daddy.

Here is Caelin in a video we sent to Daddy while Daddy was at work:

Getting Ready for Surgery

Yesterday we posted about Caelin's heart surgery. Following that post, we got the results of his CT scan- everything was great and there was no bleeding. The doctor said on the initial ultrasound there was a bit of a bright spot and this often indicates bleeding/ a Germinal Matrix. She also said the ultrasound machines are not the greatest for diagnosing the bleeding, which is why they ordered a CT scan. So we were incredibly happy that his brain showed no signs of bleeding or ever having bled. So the surgery remained on schedule for Wednesday (this morning) at 7:00AM.

Last night Cael got weighed again and he was approximately 3409 grams which converts to approximately 7.51 pounds (most likely a little less because he had his cords connect to him and sometimes those add a little weight). He also got his second bath. Sean and I got to give him the bath this time! :) The first bath Sean helped the nurse and Caelin screamed pretty much the whole time. The second bath it was just Sean and I and Caelin at first did not like it but then ended up not minding it. :) He is such a good boy and he really responds well to Mommy and Daddy!

We did have quite the scare though yesterday- the IV in his hand was coming out. This is a big problem because his IV is what was supplying the prostaglandin to his body. The prostaglandin is the medication that was keeping his heart pumping. The nurse quickly called down the IV team to check it and they said it had to be replaced, that the risk was not worth trying to wait the extra 15 hours to see if it holds out (which we would agree with 100%). The IV team tried to put the IV in his right arm to give his left one a break, but after a few failed attempts, they had to go back to the right arm. The first one was in his hand and this second one was placed in his arm. The most amazing part of this whole process is that it probably lasted for a good 30 minutes before they were finished with connecting everything and Cael did not even scream. He made a couple whimpers in the beginning, but some sweeties and his binky cured that. We keep saying this, but our baby boy is an incredibly strong and resilient little guy who amazes us every minute.

Yesterday Mommy, Daddy, and Grandpa all got to spend some good quality time cuddling with Caelin. Mommy was the last to hold him- she was holding him from 10:45PM until around 12:45AM. At this time, the nurse came back in because it was time for Caelin to get blood drawn for his gases. He did a pretty good job managing the pain of the foot prick and then fell asleep. He slept from 1:30AM until 5:00 AM without a binky and without waking up once- we could not believe it! The nurse actually had to wake him up at 5:00 to draw blood for tests that needed to be done before his surgery. The two things he hates are: 1) Being woken up 2) Getting his diaper changed (even though he is not a big fan of a wet diaper either- he hates being changed more lol). So this morning, the nurse woke him up, changed his diaper and then they attempted to draw blood. They first tried in his arm.. it was a no go. Then they tried pricking his foot three times and the blood just would not come. At this point he is screaming bloody murder and is, for the first time, inconsolable- the sweeties did not even work. With these failed attempts, the nurse had to contact the more experienced IV/lab nurse. After Mommy and Daddy finally got him to calm down, the second lab nurse came to draw blood... :( Our poor guy was just not having it this morning. But luckily the second nurse was successful and Mommy and Daddy were able to take over consoling him when she was done. He needed another diaper, so Caelin held Mommy's finger while Mommy was cheek to cheek with him singing, "Mary Had a Little Lamb" and Daddy changed the diaper. Almost immediately Caelin stopped crying and did not mind Daddy changing his diaper. It was a great bonding moment for all three of us.

About an hour later he was taken into surgery and Mommy and Daddy gave him kisses and said their "See you laters." Caelin was sleeping and looked strong, ready for surgery.

HEART SURGERY

Today it was brought to my attention that the day and details of Caelin's heart surgery were not posted on here! Me being hard headed swore one of the updates had the information on it but when I read through the published posts, the information was not there. I clicked to edit the blog and part of the information was still there but did not "publish" to the blog. So I do apologize- but I definitely remembered writing it. Sean and I had been writing and editing different parts of the blog filling in different details. I am thinking that as we deleted and rewrote different parts of the post, the surgery part did not make it on.

So here is the news:

Caelin is going in for surgery tomorrow, Wednesday, March 21st. We found out over the weekend that this was the day they were planning for. The original surgeon was Dr. Jacobs but his schedule conflicted with this week so Cael's surgeon is going to be Dr. Chai. Dr. Chai came into Cael's room and went over all the details of the surgery. They will begin around 7AM and the surgery may take anywhere from 5-7 hours. Much of this time is dedicated to prepping. Around 6AM is when many nurses and doctors will be coming in and out to prepare Caelin. We will meet with Dr. Chai before he begins the surgery and then he will come talk to us right after he is finished. In between, there will be nurses coming out to give us updates. It is going to be an incredibly emotional day. We would be lying if we said we weren't terrified, but the doctors keep saying how optimistic they are because of how great Caelin is doing. The nurses keep commenting on how "pink" Caelin is. They are used to the babies being incredibly pale or blue/purple. They say his heart is over circulating for that of a hypoplast, which is a great sign for recovery after surgery. Also, the nurses and doctors are amazed at his levels of everything else (nutrients, blood, oxygen, etc) and at how well he uses his binky. Again, they say these are all excellent signs for recovery.

This morning Jen, the Cardiac Doctor's PA, came in to talk to Nikki about signing consent forms for the surgery. The official consent is for "Norwood and Aortopulmonary shunt and Transesophagel Echocardiogram." This is the first surgery of three to restructure his heart. The echocardiogram is essentially a little camera that they put inside his body at his heart so they can closely examine the heart before and after- as one last picture. He will also be getting his thymus removed because it is right in front of his heart and without it removed, the doctors would not be able to operate on his heart. We have chosen to have his Thymus donated for research instead of being discarded.

So sorry we didn't post this sooner!!!!! :/

Becoming Routine... But Not For Long.

Monday was a great day! The biggest news is Daddy had to go back to work and it was definitely not easy. But he was able to get Wednesday, Thursday, and Friday off, followed by break next week. With Cael, everything is relatively steady. His sugars were a little low, so they adjusted the levels in his TPN line (main nutrition) and he had to get another blood transfusion. Other than that, things are great! He is such a happy baby and has become quite talkative when he is awake. He spent a combined few hours awake today (at various times throughout the day). Grandpa also got to spend some time cuddling with him, as did Mommy! Daddy had a very busy day yesterday and arrived right after Caelin got his blood transfusion, so he (Cael) needed his rest. But Daddy is looking forward to lots and lots of cuddle time after school today.

Cael had an excellent night. He slept for a good amount of time and fussed minimally. He is such a good baby, we feel so blessed! The line they were drawing blood from quit drawing so they had to draw blood from his arm with a needle. Luckily, he was in a deep sleep and they gave him another taste of the sugar drip on his binky so he did not even move or make a peep when they stuck him with the needle and drew the blood! Mom was nervous and awaiting the scream but luckily, it never came! :)

Cael is scheduled for his CT scan to check on the Germinal Matrix today but we will not know what time until a little bit before hand. Since it is one on the "schedule," they do emergencies first and fill in the gaps with those scheduled. We plan to post the results of the CT scan later tonight, so be sure to check back!

Sunday... That's my fun day!

This morning the doctors did their rounds and gave us updates on Caelin: Cael's surgery is still planned to take place on Wednesday. The biggest news was his CT scan is planned for Tuesday and no blood transfusion today- his levels have been good since the one yesterday. Also, no breastfeeding. :( This upset Nikki... not just because she loves the bonding time with Caelin but because although Cael is getting the nutrition he needs, he still FEELS hungry. Luckily, until this point he has not been vocal about being hungry but our nurse, Carrie, told us he may get more vocal in the next day or two.

Nikki and Grandpa got to enjoy the whole day with Cael. Sean had to do some shopping for the week and take care of some things before returning to work tomorrow. Nikki got to spend over two hours holding and snuggling with Caelin this afternoon. He was utterly content in her arms and spent about twenty minutes wide awake staring into Mommy's eyes and observing the colorful lights on his monitors. He really did not make a peep until he became wet... really wet. Once a day he receives a dose of lasexs and the nurse said this would most likely go right through him and make him have heavy diapers. Heavy diaper, soaked swaddle blanket and drenched t-shirt on Mommy was more the case. Mommy didn't mind though; she was more concerned with Cael being wet and upset and getting cold. A fresh diaper and blanket for Cael and a fresh t-shirt for Mommy were quick remedies! :) ....Until it happened again, but this time it was in his bed and Daddy helped to dry Cael.

Caelin also got his first bath today! It wasn't a traditional bath because of all the lines. One of the nurses brought in soapy water and a sponge and washed Cael right in his bed. Daddy was excited because he got to help! Caelin, however, was not very excited... he was so mad! But it was good for him because he had lots of sticky residue left over from previous lines and it was making his skin stick together. Also, nurse Carrie gave him a very small taste of glucose (liquid sugar) on his binky but a small taste was all he needed. Instantly, his senses were stimulated and his crying ceased. Back to being a happy baby boy!

After his bath, he has just really been sleeping and making all sorts of cute faces. Even just watching him sleep makes us feel incredibly happy and proud. We have quickly discovered that there is NO better experience or feeling than that of parenthood.

P.S.

If you have not yet visited the website of all the photos from Baby Face Portraits, you need to do that because they are UNBELIEVABLE!! We are the first people to ever have a photographer in the OR at Bayfront Baby Place. Both the photography company and the hospital asked for our consent to use these pictures for future advertising. Go to http://www.mybabyfaceportraits.com/home.htm

Click sign in and enter the privacy code "Q04A-47018"
The pics truly are remarkable!!

Happy St. Patrick's Day!

We have all had a very busy first few days but things are great! Nikki was given permission to be discharged at 6:00 AM this morning but wanted to stay a little longer because she was feeling some pain and wanted easy access to Caelin's room during the day while having a place to go back to and rest. This ended up being a good decision because Caelin received his first blood transfusion and he needed some undisturbed rest afterward. So Nikki ended up asking to be officially discharged around 4:30PM. She is doing well; only on minor pain medication and iron supplements.

During rounds this morning, Dr. Decker and Dr. Pettigrew (Cardiologists in our unit) gave us updates on Caelin. They decided to go ahead with the blood transfusion because Caelin has had so much blood taken from him and not enough time to reproduce the amount they want. Also, the test results came back from one of the initial screens when Caelin was born- he had a very minor brain hemorrhage called a germinal matrix. Many babies are born with this and typically causes no concern in normal babies because it heals itself relatively quickly with no negative effects; however, since Cael is going to have open heart surgery tentatively on Wednesday, it can be a concern because he will be put on heparin, an anticoagulant, and bypass. With heparin and bypass, the hemorrhage could get worse or not clot, so a CT scan will be done before surgery to ensure the hemorrhage has healed itself as expected. The doctors are very confident that the hemorrhage is not a concern, but it may push surgery back a few days if it is not fully healed. Nikki was given permission to attempt to breastfeed once today. They are concerned with the acidity in his blood and therefore do not want to push the breastfeeding because it will require more energy from him and this would cause the acidic blood to move throughout his body more and absorbed into his muscles and organs at an increased rate. Additionally, with breastfeeding, more blood would be needed in the gut to digest the breast milk, which can strain the heart further. Also, when blood is restricted in the body one of the first things to have blood levels reduced is the gut, and if there is food to digest it can lead to further problems.

Since Nikki was discharged from the hospital and still not feeling 100%, she stayed the night at home. It was incredibly difficult for her to not be with Sean or Caelin at the hospital. The dogs were happy to see her and even looked for the baby when she got home. Nikki washed some blankets to bring to the hospital and while she was washing them, Louee went into Caelin's room and stared at the crib, whining. He came back out, looked at Nikki, whined, then went back into Caelin's room. He did this three times before Nikki closed the door to keep him out. After some tears before bed, she was able to get a solid 6 hours of rest with only waking up to pump her milk. Then it was back to the hospital in the early morning!

Sean and Caelin had a good night at the hospital. Caelin is a good boy and likes to sleep; he has really taken to a pacifier- We think him sucking his thumb in the womb made it easier and got him to liking being soothed that way.

Hope everyone had a fun and safe St. Patty's Day!

Our First Days as a Family

Upon birth, Sean was able to follow Caelin to the CVICU to be with him as they began setting him up with all his lines and running the necessary tests. An echocardiogram was done immediately in his room to confirm the diagnosis of Hypoplastic Left Heart Syndrome. There were no surprises on the echocardiogram and the doctors continued their evaluations. Sean stood by and watched as a team of 8-10 doctors and nurses worked to make sure Caelin was okay and to start him on the proper medications. Once all the initial IV's and monitors were attached, the doctors had Sean leave while they began their attempt to place an IV into Caelins umbilical cord to run the Prostaglandin medication, which keeps the valve in his heart open until surgery. While the doctors worked on Caelin, Sean went down to see Nikki for the first time since she was in the operating room getting sewn up. Caelin's Grandpa, Aunt Cassie, Great Aunt Keetha, and Great Great Aunt Angie all kept Nikki company while she began recovery.

After we ate dinner and Nikki began resting, Sean headed back up to be with Caelin. Although it was tough for Sean to leave Nikki after the surgery, Keith was with her so he knew she was in good hands. Around 11:00 PM the nurse said we would be able to hold Caelin, as he was progressing well. This was a wonderful surprise because up to this point, we were under the impression that we would not be able to hold him until after he is recovered from his surgery and many of the lines were off him. Sean sent Nikki a text message relaying the information so she could rest to prepare her body to hold him. Less than an hour later while Sean was trying to console him with his binky, the nurse asked him if he wanted to hold him. To his surprise and without any hesitation, Sean pulled up a chair. He took some pictures on his phone and sent them to Nikki to let her know their baby was doing great!

Friday morning at 1:30AM Nikki was feeling well enough to come upstairs to the CVICU to hold Caelin for the first time out of the operating room. Although it was difficult for Nikki to initially get out of bed into the wheel chair, her pain dissipated as she anticipated holding Caelin in her arms and kissing his cheeks. As she was holding him, he began to fuss and squirm. He was also turning his head constantly toward her chest and spitting out the binky. The nurse suggested that he recognized her scent and was wanting to breast feed. At this point, the doctor's said he would not be able to breast feed, so it was difficult for Nikki to know she had the ability to feed Caelin, and Caelin wanted to eat, but she was not allowed. But the rest of the early morning was full of joy as we both got to hold our son then get a little bit of sleep.

Each morning, all the doctors on the CVICU floor consult outside of each patient's room to discuss their progress, current medication levels, tests, and so on. The parents are invited to participate in these discussions. So at 8:30AM Sean came back down to get Nikki to be a part of the doctor consultation outside of Caelin's room. During this consultation, the doctors discussed how proud of his progress they were and mentioned the idea of breast feeding. Typically, babies with HLHS are not allowed to breast feed because of possible complications; however, as long as it is not stressful for him and the amount of time he feeds is restricted it can be beneficial. So in the late morning, Nikki was able to breastfeed for the first time. He latched on and even suckled for a little while- this bonding experience is one Nikki had been looking forward to since she found out she was pregnant.

The rest of the day progressed nicely- Grandpa was able to come up to the CVICU to visit and hold Caelin. A couple tears of joy strolled down Grandpa's face as Caelin was snuggled in his arms. Nikki was able to be mobile for a little on and off, was able to shower, and ended up getting her IV removed in the late afternoon/early evening. Caelin had a great Friday, too! And of course, Sean had a day full of love and happiness! :)

Caelin Steven Clingan 6lbs 14oz & 20 in @ 4:59

We arrived to the hospital at 9:45 PM on Wednesday, March 14th for Caelin's 10:00 scheduled induction to begin. We were quickly admitted and assigned room # LDR2. The room is incredibly spacious with an LG T.V., a pull out sofa, big windows, message board, and so on. Around 11 PM Dr. Cruz checked my cervix and did an ultrasound to see the baby's position. He was head down which was great news; however, my cervix was completely closed. At this time they decided to insert the first Misoprostol (Cytotec) pill to begin to ripen my cervix. Around 4:30 AM Dr. Cruz came back in to the room to check my cervix; she claimed I was one centimeter dilated but still very high and posterior. Although this meant I did not make much progress, she said I did not need another pill and that the Pitocin drip would begin around 6AM. At 5:50 my nurse, Jenna, began the low Pitocin dose. I was pretty nervous at this moment for the contractions and pain to begin but they were not as bad as I had imagined them being. After being on Pitocin for almost 4 hours, a different Resident came in to check my cervix. My cervix had made absolutely no progress and although I was experiencing contractions, was no where near labor. At this point the nurse and Resident contacted Dr. Helfgott (our Physician/Perinatologist) and he instructed them to take me off the Pitocin to try another round of Cytotec. At 10:00AM my new nurse, Gail, inserted the second Cytotec pill and we hoped I would progress. I was still contracting, but rarely felt them. Then around 12:50 Dr. Helfgott arrived to check my progress for himself to be sure he knew exactly how ready or not ready I was. As he was checking he himself felt I had made no progress and that my cervix simply may not be ready for delivery. At this point we began discussing different options. I broke down because I was 90% sure before this moment that we were going to have to resort to a C-Section. (For everyone who we are close with, you know how much I had my heart set on a vaginal birth so I would be able to hold my son and get as many pictures as possible with him before being rushed to the CVICU and unable to hold him.) So the different options were: 1) We try a 3rd dose of Cytotec and hope it works 2) We try a 3rd dose of Cytotec and it does not work, which at this point they would consider it a failed induction and we would have two options: to come back to the hospital a week later and retry an inductions or do a Caesarian Section Saturday morning around 9AM. Continued from yesterday... (Dr. Helgott came into the room when I was creating this post) 3) Skip the last dose of Cytotec and plan for a Caesarian in the afternoon. Dr. Helfgott left the room and left the decision up to us. He said he would return at 2PM to discuss which option we had selected and answer any more questions.

After much contemplation, quite a few tears, and a long conversation between Sean and I, we decided to go with the C-Section this afternoon. We went with this option because the nurse and doctor Helgott were incredibly reassuring and compassionate towards my major concerns and fears with a C-Section: 1) I would not be able to hold my son because my arm movement would be restricted 2) We would not be able to take many, if any, photographs of us holding our son. We knew there would be a ton of nurses and team members in the room because of his condition and we were not sure if there would be time or someone available to snap a family photo of us because my Dad would not be allowed in the operating room. They said they would do everything in their power to make sure I am able to hold my son and get the pictures I wanted. My nurse, Gail, even offered to contact a hospital photographer who takes pictures of the new babies and families once they are delivered and in the Mommy & Baby Wing. Gail was able to get in touch with Jenny, the photographer, and ask her how she would feel about taking photographs in the O.R. during and after the procedure. After speaking to her supervisor, Jenny said she would love to take the photographs! All of a sudden, most of my fear subsided and excitement overwhelmed me (it did for Sean, too).

So the surgery was unbelievable (in a good way :) ). When it was time, Gail came to get me out of the delivery room and walk me to the O.R. Cassie and my Dad went toward the waiting area to be with Keetha and Angie while Sean dropped our personal belongings off and then waited to me to be prepped so he could sit right next to me in during the operation. For the surgery, I walked into this white room with two tables and a bunch of machines- it really was a scene from out a television show (this was the first time I had ever seen an operating room). The first thing they did was give me a spinal block to numb my body from the bust down. Almost instantly I felt my toes getting tingly and numb. Then, they laid me down, hooked me up to a blood pressure machine, put a thermometer strip on my forehead and chest, checked my I.V. liquids, put up the curtain and finished preparing my body for surgery. They also gave me medication for nausea because I started feeling sick fromThe entire nursing and supporting staff were wonderful! I could not have asked for a more compassionate, understanding, trustworthy, and knowledgable group. Just as I was asking for Sean, the nurses finished the prepping and in he came! He sat to my left and held my hand the whole time. I did really feel anything- not even too much tugging or pushing/pulling. When he was just about to make his entrance, the nurses told Sean to stand up and he could watch Caelin come out! :) This moment was completely consuming! He loved watching him come out and started describing him to me (he came out peeing! hahaha). Doctor Helfgott then showed him to me over the curtain and the nurses took him to the back of the room to clean him up, weigh him, and check to make sure everything looked good. I could hear him crying but it did not sound very loud. I said, "I thought his cry would be louder." And the nurses and doctor Helfgott replied, "That's a real loud cry! (and they chuckled)" The nurses even said that was one of the loudest they had heard all day... I guess my ears were a little muffled. lol After I heard he was 6 pounds 14 ounces and born at 4:59P.M. they brought him over to me to hold! I started crying, I was so overcome with joy, excitement, and amazement. The photographer was snapping all kinds of photos- it was THE BEST MOMENT OF MINE AND SEAN'S LIFE. I got to hold him for what felt like an eternity because I had waited so long and had prepared myself for the disappointment of not being able to hold him (it was probably close to 10 minutes which was the best 10 minutes of my life).