Monday, November 19, 2012
His body is healing well. We saw the cardiologist last week. His incision looks good. There are still some stitches that need to come out. Unfortunately, Tim and I are to do it! He said not to be surprised if the one that is still there is 2 inches long! YIKES! It is possible to get an infection from the stitch, which is why he wants us to work on it.
He also expressed to us, that he wasn't on the same page as the surgeon, as far as the repair was handled.
He understands, the surgeon kept the pulmonary valve in tact, because that is the BEST case scenario. It usually means that no further surgeries are needed. However, it is only best case, if the PV grows with Iain's heart.
The surgeon removed muscle below the valve, but did not in fact WIDEN the PV. Since birth, Iain's PV has narrowed, which is why our cardiologist is concerned.
It isn't something that we will know anytime soon. Dr. Consevage will continue to keep an eye on the PV with regular Echo Cardiograms. Iain will have a lifetime of seeing a cardiologist.
Iain is still having difficulty sleeping. During the day, we are lucky if he will sleep for 45 minutes at at time. At night he is up at 11:00, 1:00, 4:00 and then at random times crying between 5:00 and 8:00. Tim and I are both very tired. We don't know WHY he is waking up, which is a bit frustrating.
Please pray that God continues to provide us with energy to get through these days!
Monday, November 12, 2012
Iain is doing so well, these days. This past weekend, we stopped all pain meds and he's not showing any signs of pain. We are so thankful that he is healing so well!
His incision is looking good. He still has some puffiness and his chest isn't flat. But the incision is already fading. We have heard that as he grows, that incision will be come less and less obvious. A huge benefit to the the quick healing of little babies!!
We have another check up tomorrow, but last weigh in, he was 13 lbs 4 oz. I'm expecting to be close to 15 lbs!! He's getting heavy, but we are thankful that he's gaining weight.
It's hard not to compare each child's milestones, so I'm trying to keep all my expectations low. His neck is getting stronger every day. We are limited in what he is able to do. No tummy time for a few more weeks. I think this has affected his development, but I don't think there will be long term effects.
What the Doctors have said so far, is baring anything unexpected, Iain will most likely NEVER need surgery on his heart again!! We are so thankful for this outcome.
Our hearts of full of thankfulness for God's kindness in Iain's life!
Tuesday, October 30, 2012
Tim started back to both jobs 7 days ago. He has been so kind and gracious, giving me so much help when he is home. I wouldn't have made it the last two weeks without him by my side at the hospital and at home!! Thanks babe, I know you are exhausted!!!
I don't think I've been this tired, since Nora was born and in the NICU!!
Iain came home with his schedule a complete mess. He was used to the nurses coming and going and even the nurses shift change! He was waking, even though there was no reason to wake. We thought it was comical that he was waking, looking for his nurses. :) I would have done the same if I'd had Meg and Lauren each night and day!!
We came home with a strict Tylenol schedule of every 4 hours. Tim and I were amazed that was all he was on for pain. All the Drs. and Nurses said this is how amazing little bodies are. I don't know what we expected, but we didn't expect Iain to be crying and inconsolable every waking hour. As it was happening, it made sense to us, he was in pain! We did our best to comfort him. He was eating constantly, sometimes 1 oz. sometime 5 oz. There was no rhyme or reason to any part of his sleeping and eating schedule.
In the evening of our first full day home, I went to give Iain a bath. At this point, I noticed that he had spots all over his body. By morning, he had them head to toe. I took him to our family Dr. She was pretty sure that it was an allergic reaction to the Lasix (meds to keep fluid from building around the heart), so she called Penny at Hershey Med. They agreed, so they took him off the Lasix and started him on 5 days of steroids After 2 days of steroids the rash had disappeared. Those 3 days of the reaction were THE worst. Poor Iain was uncomfortable from itching AND pain. It was heartbreaking.
|Iain at the Doctors for his Rash|
Each day, I thought maybe he just needed one more day. I have talked with other parents of babies that have had OHS and they all claimed the same problems. It seems to be a pretty normal response to OHS.
Finally, 5 days after getting home (Saturday) I couldn't take seeing him in this much pain anymore. I called Hershey Med, but didn't get much help being it was an evening on a weekend. So, then I called our Cardiologist. We decided it was best to start giving him Motrin along with the Tylenol. So, we started Motrin/Tylenol schedule every 3 hours. It took about 24 hours, but it has made a CLEAR difference in Iain.
He still isn't sleeping much, day or night. BUT he is spending much less time screaming.
Last night, he actually had a 4 hours stretch of sleep...which meant that I had a 3 hour uninterrupted stretch!
We are still in survival mode. Our days are completely dependent on how Iain is doing.
Hurricane Sandy postponed his Cardiologist appointment, so we don't go until tomorrow. Hopefully, we will have only good news!
Thank you so much for your continued prayers and support!! We are so thankful for the frozen meals we received. We are thankful that my parents kept the girls overnight for us and that Matthew and Janelle watched Iain so we could go out for a few hours!!!
Thanks to our marvelous neighbors! Susan saw and heard Iain on one of our worst days and brought us a hot, yummy meal. Thanks to Jacob who mowed and raked our leaves!!!!
We are so thankful for our family, church family and wonderful friends and neighbors. God has been so gracious to us!!
|9 days post op|
|His incision is healing well!|
Thursday, October 25, 2012
This past week was difficult. One of the most difficult in our years together.
Tim & I are so thankful that Rachel Lynn & Hannah were here to care for Nora & Elise. She dropped everything in WV & jumped in the car with a one year old to be here with just about 15 hours of notice!!
Her being here allowed Tim & I to stay at the hospital with Iain the entire time. We knew our girls were in good hands! She even packed up all three girls regularly to bring the girls to see us in the hospital!!
Rachel, thank you so much for all you did to serve us!! We are so thankful!
Steven, thank you for lending your girls to us!
We were sad to say goodbye. We didn't get enough time to just be together!
We love you!
Here are a few picks I was able to grab of my adorable niece!! Love you Hannah!
Today is day 8 post OP & our 3rd day home.
Yesterday I had to take Iain to the family Dr. due to a rash that is covering his body.
Turns out that he is probably having an allergic reaction to the Lasix. (the med that helps keep fluids from building around his heart).
So, our family Dr. called Penny, the nurse practitioner that works with Iains surgeon. She said to take him off the Lasix & start him on steroids.
So far the rash appears a bit lighter after one dose.
He seems very uncomfortable. The last two nights have been rough as he is up crying quite a bit.
Last night he seemed to want to eat every two hours or so. I'm wondering if he is using it for comfort.
He also seems to be in pain regularly. It's pretty obvious when the Tylenol is wearing off. He thrashes around, whimpers & cries pretty hard before the next dosage is due.
Please pray for his comfort as his little body continues to heal.
Monday, October 22, 2012
He needs to have 3cc's (I think it's CC's, not MLs) or less fluid collected in an 8 hour period. This needs to happen for at least two shifts (so 16 hrs).
So far he hasn't done that for even one 8 hour shift.
Last night he had almost 6 cc's, so almost double what they are looking for.
Penny (the Nurse Practioner that works with our surgeon) decided to stop the suction for 7.5 hrs, then suction for only 30 minutes and then measure the collection. Evidently, just having the suction running can sometime cause more fluid, so we'll see if this makes a difference.
We aren't sure if they INSIST on having 2 shifts consecutively or not.
So, we are basically waiting. We don't want to have a situation where we are re-admitted because Iain is having problems, so we are content to wait it out.
We are bored and each day/night is more and more tiring!! Our own bed is going to feel amazing!!
Thank you for your continued prayers for our little boy. He is in good spirits, usually smiling for all visitors!
Our nurses love him to death! We had our day nurse for 3 days, because she requested him. She loved him and we could tell by the care she was giving him AND us!! She gave me two hugs when she left yesterday, because she's off for 4 days now and won't see us again.
Here's Iain with our favorite Day nurse...Lauren.
|Meg - our favorite Night nurse!! We also had her for 3 nights!!!|
Sunday, October 21, 2012
Iain had a great night. He is eating about 2oz. every 3 hours. His blood sugar has been good & he seems pretty comfortable.
We were told yesterday to expect to go home today, but we are here another night.
The cardiologist said there is just too much fluid coming from his heart. So we are staying another night.
We are hopeful that we can go home tomorrow. We are both really tired & ready to sleep in our own bed.
Iain is doing really well. He doesn't seem to be in much pain, which is crazy & amazing!!
Saturday, October 20, 2012
They are taking him off the D10 (sugar water) and allowing him to eat on demand and as much add he wants. They will check his sugar this evening and are looking for it to stay over 60, which it has been.
They also decided they want his port in another day to drain. I think that's the main reason we are staying another night.
Iain is getting Lasix orally to see how he will tolerate it at home.
Another day of waiting. We are ready to take Iain home.
Iain has pretty much slept in between feedings since 7PM last night! Thank you for your prayers, they are working!!
The Cardio Resident was just in to see Iain. He is looking good, his respirations are good, he's finally sleeping and pain seems to be under control.
BUT, he seems to be having a problem with his sugar levels. The past 16 hrs or so his sugar has been low. They like it to be around 100 the last three readings were 77, 73 and now 66.
They were hoping to ween him off his sugar water, but it's staying till they can figure out what's going on. They will probably start condensing his formula to see if that helps. Basically, his body isn't getting enough calories.
Not sure what this means, but I'm guessing it will postpone the idea of us getting out of here today. I'm guessing we are here till tomorrow, unless his sugars come up pretty quickly today.
The Dr. said he'll be back in around 10 to check him out.
Thank you for your continued prayers. Tim and I are doing well. Definitely feeling tired as each night hear it seems to get harder and harder to sleep. The headaches are setting in and the caffeine is working less and less! :)
We have been so amazed by our care here at PSU Hershey Med. From the volunteers at Ronald McDonald Family Room, to the Drs. and Nurses. Seriously, we haven't had ONE uncomfortable or bad scenario with Iain's care. They have all been amazing.
Iain is a hit in the PICU & PIMU. The nurses are swooning over him and love his little face and all his smiles. Other nurses are even stopping by to see him, just based on what his nurses tell them!
We are so thankful for the gift of this hospital. We know for certain that God led us in the right decision to be here. We are amazed daily by stories of Iain's surgeon. He seems to be a well liked man who does amazing things for little hearts.
Pray for him as he heads to Ecuador on Monday to fix little hearts!!! Pray for many successful surgeries and that the team is able to fix MANY hearts and save many lives!
|Iain & Dr. Myers! So Thankful that God has given this man a skill and gift to repair such little hearts!!!!|
Friday, October 19, 2012
So, now Iain is fighting sleep as most newborns do when they are overly tired.
Pray he can get a few hours of sleep this afternoon.
UPDATE: Iain hasn't' slept in almost 12 hours now. So, we've decided to give Iain Fentanyl with his next Tylenol dosage. After an hour of fighting even that, he finally fell asleep.
Our room neighbor is very sick and he and his family are VERY loud. It's been really hard for Iain to STAY asleep.
He's finally asleep now for about 45 minutes. He's stirring a bit, so, I'm sitting here, just hoping he stays asleep for a few hours.
Please pray that he sleeps, so that he can heal and doesn't waste so much energy burning calories.
Iain was moved to intermediary care today. When we walked in, he was very upset & unconscionable.
He had thrown up his last two feeds, so he is obviously hungry.
Penny, his cardio nurse practitioner that works directly with Dr. Myers, was in. She asked that he get more pain meds. Rather than doing "as needed", he will now be getting them every 4 hours.
Hopefully, this will settle him & allow him to keep his food in his belly.
He has lost a little weight. So this is just a little step backwards.
He had a very unhappy echocardiogram! He just screamed & screamed!! Then after about 15 minutes of screaming we thought "TV!!" He settled down to a little Mickey Mouse Clubhouse & is mesmerized currently!!
Please pray the meds make him more comfortable & that he keeps his food in his belly.
Thursday, October 18, 2012
|Dr. Myers & Iain!!|
|I finally got to hold him!|
Wednesday, October 17, 2012
We were so very thankful to see our friends and family gather around us today. Cameron and Kristen showed up, bright an early around 5:40 AM!! They came and saw Iain, just as Tim and I were waiting for the Anesthesiologist to come take Iain to the OR.
We walked to the OR doors and handed our little baby over, needing to completely trust that God chose these Doctors specifically for this day, for this surgery, for OUR Iain.
Handing him over, was emotional and VERY difficult for us both.
We headed to the Main Floor Family Lounge to grab coffee and saw that Iain was in the OR at 7:03AM.
Janelle walked in about that time! Shortly afterwards, Mom and Dad showed up. We sat around with our Starbucks, anticipating a day that would be long, but would be full of great things for Iain.
Around 8:00 AM, we headed up to the 7th floor Ronald McDonald Family Room. Here is where our day (and the days to come will be) was spent.
Soon, this room was pretty full! Add Joel, Kayla and Liz. Then add, Deb Bell, Ben Kreps, Beth Mellinger and Tina Brumagen! We were surrounded by folks that love and pray for our little Iain.
During this time, Warren, the Peds Social Worker was talking with us. Showing us around, giving us a tour of the PICU. He took us to Iain's bed, which turned out to be ONE of TWO private rooms in the PICU!! We were astounded and grateful that we had a little bit of privacy! Warren was great! He fit right in with our rowdy group.
We met Iain's first Nurse, Misty. She is so sweet and kind. She told us what to expect and helped us prepare for what we were about to see.
Soon, Warren was back in the family room with thumbs up! Iain was doing GREAT, Dr. Myers said that it was boring down there. Evidently a boring OR, is a GOOD OR.
My family and our friends kept us busy and laughing. The Volunteer even took a picture of it all! :)
Soon, Dr. Myers was standing in the door to discuss the surgery. UNEXPECTED, WONDERFUL news! While he previously thought he would have to completely remove Iain's Pulmonary Valve, he DID NOT do this!!! There is a bit of stenosis (stiffness of the muscle in the valve) and only time will tell, BUT there is a GREAT chance that Iain will never need surgery again!! We walked into this fully expecting this to be the first of a few surgeries in his lifetime. (This was stated by the surgeon as recent at Monday!) God is so gracious and kind to give Iain the BEST case scenario when everything was pointing towards the worst case scenario!
Dad prayed a prayer of thanksgiving to God for his kindness, then we all headed to the hallway to greet Iain as he came from the OR and headed to the PICU. Iain was greeted with 12 people!! :) It was great! We caught a quick glimpse of him as he was whisked away.
All tensions eased after that. We sat and waited for about another 40 minutes while he was prepped for his new home for the next few days.
We all then took turns seeing him. It was so hard to see him on a breathing tube. He was trying to wake up and looked at us with half open eyes. It was heartbreaking and most of us ended up with teary eyes.
The evening came quickly as we had more visitors. Sarah Cope (a close friend of Cameron and Kristen who has undergone heart surgeries by the SAME Surgeon in her own life) came by with an adorable stuffed elephant!! We have been so thankful for her kindness as we walked through these last few months. Thanks for being so open with us about your own experiences Sarah!
Soon, Rachel Lynn came with ALL three girls! We took Nora and Elise into see Iain. They both went twice while they were here. Nora got emotional at the idea of leaving him here, but put on her brave face as they headed home. Hannah had us all in smiles in the waiting area.
We spent the late afternoon and evening taking friends and family back to see Iain. Donna, Rachel and Abigail got to see him. Matt Wolfgang stopped by and visited with Iain. Then Brian, Em, Ella and Harper came and spent some time with us.
Around 9:00 Tim and I finally got some time with JUST us and Iain. We just sat with him for about an hour, watching him sleep, then cry, then sleep and cry some more. It is SOOOO hard to watch him lie there, helpless, in pain, hungry and to do nothing for him!! :( We just want to pick him up and comfort him. I can't wait to do that and hope that day comes again soon!!!
We are sitting here in the family lounge, ready to fall asleep for at least a few hours.
We are so thankful to God for making this a day full of successes! He has been gracious and kind to us. He has worked a miracle in little Iain's heart and we can't wait to see all that God has in store for this little man of ours.
Thank you for all your support here, on facebook, through texts and phone calls! Thank You Deb for a wonderful lunch and Tina for the awesome variety of snacks!
Thank you to all our family that made time in their day to be with us! We love you all and are thankful to have you with us as we continue this journey.
Iain is out of surgery. It went better than expected! They were expecting to need to remove the pulmonary valve, but they were able to keep it!! This could mean no surgery the rest of his life!!!
He is still intubated & his blood pressure is high. So we are waiting for that improvement.
They have extubated Iain! He is in an oxygen tent, probably till tomorrow.
His BP normalized.
He is doing SO much better than expected, basically textbook s
We are waiting in the Ronald McDonald family room.
We are so thankful that my family is here, keeping us distracted.
Warren, the social worker showed us where Iain will be in PICU. HE GETS ONE OF TWO private rooms. We are SO thankful for this!!
Tim & I are still nervous & just waiting. Time is just crawling.
It's 5:10AM & we are headed to Penn State/Hershey Med.
We slept about 4 hours.
Iain is doing well, but showing signs of hunger, because he isn't allowed to eat. Please pray for his comfort.
Monday, October 15, 2012
We had our normal Cardiologist appointment today. We went anticipating that surgery would be scheduled for the end of October or beginning on November.
Iain's Oxygen Saturation was 95% and he's been experiencing blue coloration around his mouth when he cries and eats. These together is a sign that things aren't going well and it's time to schedule surgery.
Our Dr. called the Surgeon (Dr. Myers) in the off chance he was in his office. He WAS! Dr. Consevege asked Dr. Myers for a surgery date sometime next week. Well, Dr. Myers is headed to South America to do surgeries there for the next two weeks!
Dr. Consevege was uncomfortable waiting the two weeks, so they moved some things around and are getting Iain in on Wednesday, October 17th.
We were a bit stunned. We knew this day was coming, but didn't anticipate such short notice. (Dr. Consevege didn't anticipate this short notice either)
They sent us to Hershey Med today. We met with Dr. Myers, who went over the surgery again. Based on the last echo cardiogram, he doesn't think he will be able to save the pulmonary valve. Most likely he will have to remove the valve entirely and put on a patch. This isn't the BEST option for Tet of Fallot, but what is necessary when the Pulmonary Valve is so small. What this means is that Iain will probably have more surgeries later in life (teens and later as an adult).
We met with an anesthesiologist and Iain had blood work and x-rays done today as well.
We have to be at Hershey Med at 5:30 AM, surgery should start around 7:00 AM and hopefully will be done by 12:00. We will get to see him briefly as he is transported from the OR Recovery to the PICU. Then, they will need about 45 minutes in the PICU. We will finally be able to be with him, probably sometime around 1:00.
We are still wrapping our brains around all this. Thankfully, Rachel is coming from WV to watch the girls all week! So, no schedules or driving the girls around!! Thank you Rachel!!
We would LOVE to have visitors during the surgery. It would be great to keep our minds somewhat distracted.
Iain is allowed visitors as well. We anticipate being there for about 5 days.
Tim and I plan on being there as much as possible. The first few days, we will sleep in the Family Lounge while Iain is in the PICU. Once he is moved to intermediary care, we should be able to sleep in Iain's room.
If you come to visit Iain or Tim and I, we will be on the 7th Floor at Hershey Med. During surgery, you will probably find us in the 7th Floor Family Lounge or at the Starbucks on the main floor. You can also call Tim or my Cell Phone if you can't find us. Tim - 717-723-9342. Nic - 717-831-8632.
Please consider if you have been sick or around anyone with something contagious!
Please pray with us, as we pray for skill and wisdom in the surgeons hand. Pray that Iain would recover well and that he would respond well to all anesthesia and medications!
Pray that Tim and I would have full confidence and faith that God is in control. That God is protecting this little life.
Check here for updates during surgery and while Iain is recovering!
Thursday, October 4, 2012
Nora ALSO had an appointment. She was born with a hole and a murmur. We were waiting to see if it had closed. Thankfully, it has! She will no longer need to see the Cardiologist! YAY, the murmur AND the hole is gone!!
Monday, October 1, 2012
Wednesday, September 26, 2012
It's amazing to me how differently I'm parenting Iain already! It's not out of guilt or fear. I'm just making different choices!
But, I have to say that I'm loving it! I'm taking more time to just sit and enjoy him. I don't typically let him "cry it out". I check on him constantly when he's sleeping. I allow him to fall asleep in my arms on a regular basis.
I'm also preparing my dear husband and children, that when we come back from Iain's open heart surgery, you can bet I'm going to do nothing but hold and comfort him!!!
I think it helps that he's an easy baby. Even though I let him sleep in my arms, he still sleeps in his bassinet, crib or bouncy seat. He's pretty easy to please.
I may pay the consequences later, he may no longer be an easy baby by then. He may be set in his ways, ways that will not be convenient to THIS Mommy. The housework can wait, because I'm really enjoying coddling my little boy!
Thursday, September 20, 2012
Today was a GREAT Cardiologist appointment! His Oxygen Saturation was 98%! 2% higher than it was at our last visit. I'm very excited, because I had been afraid we were trending down!
They did an Echo again today (5th one since birth!). Everything is looking about the same as last time, so the Propranol is working! We are so thankful for this God given medication!!!
Dr. Consevege said today that the plan is to go about 3 more weeks, then schedule the surgery. So, we are now looking at about the end of October or beginning of November for surgery. He'd like to do it before it become an emergency situation. So far, Iain's doing so well!
Here's a few pictures, he is now 8 weeks old, 11 lbs. 3 oz. and 23 inches long!