6.13.2010

Four Surgeries in Five Days

Yes- wowzers. Praise the Lord we have a little fighter on our hands.

So far, Cohen has been through a LOT. I can't believe he is only 6 days old. I've not even held him as many times as he has had surgery. I've held him once and in the past 5 days, he has had 4 surgeries.

We are hoping he has a few peaceful days and then maybe they can close his little chest.

As a refresher:

Cohen was born at 8:55am on Monday. His birthday is June 7, 2010. That is also known as 6-7-10. I just wanted to say it a few times since I hadn't yet;) I honestly didn't realize today was Saturday (well now Sunday) until a few hours ago. He was 7 pounds and 6 ounces and 20 inches long. He looks bigger...to most people who have seen him. The nurses tell us he has big feet and long fingers. I think his hair grows daily. His sideburns and the hair on his shoulders are both hilariously cute.

Monday afternoon - He was born with a smooth delivery and taken to the NICU. He even got to meet the friends and family on the way. He remained at Parkland (where he was born) for a few hours). He then headed to Children's. First though, he stopped by my hospital room for me to hold him :) He came over to Children's where he was hooked up to monitors and intubated. His daddy stayed the night with him as I was still in the hospital. Cohen got his first little bath and Brent took some video. It pretty much melts my heart. (make sure you listen to volume)







Tuesday - I got to come see Cohen for a few hours at Children's. He had a lot of tests run and by the end of the day they were thinking he may need to go into surgery that night. I found this out and it was pretty miserable being at a different hospital. The doctors decided to hold off and go ahead and do a heart cath. The heart cath went good and they were able to get some questions answered about Cohen's heart. They decided Wednesday would probably be the day for his BT Shunt and TAPVR repair and they went forward with the heart cath on Tuesday night.

Wednesday - He was stable and getting tests run for his surgery. His little foot and leg had an issue with circulation due to the heart cath procedure.They couldn't find a pulse in one of his feet. It was purple. Finally, they did get a pulse via doppler and were able not to be quite as concerned but to keep an eye on it. I got to come to Children's in the morning thinking his surgery would be a little after lunch. It was a hard few hours watching him, talking to him and thinking about him going into a big surgery and having just had a surgery the night before. He went into surgery on Wednesday about 3:30pm and you can read more about those updates HERE. The doctor was able to accomplish what he was wanting. The shunt has been working properly as well as the repair of the arteries. Everything else just needs to work now, along with them : /


(after BT Shunt & TAPVR repair)

Wednesday night - He did good most of the night but early morning he started having Atrial Tachycardia. His little heart got up to about 300 beats per minute and they basically had to save his little life with manual pumping and CPR. Scary morning and you can read more about that HERE. This incident set him back majorly the doctor informed us. I think it was around this time when part of his lung also collapsed. They have said this really isn't a big deal though, and it will repair. It's also probably because he is on a vent so his lungs haven't been having to work as they normally would.

Thursday - he did pretty good during the day and night. He had several medications added early morning because of the Atrial Tachycardia incident. It was Thursday morning when we met with the doctor and he told us that out of about 19 babies in the cardiac ICU, our baby was the sickest...also the terms "dodging a bullet" and "not out of the woods" were things we learned to come to reality with.

Friday - His vitals started having some troubles staying where they needed to be. His pressures were off and the doctor did not feel comfortable with what was going on. They decided to take him into surgery and wash out the fluid building up around his heart. Since his chest was already open, they could see where the build up was. They were concerned there could have been a clot under the heart. It is imperative that he not get a clot where the shunt is. He is on Heparin to hopefully prevent this. Dr.Forbess said he was glad he did the surgery and he was able to remove a lot of fluid in the wash that would hopefully help some issues going on. I've had several people email and ask about his meds and such. He is on a LOT. If you want specific details, email me and I can let you know. As I've mentioned before, Brent is amazing at learning and knowing all of this stuff. He carries around a spiral notebook and writes down some vitals when we want to monitor and ask questions. He writes when we have questions about anything and he writes a lot of the things that we hear from the nurses and doctors. The staff encourages us to do this so we know what is going on. Anytime something happens, they tell us and ask us if we have questions about it.

The staff has been wonderful to us here at Children's.

Friday evening - Things were still a little shaky because of the recent surgery and them trying to regulate things. It's a constant game of increasing drips (meds) and decreasing in order to get the vitals where they want them. Brent and I decided we wanted to be back in his room with him Friday night. We hadn't stayed in the room during the night yet because things had been so hectic. Well, let me tell you, my anxiety was through the roof. I just had a bad feeling. Sure enough, through the night, the nurses and doctors just kept having issues. Cohen wouldn't tinkle. He was on lasix and still nothing was happening. The staff became concerned that something was going on with his kidneys.

About 9am Saturday, the doctors decided he needed to go into surgery in order to have peritoneal catheter put it. They determined that more than likely, there was fluid around the kidneys making them too tight to work properly. I was a mess before surgery when talking to the doctors. They basically told us with low pressure (which he had for a good 12 hours), the kidneys are the first thing to shut down. This catheter is meant to drain the fluid around the kidneys so that they can start working and he will start to tinkle. They told us that for Cohen to have a chance, his kidneys would have to kick in. If the urine output doesn't improve in 24-48 hours, they will have to do dialysis. I asked if he can recover from dialysis. Doctor said he could but he would pretty much need nothing else to go wrong during (I believe) the dialysis.

The also told us the ECMO machine wasn't really a viable option anymore.

He wasn't really stable before the surgery today, but the doctor said as soon as they began, he kind of got to where he needed to be. He did get a little bit of SVT during surgery but snapped out quickly. He made it through the surgery and most of his vitals have been good. His pressure if at a pretty good point right now. The urine output is still not where they want it to be but the new cath is pulling out a lot of fluid around the kidneys. We hope it keeps doing this and then the urine will hopefully start to come. He is having bouts of acidosis. His heart is working too hard to get oxygen other places when it doesn't really need to. They have come down on some of his meds and his oxygen level in the past few hours so those things are good things.

So, now we are pretty much waiting and praying.

Poor little guy. I'm sure my description of all of this does not even compare to what it actually entails as far as the actual procedures and what Cohen is having to go through :(

Brent and I are full of emotions. Constant doctors approaching us tell us ALL kind of things. We can basically sit and watch doctors and nurses evaluate and adjust things with Cohen all day. We don't. We can't. We watch a lot but we would go crazy if we did sit by his side 24/7. Though I want to be by his side, he needs the doctors and nurses more right now. I still get to see him, talk to him and touch him anytime I want...minus the 15 +hours of his life he has spent in surgery.

So, we are having staff tell us a surgery may be approaching sometimes only 30 minutes before. How amazing to have a staff so ready to always be doing what needs to be done. It's a huge blessing for Cohen. We are waiting in waiting rooms for hourly phone calls during surgery. Then, we wait for the doctors to come out from surgeries to let us know how they went. We are on the edge of our seats every time we hear a footstep or a door crack. We have had to run down hallways to get to doctors waiting to talk to us. We have Chaplains, Priests, etc meeting to talk with us. It is 100% minute by minute with our little baby and it is the most uneasy feeling in the world. We know he is in good hands here at Children's. He is also in the good hands of God. God does have a plan and though the waiting is miserable, there is some reason. The waiting hurts. Thank God Cohen has been such a trooper. I don't care how unbelievably scared we have been within seconds of feeling a little peace, it's all worth it. I know I come off as being strong but I promise you I have many moments were I'm not. I can't count all the moments this week. Is my baby going to make it through the hour? ICK!

Lots of people have emailed and texted and asked how I am doing. I kind of described that above. I'm about as good as I can be. I'm happy to be by my baby all the time but just sad for all he is having to go through. I'm still having lots of the burning c-section pain as my nerves, tissue, etc heals. I had really been slacking on my pain meds but I've now been trying to stay on top of them. I'm not use to not showering everyday...and sleeping in a waiting room...in my flip flops... in a recliner. At least Brent is in a recliner on one side of me and my mom is in one on the other. I feel a bit bad about neglecting emails, calls, etc.. but I figure most people will understand. I do appreciate them.

{these pictures were taken on Wednesday before surgery) Cohen holding mom's finger



As I type this, I saw two doctors running by. I said I didn't like it and Brent jumped out and ran out to make sure it wasn't Cohen. It wasn't. He is doing good. However, his lactic acid levels need to stop going up and he needs to tinkle! They are going to call us in the waiting room with any major changes. Hopefully there won't be any.

As soon as I find out about a situation or surgery, I've been tweeting and posting it on Facebook. There is such an amazing group of prayers warriors out there. We greatly appreciate everyone!


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58 comments :

  1. Megan,

    Cohen and your family are in my prayers daily. Thank you for taking the time to update all of us, Cohen's prayer warriors. I know first hand having a c-section and a very sick baby in the NICU minutes seem like days and it all can be very emotionally and physically draining.Remember to take care of yourself. Sound's like Cohen is in great hands.

    Praying for a peaceful and boring days ahead. Us NICU parents love boring days ;-)

    ((hugs))

    Amber

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  2. Your baby boy is in my prayers. Thank you for the updates, through blogger and twitter. PLease know you are not alone.

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  3. praying for your family in KY

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  4. Glad Cohen seems to be doing better. Just remember that it wouldn't be normal if he weren't having all of these ups and downs! Don't forget to keep asking the nurses (and doctors) any questions that you guys have! Don't be afraid to ask something just because you already asked it once, but forgot the answer! One of the best things about being a NICU / peds nurse is getting to not only take care of the patient, but take care of the parents as well!

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  5. Megan, I don't even know what to say except that I have you, Brent, Cohen and his doctors/nurses in my prayers all the time. MUCH LOVE and HUGS - Ashley

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  6. This is the first time I have ever read your blog -- I connected from Kelly's Korner. I am so thankful to have found it; my cousin is experiencing nearly the same exact thing with her daughter as you are with Cohen. She was born on 5/27 and has had a lot of the same procedures so far. I am forwarding this blog to her now! We will be praying for Cohen.

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  7. I've been reading your blog for a month or so and just wanted to let you know I'm praying for your precious baby and for you guys too.

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  8. Good morning! I came by this blog today by following some random links. I'm heading to church in a half hour and Cohen and you all are being added to my prayer list.

    Don't feel bad about ignoring the Twitters/emails, etc. Everyone understands.

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  9. I have never been in your situation and I can only imagine how hard this is for you. The NICU is such a rollercoster ride for families...not just your own baby, but watching the families around you. Every sound, step, light flashing, beep and cry makes your heart miss a beat. The nurses and doctors work to do their best and ride that coaster with you.

    Take care of yourself because Cohen needs you to be strong. He will want his mommy to hold him as soon as he is ready. So many people are praying for your family and checking in to see how Cohen is doing. I personally have been logging on many times a day to get updates. 'Lots hugs and prayers from upstate NY to you Megan, Brent, your mom and especially Cohen.

    ~Susan

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  10. Megan,
    I am constantly checking my phone for tweets and the blog for updates. Thank you so much for updating us when you can. You are ALL such fighters and I pray that you find peace, hope, and Faith in Him right now. Praying, praying, praying.

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  11. Praying for Cohen, you, and your family! Praying for strength and peace.

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  12. Praying hard for y'all in GA

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  13. Always praying, friend. Much love!!

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  14. *Hugs*

    I'm crying with you! You are always in our thoughts and prayers!

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  15. I'm thinking about you and your family (esp. Cohen!) constantly. It sounds like you are in the best place you can be to get him great care - I hope for the best and that everything starts getting better for the little guy! Take care of yourself!!

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  16. Praying for you just down the road in TX! Stay strong Momma!

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  17. Megan,
    Since baby Cohen's birth, I think about y'all many times throughout the day. Whenever I do think of you, I say a quick prayer. I also added you on our church prayer list. Many big mommy hugs to you!

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  18. Megan, sending loads of prayers and love to you!! Cohen is so blessed to have such incredible and amazing parents and support group!! I know the prayer warriors are lifting him up in prayer all day long!So incredible to think that someone is praying for him every hour, every second of everyday! I hate this for you and for him:( Poor lil guy! Praying for lots of good days and good news ahead! Lots and lots of love! xxxxoooo

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  19. Prayers from Arizona! Let's get all 50 states praying for the family and Cohen!

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  20. Oh, Megan.. Cohen is such a fighter! We love you and praying for all of you!!

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  21. Thanks for the beautiful update. Sending all kinds of prayers and love Cohen's way.

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  23. Bless your heart. I can not imagine what you are going through, but you, Cohen and Brent are in my prayers continuously. Thank you for finding the time to update. I've been wondering how you all are doing. Keep your chin up and know that you are not alone!!!! <3

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  24. Thank you so much for keeping up with your blog! I wonder how this little guy is doing every single day.

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  25. I am sorry your baby boy is going through all this. May God carry him and your whole family.

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  26. Just to let you know you and your beautiful family is in our prayers.
    You have lots of prayer warriors in Iowa now.

    Tracy

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  27. Prays are said each day from our family for yours. May God continue to provide the strength, courage and knowledge that all involved need to heal your little guy. He is definitely a warrior to be fighting so hard. Even my husband (who doesn't do anything with blogs other than look at our pictures) asks each night how the little boy in Dallas is doing.

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  28. Hey Megan. I'm a newbie to your blog...I found it through Kelly's Korner and couldn't help but check out your precious Cohen. I have a heart baby, Derrick, who is almost 14 months old. He has a single ventricle and a few other CHDs. I just wanted to tell you we're praying for your family and your sweet boy. He's definitely proven that he's a fighter!

    Praying that your days become much less eventful soon and that you can snuggle with Cohen all day long!

    ~Shannon
    www.carolinacarters.blogspot.com

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  29. I can't imagine how hard this must possibly be for you and Brent. Continued prayers for Cohen and your family, he is clearly a very strong little boy.

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  30. Megan,
    I have been praying and crying for you all. My prayers are the same as yours. That God will work through all hands that touch baby Cohen and that He continues to give you the peace and strength that you all need.

    I live very close by so please do not hesitate to contact me if you need ANYTHING brought to the hospital.

    As a matter fact, my little one will be up there on the 24th for a follow up appointment from his surgery.

    everbrooke@yahoo.com.

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  31. We continue to pray. I'm so sorry that Cohen has to endure so much in his first week of life. God does have a plan and you just have to trust him. It's easier said than done.

    Take care of you. Rest when you can.

    I'm so happy that you have your husband and your mom by your side through all this. It is a blessing in itself. I don't know what I would have done without the support of my family.

    Cohen is in great hands. We'll be praying for PEE!!

    Have they said if transplant is even an option for him??

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  32. aww God bless baby Cohen. I cannot imagine what y'all are going through and I will continue to pray for you, your family and for Cohen.

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  33. I've never commented before, but I've been following your blog for a few months now. My nephew was a heart baby too (hypoplastic right ventricle, transposition of the great arteries, and about 8 other defects that made things really difficult)and his first few days were rough like Cohen's. Seven years and three surgeries later he is going great... proof that miracles happen. I've been keeping your family in my prayers!

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  34. Still praying in Memphis, TN. Thanks for updating the blog when you have time (for those of us who are technologically challenged and not on Facebook or Twitter :)

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  35. Megan -

    I've been following your blog since I realized we both had the same due date (June 15th). We had a little girl. She was born on May 21st, so she wanted to join the world early.

    You guys are already amazing parents. The love and commitment you've shown to Cohen is so inspiring. What a lucky man to have such great parents. And what lucky parents to have such a fighter!

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  36. Praying for your sweet boy. Thanks for keeping us updated!

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  37. Your family is in my prayers! What a beautiful baby! :)

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  38. Hi Megan,
    I found your blog just after you found out about Cohen's heart problems during your pregnancy and I've been reading and praying ever since. I just wanted to let you know I've been praying multiple times a day for Cohen - my husband asks me for updates whenever he sees me on the computer. Our love is being sent (from Australia) and we pray that you and Brent know the peace that passes all understanding while you go through this.

    Susanne.

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  39. Megan- You, Brent and Cohen have been so heavy on my heart. I hope that you are doing okay and hanging in there. I continue to pray for Cohen and also for comfort for you and Brent. I am so sorry you are going through such a hard time. Take care sweetie.

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  40. Prayers being sent your way from Alabama.

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  41. I love your blog- you are such an amazing person. You are so sweet to keep all of your readers updated. I am praying/thinking of you all day, know that you are loved by all of your blog readers!

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  42. Prayers and best wishes for Cohen!

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  43. Megan, I am continuing to pray for you and Brent and baby Cohen. I am so sorry that all of you are having to go through this and pray that Cohen will pull through and all will be well. Whatever the plan God has for him, you know that he will be taken care of and is being held in God's hands through each surgery. Sending lots of love, hugs and prayers to all of you. xoxoxo

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  44. Praying for you and your family. Thank you for the updates.

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  45. continuing to pray. and sincerely hoping that there are a few very uneventful NICU days in your near future!!

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  46. You are all so strong. I'm so happy you're at the best medical location for your baby, Cohen. I'm here in New York State, praying for your all in Texas.

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  47. I am praying for you & your family. You have a real fighter on your hands there.

    {{hugs}}

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  48. So glad to hear the staff at Children's is being so great. I'm sending all the love and thoughts and prayers I could possible send down south to your baby, Cohen. I'm also sending plenty your way, girl... Cohen's a little figher; that's for sure. :)

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  49. Megan - I'm praying for you guys and even had a dream last night about you. We're visiting family in Dallas in September and I dreamed that I was able to meet you guys and Cohen was doing great. I don't put a LOT into dreams, so don't think that's where this is coming from. But, I know that the Lord is with you guys and that I'm putting ALL your names before his feet!! many blessings!!!

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  50. Oh Megan, I am lifting up precious Cohen in prayer and the surgeons and staff who are caring for him. I am also praying for your heart and that you and Brent will feel a peace and comfort during these ups and downs. God is in control and you have a TON of prayer warriors out here. HUGS TO YOU!

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  51. I'm speechless..poor little baby, but thankfully God and so many others are watching over him.

    Continous prayers your way.

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  52. I'm always praying for you guys. Do not worry about responding to people. We all understand that you don't have time and more importantly just might not feel like it. That is okay. More than anything, I think we all just want you to know how much we are praying and thinking of you and Cohen and Brent. Sending lots of love your way.

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  53. Megan,

    You, Brent and Cohen are constantly in my prayers. I switch from praying to crying for you guys. My heart aches knowing what you all have to go through.
    Cohen is such a fighter and he's meant to be on this earth. I know he'll come through as best he can and you and Brent will be able to create many wonderful memories with him.
    He's in great hands and has the strength of love and support surrounding him.
    Take care of yourself. I wish I could give you a big hug. xo

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  54. My wife and I had a child who had a bt shunt. The main advice I can give is ask lots and lots of questions. Be informed, and there is no substitute for a mothers instinct. Not a reg. nurse or MD can compare to a mother in sync with her child. They will always notice if something is up, first!

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