No pain meds other than tylenol...I just still can't believe it! It's totally God! Kevin and his mom came that morning to visit. Shortly after, Bro. Danny arrived to get Mrs. Becky and head on home. Kevin stayed and hung out for a while, while Kendall and Allison stayed at the house watching Kaylie and Kade. I miss my other babies so much and worry about them, even though they have been with family the whole time. But I think it would just be harder on them to com visit...I found out Friday night that siblings could come visit, but I think we'll go home either today or tomorrow. Kohl seems to be doing very well, and as long as I cushion his neck with a blanket so to not put any pressure on his head or incision, he seems to be comfortable when I nurse him. Kevin held Kohl for a lil while for the first time since the surgery and did really great...Kohl was full of smiles and cooed with Daddy for a lil while so I could eat my lunch. A little later, I got Kohl to sleep and passed him off to sleep on Kevin's chest so I could get a shower. I know Kevin is so thankful, as I am, that everything has gone so well...He has told me several times already that he has been praying not only that the surgery would go well, but that he would recover better than average...and I think that prayer has definately been answered!!!
Kevin left to head home that afternoon to relieve Kendall and Allison. Dr. Joseph came in that evening to assess Kohl (which I did make him pose for a pic with the lil man! lol) He said how wonderful Kohl looked and that we could go home whenever I was ready, right then if I wanted. The nurse explained that I was concerned about the noise and stimulation at home with two older siblings, so we all agreed that one more night of quiet sleep would be good for Kohl and we'd go home in the morning.
Only minutes after Dr Joseph left, I noticed that Kohl's hat was coming off, so I eased it off to look at the back of his head and noticed that it was very misshaped...I had just taken pic of how round it looked earlier when Kevin had been there, and now it was all weird shaped out to the side and all...I quickly called the nurse who said that she thought it was just like a pocket of fluid/swelling in the back. But she called Dr. Joseph (who actually was on call, but had come by to check on Kohl anyway.) The dr on call said that it was normal and was just a pocket of fluid like she said.
There was also later some question on how to clean his head (since it had not been really cleaned since the surgery and still had bededine (sp?) and dry blood in his hair.) His night nurse, Joy, removed the bandage strip off of the incision and though I knew what to expect, I found out later after she left and the charge nurse came in, that she kinda got light-headed after seeing it. She had been making over how cute Kohl was, and I think just wasn't prepared completely for what was under that bandage strip. He was her first craniotomy baby, as she had only been a nurse for a year. But she was super sweet and helpful. Several nurses came to look at his head and dicuss what to do to clean it, since Dr. Joseph wasn't available to talk to, and we all came to the consensus that while Dr. Joseph is awesome at what he does, he isn't much on the lil details like this. But that's completely o.k. I'd just clean it with a washcloth, and be sure not to submerge the incision in water anytime soon. But Kohl in the meantime, just stole the hearts of all the nurses! He was smilin' and cooin'...we even got video of him flirtin' with the floater nurse! They're used to dealin' with preemies and newborns...and Kohl was just eatin' up all the attention! lol
Wednesday, November 25, 2009
Monday, November 23, 2009
Friday, Sleepy and Sore
Kohl awoke in my arms Friday morning with the sweetest little grin...just a one time thing and of course I didn't have my camera. He wouldn't do it again, but that's o.k. I captured several lil smiles throughout the day yesterday. That was kinda my "thank you for snugglin' with me all night" grin. Cuz after that, he was pretty much a sleepyhead and a tad bit cranky all day. I did notice that the fluid on the top of his head had gone down considerably. When I laid him in his crib that morning, I noticed that his eyelids were slightly tinged with a purplish tint. Not very bad though...I had seen so much worse in researching this surgery. He slept alot for the first half of the day. When he would wake up, he would cry in such a way that let me know he felt bad and was feelin' pretty sore. I think he may have overdone his lil self yesterday bein' all pain free on the meds! Much like the previous night, Friday was pretty uneventful. Kohl did receive 2 more doses of phentenol in his iv...thankfully, it still worked both times and didn't need to be replaced. Since he had already received the last of his antibiotics the night before and they were wanting to wean him off the pain meds, they took his iv out completely Friday afternoon. I know that was alot more comfortable for him to not have that "club" on his hand/arm. It was a lot easier to feed him also, and I noticed that he started holding onto a wad of my shirt everytime he would eat with his newly freed hand! lol They shortly after brought Kohl his dose of Tylenol and explained that he would be taking morphine orally to control the pain, but only if he had breakthrough pain from the Tylenol...no closer than 4 hours inbetween doses. Mom had come to stay the afternoon with me and Kohl. That evening, he started crying from what seemed like pain. I called the nurse (Dawn, who was also so friendly and awesome with Kohl, and we also had fun talkin' photography and scrapbooking earlier that day ;) about getting some pain medication for him. She brought in a dose of morphine, but by then he had gone to sleep. I just wasn't sure if I should give it to him, but we (me, Dawn, and Mom) all agreed that we should give it to him to control his pain this once and see how he did through the night just on Tylenol. Sure that he would probably need it again later, I agreed. It must have tasted nasty, cuz he put up a good fight to take it. He felt better after that though, cuz he got all happy and playful again. Dad (Paw Paw) arrived to visit for a while on his way out of town. He was able to play with Kohl a little bit. I got a funny picture of him with "the hand" through the crib bars, which was entertaining Kohl. Mi Mi and Paw Paw told Kohl goodbye and left to head home. Within a few minutes after they left, Dr. Joseph finally stopped in for the day. He removed all of the gauze dressing from Kohl's head (which had actually worked its way up into the top of his hat anyway), and left only the nonstick bandage strip over the actual incision. He wasn't there very long, but I did get him to pose for a pic with Kohl. He said again how great Kohl looked and commented on the minimal swelling. He did seem overly concerned about the blisters on his face and insisted that we start putting antibiotic ointment on them. He didn't really comment on when we could go home yet, but I assumed it would still be sometime Saturday or Sunday. After he left, me and Kohl were there alone for the night. Quiet...this would be good for him though.
I put his bulldog blue and white striped Seuss hat over his hospital beanie, his bulldog blanket over him, and his lil stuffed bulldog next to him for a few shots to support Daddy's game...the 2nd round of the playoffs. I texted Kevin a pic that said "Win it for me, Daddy!" And Kendall updated us via texts on the bulldogs progress (or lack there of!) So after 3 player ejections, 1 parent asked to leave, and 1 head coach ejected, the game was over.
Oh well...the bulldogs actually lost 49-0. They really didn't stand a chance against St. Charles (who were a privat school 3x the size of Springfield.) And the officials were especially rude to both our players and our coaches. Sad to hear, but it was a great season, and Kevin did an awesome job with the defense! NOthing to be ashamed of in the least!
Later, the nurse came in to check Kohl's vitals and get a weight. We tried cushioning the scale with a blanket because of all the fluid on the back of his head...but he was too sore to lay there to get a weight. So I eased him on his tummy, but didn't move my arms outta the way fast enough. So the nurse tried to do the same thing, but put him to close to the edge and he bonked his head on the the tray egde of the scale a few times. The scale inaccurately read 12 lbs something, and we both knew that was not right and just gave up, cuz he was so upset. I calmed him down and Kohl and mommy drifted off to sleep for another good night. It wasn't the best day, but def not the worst either. I eased him into his bed sleeping on his tummy since they back of his head was so sore. He's used to sleepin' on his tummy anyway and comfy rest would be good for him. Hopefully tomorrow he would be less sore. And Kohl did awesome all night long on just his Tylenol every 6 hours! Amazing!
I put his bulldog blue and white striped Seuss hat over his hospital beanie, his bulldog blanket over him, and his lil stuffed bulldog next to him for a few shots to support Daddy's game...the 2nd round of the playoffs. I texted Kevin a pic that said "Win it for me, Daddy!" And Kendall updated us via texts on the bulldogs progress (or lack there of!) So after 3 player ejections, 1 parent asked to leave, and 1 head coach ejected, the game was over.
Oh well...the bulldogs actually lost 49-0. They really didn't stand a chance against St. Charles (who were a privat school 3x the size of Springfield.) And the officials were especially rude to both our players and our coaches. Sad to hear, but it was a great season, and Kevin did an awesome job with the defense! NOthing to be ashamed of in the least!
Later, the nurse came in to check Kohl's vitals and get a weight. We tried cushioning the scale with a blanket because of all the fluid on the back of his head...but he was too sore to lay there to get a weight. So I eased him on his tummy, but didn't move my arms outta the way fast enough. So the nurse tried to do the same thing, but put him to close to the edge and he bonked his head on the the tray egde of the scale a few times. The scale inaccurately read 12 lbs something, and we both knew that was not right and just gave up, cuz he was so upset. I calmed him down and Kohl and mommy drifted off to sleep for another good night. It wasn't the best day, but def not the worst either. I eased him into his bed sleeping on his tummy since they back of his head was so sore. He's used to sleepin' on his tummy anyway and comfy rest would be good for him. Hopefully tomorrow he would be less sore. And Kohl did awesome all night long on just his Tylenol every 6 hours! Amazing!
Saturday, November 21, 2009
Thursday Night...In Mommy's Arms
Being able to hold Kohl throughout the day made us both feel better, I think. He got to be where he wanted to be, in my arms, and I felt as though there was something I could do to make him feel better. Knowing I could hold him through the night assured me that we would both catch up on some sleep.
Being that it was Thursday night and I had yet to turn the tv on since we arrived (not that I have had any desire to), and Kohl was feeling a lil better, Mommy claimed one element of normalcy and watched Grey's Anatomy at 8 p.m. (of course with baby Kohl in my arms). It really wasn't that good though...I didn't care for how they crammed all the holidays into one episode, and the tv was so dark, I really couldn't see it that well (we never could find a way to adjust the brightness/contrast.) And the shrill but muffled sound that comes through that lil handheld speaker (the hospital remote on a cord) was nerve wreckin' too! Oh well...I tried. And I can say I haven't missed an episode of my fav show this season yet! lol I usually go ahead and watch Private Practice...but the tv situation was just gettin' on my nerves so I just turned it off.
After that, Kevin, Kohl, and I settled down to get some rest. Kohl woke up once to eat, get a diaper change and take his meds. He got his last dose of antibiotics through the iv and of course his pain meds. The nurse explained that he'd prolly move to oral pain meds the next day and get the iv out, which was good, cuz it was gettin' difficult to flush, meaning a new iv would have otherwise been in the very near future. But thankfully it flushed and worked. Hopefully it'll work for whatever he needs it to tomorrow. He stayed awake and content for about 30 minutes and then settled back down to sleep on my chest. It was a peaceful night as one could have sleeping in a vinyl lazy boy, but I'm thankful for this lazy boy...I can recline with him a bit and keep on rockin. I'm so thankful to have gotten a good nights sleep with my lil man cradled safe, and cozy comfy in my arms. Thank you Jesus, again, for keeping him safe and for giving him such a good day.
Being that it was Thursday night and I had yet to turn the tv on since we arrived (not that I have had any desire to), and Kohl was feeling a lil better, Mommy claimed one element of normalcy and watched Grey's Anatomy at 8 p.m. (of course with baby Kohl in my arms). It really wasn't that good though...I didn't care for how they crammed all the holidays into one episode, and the tv was so dark, I really couldn't see it that well (we never could find a way to adjust the brightness/contrast.) And the shrill but muffled sound that comes through that lil handheld speaker (the hospital remote on a cord) was nerve wreckin' too! Oh well...I tried. And I can say I haven't missed an episode of my fav show this season yet! lol I usually go ahead and watch Private Practice...but the tv situation was just gettin' on my nerves so I just turned it off.
After that, Kevin, Kohl, and I settled down to get some rest. Kohl woke up once to eat, get a diaper change and take his meds. He got his last dose of antibiotics through the iv and of course his pain meds. The nurse explained that he'd prolly move to oral pain meds the next day and get the iv out, which was good, cuz it was gettin' difficult to flush, meaning a new iv would have otherwise been in the very near future. But thankfully it flushed and worked. Hopefully it'll work for whatever he needs it to tomorrow. He stayed awake and content for about 30 minutes and then settled back down to sleep on my chest. It was a peaceful night as one could have sleeping in a vinyl lazy boy, but I'm thankful for this lazy boy...I can recline with him a bit and keep on rockin. I'm so thankful to have gotten a good nights sleep with my lil man cradled safe, and cozy comfy in my arms. Thank you Jesus, again, for keeping him safe and for giving him such a good day.
Thursday, November 19, 2009
Day 2...A New Day, An Amazing Day!
We woke up at about 6:30 to a lil daylight and a call from Paw Paw that he would be on his way to visit. I expected to see a much more swollen baby boy than what I saw when I woke up. His head was a little more swollen, but not that much. I expected to find is eyes swollen shut, but there he was, looking at me with those beautiful baby blues with a lil sparkle even!
And then began the fun...they came in needing blood from Kohl (a heel prick and squeeze squeeze SQUEEZE -cuz his foot is so fat it's harder to get the blood that way.) The day nurse came in and noticed that nothing was getting through his i.v. and that he would need a new one. AAAAAAGGGGGGGGGHHHHHHHH!!!! When he finally had gotten settled??? I began to tear up as I remembered the lengthy screaming fight he put up the day before when 3 ppl held him down to administer his 1st i.v. And now to add the pain from his head surgery on top of that?!?! He did scream, and it broke my heart...I literally had to turn away and just cry. He didn't put up the same fight though...I don't think he could. So I got strong and went to try and console him by holding his nu nu in his mouth and rubbing the bridge of his nose. They got it in a lot more quickly this time. The problem was that when it had started beeping at 3:30 that morning, something had gotten disconnected and and the fluids had leaked all over his bed...yeah, night shift nurse didn't catch that! This coupled along with the fact that pushing 20 ml of fluid/hr kept bursting his lil veins...this was his 3rd i.v.
After the nurses changed his bedding, I suggested trying to nurse him since he wouldn't take the bottle and eating was the only way to take him off the liquids through the i.v. (which was what kept bursting veins and making him need new i.v.'s) So despite their hesitation, I pulled him on his blanket closer to the edge of the crib and gave him what he's used to. No problem! Finally, a full tummy and a little bit of a happier baby!
Shortly afterwards Dr. Joseph (the surgeon) came to check on him and just wwent on and on about how great his color was, how minimal the swelling was, how overall great and better than average he seemed to be doing! Praise the Lord!! He examined his head and encouraged me to feel the fluid that was causing the swelling on his head. I expected to feel like a tight puffy swelling, but instead, it felt like a layer of water between the scalp and the skull...ewwwww, very weird! (Kevin wouldn't feel, might I add...lol) He asked about his appetite and I explained how I had just fed him, but didn't want to overfeed since I coudn't sit him up and burp him...I didn't want him to throw up (which much to my surprise, he hadn't done so far!) Dr. Joseph said, "Sit him up...burp him. Hold him, love on him, rock him...whatever makes him happy. The more he's up, the quicker the fluid would drain down from his head." I was so happy to hear that I could hold my lil man and give him the comfort he needed, but scared at the same time that I would hurt his head in some way. Dr. Joseph said that if he kept feeding well, that we could take him off the i.v. fluids and just use the i.v. for administering meds. Another Praise the Lord!!! Less chance of busted veins and one less tube to worry about when holding him!
After he left, the nurses helped me get him up and sit in the recliner with him. I was so nervous and he was uncomfortable at first...I guess from the pressure change of the fluid in his head. But knowing he was in mommy's arms quickly settled him down, and my comfort in holding him grew from that point on... He ate again (from the "right source" needless to say, burped and melted into a calm sleep on my shoulder...this is all he wanted! Ever since, he has been so calm, so happy, so bright eyed and wonderful! We've had pee pee diapers, poo poo diapers, a few grins, a little bit of cooing, some play time in his bed (swinging his arms and kicking his legs) and a much more comfortable happy baby! He still moans and cries a little as he is still in a lot of pain, but nothing like last night. Kevin and I both have been praying specifically that he would heal quicker than expected and have minimal pain. And today seems to be a glimse of that prayer answered!!! I plan to get some much needed rest tonight in the lazy boy in our room with my baby boy comfy cozy in my arms. I believe tonight is going to be a good night for us both! *smile*
And then began the fun...they came in needing blood from Kohl (a heel prick and squeeze squeeze SQUEEZE -cuz his foot is so fat it's harder to get the blood that way.) The day nurse came in and noticed that nothing was getting through his i.v. and that he would need a new one. AAAAAAGGGGGGGGGHHHHHHHH!!!! When he finally had gotten settled??? I began to tear up as I remembered the lengthy screaming fight he put up the day before when 3 ppl held him down to administer his 1st i.v. And now to add the pain from his head surgery on top of that?!?! He did scream, and it broke my heart...I literally had to turn away and just cry. He didn't put up the same fight though...I don't think he could. So I got strong and went to try and console him by holding his nu nu in his mouth and rubbing the bridge of his nose. They got it in a lot more quickly this time. The problem was that when it had started beeping at 3:30 that morning, something had gotten disconnected and and the fluids had leaked all over his bed...yeah, night shift nurse didn't catch that! This coupled along with the fact that pushing 20 ml of fluid/hr kept bursting his lil veins...this was his 3rd i.v.
After the nurses changed his bedding, I suggested trying to nurse him since he wouldn't take the bottle and eating was the only way to take him off the liquids through the i.v. (which was what kept bursting veins and making him need new i.v.'s) So despite their hesitation, I pulled him on his blanket closer to the edge of the crib and gave him what he's used to. No problem! Finally, a full tummy and a little bit of a happier baby!
Shortly afterwards Dr. Joseph (the surgeon) came to check on him and just wwent on and on about how great his color was, how minimal the swelling was, how overall great and better than average he seemed to be doing! Praise the Lord!! He examined his head and encouraged me to feel the fluid that was causing the swelling on his head. I expected to feel like a tight puffy swelling, but instead, it felt like a layer of water between the scalp and the skull...ewwwww, very weird! (Kevin wouldn't feel, might I add...lol) He asked about his appetite and I explained how I had just fed him, but didn't want to overfeed since I coudn't sit him up and burp him...I didn't want him to throw up (which much to my surprise, he hadn't done so far!) Dr. Joseph said, "Sit him up...burp him. Hold him, love on him, rock him...whatever makes him happy. The more he's up, the quicker the fluid would drain down from his head." I was so happy to hear that I could hold my lil man and give him the comfort he needed, but scared at the same time that I would hurt his head in some way. Dr. Joseph said that if he kept feeding well, that we could take him off the i.v. fluids and just use the i.v. for administering meds. Another Praise the Lord!!! Less chance of busted veins and one less tube to worry about when holding him!
After he left, the nurses helped me get him up and sit in the recliner with him. I was so nervous and he was uncomfortable at first...I guess from the pressure change of the fluid in his head. But knowing he was in mommy's arms quickly settled him down, and my comfort in holding him grew from that point on... He ate again (from the "right source" needless to say, burped and melted into a calm sleep on my shoulder...this is all he wanted! Ever since, he has been so calm, so happy, so bright eyed and wonderful! We've had pee pee diapers, poo poo diapers, a few grins, a little bit of cooing, some play time in his bed (swinging his arms and kicking his legs) and a much more comfortable happy baby! He still moans and cries a little as he is still in a lot of pain, but nothing like last night. Kevin and I both have been praying specifically that he would heal quicker than expected and have minimal pain. And today seems to be a glimse of that prayer answered!!! I plan to get some much needed rest tonight in the lazy boy in our room with my baby boy comfy cozy in my arms. I believe tonight is going to be a good night for us both! *smile*
Kohl...1st Night = A Difficult Night
Last night was pretty rough. The doctors and nurses had told us he would be irratable from the anesthesia, and they were right. It was a sleepless night, but we survived. Literally every few minutes, Kohl would startle/jump and begin to cry. Words just can't even begin to describe what if feels like to see your baby lying there in unimaginable pain and not be able to fix it or hold him, or anything. All that I could do that would soothe him was for me to kind of bundle him down with my hands, stay close and softly reassure him I was there. At one point, our night shift nurse (not the same angel that we had before, during, and immediately after the surgery) let his pain meds (phentenol -sp?) lapse by over an hour. I had been worried that I wouldn't know the difference between an irritable cry and a painful cry. Well, I found out...He startled awake and began to scream inconsolably, but the worse part was the look in his eyes. He had a wild, very distressed and confused look that just reached into my very mommy being and screamed HELP!!!! It was horrible and so obvious that he was in severe pain. When I called her and found out that his meds were way past due, I asked how often they are supposed to be given. So now I am reminding them every 4 hours to bring it to prevent that from happening to my lil angel again! He had earlier taken about 3 1/2 oz of breastmilk from a bottle, I think b/c he was so starving hungry and still so out of sorts that he didn't realize where it was coming from. I later got him to take 1 more oz...but never could get him to take any more for the rest of the night. I think by then, he was alert enough to know that it was not coming from the "right source" and it just aggitated him and made him mad. Around 3:00 a.m. he finally had seemed to settle down and get to sleep after gettin' his meds, so Kevin and I each took a chair. We had barely dozed off when his i.v started beeping, and then beeping louder. I called his nurse, called again, called again...no answer. Kevin had to walk around to find someone who finally found our nurse. She pushed some buttons to shut the machine up without even checking to see what was wrong and said that everything was fine. With Kohl still sleeping, we decided to get some shut eye ourselves. And that was the best 3 hour nap ever! lol Much needed rest for Mommy and Daddy, but more importantly for baby Kohl.
Wednesday, November 18, 2009
Pre-Op to End of Day 1
I am sitting here right by Kohl's side reflecting on the events of the day and thankful that this day is almost past.
Kohl was so full of smiles this morning, so sweet, cooing and smiling. I prayed that he would be content despite the fact that 5:30 a.m. was his last feeding and surgery wasn't till 1:30. God answered that prayer...he slept most of the morning and really didn't cry until they had to put the I.V. in. He had the best little nurse, who really took to him b/c she has a lil 4 month old at home that is a chunky monkey like Kohl. They look a lot alike. She even took the time to put his shaved hair in a zipppy bag for me and labeled it "Kohl's 1st Haircut" when they shaved his head for surgery. She was very super sweet to him. And despite the "only 2 ppl can come back at a time rule", she let everyone come back and pray over Kohl and his prayer blankie before surgery and made sure that it stayed with him throughout. She is also the one who came out and kept us updated. She was such a blessing. After the iv was in, Kohl settled down and was very content until she carried him to surgery in her arms just as her own.
I am so thankful that Kohl did so well during the surgery, and grateful for the little waiting room that we filled up completely. Mimi, Paw Paw, Grandma, Grandpa, Kendall, Allison, Kerry, Terry, Mona, Pastor John, Dana, and Rachael were all there for us and for Kohl. It really made the time pass quickly and kept our thought from worry.
After the surgery, mom and I went back to see Kohl. Just as they had described, he was crying softly and miserably, was very jumpy and agitated from the anesthesia. I immediatly teared up...I knew this would be the hard part. Scared to touch him or move him in any way for fear of hurting him...I felt helpless. The nurse did insist that I hold him to get me over that, which I know did both me and Kohl good. The dark red spots on his face concerned me and later started to blister...but I think that should heal up quickly. Up until about 45 minutes ago, I have kept my hands on him for comfort constantly. He settles down and then startles awake and cries softly. It completely breaks my heart to see him in such misery, but I am thankful that all went well, and trusting God to give him a quick recovery. I can't wait to see that little joyful smile again and hear the innocent coo's so excited to "tell me all about it." About half and hour after seeing him, I tried to give him some pumped breast milk, but he wouldn't take it. But about 15 minutes after that, he gulped down 3 1/2 oz within a couple of minutes...and kept it down. He has already had a wet diaper and a poopy diaper, which is a good sign. About 20 minutes ago though, he woke up and just started screaming inconsolably with a wild, scared look in his eyes and I knew he was hurting. So the nurse brought him is dose of phentenol (sp?). Now he is resting, what seems to be peacefully with an occasional moan or sigh. I hope he is able to get some rest tonight. I'm glad Kevin decided to stay too for the night...this is the most difficult part. But I know that just as God brought him through the surgery, He will continue to heal his lil body. Ummm...I hear more poopies happenin' right now! Yay for poopie diapers! lol While only a little swollen right now, I know tomorrow will bring much more swelling and possible discoloration. But we will get through it. Keep gettin' better lil man!
Kohl was so full of smiles this morning, so sweet, cooing and smiling. I prayed that he would be content despite the fact that 5:30 a.m. was his last feeding and surgery wasn't till 1:30. God answered that prayer...he slept most of the morning and really didn't cry until they had to put the I.V. in. He had the best little nurse, who really took to him b/c she has a lil 4 month old at home that is a chunky monkey like Kohl. They look a lot alike. She even took the time to put his shaved hair in a zipppy bag for me and labeled it "Kohl's 1st Haircut" when they shaved his head for surgery. She was very super sweet to him. And despite the "only 2 ppl can come back at a time rule", she let everyone come back and pray over Kohl and his prayer blankie before surgery and made sure that it stayed with him throughout. She is also the one who came out and kept us updated. She was such a blessing. After the iv was in, Kohl settled down and was very content until she carried him to surgery in her arms just as her own.
I am so thankful that Kohl did so well during the surgery, and grateful for the little waiting room that we filled up completely. Mimi, Paw Paw, Grandma, Grandpa, Kendall, Allison, Kerry, Terry, Mona, Pastor John, Dana, and Rachael were all there for us and for Kohl. It really made the time pass quickly and kept our thought from worry.
After the surgery, mom and I went back to see Kohl. Just as they had described, he was crying softly and miserably, was very jumpy and agitated from the anesthesia. I immediatly teared up...I knew this would be the hard part. Scared to touch him or move him in any way for fear of hurting him...I felt helpless. The nurse did insist that I hold him to get me over that, which I know did both me and Kohl good. The dark red spots on his face concerned me and later started to blister...but I think that should heal up quickly. Up until about 45 minutes ago, I have kept my hands on him for comfort constantly. He settles down and then startles awake and cries softly. It completely breaks my heart to see him in such misery, but I am thankful that all went well, and trusting God to give him a quick recovery. I can't wait to see that little joyful smile again and hear the innocent coo's so excited to "tell me all about it." About half and hour after seeing him, I tried to give him some pumped breast milk, but he wouldn't take it. But about 15 minutes after that, he gulped down 3 1/2 oz within a couple of minutes...and kept it down. He has already had a wet diaper and a poopy diaper, which is a good sign. About 20 minutes ago though, he woke up and just started screaming inconsolably with a wild, scared look in his eyes and I knew he was hurting. So the nurse brought him is dose of phentenol (sp?). Now he is resting, what seems to be peacefully with an occasional moan or sigh. I hope he is able to get some rest tonight. I'm glad Kevin decided to stay too for the night...this is the most difficult part. But I know that just as God brought him through the surgery, He will continue to heal his lil body. Ummm...I hear more poopies happenin' right now! Yay for poopie diapers! lol While only a little swollen right now, I know tomorrow will bring much more swelling and possible discoloration. But we will get through it. Keep gettin' better lil man!
Surgery went great! Thanks for all the prayers!!!
Kohl is doing well...his surgery went fine and Dr. Joseph said he was the king of the the nicu...the biggest healthiest baby up here! lol And everyone that came in just had to squeeze his juicy thighs in pre-op. They said they're used to seeing babies the size of Kohl's leg! He weighed 14 lbs 2 oz on and empty tummy right before surgery. Everything went great. He did need a lil blood...but it was daddy's, so i guess he's gonna have a lil more football in his blood now! lol ... He is resting right now...still a lil jumpy from the anesthesia, his face a little swollen (which i know will be muh worse tomorrow, but at least we know what to expect). He had a lil reaction on his face to the bedadine (sp?) on the "donut" that his face was in during the surgery so he has a few very red spots on his face that blistered. But he did really well during the surgery and I can already tell that his forhead looks less bubbled out already. The nurse said she was amazed when they turned him over at the immediate difference, so i can't wait to see once his bandages are removed. A lil temp is expected for the first 24 hours. He is such a trooper...he came outta surgery at around 5:30 (a full 12 hours with no mommy milk) and he ate 3 1/2 oz of pumped milk at around 8:00. oh, he opened his eyes up for that!!! lol and gulped, I mean GULPED it down! And he kept it down! He also has a lil blankie that Rachael Stanga had gotten for him that we all prayed over and his nurse kept it with him during surgery. We are so proud of him, and to GOD be the glory for getting him through the surgery as healhy and strong as he did. We will continue to need prayers for strength as the next few days will be very trying. But we are so very grateful to all of you who have prayed and for sharing with your friends/family to pray also! Our GOD is REAL...and i know HE will continue to heal our baby boy! I love you all!!! I am so blessed to have each and every one of you in our life!!!
oh...of course i have taken lots of pics! (who knew? lol) but i will post some later on when he isn't so jumpy and fretful.
oh...of course i have taken lots of pics! (who knew? lol) but i will post some later on when he isn't so jumpy and fretful.
Today's the day...
Tuesday, November 17, 2009
Kohl's Diagnosis
Baby Kohl was born on September 8, 2009 (which also happens to be my dad's birthday). Right away, Kaylie began asking, "Why is his head oval shaped?" Though I was concerned about the front to back obong shape of his head and the lack of a soft spot, all the doctors assured me that it was just from his position in the womb and that it would round out in time. My concern never really diminished b/c with no soft spot, how could it shift back into place? At his 2 week well baby visit, his pediatrician noticed that the shape of his head was not rounding out. His forehead bubbled out the front and the back was still very cone shaped. His concern was that the skull had prematurely fused. So he referred us to a pediatric neurosurgeon.
We went to the neurosurgeon on October 14 (ironically, Kevin's dad's birthday). Upon examination, Dr. Joseph immediatly diagnosed Kohl with Sagittal Craniosynostosis. I can now say, spell, and describe this so easily, but my first reaction was telling him that he was gonna hafta write that down for me to remember it. lol The sagittal suture of Kohl's skull had fused too early (durng the pregnancy) and would not allow his head to grow out to the side, but only from front to back. This would eventually put pressure on the brain as the brain would not have room to grow properly. I think Kevin and I knew that surgery was inevidable, as the shape of his head seemed to be getting worse instead of better, but knowing that major surgery would have to be done on such a sweet tiny lil baby in a matter of a few weeks was heartbreaking to say the least...I looked at the doctor through my tear filled eyes and just flat out told him that I didn't like this at all. I know it needs to be done, but I still don't like it. And Kohl had already been through so much, having to have a circumsision repair/stitches just a few weeks earlier. He described what the surgery would involve and though I tried to listen, my attention stopped and let my emotions take control as soon as he said the surgery was necessary. All I could do was cradle my lil man and take in all of his perfection despite the imperfect shape of his head. He wrote down the name of the diagnosis and told me to do my homework (which I'm pretty good at anyway) as I would need to be prepared for the swelling that would be involved afterward. He ordered a CT scan to confirm his diagnosis and later, Kohl's surgery date was set for November 18th. I asked him how many of these surgeries he had done and what the risk wasfor Kohl dying. He replied that he has done over 100 of these surgeries and while death is always a risk in any type of surgery, he has never lost any babies. The biggest risk would be that Kohl could lose too much blood and possibly need a blood transfusion. Thankfully, Kevin and Kohl are the same blood type, so Kevin has donated blood in the instance that Kohl should need it.
As devastating as it was to hear that our new baby would have to undergo such an involved major surgery, we are thankful after researching it out, that Kohl only has one fusion. Learning disabilities and syndromes like Apert's and Crouzon's are directly associated with multible skull fusions, which is NOT the case with Kohl. Thank Jesus for that!!! This is the most common and most repairable fusion and no brain abnormalities are associaed with it when caught this early!
I was thrilled after the CT scan that Dr. Joseph likes to put a copy of it on CD for all of his patients. So when I got home and reviewed it for myself, it was quite obvious that the center plates of Kohl's skull had fused. It's easy to wonder why and ask so many questions, but I have such a peace that God is in control of this...and that God will take care of my little caboose who I love so dearly and am so blessed to have in my life. I know that God has already used Kohl to work in our family and in our individual lives. Here it is, the day before the surgery, and I am holding up pretty strong. While I have done my best to prepare myself for what is to come tomorrow and the days following, I know that seeing MY BABY in that condition, head and face swollen and bruised with tubes all over, etc. will not come easy. I know that nothing I can do will adequately prepare me for that or the fear that will come after handing him over to the Doctor and the worry of waiting...but I am so very thankful for all of the prayers, all over the state, in other states, and even in Canada going up for my little man. I know he is in the best hands possible...God's hands, and I know that God will hold and guide Dr. Joseph's hands the whole time. I also pray for God's strength for myself. He has allowed me to be strong thus far, but I know I will need to be held most tomorrow and in the days to follow.
We went to the neurosurgeon on October 14 (ironically, Kevin's dad's birthday). Upon examination, Dr. Joseph immediatly diagnosed Kohl with Sagittal Craniosynostosis. I can now say, spell, and describe this so easily, but my first reaction was telling him that he was gonna hafta write that down for me to remember it. lol The sagittal suture of Kohl's skull had fused too early (durng the pregnancy) and would not allow his head to grow out to the side, but only from front to back. This would eventually put pressure on the brain as the brain would not have room to grow properly. I think Kevin and I knew that surgery was inevidable, as the shape of his head seemed to be getting worse instead of better, but knowing that major surgery would have to be done on such a sweet tiny lil baby in a matter of a few weeks was heartbreaking to say the least...I looked at the doctor through my tear filled eyes and just flat out told him that I didn't like this at all. I know it needs to be done, but I still don't like it. And Kohl had already been through so much, having to have a circumsision repair/stitches just a few weeks earlier. He described what the surgery would involve and though I tried to listen, my attention stopped and let my emotions take control as soon as he said the surgery was necessary. All I could do was cradle my lil man and take in all of his perfection despite the imperfect shape of his head. He wrote down the name of the diagnosis and told me to do my homework (which I'm pretty good at anyway) as I would need to be prepared for the swelling that would be involved afterward. He ordered a CT scan to confirm his diagnosis and later, Kohl's surgery date was set for November 18th. I asked him how many of these surgeries he had done and what the risk wasfor Kohl dying. He replied that he has done over 100 of these surgeries and while death is always a risk in any type of surgery, he has never lost any babies. The biggest risk would be that Kohl could lose too much blood and possibly need a blood transfusion. Thankfully, Kevin and Kohl are the same blood type, so Kevin has donated blood in the instance that Kohl should need it.
As devastating as it was to hear that our new baby would have to undergo such an involved major surgery, we are thankful after researching it out, that Kohl only has one fusion. Learning disabilities and syndromes like Apert's and Crouzon's are directly associated with multible skull fusions, which is NOT the case with Kohl. Thank Jesus for that!!! This is the most common and most repairable fusion and no brain abnormalities are associaed with it when caught this early!
I was thrilled after the CT scan that Dr. Joseph likes to put a copy of it on CD for all of his patients. So when I got home and reviewed it for myself, it was quite obvious that the center plates of Kohl's skull had fused. It's easy to wonder why and ask so many questions, but I have such a peace that God is in control of this...and that God will take care of my little caboose who I love so dearly and am so blessed to have in my life. I know that God has already used Kohl to work in our family and in our individual lives. Here it is, the day before the surgery, and I am holding up pretty strong. While I have done my best to prepare myself for what is to come tomorrow and the days following, I know that seeing MY BABY in that condition, head and face swollen and bruised with tubes all over, etc. will not come easy. I know that nothing I can do will adequately prepare me for that or the fear that will come after handing him over to the Doctor and the worry of waiting...but I am so very thankful for all of the prayers, all over the state, in other states, and even in Canada going up for my little man. I know he is in the best hands possible...God's hands, and I know that God will hold and guide Dr. Joseph's hands the whole time. I also pray for God's strength for myself. He has allowed me to be strong thus far, but I know I will need to be held most tomorrow and in the days to follow.
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