Tomorrow!!!!

If all goes well Christian will be coming home Tomorrow. I will be taking his carseat up tonight for them to do a carseat trace were they place him secure in the seat and they monitor his sats for the aprox. time he will be in the car going home which is about an hour. If he passes it and every thing goes smoothly tonight he will be home sometime tomorrow. OMG is all I can say I have been a nervous wreck today since the nurse told me. I been cleaning and sanitizing everything. Went shopping to get things I know I don't have for him and need I so don't feel ready completly but then again who ever does have every thing ready? I'm so nervous I have so many worries and I'm so afraid I'll be to overprotecting of him to the point will I be able to focus and Just enjoy him? I bought the HUGEST bottle of hand sanitizer and done informed the kids you better not touch the baby unless hands are clean lol I know that sounds mean but I am so afraid he will get sick or something. I don't think I was ever this way w/ the other kids but then again I could of been but not this severe KWIM? I know allot of people are going to want to come over and Visit and well half of these people if not more hasn't offered no help what so ever since he has been born. They basically just want to come see him and make it all about them (just my opinion) Only very few people has helped or offered any help at all and that's My Best Friend, mine and James parents and one of my sisters. Not many at all. Not that I'm complaning but I've had so many calls of people wanting to know when he was coming home and saying Well he's going to be grow before anyone sees him and just being rude. Well were he's a preemie plus has had Surgery and everything else going on I've done been told by the nurse limit visitors and no going to crowded places. Only allow those that has been there for you durring this time and close family and friends to come over and for all the others tell them they have to Wait. She said she would tell them one day out of a week I'll have a Window viewing were I'll bring the baby to the window to let everyone see him LOL I hate to make people mad but I want to do what's best for him.

Almost......

Christian is near his end of his NICU stay He is doing so well now, Finally he gave up the heat they said as long as his temp is 97.0 or more he is fine to stay out of heat they said considering his Damage to his Brain 97 would be good enough. So he has finally started maintaining his temp YAY. The next issue is weight he lost 6 ounces :( so they increased his calorie intake putting Neosure in his Breast milk and finally last night he lost no weight YAY and tonight he gained 5 grams not much but he did gain so maybe in the next couple days or so they will send him home. I'm excited but terrified I know I'll be a nervous wreck. I'll post soon when we know whats happening thank you all for your prayers and support threw such a difficult time I can't thank you all enough (((HUGS)))

Taking All Bottles :)

It's been 2days now that Christian has took all his bottles (YAY) It feels like such an acomplishment for him and makes me so proud. Hopefully he will no longer have his feeding tube in his little nose soon. They tried to wean him of the heat yesterday but that didn't go over to well w/ him (I think he is dreaming of a FL vacation laying out in the sun lol) he got cold so they said they will try and let his body adjust more from all the changes and try again in a couple days. It's funny b/c he was controling his own temp before he started going down hill but they said it was normal b/c of what his body has went threw w/ the fluid on his brain and now the shunt along w/ every thing else. Hopefully he will come off the heat soon. Well I am off to the hosp. hope everyone is doing good

An Emotional Day :(

Today is my Son Lucas' fourth Angel day and it's really hard especially right now b/c Christian is in the Hosp. I miss my baby Lucas so much he should be 4 years old and just as mischievous as his brothers, I sit and wonder many times of how it would be if he was still here w/ us what would be different? I don't think this pain ever truly goes away you just have your days that it's not hurting as bad and then you have days like this that remind you of what you have lost and it hurts it hurts so bad. I still ache to hold him again to smell that sweat baby smell and to here his cute giggle that was just so cute. I miss how we would cuddle in the recliner late at night and I would sing to him OH how he loved to be sung to especially Amazing Grace and Hush Little Baby. I miss reading him his bed time stories and how he would look up at me w/ the biggest smile. I just miss my baby sorry to vent I'm just having an emotional day and needed to share :(
Happy Angel Day my sweat Angel Lucas Mommy misses you

SO much

Surgery update!

Hi everyone sorry it's took me a little bit to update on Christian I been so busy at the NICU this weekend and so tired from all that has happened. Well Christian went threw his Surgery really well they thought it would take 1-2 hours but they had him done in 30 minits they said it went so well that they had him done faster than what they thought :) We waited for about 30 minits to an hour before we got to see him b/c his nurse had to get him all cleaned up. When we got in there he looked good considering he had surgery. his head measurement had went down a half a centimeter after surgery he was on the ventilator to. He was doing well the rest of the day then he started dropping his Heart rate and his oxygen stats started dropping his color was changing the nurse had to give him loads of oxygen then he was fine but not long later he did it again. Finally he calmed down and it was shift change so I had to leave for an hour but I sure didn't want to He scared me to death. I called James who had already went home and told him I was spending the night b/c I couldn't leave him. I got back in after shift change and apparently he acted up during the whole time. He started again while me and the nurse were talking she ran to get the doc and I kept stimulating him and giving him a pep talk lol He calmed down before the doc got in there and the doc said to watch him and if he did it again let him know. I sat there all night and he behaved till about 4am and acted back up again. Finally they got him back stable...They were thinking it may be from were he is on the vent and were his body is adjusting to all that fluid coming off his head. Well they had a new baby arriving so I had to leave the room and it was close to shift change so I went ahead and bring the van home and had my mom and dad bring me back to the hosp. I called before I got there and he had been took off the vent but he was having loads of HR drops she said it could be from were he was just taken off the vent b/c he was holding his oxygen but if he continued they were going to give him oxygen. By the time I got there he was doing better not many HR drops. He looked allot better to his head looked funny tho b/c of were the fluid was draining they said his plates may over lap eventually but at that time one side was smaller than the other. He done good threw out Sat. only a few HR drops but held his oxygen and feeds were started and he was doing well w/ that so they stopped his IV fluids. So I Had James come get me so I could come home and rest since he was doing OK. I went back this morning and I was so amazed at how he looked his head looked so much better he was alert and awake and even smiling :) His nurse tried him on a bottle but he didn't do very well. I did get to try him w/ the bottle and he sucked the whole bottle and I got to hold and cuddle him for the first time since his surgery :) He only had 2 HR drops while I was there and dropped his oxygen 1X but it was just after his diaper change too. He was a little jittery and shivery but they said probably from the surgery b/c his body is adjusting still but overall he is doing GREAT. Thank you all for your prayers I hope this puts him on a fast track to recovery.

Christian’s Big Day TOMORROW

It's been confirmed Christian has no Infection they said the first cultures were coming back staph which everyone has on their skin so somehow his fluid got contaminated w/ his skin. These last cultures are clean as a whistle so they can proceed w/ the surgery. They are going to go ahead and continue the antibiotics just b/c he is having the surgery, he has to get blood today b/c his blood count is low again but they said we are all set for tomorrow. I am so glad maybe this will help him get better and on the right track to a complete recovery. Thank you all for your continued prayers We so appreciate it and can't thank you enough. I'll re post how things went when I get the chance.

A Plan

Just got off the phone w/ the hosp. Christian is not doing well he is now Lethargic but stable he is holding his stats but he is so weak his little head has filled back up w/ fluid :( I feel so bad for him and I can't do anything but pray. The neurosurgeon came in to check him out and here is the plan as long as his cultures come back tomorrow that there is no infection they will proceed w/ Shunt Fri. they will be doing a Cat scan also tomorrow so that they have a map so to speak of his head to help them threw surgery. Please keep us in prayer these next few days that everything will go as plan

Bad Night-Good Day

Monday night was a horrible night for Christian he cried and cried and cried all night the nurse tried everything possible from cuddling to pain meds to sooth him. His head was filling up w/ the CSF fluid by the minit and I am sure he had a headache. I called numerous times to check on him and couldn't sleep myself knowing he was over there in pain and I wasn't w/ him :( Finally around 7am the docs called and as you know that is going to scare you to DEATH they were concerned b/c his head has filled back up so fast w/ the fluid and he was in so much pain. So the surgeon decided he was going to do another Ventricular tap plus they needed more Fluid to send off to make sure he doesn't have an infection around his brain anyway b/c they can't place his shunt if he does have, they just was hopeing to wait another day or two but considering Christian's situation they were not going to wait. I had to go to town anyway (were Christian is at) so I didn't want to take the kids that way I could go see him and cuddle him b/c he had me so worried. So my mom offered to come sit w/ the Kids YAY lol SO I get there finally and OMG he looked so good his head didn't look like an alien lol like his dad said it had been looking like so to speak lol he was so peaceful calm and not in pain. He was moving around color looked good and he was SMILING. They also had started his feeds back and guess what he was sucking from a bottle not the greatest but he was trying.After I got home later that night I called to check on him and unfortunately his head was filling back up and the Docs were amazed by how fast it was. They did say so far all his cultures were looking good and looks like he may not have an infection so the plan is if confirmed no infection w/ in the next day or so they are planning on proceeding w/ the shunt. I just can't wait till we get him off this roller coaster and get him on a fast track of recovery. I'm going to be old and gray by the time he comes home I have worried so much.

Doc Calls

I actually was w/ my kids Ped. today and we were discussing Christian when one of his docs called and they wanted to informed me that his CSF (Spinal Fluid) cultures they sent off 2 out of 3 were abnormal and were growing bacteria, they said it's possible contamination but considering 2 out of 3 not sure. Until they find out what infection it may be or that it is contamination they aren't going to play around so they immediately started 2 STRONG antibiotics and he will be on them possibly 7-21 days, It's just horrible I hate all this and there is nothing I can do for him I'm hoping it's just contamination b/c these types of infection aren't something I want him to have. My ped said it's possible meningitis and right now w/ all going on he is so venerable. It just seems like one bad thing after another I just don't know what to do or think anymore I am so worried about him and I am so affraid of what is going to happen next.

Christian's weekend

Christian had a really rough weekend, Sat me and James met up w/ him neurologist and he explained to us what had happened to Christian, Basically there has been numerous docs looking at him and all the test and it has been confirmed by all them he did have a STROKE. Sometime in utero around just before he was born they think all this happened. He said it wasn't a little stroke it was a BIG one. It has damaged about a golf ball size of his brain so considering his size that's a good size. I asked if he also had the IVH bleed to and said that the bleed come from the stroke but it was like a IVH bleed but his bleed was more severe than the typical IVH. We still won't know what will be affected but he believes possibly vision to some extint and some stiffness and maybe trouble moving fingers, he said he may have trouble in school etc. It;s to hard to say right now. They are definitely going to put in the shunt possible sooner than thought b/c his had has enlarged so much it's at 34 cm right now that's like 13 1/2 inches. I asked if this was common and he said yes and no as for him it is he has seen it in the NICU but as for the outside world no. SO that's pretty much what we all talked about. As for Christian Sat was a bad day, they attempted to do another spinal tap to relieve some pressure and didn't succeed. He also started having bloody stools so they stopped his feed to see why, they checked his bottom and nothing there so now they are looking into that. He was also low on blood so they had to transfuse him. He constantly cried b/c he was in pain all day I had to reposition him every 30 min to an hour to comfort him. His heart rate also was dropping but it would go right back up. Finally late that night after they were giving him the blood he settled down a little so instead of staying I went on home to try and rest. I called when I got home and he started acting back up his heart rate kept dropping and he was fussy. SO I felt so bad for leaving him and didn't get any rest. The next day Sun. I called before I was heading up and spoke to one of his docs and b/c of his pain and heart drops they talked to his surgeon and he wanted them to try the spinal tap one more time and if it was not successful to do a ventricular tap they spinal didn't work so they did a ventricular tap were they went threw his soft spot w/ a needle and drained it that way they succeeded and got like 20 cc YAY his nurse said that as they were draining it he relaxed as if it was the biggest relief. SO all day yesterday he slept I didn't even touch him much b/c he was feeling better and was resting. His heart rate drops were also less frequent. They had to lower his fluids b/c his sodium is low they said his body is hanging onto the fluid and his output is low so they lowered his fluids and are giving him some sodium to help. His protein in his spinal fluid is abnormally high they said that was normal b/c of the bleed so as the blood is braking down it's causing high protein. SO Sun he was feeling better we just got to get him lined out so they can put his shunt in. This morn when I called they are waiting on the surgeon to see what he wants to do plus calling other docs in to see why he had bloody stools. His nurse said compared to his weekend he is having a great morn. He is still hurting but seems to calm easily. Hopefully I have remembered most of it right now we are just waiting to see what the docs next plan is. Thanks you all for your support and prayers I so appreciate it.

My baby had a STROKE!

Went in yesterday and met up w/ his Pediatric Neurologist, They done an MRI to see exactly what was going on, He said that Christian had a Stroke and he believed it happened in utero, due to the stroke he will need the shunt b/c he developed the hydrocephalus but they will not be able to do the surgery right now b/c of the blood on his brain, so they have to let that heal and fall off. He said maybe a couple of weeks then they will place the shunt. What this means for Christian is still the same we won't know until he gets older as to what has been affected etc. I asked the doc how could of he had a stroke in utero? He said it's hard to say but based on the MRI and his examination it was a Stroke, it could be were the cord was wrapped around his neck or maybe I had a blood pressure issue that I was unaware of it is hard to say he said. I am kinda confused and have allot of questions now that I didn't have when I was talking w/ him so I will be asking him allot next time I see him.

Today I talked on the phone w/ Christian's nurse I am to meet up w/ his docs in the morning around 9-10 They want to discuss w/ me about his diagnosis etc. and a game plan of treatment.Christian hasn't had a good day today he is in pain from all the pressure from the hydro, so they decided to do a procedure that is were they do a spinal tap and drain some fluid so they can relieve the pressure. They did the spinal tap unfortunately they didn't get as much as they hoped they wanted to get 20 but only got 6 and that was w/ 2 pokes and they didn't want to poke him any more. She said she has given him Tylenol that he cried for about an hour and a half after the procedure...poor guy....but right now he seems more better. I asked her about the stroke and and she said that is what they are saying happened and it's one thing they want to discuss w/ me he had what they call a hemorrhagic stroke while in utero and that is what caused the bleed and hydro. I'm not sure of what all they are going to discuss but his nurse said basically what challenges he may face and his treatment options right now b/c he is in pain is some of the things we will be discussing.

Anyway I did do some research on this and for those that would like to kinda understand this better here is a link that I thought helped w/ explaining it some what http://www.strokesafe.org/resources/pediatric_stroke.html I'll let everyone know more when I talk to his doctors

Not so good news

Last night I went to see Christian and see what was going on b/c they didn't want to give me results over the phone. When I got there I held Christian till his doc got there. Finaly she arrived, right now the hydrocephalus isn't that bad and it's not realy their concern at the moment. The brain bleed he had significantly damaged his brain on his left side. There is so much damage there. I can't explain it like she did but she showed me his US pics and they were not the best pics to look at. She did say the bleed had stoped but the damage has been done. He has a 25 % chance of living a semi normal life. Right now it's hard to say what will be affected till he gets older he may develop CP (Cebral Palsy) it may be mild or it may be severe we won't know till he gets older. He has a chance of having seziors right now he hasn't had any. He hasn't been able to suck from a bottle anymore b/c he gets sick so he is being tube fed. I don't know the outcome to this but all I can do is pray that God will fix this so he can atleast be as normal as he can be. All I can do is cry I want to just curl up in a ball. It's so unfair, I am feeling allot of what I felt when I lost Lucas allot of that pain is so similar. Why my baby why him? I wish this was a dream so bad. I feel like I'm being punished I lost Lucas now this what have i done so wrong for this to happen. I'm one that loves my kids I don't do drugs, drink or anything. I go to church try to live my life the way God intends for us to do. I'm not a bad person atleast I don't think I am, So why my baby?

Results update

I finally got the call and it was one call I wish I didn't get, Christian's Bleed is significantly worse and hydrocephalus had begun, she said that there is blood within the brain itself and at this point there is possible damage occurring. They are transferring him to the other NICU a few blocks away and they are going to evaluate him and do more US and tests. She said they will probable put a temporary drain in to drain it till the hemorrhage stops so they can place the shunt. All I can do is cry, I can't be there to hold my baby and be there for him. It's so hard knowing your baby is this sick and you can't do anything about it. I'm blaming myself maybe I shouldn't but I can't help it. If I would still be preggers he would be safe inside me, but the doc did say considering how intense it is she wonders if this started in utero? Still I can't help but to blame me b/c my squirt is so sick. I'm just so scared and worried right now and feel like my head is just spinning. Please Pray for my little guy only God can fix this

Waiting for results

Yesterday I got to nurse Christian for the 1st time :) it was so different to me my other babies were so big compared to him I just felt like he was so fragile and I was going to brake him lol, We did good tho he isn't the greatest but he is still learning to Suck. The Doc came in while I was there and she said his soft spot was starting to bulge so she definitely wanted his head US done in the morn first thing. If it shows he is significantly worse she wants to transfer him to another Hosp that has a pediatric Neurosurgeon so he can monitor him better. We are still unsure as to what this is going to lead to. Hopefully it will all clear up and nothing will need to be done. She said if it isn't to bad then they will watch him there and keep repeating his US late in the week. So I am sitting here waiting for her to call me w/ the results and the wait is killing me. I would be right there w/ him if I could and it's so hard that I can't. SO the wait is just going to drive me insane. On the other hand he is doing great the nurse said this morn he is up to 4 pounds 1 ounce and that is good because the other day he lost half an ounce. Honestly tho I wasn't surprised lol and here is why, While I was changing his diaper Sat. as soon as I took it off he pooped all over the place and I mean every were lol it was projectile he shot the walls, window, floor, and me lol everything. His nurse said he did her the same way earlier and that his previous nurses did warn her lol apparently he is getting all his nurses he even almost got his neighbors lol Twin girls, So as soon as that diaper goes off you have to look out. He has got a total of about 6 nurses so far and is still being a little snot lol SO I actually wasn't surprised when they said he lost half an ounce, I told him if he kept doing that all the nurses aren't going to want him lol I got me a little Stinker!

Routine Head Ultrasound

Christian is now back up to 4 pounds exactly he is in a crib holding his own temp, the antibiotics have been stopped and no longer has an IV, his hand is better from the infection from the IV, they are feeding him from bottle every other feed to learn him to suck, They did a head US yesterday and finaly the doc called me today they were hoping I would of came in but w/ my little ones at home I wasn't able to so he gave me the results over the phone, Christian has a Grade 3 bleed on the left side of his brain I am not completely sure what all this means since it is hard to explain over the phone w/ out the docs basicly drawing it out for you, he said he will be doing another Head US mon or Tues. and see were we go from there he said it may lead to a shunt but it's hard to say at this point but they will be Closely watching him. He said when I come in tomorrow to make sure to ask for one of the docs so they can come over and explain it all better to me. Also he mentioned they are going to get physical therapy in and start working w/ him. He said that they don't worry to much on Grade 1 and 2 but 3 and 4 can lead to more serious things causing dammage. Anyway this has realy upseted me and has me SCARED to death...I am putting all my strength in God but it's so hard I tend to think the worst and just can't help it. Thanks for all the prayers and please continue to pray, Christian has alread acomplished so much and I beleive he can this to.