Today

Well, we didn't get to hold Tucker today. We got to the hospital and were kind of heart broken to see that they had put him back on the Jet ventilator. I guess they only had him on the conventional ventilator for an hour, they had to keep going up on the pressures and they were afraid to keep raising them because his left lung could become over expanded again. They did an x-ray and a blood gas to make sure that this little experiment didn't make his lungs worse, and it didn't so they're very happy about that. They had to try, and he's just not ready yet. The doctor did tell us that he was really surprised at how much they're able to feed him, usually babies or grown ups for that matter who are as sick as he is won't eat...so that's great to know! I was really sad, I was so looking forward to holding him, it just feels like forever since I've held him...and it's starting to feel like it might be forever until I can again. I'm so sad for him, I know how hard he's trying, and I just wish they could do more or I could do something to help get him off of the ventilator completely. It doesn't help that I'm exhausted, everything seems to be multiplied when I'm sleepy. They're talking about taking his broviak tube out, which is what was giving him his lipids and proteins, and since he's not getting them anymore it would be better to get all of his lines out, less chances of infections that way. Once they stop his anti-biotic they'll really be trying to get the tube out. That would be great, one less thing to worry about, and one less thing he'll get tangled up in. Anyways, that's todays update...maybe in a couple weeks...we'll just have to see. Thanks for all your support and comments!! I'll let you know more when I hear it!!

Quick, quick update!

Danny called the hospital this morning and was told that Tucker has been doing so well that they decided to try putting him on the conventional ventilator to see how he does! That means WE CAN HOLD HIM!!! They think he might do well on the conventional, if not they'll put him back on the Jet and try again in a little while. He's up to 10cc every hour of breast milk, no more IV proteins or lipids YAY!!! He had what's called a P.I.A which is a line that goes directly into his artery and monitors his blood pressure, and where they could take blood from without having to stick him all the time, and it came out yesterday...but since they're only getting blood gases twice a day they're not going to put another one in!!! One less line we have to worry about!!!! They've discontinued getting x-rays every morning, they didn't feel the need to continue that...which is so great. We're heading to the hospital in a few minutes, if they let us hold him today be looking for pictures tonight!!!! Thank you all again for your thoughts and prayers...without them I don't think he'd be half as strong as he is!!! We love all of you!!! I'll post more later!

Good/Bad Day

Sunday was a horrible day...not for us, but for another family in the NICU. Sunday afternoon Jeremiah, the little boy next to Tucker, passed away. Danny was there when it happened but wasn't sure what was going on, and didn't want to say anything to me and upset me. He called my Dad and told him what he thought had happened and my Dad rushed to beat me to the hospital so I wouldn't be alone. I didn't know what was going on, but I saw a nurse with a baby's footprints on a sheet saying Remembering Our Baby, and I knew something horrible had happened. When I told my Dad he told me it was Jeremiah, and my heart just broke for his family. He was a beautiful little six month old baby, with the biggest eyes and longest eyelashes I've ever seen. I didn't really talk to his family much, I talked once for a few seconds with his Dad, but his Dad was amazing with him. He would come and hold him for hours, talking to him and making funny faces, it was beautiful to see a man so devoted to his son. I had no idea Jeremiah was that sick, to hear his Dad talk made me think he was on his way to going home, so when I found out it just broke my heart. It's like Tucker's nurse told me...babies aren't supposed to die. And it's so true, they are beautiful and to see that happen is such a heart wrenching experience. I was there when his parents came back from the chapel with him and all I wanted to do was to go to them and hug them, I don't even know them but I just wanted them to know how much I hurt for them. It's what all of the parents (nurses and doctors too) dread and fear more than anything, and when you see another family going through it it makes it that much more real and scary. I don't mean to break everyone's heart and if you stop reading now I don't blame you but I have to get this out, it's all I can think about and even now I'm still crying. That night all I wanted to do was to hold my son, to know that he's ok and that he'll be ok and I couldn't do any of that. I had been kind of short with his nurse Andrea all night (she's his primary and has him whenever she's there and I absolutely adore her) and I finally had to explain to her how sorry I was to act that way but my biggest fear is that I don't want that to be the reason why I hold Tucker the next time. It's always been my fear and in the back of my mind...I started crying and she put her hand on my arm and promised me that would not be the next time I held him...no matter what. And I know she means it...it's that thought that I can never shake, that never completely disappears. I was sitting at Tucker's incubator, listening to Jeremiah's parents talk and cry, and I was looking at my beautiful little boy and thanking God that he was here and for every second I've had with him, and asking God to be with Jeremiah's parents and family. I can't imagine what they're going through, and it breaks my heart not to be able to help. I think it was one of the saddest days of my life. I sat there and watched the nurses pack all of his toys and clothes for his parents, and then I watched them take that beautiful baby away and the thought of never seeing him again hurt so badly. I watched them take away his crib and everything else, and when it was all gone there was just this empty space...and it scared and saddened me. Even today it was so hard to look over and not see a crib there. They had to move all the babies in his NICU room around because they were cleaning the floors, and when I asked if they would take Tucker back to where he had been before they told me they were thinking about putting him in the corner (where Jeremiah had been) and I looked at them and told them no. They all looked at me and said you don't want to be in the corner, and I said no, not after what happened yesterday. It's not that I'm afraid that by being there that will happen to Tucker, it's just that it's too soon...Jeremiah had been there for the entire time Tucker has been there and it just didn't feel right. I know they'll put another baby there and that they have to put babies where they think it will work best, but I just couldn't have it be mine. Maybe it sounds dumb or stupid, and maybe it is...but I just couldn't do it. Please, keep Jeremiah and his family in your thoughts and prayers...I know I ask a lot, but please do this one last thing for me...and for them. I'm sorry I rambled on for so long but I just needed to get it out.

I don't want to jump from very sad to happy news, especially with what I just told you, it makes me feel guilty to know that Tucker is doing better with what happened to Jeremiah. Two weeks ago I really thought we might lose him...and in the last two weeks things have changed so much. A new neonatologist came into the NICU this past week (they rotate between Children's, John Muir and Alta Bates) and he thought they might try to push in Tucker's breathing tube again. This time though they wouldn't push it all the way into his right lung...they would just push it in a little too far and see how he did. So they did, I honestly couldn't tell you what day they did it because it's all blurred together...and we all held our breath to see what would happen. Thankfully, he tolerated it for about 30 hours, which they were so happy about, and after 30 hours they pulled it back, but not all the way back, just a little bit further out. They left it like that for another half a day or a day and he did pretty good like that. Then the wonderful thing happened (this may sound weird but stay with me and I'll explain it) his left lung collapsed finally!! This is good because the alternative was that it would tear and leak air into his chest, which then they would have to put in a tube to get the air out. The plan was to very gently and slowly re-inflate his left lung, they didn't want to use high pressures because as before it would just cause it to over expand again. Luckily, it's been working beautifully!! HIs right lung (which had been partially collapsed) opened up like it should, and his left lung is open again, and I can't remember if it's the right size or a little too big, all I know is that they are VERY happy about how it looks now. There used to be small pockets of air that you could see on his x-ray, and now I think there's only one or two (don't quote me on this, it's been a long few days and I really can't keep everything straight). His lungs are still very sick, so he's not completely out of the woods, but everyone feels better about how he's doing...they keep telling us at least he's going in the RIGHT direction now!! For three days he had great blood gases so they weaned his pressure down today, and then he had another really good gas so they weaned him again...twice in one day!!! Their goal is to get him off of the Jet (high frequency) ventilator and onto the conventional. They started his feedings again with breast milk, and this time instead of doing it every three hours they pump it in every hour. He is up to 9 cc every hour...they put it on a pump and it very slowly pumps it in over an hour. He is doing so well with it and they have him on enough that they stopped giving him the lipids and his protein mix...he is now getting all of his nutrition through the milk which is HUGE!!! It's two less things going through an IV, and they are thrilled about that. They would much rather fortify breast milk than give him IV nutrition...so we are very, very proud of Tucker. Every time I look at him it reminds me of how lucky I am, to have such a strong determined, beautiful little boy. He's been opening his eyes a lot more and looking around, and he's even been smiling!! I got to give him a sponge bath the other day, which made me so happy, it makes me feel more like his Mommy and like I'm doing things for him. He is also sucking on his breathing tube...which is great, that means he knows how to do it, and usually when it gets to the end of his hour's worth of milk and they start a new one he'll suck, which is good because that means he's learning that that's what he needs to do!!! They didn't have a binkie for him at first so I would give him my finger and he started sucking on it...which made his nurse Nancy and I super excited!!! They found him a binkie and I gave it to him and he kinda liked it...and then yesterday he actually sucked on it for about 15 minutes...I had to hold it because he doesn't quite get how to keep it in his mouth...and it's kinda hard with the breathing tube and his feeding tube in there too!!! Now when he starts wiggling a lot or just seems to be a little restless I give him his binkie and it calms him down and he settles back in for the most part. It just makes me so happy to see the progress he's making. It's baby steps but we couldn't be happier...I have an amazing son!! He likes to hold Mommy's fingers and he likes to hear my read to him, and I love to do it, sometimes he'll even open his little eyes and look around while I'm reading or talking to him, and that makes me even happier. I've kind of spoiled him, I bring him super soft blankies to sleep on, which the nurses are great about putting under him, so now he doesn't like the itchy hospital blankets...so I've been buying to softest ones I can find...I figure if he can't wear clothes yet at least he can lay on something soft!! I try to sleep with them before I take them in, all of his nurses told us to do it, that way he knows my smell and it's another form of comfort. I'm filling up his drawers with stuff!! I keep apologizing about it but I think they like the fact that I want to bring him things, I even put up pictures of when I held him...the one with all three of us, and the one of just him and I, and a picture of Danny and I from his friend's wedding. My Nana came up to see him, and she is so adorable with him, she starts to choke up when she leaves him and when she talks about him, which makes most of the nurses choke up too. My Grandma just had a pacemaker put in the other day, and she's doing fantastic...they gave her a little teddy bear so she named it Tucker and kept it with her the whole time she was in the hospital and held it on the way home. She wants to give it to him, and is so excited about coming to see him...we have such a wonderful family, we are truly blessed!! Tucker is now 6 weeks old and weighs 3 pounds 12 ounces, he makes me so proud!! When I go to buy him things people ask me who I'm buying it for and such and I love to tell his story...and most people tell me they get goosebumps as I'm telling them. He's such a remarkable little boy...I tell his story because I hope it will help anyone who is told what we were told. I hope it will help them to not give up hope on their child...to give them the chance and see what they can do. I can't say it will always end this way, and I don't know how Tucker's story will end...or if it will keep going, but at least we gave him the chance, and we did everything we could to help him. I want people to think about that, to think of him, and to give their child the chance to see what they can do! Now maybe some people can't deal with the uncertainty, and I completely understand that...but maybe hearing what he's gone and going through and how hard he's fought, just maybe they'll want to see what their child can do. That's all I want...is for his story to help whoever it can. I think that's why he's here, and he'll be a stronger child and man because of it. No matter what happens, we are so lucky that he's been with us for as long as he has, and has brought so much joy into our lives, and there is no better feeling than that. Ok, I'm sorry I've rambled on for waay too long, and if no one reads this I don't blame them!!! Lol. Thank you all again for caring enough to take the time to read the posts about him, and to pray for him and think about him. I say it a lot but we are so blessed to have so many people who care...we love you all for it!!!

Rough Day...

Thank you to everyone who has been following along...I decided it was easier and faster for everyone (especially me since I'm beat), if I just posted a note about this. Today was a really rough day...probably one of the worst we've had so far. They pushed Tucker's breathing tube in too far to collapse his lung on purpose. He tolerated it for a while, and his left lung did start to collapse some, but he stopped tolerating it and his blood gases were HORRIBLE. So, they pulled the tube back to where it had been and within an hour his left lung was worse than it was before...I saw the x-ray and his left lung was so over inflated it took up most of his chest...which was really scary. He looked awful also...and his oxygen saturation was horrible and he was on 100% oxygen which is not good. And all day his blood pressure had been really low and his heart rate was really high, which he's never had a problem with before. They were giving him drugs to help with his blood pressure but nothing seemed to be working. It was the first time that I've been really scared that we were going to lose him...and I think it was the first time the doctors and his nurses felt that way also. I honestly didn't know if he was going to make it through the night. They adjusted some of the settings on his ventilator and he started coming back around...his color got better, his blood pressure started to go up and stay up and his heart rate started coming down, his oxygen saturation went way up and they were able to start weaning him down on his oxygen concentration. He's doing much much better, but he's still not out of the woods...his x-ray at 8 looked about the same, if not maybe a little bit better. But when we left at like 9 or so he was down to 21% oxygen concentration which is great...21% is what we breathe...it's room air so they were very happy about that. Now the biggest thing is if his lung doesn't start to shrink in size or if it gets bigger...it could tear and leak air into his chest (it would also cause his lung to collapse), and they would have to put a tube in his chest to get the air out. I'm praying it doesn't come to that because I really don't think he'll be able to make it with one good lung...he was having a hard time with it today...his oxygen saturation never went over 80 which isn't good. Some day I'll explain all of these terms I promise for anyone who doesn't know. Today is not that day though because like I said before I'm absolutely exhausted. That's all I know right now, if anything changes I'll post another update. Thank you for all of your prayers and your support. I don't know how we would make it through this without all of you. You have been wonderful and I couldn't ask for better friends and family. Thank you again everyone, we love you!!

Quick Update...

It's been a while since I updated everyone on how Tucker is, and unfortunately I don't have a lot of time to go into great detail about what is going on. The doctor called Danny about twenty minutes ago and told him that he is going to purposefully collapse Tucker's left lung...it's getting over inflated again and they worry that it could cause it to tear and leak air into his chest cavity. They collapse it by pushing his breathing tube too far down, which pushes it into his right lung and then the ventilator is ventilating only his right lung and not both. They leave it like this for a day to let his lung collapse a little bit, as long as he tolerates it. If he doesn't tolerate it they pull the tube back to where it was before they tried it and I don't know what we do from there...this had been an option a few days ago but his lungs started to look better. This morning however his x ray didn't look very good I guess. I'm about to leave for the hospital but I wanted to update everyone and to ask that you say a prayer that this will go ok, or that something will change and his lungs will look a little better. Thank you for all your support and for reading all of the blogs I post about him...it means a lot to us. I'll update more when I get home...