I'm sorry. I always hate to leave these after positive ones. I just had a talk with the doc rounding for the next 2 weeks. It started out that when I called about rounds the nurse put one of the fellows on the phone. I always hate it when they go get the doc. Anyway, steroids are being started because Emery just isn't making progress like they had hoped. His vent settings are fairly high. Basically - this is the way the last few weeks have gone:
me: "Why are his vent settings up today?"
NICU: "We're just trying to get his oxygen requirements to 50% or below."
me: "It seems like he rebounded worse after this last round of steroids."
NICU: "No, he's bigger and needs more support."
me: "Are his lungs just pooping out on him?."
NICU: "No, he just needs to grow new lung tissue."
Anyway, his pressure support has gone up and they are afraid that it will cause more injury, so the hope is to do steroids again and see if he can make it off the vent again. If not, it's time to switch to the jet (high-frequency ventilation.) His survival rate is still 70% to 80% but the doc is "a little worried" that he's still on the vent and needing this much support at this age and size. No talk of a trach yet. I feel like we're back to if he comes home, not when, but the hope is still to get him off the vent and onto CPAP and then nasal cannula. 70% to 80%... that means that out of every 100 babies 20 to 30 die. I only had a 5% chance of getting preeclampsia to the severity I had it. Statistics blow. Back to crying all day again. Keep us in your prayers. I'll let you know more as things go along.
Wednesday, March 12, 2008
03/11/2007
Where do I begin. It has been a long weekend, and an amazingly stress-filled joyous/tiring/fearful day. First, we saw Emery on Friday night, and he was fussy. Daddy held him and Emery loved it. There was no bath that night because they were busy. Saturday I went up early because friends and family came on Saturday afternoon. I got to kangaroo Emery for the first ime. (Kangaroo is short for kangaroo care, where the mother holds the baby skin to skin against her chest.) Emery did really well with holding and kangaroo care on Saturday. On Sunday morning I called and talked to the nurse and Emery's vent settings were way down, and so Erik and I knew that at this point today was the day. The second attempt at re-extuabation. The NICU staff just plain kicked butt today. So, Erik and I got up there today and the docs came in to talk to us about the pla
ns for Emery. First, his feedings were cut back from 34 mL every 3 hours to 30 mL every 3 hours to keep him fluid restricted. The plan is to fluid restrict him, continue once-a-day steroid dosing after his last dose at 3 a.m. Monday, which means he'll recieve one dose Tuesday, one on Wednesday and one on Thursday. Then, the hope is to get him to inhaled steroids IF he stays off the vent. They said Emery, again, has a 50/50 chance of making it off of the vent, soooooooo Emery was extubated at 2:50 p.m. today and is still off the vent as of right now at 10:10. As we all know, he only made it 4-1/2 hours the last time with bad blood gases. This time he's tolerating it slightly better. His CO2 was 59, which is really good for him. Now, the tricky part. One of the reasons 
Emery failed off the vent last time, besides the obvious that he wasn't ready, was because he got so angry he finally couldn't handle it. Today, when they extubated him and put the tube in his nose, he got equally angry again. So much so that there was a point that he almost got reintubated. He cried so much and became so fussy that he desatted down to 48 (his goal is 80 to 95). He was given a lot of sedation before hand with the hopes of keeping him as fussless as possible. He also had a LOT of junk in his lungs, but he's been coughing it up. So, Erik and I held him and sang and patted his butt, the RT suctioned him and managed his O2 requirements, and the nurse helped calm him and the doc patiently waited to see if Emery would calm down. I could feel the moment when there was consideration of reintubation, but he was given a chance and is now over 7 hours off of the vent. Basically, Emery is fussy and uncomfortable so they are keeping him sedated around the clock and hope that he will adjust to the tube down his nose as opposed to his throat. Keep him in your prayers. Each time he gets fussy and angry he desats, but at one point the RT commented that he had surprisingly good reserve because he would desat and then come back up. He's been maintaining good saturations with fairly low oxygen requirements, but he's on about the highest settings that CPAP will allow, so if he doesn't tolerate this it's back to the vent, but for now he's already past the last time he was off. Dr. Winder said that any time off the vent is great because it helps strengthen his muscles of respiration. I can't tell you what Emery's long-term plans are, because right now everyone is very focused on the short-term. If he is reintubated he will go the jet ventilator, which is high-frequency ventilation (more gentle) and then to let him grow a bit more, do another steroid burst, and try to get him off the vent again. If he stays off, well then, we still let him grow. He's got a long way before he can make it to an O2 cannula. Before Emery was extubated Erik and I placed our hands o
n Emery and prayed to God to heal his lungs, to give him a chance. We do know this, Emery's lungs can work and do with a lot of help. Throughout the whole thing we continued to pray and God seems to be answering our prayers.
ns for Emery. First, his feedings were cut back from 34 mL every 3 hours to 30 mL every 3 hours to keep him fluid restricted. The plan is to fluid restrict him, continue once-a-day steroid dosing after his last dose at 3 a.m. Monday, which means he'll recieve one dose Tuesday, one on Wednesday and one on Thursday. Then, the hope is to get him to inhaled steroids IF he stays off the vent. They said Emery, again, has a 50/50 chance of making it off of the vent, soooooooo Emery was extubated at 2:50 p.m. today and is still off the vent as of right now at 10:10. As we all know, he only made it 4-1/2 hours the last time with bad blood gases. This time he's tolerating it slightly better. His CO2 was 59, which is really good for him. Now, the tricky part. One of the reasons 
Emery failed off the vent last time, besides the obvious that he wasn't ready, was because he got so angry he finally couldn't handle it. Today, when they extubated him and put the tube in his nose, he got equally angry again. So much so that there was a point that he almost got reintubated. He cried so much and became so fussy that he desatted down to 48 (his goal is 80 to 95). He was given a lot of sedation before hand with the hopes of keeping him as fussless as possible. He also had a LOT of junk in his lungs, but he's been coughing it up. So, Erik and I held him and sang and patted his butt, the RT suctioned him and managed his O2 requirements, and the nurse helped calm him and the doc patiently waited to see if Emery would calm down. I could feel the moment when there was consideration of reintubation, but he was given a chance and is now over 7 hours off of the vent. Basically, Emery is fussy and uncomfortable so they are keeping him sedated around the clock and hope that he will adjust to the tube down his nose as opposed to his throat. Keep him in your prayers. Each time he gets fussy and angry he desats, but at one point the RT commented that he had surprisingly good reserve because he would desat and then come back up. He's been maintaining good saturations with fairly low oxygen requirements, but he's on about the highest settings that CPAP will allow, so if he doesn't tolerate this it's back to the vent, but for now he's already past the last time he was off. Dr. Winder said that any time off the vent is great because it helps strengthen his muscles of respiration. I can't tell you what Emery's long-term plans are, because right now everyone is very focused on the short-term. If he is reintubated he will go the jet ventilator, which is high-frequency ventilation (more gentle) and then to let him grow a bit more, do another steroid burst, and try to get him off the vent again. If he stays off, well then, we still let him grow. He's got a long way before he can make it to an O2 cannula. Before Emery was extubated Erik and I placed our hands o
n Emery and prayed to God to heal his lungs, to give him a chance. We do know this, Emery's lungs can work and do with a lot of help. Throughout the whole thing we continued to pray and God seems to be answering our prayers.03/12/2007
Just a quick note before beginning the day. Emery was reintubated at 1:30 a.m., making it nearly 11 hours off of the vent. After a massive suction at midnight, they were unable to get his oxygen requirements below 80% to 90% so he had to be reintubated.
03/12/2007
Okay, please forgive the short update this morning. I started work and realized I couldn't handle it. I needed to go to Iowa City and be there for rounds to find out what the game plan was for Emery. My boss allowed me to go. I got up there and Emery was resting very comfortably (on the vent). His last dose of steroids was discontinued as there was no need for it really. Dr. G felt that Emery needed to be on a jet ventilator because it was more gentle on the lungs since he felt Emery would be on the vent for another 3 to 4 weeks at least, maybe even more. He did say that he felt Emery had made 'definite progress' since the last extubation. The RT today said that Emery looked like crap the last time he was extubated and he got bad blood gases. Yesterday, he looked good and handled it well. His highest blood gas was a PCO2 of 66, which is actually what he averages anyway. He did good, but he just tuckered out. The hope is in a month or so he will have new lung tissue growth and more strength for respiratory muscles of breathing. The doctors all remain optomistic for Emery, and one doctor today said she really didn't think he was going to need a trach. Now, my thing is, I don't care if he gets a trach. Give him one now and send him home. Unfortunately, it doesn't work that way. Emery is pretty stable but he's not even ready for home ventilation. He still needs to grow even for that. I got to kangaroo him, though, and it's so wonderful I can't even expres it. He and I both slept through it, and I held him for nearly 2 hours. It could have been longer but I had to get up. Erik and I both were a little down today, but I feel a little better after being there for rounds. Emery really has made progress. Yesterday was so joyful and stressful I will never be able to express it. The staff yesterday so flipping amazing yesterday it was unreal. I believe I had said in an early post that Emery was nearly reintubated right away, but Dr. W gave him a chance. Emery was so angry and agitated that it took all of us to help calm him. Throughout the day, even though he was sedated with chloral hydrate and Ativan, he continued to wake periodically and cry immediatley upon awakening, almost in a startled manner. He held his sats fairly well, but again, I really don't think he could have handled much more off the vent than what he did. The chances of him making it off the vent yesterday slightly resembled the scene in Finding Nemo where Gill was trying to explain to everyone in the tank how Nemo would squeeze through the tube, clog the ventilation with a rock, the dentist would take them all out and put them in bags... you all remember that part? It was going to take so many things to gel and work together in order for Emery to make it that it was nearly an impossible hope. He had to stay off the vent, maintain good blood gases, and manage to get through his steroid rebound to make it to inhaled steroids and even then the swelling in his lungs would be there, but hopefully not as bad, and then there was the fact that he had to tolerate it every time he cried. It was just too much. Anyway, keep little man in your prayers and let's hope the next time he comes off and stays off. The 11 hours he had yesterday was more than double what he did the first time, and he did much better than the last. Hope all is well! Love Sarah, Erik and Emery
03/14/2007
Up and down on the roller coaster we ride. Well, today was a sort of scary day. Erik and I are up with Emery right now. We drove up tonight with the hopes of giving him a bath. When we got into the parking deck I grabbed my cell phone, and there was a voice mail, from the University of Iowa. I only heard something about vent changes and sedation, and of course when you round that corner you never quite know what to expect. We walked in and the nurse said "the bath is out. Holding is out. His oxygen requirements have been all over the place." Then she went to get the doctor who had left me the message in the first place. On the way up the NICU I was telling Erik that I was scared because I had had a dream last night that Emery had died. It was a horrible dream that woke me up out of a dead sleep. I felt like it was a bad omen. I guess what they're thinking is that Emery is having a pretty bad rebound from the steroids. They did start inhaled steroids today. His diagnosis is now severe BPD. They are tweaking the vent settings. He had a CO2 of 92 today, which he has never ever climbed that high, not even when he was extubated the first time, but after some tweaking it came down to 49 so now they are tweaking again as they feel they are doing too much work for him. I guess I'm just tired. Dr. George said it was necessary to keep Emery sedated and comfortable so that he doesn't fight the vent, that he needs to survive his chronic lung disease before we can really do any work with him neurodevelpmentally. He said that they have treated hundreds of babies like Emery, and this is a normal course that preemies with severe lung disease take, but it still scares the crap out of me. I mean, seriously, I watch babies, preemies as young and small as Emery, come and go daily, and I mean that literally. The hope is that new lung tissue can grow before the lung tissue he has now becomes injured from the vent and oxygen. It's kind of a race. There is a definite risk of death from BPD. He is at least acting like it is a steroid rebound, very similar to the last time. They started inhaled steroids and bronchodilators today. I hope they help keep the swelling down and help him out. He has seriously nasty thick secretions. aren't expanding and complying the way we like, but his chest x-ray shows that he's over-expanded.' What the heck does that mean? More surfactant for crying out loud? I could buy an Escalade for the amount of surfactant that is in my child right now. Erik says not to worry, that this is just Emery. I try not to, I really do, and maybe I wouldn't worry so much had I not had the dream that he died last night, I don't know. I feel like Emery got short-changed, that his life could have been so much better had I not failed him, and the hope and reality of more children really is so minimal. I just don't know if I could take the risk, and I don't know if I could put a child through this again. The staff here is wonderful, but the NICU is hell. There is no other word to describe it. I don't want the only parenting I do to be at a hospital bedside, and even though I know I'm not alone, that there are literally thousands of parents going through this, it doesn't make it any easier. Emery is really starting to love being held, and now we can't even do that. It seems sometimes like every time I pray for help for Emery he just gets worse. It is so frustrating. There was a little more talk of a trach tonight, which doesn't frighten me in the least. I just want him home. The doctor did say, though, that in terms of Emery's stay in the NICU, he does feel we've made it past the most critical stage and now we are trying to manage his lung disease. I hope and pray that it is manageable.
03/15/2007
don't have much. They are still tweaking. His blood gas actually went back up to 72 last night and then back down to 66 this morning. His chest x-ray was better last night and a little worse this morning. They are 'tweaking' the vent.
Check out the lyrics though to this song:
Down on my knees again tonight, hoping this prayer will turn out right.
See, there is a boy that needs your help. I've done all that i can do myself.
His mother is tired, I'm sure you can understand.
Each night as he sleeps, she goes in to hold his hand and she tries not to cry as the tears fill her eyes.
Can you hear me? Am I getting trough tonight? Can you see him? Can you make him feel alright?
If you can hear me, let me take his place somehow See he's not just anyone, he's my son.
Sometimes late at night i watch him sleep. I dream of a boy he'd like to be.
I try to be strong and see him through, but God who he needs right now is you. Let him grow old, live life without this fear.
What would I be living without him here? He's so tired and he's scared.
Let him know that youre there.
Can you hear me? Am I getting trough tonight? Can you see him? Can you make him feel alright?
If you can hear me, let me take his place somehow See he's not just anyone, he's my son.
Can you hear me? Am I getting through tonight? Can you see him? Can you make him feel alright If you can hear me, let me take his place somehow See he's not just anyone Can you hear me? Can you see him? Please don't leave him, he's my son.
Check out the lyrics though to this song:
Down on my knees again tonight, hoping this prayer will turn out right.
See, there is a boy that needs your help. I've done all that i can do myself.
His mother is tired, I'm sure you can understand.
Each night as he sleeps, she goes in to hold his hand and she tries not to cry as the tears fill her eyes.
Can you hear me? Am I getting trough tonight? Can you see him? Can you make him feel alright?
If you can hear me, let me take his place somehow See he's not just anyone, he's my son.
Sometimes late at night i watch him sleep. I dream of a boy he'd like to be.
I try to be strong and see him through, but God who he needs right now is you. Let him grow old, live life without this fear.
What would I be living without him here? He's so tired and he's scared.
Let him know that youre there.
Can you hear me? Am I getting trough tonight? Can you see him? Can you make him feel alright?
If you can hear me, let me take his place somehow See he's not just anyone, he's my son.
Can you hear me? Am I getting through tonight? Can you see him? Can you make him feel alright If you can hear me, let me take his place somehow See he's not just anyone Can you hear me? Can you see him? Please don't leave him, he's my son.
03/19/2007
I don't have much. I haven't been able to post mostly because I'm not really sure what's going on. Emery is not doing great but he's not doing bad either. Mostly it's been vent tweaks and constant blood gases and chest x-rays since that rebound last Wednesday. Erik finally got to give him a bath on Sunday, and I have been holding Emery, which he seems to truly love. He loves to be 'kangarooed.' I don't know if I explained that before or not, but he likes to lie skin-to-skin against my chest. He rests very comfortably and hardly desats, if at all, while I'm holding him that way. Plus, there is nothing better than snuggling close to your baby. Anyway, after it's all done, when the nurses and RTs put him back in bed he pretty much just lies there like a noodle he's so relaxed. It's good for him. He's up to 40 mL every 3 hours and tolerating it very well. He weighs 5 pounds 9 ounces. Emery grows well. I asked the nutritionist about getting him off the 30 k/cal formula which makes him so uncomfortable, but she said they have to keep Emery fluid restricted because of his sick lungs so he's stuck on that stuff for a while. I was worried about feeding him solids, and she said not to worry. The usually feed solids at a corrected gestational age and not the actual age for preemies and keeping him in breast milk is best... so a pumping I will go. I broke down and called Dr. A today. I know he's not the attending right now, but Emery just hasn't been doing well. His blood gases are all over, he has one lung expanded and one lung a little collapsed right now, and his oxygen requirements are running higher. It was sort a fluke that I got ahold of Dr. A anyway. I called some 1-800 number I found on the website and it gave me another doctor's office's secretary, and so I asked him if there was some way I could leave Dr. A a voice mail and they transferred me into him and he answered the phone. He reassured me as always. I just need to hear it. I'm so worried about Emmy. Dr. A just told me that he has dense lungs (which we knew) and the last 3 babies like Emery this year had to go through the same thing where it just took some time to soften the lungs up. He said he didn't think Emery's lungs were the worst he had seen (and he said this while looking at his chest x-rays) so I felt better. I just need to know that even though Emery is not great he's not the worst. I need reassurance. It's been a long time since someone said that to me, that they thought Emery would live and grow and be fine. Most just fast talk and confuse me. Emery has a funny personality, if anyone wants an idea of what he's like now that he's starting to establish himself. They have to put socks on his hands so he won't extubate himself, and when they swaddle him with his hands tucked in he somehow Houdinis his hands out and goes straight for the tube. He smiles a lot (whether real or fake, who cares), he loves to cuddle, and when he gets mad you know it complete with a shaking bottom lip and breath holding. He has large blue eyes and looks at everything, and he loves to suck on his binky. The funny thing is, if Erik or I hold the binky he will use his hand to hold our hand to hold the binky in, but he won't use his hand to hold it in. He had another eye exam and he is just at the point of progressing for ROP so they will be back next week.. ugh! That day of the eye exam, though, I got to hold him and while I held him he got his hands into tiny fists and rubbed his eyes. Emery is signed up to have cuddlers come in and hold him on Monday and Thursday. I didn't know if he would be able to have it since he hasn't been doing so well, but the doc said no problem so he must not be doing too bad. Keep him in your prayers! Oh, and keep us in your prayers. We found out we have to move to Iowa. Illinois' social service programs suck! Write your congressmen.
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