01/02/2007

Hello everyone! I first want to say thanks for all of the support and phone calls. I hope everyone understands that I can't talk to everyone, and it gets really hard repeating everything over and over so please feel free to visit this page for all of the latest updates!



Many of you know by now that Emery was born on December 18, 2006 at 9:38 p.m. 15 weeks early at 25-6/7 weeks gestation (so really, just about 14 weeks early). I don't know why the web page says we're expecting. Truth be told, I really really wish we were still expecting.



Anyway, Emery was born because I had severe preeclampsia and it apparently was better for mom and baby for him to be out rather than in. So now, Erik and I have entered the NICU nightmare, which is some days horrid and other days joyful. The NICU staff has been very gracious, as has everyone.



Emery is stable. He has some complications, such as a patent ductus arteriosus and respiratory distress syndrome. As of right now, he has been receiving medication to try and close the PDA. If it isn't closed with this next round of medication then he will get surgery. Please keep Emery in your prayers. Though the surgery is sort of 'standard' in preemies, it's certainly not common or easy because he does only weigh about 1 pound 10 ounces. He seems to be a fighter, though, and loaded with personality already! We've discovered that he is happiest when no one talks to him or bothers him, so he is antisocial just like his parents. It's okay, though, we'll get him into therapy later.



As of right now, Erik and I travel back and forth each day and then spend weekends at the Ronald McDonald House. Feel free to post and ask questions. It will be easiest for me to keep everyone updated here. Thank you all for all of the prayers and donations. God has certainly been working through all of you and meeting our needs before we even ask! Much love, Sarah

01/04/2007

It's a miracle! For all of you who have been praying for Emery and his heart and lungs, I want you to know that the Lord has listened. Erik and I spoke with one of the doctors tonight and we learned that Emery's heart condition is considered no longer there. The PDA is closed after his last round of medication. Emery had an echocardiogram today and the nurses and doctors listened to his heart. They saw no PDA on the echo and heard no murmur. As of right now, there is no heart surgery planned. The doctors are planning on 'watchful waiting' to see how he progresses, and I'm hoping that they will up his feeding tomorrow so that he can get the appropriate nutrition. He still needs lots of prayers for his lungs. I want to thank all of you for your comments and prayers. They have meant so much. Last night, Erik and I had a chance to go back to the Furnace and tell the kids about what was going on. I miss them all so much. I have to remember that God has blessed me with many kids and not just one. The kids prayed for us. They've twice given us $$ that has paid for traveling expenses back and forth to Iowa City. I am amazed at how much God is everywhere right now in this tough situation. Though this is the hardest thing we have ever been through, just knowing that so many of you are praying is a source of tremendous comfort. Thank you all for being there and for being supportive. The nurse last night actually caught Emery on film with his eyes open, so I'm hoping to have those scanned and on the site soon. Again, thank you all so much. You are all gifts from God. I can tell you that neither of us feel quite worthy of all of the love and support you have given us, so I will never be able to thank you all enough. I have been praying for you all as well, though, and throughout all of this we are still praising and thanking God!

01/07/2007

Well, Erik and I are home from our weekend with Emery. We are both having a hard time being home. When we are there it really doesn't matter how he's doing, but when we leave we struggle quite a bit. Emery is doing pretty good. The doctors have upped his feedings to 4 mL every 4 hours, and he's doing okay with those but still has some residual on occasion. He can still use all of your prayers obviously. It's possible he will need heart surgery when he is 6 months of age, and he has all of the usual complications of a micropreemie. It's basically a waiting game. Whatever pops up, the doctors treat. It's frustrating and tiring, and yet I hope throughout all of this our faith will be strengthened. So many of you have come together to pray for him already, and that in and of itself is a miracle. Many of you have put Emery on prayer lists at your churches. Would you all be willing to let me know what churches he is on the list? I have a hope that some day Erik and I can take him to each of the churches who prayed for him and offer thanks. Anyway, he is still gaining weight, and most importantly, he's still here! Thanks for all of the support. Love, Sarah and Erik

01/12/2007

It's been a few days since I have posted, which is actually a good thing. Emery had an awesome week. He was happy, content, tolerating higher feeds well, and generally doing very well. Unfortunately he has taken a turn for the worse. On Wednesday his lungs 'collapsed,' and since then he has developed an infection, his PDA is open again, he is having blood pressure problems, he isn't urinating well, and the doctor won't do surgery while he has an infection. The good news is he is still here and the doctors are treating him. After many talks with the doctors and nurses all day they have assured me that Emery is 'just a little sick' but he does need surgery, he does need to get rid of his infection, and his lungs are still volatile. This is one of those setbacks that they talk about. Since all of this has happened they have cut his feeds again. This is a hard road that we knew we would be on, but we often don't like it. I can't help but worry. I worried much less when he was doing well. He's still here though. The doctors have said that he will get sicker after the surgery but 'most' kids rebound after a few days, whatever the heck that means. Erik and I are trying to stay positive. I want to thank you for all of the support and kindness that everyone has offered, and I do ask you to please, once again, keep Emery in your thoughts and prayers, and pray for Erik and me as well. Emery will be one month old next week ( can you believe it??) There are still many more months that we will have to spend in the NICU if all goes well. I will update more as the weekend progresses and we know more. His lungs do seem to be opening up a little again, and he looks pink and healthy! Thank you again, Love Sarah and Erik

01/13/2007

Crap, I spent 10 minutes typing and lost the darn thing. Emery is on the mend!! We just got done talking with the doctors. The main concerns today are the infection and the PDA, both of which seem to be doing better. Emery will likely have heart surgery on Monday. If you haven't received a phone call, please do not be offended. We are in the NICU now and unable to receive calls or call out. Emery is currently being sedated with Ativan and morphine. This is to help him sleep and breathe better, and his lungs do look pretty good for him which is to say that they do not look as bad. Awake, Emery is a spunky fighter who burns to many calories being mad. Asleep, he heals and grows. This is best for him. His blood pressure is doing better, his urine output has been great, and he looks pink and healthy albeit a little fluid-filled. The infection seems to be getting a little better as well. I haven't read any messages yet, so I'll thank you all in advance for your prayers and thoughts. Thank you all for your support, friendship and love!! Erik, Sarah, and Emery

01/14/2007

Okay, it's Sunday and I'm going to do a quick update because it might be a few days. Tomorrow is Monday, and they are putting Emery on the surgery schedule. He still might not need surgery. His PDA is open, and this creates a load of problems. It affects his lung function, his nutritional status, and basically as long as it is open and they are treating it with medicine (which can lead to kidney problems) they can't aggressively wean him from the ventilator or aggressively up his feeds for nutrition. They really want the PDA closed. The problem is that if the medication works again, tomorrow is the pediatric thoracic surgeon's last day, and he is willing to do the surgery but only if it is still open. In other words, this PDA problem could go on for a long time and dramatically lengthen Emery's stay in the NICU, and without a surgeon to close it... this could on forever. This one is up to God. I have no idea what to pray for on this. As you pray for Emery, pray for his healing, his lungs, stability and that he would come home to us some day. Also, all of you have asked how you can help so here's some ways in which we trully do need help. We have to get the house ready. Anyone with ideas or some extra time, get a hold of me. Keep all of us in your thoughts and prayers, and pray for Erik and me as well. I will try to update after the surgery (provided there is one... ) Basically, the docs told me to go ahead and be here 'in case.' Thank you all again, Love Sarah, Erik and Emery

01/14/2007

Okay, I am a stalker with the updates this weekend. I apologize. Well, your prayers are obviously being heard. Guess what? The PDA is closed. Emery isn't on the surgery schedule. The surgeon wouldn't touch him this weekend because he had the infection, so the doctors treated the PDA again with medication and... yep, you guessed it, prayer warriors, it closed. Basically, the doctor said that they can't justify surgery when there is no problem. It would be like doing an appendectomy on someone who already had one done. Anyway, keep Emery in your prayers (like you are all already doing, for which we thank you) that the PDA will STAY CLOSED this time. Part of the reason he had those few bad days was because the infection blew it wide open. The pediatric thoracic surgeon is leaving the University of Iowa. His last day is tomorrow, and Emery obviously doesn't need surgery, so if the PDA opens again it creates a bit of a problem for the little guy. The new peds thoracic surgeon doesn't start for a few weeks. The docs have talked about doing it at another facility, but I think the closest is Milwaukee so please let's all pray that it is closed for good and stays closed! Here is some perspective. Emery's tummy is the size of a marble and his heart is the slightly larger than a Hershey's kiss. Anyway, the PDA is being treated with medication right now and he is doing very well. The infection is getting better, the PDA is closed, his lungs are doing better, his blood pressure is better, and he was only sedated once today. I didn't sleep at all Friday night. It's so hard not to worry, but I feel much more at peace today. Sometimes just seeing him helps. He looks pretty good. He's a little puffy from the extra fluid accumulation, but that will take a few days to go away. Thank you all for your kind words and all of your help and hope. For now we will celebrate Emery's small victories. Much love, Sarah, Erik and Emery

01/17/2007

Ah, glorious days. I realized on the way here to Iowa City tonight that I haven't cried since Saturday night, at which time I had spent nearly 4 straight days crying. Emery has been having some really good days. He was saturating so well they actually moved his vent settings down from a MAP (mean airway pressure) of 18 to 14, but now he's back up to 15.. still an improvement for our precious little guy! A few updates: First, his vent settings are down and he is saturating really well. He occasionally desaturates, but that is usually when he gets mad. (I still find his temper tantrums perversely enjoyable. It makes me happy to know he's communicating in some way.) His blood pressures are so so, and he hasn't urinated much tonight so of course those things naturally worry, but the nurses and doctors seem unphased by this. His infection seems to be doing better. We are going to assume that Emery weighs 2 pounds now. He has some extra fluid on him that needs to come off still. His actually weight is 2 pounds 4-1/2 ounces, but with the fluid that needs to come off they are going by the 900-gram mark. He looks much much better compared to the weekend. There is a new doctor rounding for the next 2 weeks. It is strange talking to new and different doctors all of the time, but it's a good thing because no one is stuck in any mindset. They all do different things. Anyway, the hope is that Emery can either wean from this ventilator to a different one or wean to CPAP in a few weeks, which means... FINALLY, if it goes well Erik and I will get to hold him. He is one month old on January 18, and we have yet to hold our son. This has been the shortest/longest month of my life. Emery's NICU stay is not even half over. Useless fact: I pump more ounces in breast milk in one day than Emery weighs. As always, please keep us in your prayers. Pray that his PDA stays closed, his kidneys function well, he stays free from infection, his lungs heal, and he tolerates feeds well. On a happy note, Erik and I bought a new car tonight, one that is road-worthy to get us up here and back and one that will safely carry our son home from here some day. Pray that he heals well and comes home to us. (Scary thought.. I mangled his diaper tonight). We love you all and thank you so much for your prayers, donations and well wishes. You are all awesome!! Love, Sarah, Erik, and Emery

01/18/2007

Man, I just read all of your comments and now I feel a little guilty... We got the '1 a.m. phone call' this morning. Neither of us have slept much. I guess the PDA is open again. His blood pressure dropped and he stopped peeing again and those are both indicators that it's open. He doesn't show any signs of kidney failure. His capillary refill is great. He's back on the dopamine and had a very small urine output this morning at 4 a.m. I actually do not know why the nurse called us at this time. Last week he was much much sicker. I guess it's the nurses call, but once the phone rings you don't get much sleep after that. Anyway, I guess at this time pray for a miracle whatever that is. If the duct is open there is no surgeon to fix it. He would have to be sent to another facility and transfers on tiny babies are very hard. As long as this duct is open they can't feed him and he doesn't grow, so pray for a miracle as far as the duct is concerned. Anyway, he had a good night. He is still down to a map of 15 with very few desaturations. He didn't desaturate once when Erik and I were there last night. He looked great to us, but he is getting puffy again because of the fluid (per the nurse). I am having the doctors call me today after rounds. I will post more as I know it. Thank you so much for all of your support. I love coming on here in the morning and seeing all of the comments. I want to print this off and let Emery know how much he was loved from the very beginning. Of course, pray that he comes home to us. The suckiest part about all of this right now is that the NICU has had a 'changing of the guard.' All of the doctors round for 2 weeks or so and then another attending physician comes on. Once you get used to a physician, he or she is gone before you know it. I met the new doctor last night. He made a point to stop by our room and come and talk to us. He's very nice. It's all just different. I want to emphasize that Emery is not as sick as he was last week. We just need a miracle (again lol!) Everyone read Scott's comment. I like the idea. Love you all, Sarah, Erik and Emery

01/18/2007

The good, the bad, and the ugly: Good news, bad news, and scary news all at once! Here is the bad news. That darn PDA is open! The docs aren't surprised, either. The problem with this PDA has obviously been not having a pediatric thoracic surgeon. This is the bad news. This is the scary news. Emery is on the surgical schedule for heart surgery on Monday. The new pediatric thoracic surgeon's credentialing has come through and he will be at the hospital this weekend and will be performing the surgery Monday. Please pray for skill for the surgeon and for Emery to recover! The good news. Emery is really stable. He's been covered on antiobiotics. He's peeing very well. His blood pressures are doing good. He's about as ready for surgery as he's ever going to get. The doctors are going to minimally treat his PDA and just to help support him until he can be operated on on Monday. Now please keep us all in your prayers. Babies like Emery tend to get a little sicker after surgery but he does need it so please pray for him on Monday and for the rest of that week that he can recover. I will keep everyone updated,

01/20/2007

Hello everyone! I am going to do an update before Monday, which is Emery's big day. I will try to update then, but who knows when I'll get to a computer. Well, as we all know by now, Emery's PDA is open. The doctors are minimally treating it so that he can have surgery on Monday. He's on the schedule for Monday afternoon. Please keep Emery, Erik and I in all of your prayers. As miracles have it, the new pediatric thoracic surgeon was in town this weekend. I believe he was touring a facility, and the hospital granted him temporary privelages with the adult thoracic surgeon who will be in attendance for Emery's surgery. Apparently there are a large group of people involved in this thing. There will be two surgeons, two anesthesiologists, at least one neonatologist, the NICU nurses, a respiratory therapist, and the nurse practitioner who will be there as well but not part of the team. I met her yesterday and she went over the procedure with me and I signed the consent. She actually worked with Dr. Davis (the new surgeon) when he did part of his fellowship at the University of Iowa. I've done a little reading on Dr. Davis, and he sounds utterly qualified... like, they'd bring someone in who wasn't, but still I had to look up the guy. I can't help myself sometimes. Anyway, the doctor said that the U of I interviewed a lot of people for the position and they were very happy to have this surgeon. That comment in of itself alleviated a lot of fear. I guess any time a children's hospital and teaching hospital is happy to have a new physician they feel will be an asset, it's always a good thing! Anyway, the procedure itself will take about an hour. The actual surgery takes 10 minutes, but the rest of the time is spent observing the baby and making sure there are no complications. The nurse practitioner will come out and tell me how the procedure went. The surgeon will be doing another baby's ligation as well that day, and I am fortunate in that the fellow will be going to surgery with him to manage his vent. She is the one who is most familiar with his case as she has been one of his physicians since day one. I had planned on asking her to be there anyway, and she stopped by the room yesterday to tell me she was going with. Here is some exciting news. They will switching Emery's vent 3 hours before the surgery on Monday (because he cannot be on an oscillator for it) and, if all goes well, Erik and I will finally be able to hold him for a bit before the surgery. I am scared, excited and nervous all at the same time. I don't really feel like I've bonded with him yet. I'm crazy in love with the boy, but I want to hold him. It's a bizarre world when you give birth and your baby is taken away and a group of strangers tend to your child's care daily. One of the nurses gave us a big compliment/ego boost yesterday, though. She said that Emery does best when Mom and Dad are around. That is when he is the most peaceful. So that's the story. Little love is having surgery. The doctors feel it is obviously best for him. The nurse practitioner said that they would re-evaluate Emery's PDA on Monday to see if it was still there and I said "Oh, great. It will probably close and he won't need surgery." She looked at me and laughed and said "I have never heard anyone complain that their child wouldn't need surgery." I snickered a little and when she left the nurses and the fellow and I all laughed about it because we are truly hoping that Emery has this surgery to correct this problem. This PDA is really difficult on him. Thanks again for all of the support and prayers. Keep us in your prayers on Monday and for the following few days after surgery. Preemie lungs tend to get stiffer after a PDA ligation. Pray that this is a big turning point for Emery and a big step in his road to healing and growing! We love you all! Sarah, Erik and Emery

01/22/2007

And the NICU shuffle begins..... As of today at 10 a.m., the surgeon wished to have the PDA reevaluated. It is closed. They will not be switching his ventilator. Erik and I did not get to hold him. He is 5 weeks old today. The doctors were very apologetic and really went to bat for Emery, but it in the end Erik and I prayed before they reevaluated Emery and left it up to God, and the PDA is closed. As always, we want what is best for Emery. Because they haven't been able to feed Emery breast milk or give him the fluid he needs, his liver is now starting to show signs of stress. Every time this PDA opens they have to put him back on IV nutrition, which stresses the liver. They do not feel it will have lasting effects on him. Erik says we should remain hopeful that every time it closes it stays closed. Thank you so much for all of your prayers and support. I know some of you have been through the emotional ringer with this as well. Erik and I will spend the day with him as planned. He is about 2 pounds 3 ounces, if I haven't said that before. The PDA open will not stop his growth, it will only slow it, and cause liver stress and prolong his ventilator course and NICU stay.

01/23/2007

So there really isn't anything new to report, other than Emery had a good night and a good day. The nurse says he's pink and healthy looking and running around 35% to 40% oxygen. His chest x-ray looked better today than yesterday. His blood gases have really always been pretty good with the exception of his CO2 gas exchange because his lungs are so stiff. He's off the antibiotics now, and that worries me a little. They are so prone to infection. I'm still bummed about the PDA not getting surgically closed. It's just hard on him to have it open, and I hate the idea of him having another infection. So many of you ask when is he coming home, and though so many of you keep telling me that you have a 'good feeling' about all of this, I think the real answer to that is simply not when but if. Some babies are miracles. Let's pray that Emery is one of those. The doctors had talked about starting Emery on steroids for lung development, but that went by the wayside when his PDA opened up again. Let's all pray that Emery's lungs get better without steroids and that his PDA stays closed. Steroids tend to weaken a preemie's immune system, and they have such a hard time fighting off infection. I was going to go see him tonight and I had a sore throat again so I decided not to. I hate having to stay away from him, even for just a minute. There have been a lot of you that have asked what you can do for Erik and I, many people saying 'if you need anything at all don't hesitate to ask.' There's a problem with that. We won't ask. It's not a matter of pride, either. We simply don't know what we need. I guess if God puts it on your heart to do something, just do it. Also, if you're going to come over, call first. It's not that we don't like visitors, it's that I spend 3 to 4 hours a day pumping in the middle of my living room. If people are coming over I just want to be able to schedule pumps. The doctor said that every good day Emery has is a day that makes him stronger, and he really did have an uneventful weekend and is looking pretty good. The docs have upped his feeds to 4 mL every 6 hours, and he's tolerating them well. I'll get some new pics up soon because he really is beautiful and starting to look like a real baby. Thank you for all of your prayers and support. This has been a very hard road and we couldn't do any of it without you! Love, Sarah, Erik and Emery

01/24/2007

So Erik and I just saw the babes. He's looking really good. He's on some medication for his liver but I can't remember the name. I guess it helps really well and the "liver problems" are not that big of a deal. I don't have an accurate description of it other than it doesn't seem to be that big of a deal and is treatable. Dr. W said that his chest x-ray this morning was "beautiful." I guess his chest was well expanded so they went down on his mean airway pressure to 15 again and he's been running about 40% oxygen. Dr. R said he looked like he might have some areas of chronic lung disease, but the one thing I was told from the very beginning was that he would have chronic lung disease so I'm not surprised. I guess lots of preemies get it. His feeds are up to 6 mL every 3 hours. He looked really good tonight. His nurse gave him tummy time and moved him around to keep him comfortable. He actually sucked his thumb while we were there. He seems to be doing all in all really well. I hope the stupid PDA stays closed! I like it when he has uneventful days. Oh, I had one of the docs define what 'sicker' meant. In an earlier post I had talked about how the surgery tended to make babies sicker, and I never really quite knew what they were talking about. When I hear sicker I think of E. coli or flesh-eating streptococcus. Anyway, it just means that they require more support; i.e. with breathing, medication, etc. Other than that, no news to report on the Emery front. He's pink and healthy. It will be quite some time before Erik and I get to hold him, maybe several more weeks, and no we're not okay with it just because we wouldn't get to hold him if I were still pregnant (yes, some people actually say things like that.) It will be a while. Some days I can hardly wait. As always, we love you all and appreciate all that you are doing for us! Love, Sarah, Erik and Emery

01/26/2007

Well, maybe I'm hypersensitive today or something, I don't know, but I just got my hand slapped by the NICU unit clerks. Every time Erik and I come see Emery I go into the consult room and update on the computer there. I see lots of people in there, and there are children's books and things so I just assumed it was okay to go in there. Turns out, it's not. The woman told me I should have never used the one in there and I needed to use the one upstairs. It's so trivial, I know. It's just that I spend every day walking tight as a drum because I don't know if Emery is going to make it or not. It's not so cut and dry as him coming home at his due date. The kid was born at 25-6/7 weeks' gestation. His chances for survival from that were around 60%. The survival rate goes up for micropreemies if they are born in a level III NICU, which he was, so it goes up to about 88%, but his lungs are stiffer than someone of his gestational age and I guess he's considered IUGR (intrauterine growth restriction) which means he was smaller than what he should have been so it lowers it a little bit. All in all, there just is no guarantee as far as any of this is concerned. Every time I hear the phone ring I panic, especially if I see the University of Iowa on the caller ID. Sometimes I watch a movie and I forget about what's going on and then a wave of guilt hits me so hard I can hardly breathe, like I shouldn't be enjoying anything while he's here. Every time I eat my stomach clenches and even though I'm starving I want to throw up and I feel guilty for eating. It's a strange, bizarre world that Erik and I are in right now. I cry every day. I'm not used to crying period, let alone every day. So when a nurse tells me it's too much stimulation when I wipe spit of my son's mouth or a clerk scolds me for doing something I never knew I wasn't supposed to be doing, I get upset. It's like I want to scream at the people here. Emery will be 6 weeks old on Monday. We have yet to hold him. Don't they understand that? Anyway, I started getting panicky somewhere around noon that Emery wasn't doing so well. They went back up on his MAP because his PCO2 was 78%... if that sounds like greek to most of you, join the club. I don't know what it means, either, other than Emery's lungs aren't improving, but the neonatal nurse practitioner came to talk to us tonight and told us that, first, the PDA is still closed, which is a good thing, and second that they move at a snails pace in the NICU. I shouldn't worry that he's spent 6 weeks on a ventilator. Dr. R came by and said that his chest x-ray looked good for him and that if I was going to compare how bad my baby was doing with regards to other babies, then I needed to consider too that my baby is doing better than the sick ones. He's somewhere in the middle. I just hope and pray that he can breathe on his own some day. I want him to come home some day. He's had mostly a good day. His feedings are up to 10 mL every 3 hours, and they will probably be moved up tomorrow. Full feeds for him are about 18 mL every 3 hours. I would love to get him there. We've never had the PDA closed for any real length of time to get him fed. They are lowering his blood pressure medication. His blood pressures are doing fine. Thank you for the cards and prayers. Oh, Sara wanted me to mention trivia night... Trivia Night is Saturday, February 17, 2007. It is teams of 8 people, $10 a person. Snacks and pop .50 cents. Doors open at 6 p.m. and trivia starts at 6:30. I think there is a bake sale, too. The youth group kids are doing this for Erik and me. Call Sara Princell at 309-764-**** for questions or for sign up. If I've missed something Sara let me know. I don't have the flier with me right now. We love you all! Sarah, Erik and Emery

01/27/2007

Well, Erik and I are here and Emery had a little bit of an improvement. His PCO2 came down to 61% this morning. The doctors want it between 50% and 70% for him. His lungs are stiff. His MAP is still set at 16 and he runs on average 45% O2. They docs upped his feeds to 12 mL every 3 hours. I am not suprised that our boy loves to eat but can't breathe.... May as well give him doughnuts and video games now. Aunt Sharon - thank you so much for your comment. One of the nurses came by to talk to us last night and basically said that babies change on a dime and they are resilliant. I guess today I have a little hope that he can pull through this. Thank you for your comments. Emery still needs prayer for his lungs. We've made some milestones. The PDA has been closed for 6 days. He's tolerating his feeds pretty well. In fact, they are cutting down on his venous nutrition tonight. The biggest problem obviously is his lungs. I think we will need a miracle there. On the up side, I haven't cried today. I love to look at him. He's a beautiful boy. He will be 6 weeks old on Monday. We love you all! Sarah, Erik and Emery

01/28/2007

There is very little to report today. I had one of the doctors come by to talk to me today about Emery. Basically, Emery's lungs are on the worse side of what they have seen. They are not the worst they have ever seen. I didn't have the heart to ask if those babies survived or not. He said to expect a 6-month hospital stay at least for Emery, which means he would come home some time in June. That seems an eternity. Three more weeks in utero would have cut 4 months off of his hospital stay, with the small exception that he was done growing. There is nothing I could have done to have kept him in there any longer. I like to try and put blame on myself like the fact that I didn't take prenatal vitamins for the first 11 weeks because I was too sick or the fact that my iron was so low I should have been taking iron pills or that I was overweight when I got pregnant, but they have all told me there was nothing that could have been done differently to change the outcome. We're both lucky to be alive right now. It's funny, I quit drinking and smoking and somehow ended up with high blood pressure. Go figure. I actually read one study that showed that pregnant women who smoked had a smaller chance of having preeclampsia, yet those women had preterm labor anyway. I can't win. There are always 'unforseen' complications which could cause serious problems with Emery that do cause death, but obviously they can't predict them. One of them is obviously infection, and they do try to catch them right away in order to treat them as soon as possible. Emery is growing well. His weight is 2 pounds 10 ounces, which means he is twice his birth weight. He said Emery's lungs will never be 'good' or normal-looking, but he also said that it is impossible to predict what he could look like at age 50 because they have only been saving babies Emery's size for about 10 years, which means that medical science could come up with something in 10 years that would fix the problem or God could always give us a miracle. I prefer the latter myself. I figure whatever man can do God can certainly do better. Emery's oxygen requirements are high today, around 65%, and his saturations are all over but he's recovering from his desaturations much quicker than usual. The doctor said to celebrate baby steps and small, small milestones in Emery's life. He is tolerating feeding well and he is growing and he has had no brain bleed. Those are significant obstacles to overcome in preemies. Right now I'm not really trying to look past what will happen after Emery comes off the vent. He will likely spend another 6 weeks on it. Our only hope right now is that his lungs heal enough to come off the ventilator. His PDA still seems to be closed. For those of you who are worried, I'm not very depressed today. In fact, I feel pretty peaceful. It's just me and Emery hanging out. I've been singing to him. Every once in a while he pops opens his eyes to see what's going on. We love you all and thanks for the comments! Keep them coming. They make my day :) Love, Sarah, Erik and Emery

01/29/2007

Very little to report today. The nurse last night started getting nervous because Emery had over 100 gm of weight gain and his blood pressures were wide-spread again, which means there is either an infection or the PDA is open. The docs today gave him a diuretic to get rid of some extra fluid. His lab values showed no evidence of an infection. It is day 7 of uneventfulness and I'm waiting for the shoe to drop. I ask that those of you who are praying for Emery to keep praying for his PDA to stay closed and for his lungs to heal. Erik and I were prayed over on Sunday, and the woman said she saw Jesus standing over Emery touching his chest. I do hope every day for a miracle. I call every day hoping I'll hear one. Maybe the miracle is that it's been 7 uneventful days. Maybe the miracle is I cried only once today. I just hope his lungs can heal a little. The heart issue was never that big of a deal to me because a PDA is common in preemies as well as PDA ligation. About 50% of preemies with PDAs get ligations. It's the lungs that are the problem. There are no surgeries to fix lungs. Patience and time is the only thing that fixes lungs, and patience never was my virtue.

Someone sent this to me today. It's an essay by Erma Bombeck. The Special Mother

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. “Armstrong, Beth, son. Patron saint, Matthew. “Forest, Majorie, daughter. Patron saint, Ceceila. “Rutledge, Carrie, twins. Patron saint... give her Gerard. He’s used to profanity. Finally, He passes a name to an angel and smiles, “Give her a premature baby.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly, “ smiles God. “Could I give a premature baby a mother who does not know laughter? That would be cruel.” “But does she have patience?” asks the angel. “I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. “I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.” “But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps, “Selfishness? Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn’t realize it yet, but she is to be envied. “She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy’ for the first time, she will be witness to a miracle and know it. “I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.” “And what about her patron saint?” asks the angel, the pen poised in mid-air. God smiles. “A mirror will suffice.” Okay, I don't think I'm a patron saint but a very close friend told me that God gave Emery the choice of being the sick baby with us as parents or being the normal healthy baby of a drug addict/alcoholic, and Emery chose us.

Love you all, Sarah, Erik and Emery

01/31/2007

Well, we've got some exciting things to report and one not-so-exciting thing to report. I'm almost afraid to even mention it, but the PDA has been closed for 9 days. There is a part of me that doesn't want to speak it out loud because I don't want to jinx it, but it's been closed now for a bit, so let's all thank God for that one! Next, Emery is up to full feeds and tolerating them!! He is at 18 mL every 3 hours with 27-kcal human milk fortifier. He now weighs over 3 pounds. NO, he didn't gain all of that weight in a week. Whenever I post the weight I go by the previous week's weight because he has had a lot of extra fluid on him, but now they are saying this is a stable and true weight. He now has a layer of fat and looks like a baby instead of a wrinkly old man. He has graduated to big-boy preemie diapers and no longer fits into micropreemie diapers. All of his bodily functions work well (I'm sure you can all figure that one out!) Next, Emery had his first eye exam for retinopathy of prematurity, and it is negative! There is no sign of disease thus far!! One more exciting thing... if Emery tolerates his feedings well then they will remove his percutaneous line tonight, which means he will have no IV access for bit. That is part of what makes them so susceptible to infection. Now, the not-so-happy news. Emery had to go up a bit on his pressures on the vent. His PCO2 is just bad. That's all there is to it. He's within normal range for him. He's being managed right now. Please continue to pray for Emery's precious lungs. The hardest thing I am having to cope with is the way I perceive the nurses reacting to him. Some like he is never coming home or that he will survive. Some act like he's the worst baby they've seen. I know babies like Emery have a low survival rate, but it's hard. Any time there is talk of Emery's lungs it is usually with a look of pity at me. Some days I can hardly stand it. I feel like my baby is the sickest one here right now, but sometimes miracles do happen. We are now on day 45 in the NICU. Other times people just care for him and act like he's coming home no matter what. I'm going to stress this for the last time.. Emery's weight has nothing to do with him coming home. He's gaining weight well, and that's good, but unless he gets enough nutrition to build some new lung function then nothing can be done for him. But today is a good day. No ROP is a huge thing and the fact that he is on full feeds and tolerating them well! He really is a beautiful baby. I hope and pray I can see him without tubes in his mouth. We still have yet to hold him. Okay, I'm going to go back and smooch him now. We love you all!! Sarah, Erik, and Emery

02/01/2007

Just a little news today. First, I got off the computer last night and went back downstairs to Emery's room and low-and-behold the percutaneous line was out! He hated it. He turned purple (like he always does when he is mad) and eventually fell asleep so hard he let the vent do all of the work for him, or 'riding the vent' as the nurses like to say. The poor guy had nothing left in him between that and the eye exam. He also got his first Synagis shot last night in the thigh, which is a vaccination against RSV. The nurse waited to do it after we were gone. He hated that. He turned purple. Emery had some 'excitement' this morning. He started dropping his sats and requiring 100% oxygen, do the nurse had his daily chest x-ray done early and his chest, as always, was hazy but slightly worse. They had to go back up on his power to get his PCO2 down to an acceptable level for him. He was doing a little better later in the day. Darn lungs. I asked the nurse to have the doctor call me so I would know what the plan was for Mr. Emmers, and then something exciting happened. Dr. A called. I felt a sense of calmness over that. I've been waiting for him to come back, not because I didn't like the other doctor, but because he always makes a point to talk to Erik and I himself and explains exactly what his plan is for Emery, and crap.. this is his plan. He wants Emery off the vent in 2 weeks! I do not see it happening. I don't even dare to hope, but if ever there was a time to pray for little man's lungs it's now!! I realized today that Emery has been virtually unscathed in the sense of NICU stays. He's had the obvious PDA and the apneas and bradycardias, but it's mostly been his lungs that have been the problem. Dr. A said they've seen lungs like Emery's before. He feels he can manage them. Let's hope!! He said that opening his lungs have never been a problem, it's keeping them open and free of fluid. Let's start hoping :) That's all for today. Emery's on diuretics because of the fluid, and he's up to 20 mL every 3 hours.

02/03/2007

Well, just a bit of a set back. Emery has been acting a bit strange in his pulse ox all week, since Sunday to be exact. He's been what the nurses call labile, up and down on the monitor. Erik and I came here Wednesday night and his nurse Hope said he'd been desatting for no reason, not like he does when he's mad or with a wet diaper or wants to be moved, so she wanted a CBC drawn on him. It came back negative so they pulled his percutaneous line and his IV and we all celebrated. Unfortunately, all week he's been getting cranky and irritable and requiring quite a bit of oxygen, sometimes 100%, at night and just not feeling well. He's been inconsolable, which isn't like Emery. Usually if you put him on his belly or wrap him up tight he is content, but not for the last few nights. Anyway, I called this morning just to see how his night was and he poor guy needed 100% oxygen all night and it turns out he has pneumonia. They had to go back up on his mean airway pressure and his power on the vent and his IV is back in and he had to have another dose of surfactant this morning. All in all, they feel he's a little sick and not a lot sick, like the pneumonia could be a lot worse. He got a new endotracheal tube yesterday, and they thought that would help with his breathing, which it did at first but eventually it became obvious it was pneumonia. The good news is the doctors do feel it's treatable. He's being covered on a wide range of antiobiotics and his blood gases look good day (PCO2 of 50% and one of 46% yesterday) but his lungs are just hazy. So, if any of you are wondering where this leads, it means that weaning Emery from the vent is put back a bit. That's still the plan, and Dr. A still plans on that for the next two weeks, and he plans on passing on the information to the next doctor, but that means that he won't be put on a conventional vent on Sunday and that Erik and I are delayed once again in holding him. Emery will be 7 weeks old Monday. This morning when I called they actually went and got the overnight doctor to talk to me so I knew something was wrong right away. This is one of the setbacks that they talk about in the NICU. He certainly could be much worse. Dr. A said he's got some nasty bacteria, stuff like gram-positive cocci and gram-negative rods and that it will take a few days before he really starts feeling better. Sometimes I think of Emery as the little baby that could even though he wasn't quite supposed to yet. We love you all! I'll keep you updated on little love... Sarah, Erik, and Emery

02/03/2007

Well, things have changed just a little bit. They had to go back up on Emery's MAP and pressure again, and his chest x-ray has only showed slight improvement since the dose of surfactant. His blood gases are good, within normal range for him, and his O2 requirements are around 50%, which is a little better. I'm hoping the antiobiotics do the trick. The thing is, Emery isn't acting sick really. He's 'eating' like a pro! They got him on his tummy today and he slept soundly and peacefully, only desatting a little bit. I guess I'm just worried. I asked the doctor today if his lungs would improve or if they were just plain giving out on him. He's hoping Emery will get better. I asked about weaning him from the vent, and he said that in order to even consider getting Emery on the conventional ventilator and then to CPAP, Emery would have to be sitting at a MAP of 13 (it is currently at 18) and he's never ever made it there. The truth is, Emery has shown no improvement lung wise. If anything, his lungs are worse. It's a good day in the NICU for the other babies, though, and as great as it is and I rejoice with the other parents, I'm horridly jealous. The baby who had the PDA ligated the same day Emery was supposed to have his done has now moved up to bay 2. The baby across the hall who has been there as long as Emery and was on the ventilator the whole time was put on CPAP today. We've watched all of the babies come and go. Today I watched a baby being extubated and is doing fine. Our Emery just doesn't make progress, though. Someone told Erik the other day that he wasn't surprised that God gave us a child that would need a miracle. I feel obligated to tell you all something good, something hopeful because I want Emery to make it and I want everyone to rejoice. Unfortunately, though, this is one of those 'unforeseen' complications that arose and now it's a waiting game. Sometimes I get angry that no one seems to care as much as I do. Also, I want to explain that when Erik and I have 'bad days' it means that it's not your run-of-the-mill fender-bender, bounced a check, lost your purse, chipped a tooth bad days. When we have bad days we wonder whether or not our baby will live and we have to wait to see if he improves. Then, we have to wonder if they are going to call us and ask us to drop everything because they will switch the vent so we can hold him before he goes. That's a bad day for us. I guess mostly I just don't want to have to explain to people, if the worst happens, why the worst happened. Emery is one of the sicker preemies. I'm not trying to be grandiose. I've read that some people actually try to compare their babies and make their baby out to be the worst. I'd give just about anything to be the one giving another family a look of pity and rejoicing that my baby was doing well. This is the reality. Emery might not make it. I mean, that's a risk for all of the babies here. I think in some way people should understand that, and yet I find myself writing it solely so I don't have to do any explaining later if he doesn't, if that makes any sense. I just don't want to have to explain one hundred times over... why. I've been playing the what-if game today, too. Like, what if he had been in there just one more week. He looks really good today, healthy and robust. He weighs 3 pounds 5 ounces, and it's pretty close to a true weight. If the pneumonia turns around, the next step will be a burst of steroids to help Emery turn the corner a bit and perhaps try to push him to the conventional ventilator. They won't do the steroids while he's on antiobiotics, and I think he's on a 10-day course of antiobiotics so it will be a bit. Now we just wait to see if the next few days bring improvement or if his vent requirements continue to go up. I will post more tomorrow when we see him. Love to all, Sarah, Erik and Emery

02/04/2007

Hi everyone. Thank you so much for the words of encouragement and hope. I'm back up here today, and Emery hasn't quite turned the corner but he isn't getting any worse. The doctors have switched his antiobiotic coverage just a little to make sure that all of his germs are good and covered. His urine output has slowed down again, and of course it always worries me that the PDA is open again, but I'm not the doctor and I imagine they will manage to catch the PDA if it is open. I do worry about that because it means that Emery would have to be taken off of feeds, have the perc line put back in, and go back on the dopamine and hydrocortisone until the weekend when a surgeon could get here to repair it. And of course he'd have to be treated with Indocin again, which means it could possibly damage his kidneys. Plus, I don't know if a doctor will touch him because of his lungs. This is all pure speculation on my part. He actually seems to be doing okay. I do call a lot. It actually frustrates Erik. He says he can't stand to see me worry, and I think 'how can you not.' I guess nothing can be done, but I feel like if I worry then I won't be caught by surprise when the crap hits the fan, and now I'm starting to feel ashamed, like maybe I think about Emery too much. Who knows? I'm sitting upstairs in the family lounge and I can see downstairs to the park for the children's hospital. The children's hospital here is part of the Children's Miracle Network, and they do amazing stuff for kids here as you can obviously see with Emery. I realized as I looked outside with the ground covered in snow and the swingsets frozen that I will see this place in the summer and there will be kids outside shooting hoops with IVs, and then it hit me that the sun will come up again. So, as far as he is concerned there is very little to report. He's sick, a little irritable, but he's definitely not getting any worse. He's hanging in there. He's requiring more support on the ventilator and he had another blood transfusion today. He looks robust and healthy. I'll have to get some new pictures and post them. Happy superbowl! Love Sarah, Erik and Emery

02/05/2007

Hello again. I'm up here with Emery today because he's a little sick. Thus far, his cultures haven't grown an organism that can be identified. His CRP has yet to trend down, but the docs feel he's doing okay. In fact, the plan is to still get him off this vent and to CPAP here shortly. I don't understand how or if it is even possible, but basically as long as Emery has an ET tube or an IV or line of any sort he is at greater risk for infection. Yesterday we were told that there was a bug that had run around here in the NICU that resulted in some fatalities that wasn't sensitive to the antibiotics that they usually treat with so they switched his antiobitic coverage just to be on the safe side. They did have to go up on his MAP last night but they went down on his pressure, and his chest x-ray did look better today, not great but better than what it did. He still has a lot of junk coming out of his lungs. I came up today because I just wanted to make sure he was turning he corner. If I could figure out some way to rig up my work computer here I'd just work here in the room. They don't seem very partial to that, though. I think here shortly the only remaining baby that has been here for the same time as Emery will be moving over to bay 2. I actually felt happy for her. We knew we were going to be here a long time. The doctor came and talked to us yesterday about babies like Emery. He said that when he was working in Texas and he and his wife were just starting to have kids they would never have allowed the doctors to save a 28-weeker because the outcome was so bad. Now, the outcomes for 24 and 25-weekers are great. Survival rates are in upwards of 85%, and when they do lose babies it is usually early, so that's good news for Emery. He's 7 weeks old today. He did say that when they lose them later it is usually to infection, and obviously Emery has had two. Now I understand why it bothers them so much when the kids get infections. I think they get attached to the babies up here, but probably not the parents so much. I told the doctor I had some quesions today and he said "I'm not suprised." I can't help it. This is not the optimal way in which to have a child. I'm worried. I imagine Emery will be one that everyone will cheer when he goes home since he'll be here 4 to 5 months. Emery has been on antiobiotics for 25 days of his 49 days of life, and he will be on these for another 7 or 8 days. I have no idea why a sterile environment like a hospital has so many germs, I mean besides the obvious that all of the sick people are here. Well, now that I feel a little relieved I'm really tired. We have some new pics of Emmers coming soon :) Love, Sarah, Erik and Emery

02/06/2007

Just a quick update. I just got off the phone with the nurse to see what changes were made today. I was planning on going there tonight but obviously the weather decided to not let me. Emery's CRP has come down so it looks like his infection is on the downward trend. The nurse said he has been having a great day, hardly any desaturations. He is on much higher settings than usual for him but he's been awake and aware and comfortable all day. They upped his feeds to 26 mL every 3 hours with 30 k/cal milk fortifier and proteins added. He needs all of the help he can get. The steroids were started today (dexamethasone) and the hope is to convert him to a conventional ventilator this week which means........... Erik and I should get to hold him this week.. provided the loopy weather lets us up there. After the conventional ventilator the next step will be CPAP. Lord, please help us on this one. Also, I've been reading the Sears' Premature Baby Book. I think some of the information is outdated because the book only gives Emery a 25% chance of survival as opposed to the hospital treating him which gives him an 88% chance of survival, but I read how to parent a preemie at home and the "Welcome to Holland" poem couldn't be more accurate. Preemies aren't supposed to be allowed to 'cry it out.' They don't have the oxygen reserve. They will still turn purple like they do in the NICU. It also talks about 'baby-wearing,' which is wearing your baby in a sling around you for at least 4 hours a day. I'm not adverse to that. He and I have some lost time to make up for. I need jeans with bigger pockets to fit the O2 tank in. Anyway, that's a long long way away, and I'm hoping that the pneumonia didn't cause too much damage, that he will be able to breathe, and that he come home some day!! I'll hopefully know more tomorrow :) Love Sarah, Erik and Emery

02/07/2007

Well, I'm up here again. Emery woke up when I came in and was wide awake and just hanging out so I read him 'Good Night Moon' and sang to him for a bit. He looks so healthy and vigorous it's deceiving. Without the tubes and lines you'd never know he was a sick baby. I think by midnight the steroids will be on for 48 hours. No dramatic improvement, just a tiny bit on the vent settings. The pneumonia seems to be clearing up though. His oxygen requirements seem to run about 45% to 55%, which is usual for him. His map is 18 (down from 19) and his Hz is up to 10 (which his nurse said is actually down for him). I don't know what it means, but he's only had 2 desats since I've been here and they didn't last long. Erik didn't get to come up tonight. He has pink eye. He was so bummed about it. He had looked forward to it all day. We went to the doctor and they gave him drops and antiobiotics. This whole situation is actually really getting very hard. It seems like everything is going wrong. The back door is falling off to the house, there is something wrong with the electrical wiring in the kitchen, the house is a mess, the dog chews on herself all day, and Erik is covered in a rash and has pink eye. He is hopping mad right now. He needs a new IV. Well, nothing new. I got to lift him tonight for his weight check and Mandi took a picture of us... soon to be posted! xxoo Sarah, Erik and Emery

02/08/2007

Well, we went from hopeless to a little hopeful. First off, Emery's bacteria was identified and it wasn't the nasty enterobacter so he is off of broad-spectrum antiobiotics and on antiobiotics that the organism is sensitive to. As far as the steroids are concerned, Erik called and talked to Dr. A today. I really wish he could just stay there and take care of him the whole time but that's not going to happen. Basically, Dr. A explained to Erik that when he started the steroid treatment he had a goal in mind and they may make it or they may not, but it's not the end of the world if they don't make it. He started Emery on a very low dose of steroids and they did not see dramatic results with Emery like they do in lots of babies, but there was some improvement. Basically Emery's doing a little more work on breathing than he usually does and his blood gases are hanging in there. But, since there was no dramatic improvement in him the steroids were upped a little bit. Dr. Accaregui wants the ET tube out and the IVs out because babies are so susceptible to infection and Emery's had two in his short 7 weeks of life. The good news is he has never been so sick that he's scared anyone, but sick is sick and it's not good for little babies. He likes to call Emery 'robust,' and he is weighing in around 3 pounds 6 ounces. He's not even 2 months old and he's nearly tripled his birth weight. I think his weight gain will slow down a bit though now that he's on steroids. Oh, and the poor kid gets 'roid rage.' He's had to be sedated several times with Ativan and morphine and I really don't care. I don't want him in pain in the least. His little heels are covered in cuts from daily blood gases. I swear, if I ever get that kid home I will cover those feet with kisses every day. As far as Emery being on the oscillator, the doc said that in the realm best-to-worst with 1 being the best and 10 being the worst as far as vent settings and support, Emery's sitting at about a 2. His lungs are very stiff and they get fluid in them now because of the BPD but all-in-all Emery is holding is own. The hope is to get Emery to a conventional ventilator and then to CPAP. Apparently this can be a very slow process, but where Erik and I were feeling hopeless this morning we now feel better. Of course we are angry and frustrated on many occasions and just so tired. We want our baby home and we didn't want the birth of our first child to be like this. We play head games about how God could fix this and isn't, and of course I like to blame myself because my body couldn't hold him in there any longer, and Erik wants to blame himself but no one is to blame. The hardest thing is that preemies often do pretty well and we've got one that isn't doing 'well.' The truth is, Emery should be doing a little better than what he is. I had severe preeclampsia and that often helps develop babies lungs earlier and Emery's are obviously a 'bit' behind to say the least. He should have walked out of my womb smoking cigarettes. Though it was great seeing him last night while he was aware and looking around and I was touching his funny fuzzy hair, I noticed that the baby across the hall is gone having moved up to bay 2. She was our last remaining long-timer with us. It's crazy, I know, but after she moved up I felt all alone even though all of the beds are full. No more familiar faces strolling along in the NICU except of course the nurses and docs. On the up side, Emery had a double-dose of happy time yesterday because Hope was his nurse during the day and Mandi was his nurse at night. I imagine all of the nurses up there will take care of him more than once. Emery is stable, the infection is getting better, and he's still cute as a button and alive. I'll post more as I know what the weekend entails. Love to all! Sarah, Erik and Emery

02/10/2007

Well, there's a treat for Emery fans out there later. Erik will be doing an update. For now, I just had a talk with Dr. A about Emmers and I'll fill everyone in. First, there is a good thing about Emery. He is growing very well, better than they expected as a matter of fact. Emery is a 26-weeker with IUGR. He said any time a baby is growth resricted it causes far more problems, which is probably why his lungs are as bad as they are, but it also causes a lack of brain development, etc. He said across the country 100% of babies go home less than their gestational age weight, yet at the University of Iowa about 55% or more go home at an appropriate corrected gestational age weight. Good old Emery is right on target. I have never been so proud to have a weight problem in my entire life. For those of you naysayers out there who thought me being overweight caused the preeclampsia... well, that darn Oreo and Dorito gene is saving little Em-butt's life!! Um, anyway, the doc said that if he had a choice between good lung function or good growth, he'd choose growth because that means better for Emery in the long run as far as development. I had never even considered that he would have developmental disabilities. I still can't wrap my brain around the fact that he might survive. He said the steroids didn't cause dramatic improvement like they have seen in the past but they did help, and unless there is dramatic improvement they will just discontinue them. They also have the option of using them in the future. He did say that two babies they have had like Emery this past year with dense lungs are now home on oxygen and growing and doing well. Emery is not breaking any records for best or worst baby. Again, Emery's survived the hard part in that he's been here a while, made it through the critical 48 hours of life, but now it is keeping him free from infection, which is hard obviously. He's had two already. I guess we just have to take this day-by-day. I'm glad no one told me the first 24 to 48 hours were critical. They wouldn't let me see him for those first 24 hours for fear of me having a stroke or going into seizures and death. I remember that night after he was born. I realized that I kind of wanted to hang out down here and see what this place had to offer. I'd really never been confronted with my own mortality before, I mean to honestly consider it anyway. I'm only 35. So, mostly the only chance Emery had for survival was outside. The doc did say that it is hard to wean from the oscillator but there are other things they can do. They can move to a jet ventilator and wean from that and the fact is, they have to let Emery grow and build new lung tissue. Most 26 weekers are about out the door by their due date and Emery is no where near that. The poor kid didn't stand a chance. He's now getting blood gases every 6 hours. I have to leave the room when he does. Basically we're just lucky Emery is alive. He's beaten almost all of the odds. Oh, and in case you are wondering, Emery now weighs 3 pounds 9 ounces......... it's time to call Richard Simmons. love you all! Sarah, Erik and Emery

02/10/2007

I must confess I am alittle nervous to even write upon this most watched web page. right now sarah and i are in emerys room just watching him sleep. it has been awhile since we have heard an alarm or anything scary, but that is good. sarah just looked at his new x-ray and his lungs are far from perfect they do look better. there was a first today, i got to change his diaper while he was lying on his stomach. talk about difficult. by the was i will be offering an advanced fathering class when all of this is through. i do want everyone to know that this whole thing isnt always doom and gloom for us. take last night for instance. if you have seen the pictures of the boy you will notice the piece of tape over his upper lip. well, my thought is what a perfect place for a temporary mustach. while i was drawing it he kept moving which only made me laugh harder. its kind of like taggin the guy who fell asleep first. it was cool and we had laughs. God help the boy. on a more serious note i dont have all the medical mumbo but i do know i got to put my hand underneath his head for a while. it was as close as i have gotten to hold him. it was the coolest thing. right now his o2 is at 35% and he is doin fine. a miracle. i just got done reading some of the messages for the first time and it is humbling. i never realized God could bring so many people to our side to support us. at times we are angry with it all. then there are time we are scared of it all. we dont understand any of it. we get very frustrated when God doesnt give us exactly what we want. we want our boy perfect and healthy and home with us. we dont want to hurt over this any more. recently i read the crucifixion and ressurection story. i bet Jesus didnt want to hurt any more either, but i ask myself why He allowed it. love is the only thing that would motivate anyone to such a thing. and after, He was resurected to eternal glory. so when i think i cant take any more all i can do is ask God if it be His will to take this cup from me till then im not giving up on Him or anything else He put in my life. i still thank Him for my lovely wife. Istill thank Him every day for my beautiful son. till its done i will still pray Thy will be done not mine. A perfect Father gives perfect gifts so in a sense my life is perfect right now. thank you all for allowing me to express my heart.

02/10/2007

I just wanted to say one more thing, thank you all who have offered to come fix the wiring, the back door, and clean the house lol! You are all such a blessing and too funny :)

02/11/2008

Well, today is a huge HUGE day in the life of Emery Tillberg. I'm sure most of you read about the update yesterday about what I had talked about with Dr. A, who I am sad to say will be leaving in February 14 and will not be back until June. He did say he would come in and check on Emery now and again. I know doctors and nurses get attached to patients, but I never thought we'd get attached to a doctor. Anway, after talking with him yesterday I simply resigned to the fact that Emery was going to be on this vent for long, long time. I read in a March of Dimes post about boy who had spent 104 days on the vent, and today is actually day 55 of the NICU, so I figured another 50 days and if he wasn't off then I'd start to worry. I guess part of why I was worried was that he's been on the oscillator, and if for some reason Emery had to have long-term ventilation and a tracheostomy in order to get him home, it was never going to happen with an oscillator. Well, today Erik and I walked in and, the first thing I always do is look at the monitor to see how his sats have been for the past few hours and I ran into Erik because he stopped to look at the room name. He was convinced that the baby in the bed wasn't ours. When I walked in, I walked back out as well to get the nurse. You see, Emery's on the conventional vent, a Servo-I, now, which means if he remains stable and doesn't have a massive steroid rebound, Erik and I will be holding him as early as Tuesday. He is no longer clamped to the bed. This vent is actually teaching him how to breathe on his own. Dr. A decided it was time to challenge Emery. The nurses were all laughing and excited for us today and we don't know what to think. We also learned the true miracle of Emery today. Dr. A said that had Emery been born at another institution, even another level III NICU, he probably wouldn't have made it. We are so very lucky he has a chance to live. The survival rate here is very high compared to the national average. Go Hawks! (hee hee hee) Anyway, Erik had talked about some laughs in the NICU. Let me just tell you about some of our escapades. We have nick-named most of the doctors around here. Erik likes to call my OB/GYN Dr. Viper because he sort of looks like Viper from Top Gun (Tom Skerritt), so any time something breaks or goes wrong, he says "call Dr. Viper. He'll figure it out.) He did save both of our lives. He also likes to call one of the fellows from here in the NICU Dr. Smart Butt because she had the audacity to tell him about how to handle breast milk. Erik has become an authority on breast milk. When I was being loaded with magnesium (gasoline for the veins) he kept hooking me up to the pump and milking me like a cow. I couldn't even talk I was on so many drugs but I got milked and he traveled back and forth to the NICU with my milk, so now he's an expert. This week a new doctor will be coming on to take Dr. A's place.

02/13/2007

Well, for those of you following who live here in the QC, obviously Erik and I won't be holding our son tonight. I'm starting to think there is some invisible force that does not want us to hold him. Anyway, weather is not permitting. Obviously if there were an emergency of some sort we would go come hell or high water, but Emery is stable. I talked to the nurse today and they had actually written on the chart that mom and dad would be up today to hold baby, and they did want us to come but no one wants us to risk it. The IDOT travel website is not recommending travel period. In fact, tow trucks are prohibited on the highways right now, so no holding love bug tonight. We will go tomorrow, though, and it seems appropriate to hold my little love on Valentine's Day. He's still tolerating the vent but they did have to go up on his settings a bit. Not much. He's getting 35 breaths a minute now to lower his CO2 and the highest he's been going is 45% oxygen, which is pretty good for him. His CO2 is always lousy but I think that's to be expected from the BPD. They went up on his feedings to 28 mL every 3 hours and he weighs.. get this, 3 pounds 11.5 ounces!! I imagine within the week he will weigh 4 pounds. He will be 2 months old on Sunday and that's about the time he should hit the 4-pound mark, if not just a little later. The doctors didn't seem overly concerned about his CO2 and were not planning on a vent change as of yet. In fact, they are only getting blood gases once a day again and once-a-day chest x-rays, too. He seems to be comfortable, he's eating digesting well, and the nurse said he has beautiful skin and looks like a healthy baby. He was a little irritable periodically and the nurse tried to actually sit him up on a boppy pillow for a bit to try and change positions for him. He tolerated it only for a short time. So, it's sort of funny and sort of sad but I like to follow other preemie stories on line and try to see how Emery stacks up comparitively, and I never really have written about what Emery's really like because I didn't want anyone to freak out or think "Thank God my baby is not like that!" I just have this strange desire for Emery to compare well to other babies. I don't know why. I have been told since day one never to compare Emery to any other baby, and he isn't breaking records for best or worst baby. He's on the worse side of lung function but on the better side of growth. He's more labile but hasn't required much ventilator support. So here's the deal. This is mostly for the nurses out there and for the other moms of preemies. Emery has had 16 doses of surfactant thus far, with the most recent one being for the pneumonia. As of all of my net surfing I have yet to find a baby requiring that much surfactant. His settings on the SensorMedics were usually a MAP of 16/17 with a power of 2.5 to 3 and a Hz of 10. His vent settings now on the Servo-I are 35 breaths a minute with a PEEP of 8. His CO2 runs, on an average, 65%. When it climbs over 70% they make changes. His range is 50% to 70%. So for the nurses and preemie moms, you can appreciate that Emery's lungs are just plain bad but only two nurses up there seem to think that Emery has no hope. Everyone just plugs along and treats him. One nurse said the other day that she'd seen chest x-rays 'as bad and better' but 'not worse.' One nurse came in to tell me how she worked on the BPD unit back in the 1990s and the kids stayed there until their third birthday. I told her Emery had BPD, and she 'Oh, yeah, but not like these kids. I doubt he'll go home with a trache at 3 years old.' I think where Emery is at now, his lungs won't really 'open up.' Now it's just time and patience to grow new tissue and hope he doesn't get any kind of fatal infection. There. I feel like I got some nasty confession out. I don't know why I was tyring to hide it. Anyway, if they have to move Emery to a jet, we can still hold him!

02/15/2007

I give up. I've tried to upload pictures for hours now and it's not working. I'll have to figure something out over the weekend. Pictures, you ask? Well, yes we have pictures because, after 58 days, Erik and I were finally able to hold our son! It was a great Valentine's Day. Plus, the cleaning fairies came to our last night. It was wierd. We walked in and noticed that Chloe had shredded something all over the living room floor, per her usual, when we realized it was a box of chocolate. So, cleaning fairies, I'm sorry but Chloe ate the chocolate... and she doesn't seem to be suffering any ill effects. Thank you very much whoever cleaned the house. Erik and I have some sneaking suspicions of who did it. I mean, the house is cleaner than we have ever cleaned it. Seriously, somebody scrubbed the top of the fridge. Who does that? Thank you sincerely from the bottom of our hearts. It was icing on the cake for a great Valentine's Day. Now, to Emmers. Talked with Dr. A last night and he said that it was time to challenge Emery and not pay very close attention to his blood gases, that his oxygen requirements and chest x-rays will let them know what he needs. Good ole Emery. His chest x-ray is getting worse and his O2 requirements are going up. I'm afraid he's getting pneumonia again. I've been bugging the nurses. Last night after we held him when he was put back into the bed he threw up a little. The poor kid has never moved a day in his life and spent 6 weeks clamped to a bed so the movement in and out of the warmer bed would make anyone sick. Anyway, I was afraid he aspirated on it, but Erik and I are both off tomorrow and will be there early in the morning and hopefully catch rounds with Dr. D and see what he has to say. I just wish there was one day, just one day, it seems so little to ask, where I would call and they would say "Emery is so great! His chest x-ray looks good or his CO2 is down" or something.. anything. I almost wish they would lie to me on occasion. I called up today after rounds and the nurse said "we've got great news! We all rallied and managed to Emery out of the study so he's off the oximeter." I don't know why that's great news. I mean, it's good for the nurses because Erik and I had him in a research study and the nurses really hated the pulse oximeter so now they can use what they are used to, but I think the nurses don't understand what's good news to us lol! Anyway, after talking to Dr. A I thought the plan was to challenge Emery off the vent. He said they weren't going to pay close attention to the blood gases because Emery was compensating for the higher CO2, but instead they doctor today went back up to twice-a-day blood gases and no vent changes and Emery's O2 needs have gone up so maybe he knew something the rest of us didn't. When Emery was first born, his first doctor (for whom I will be forever grateful) told us that for the next few months we should expect a prolonged ventilator course, an infection and pneumonia. Expect a lot of setbacks, she said... and well, everything she told us happened and I wasn't surprised for any of it but now we are in unchartered territory. I think we should still get to hold him tomorrow unless he gets sick again overnight, which I fully expect. It's always at night, and it's always on a weekend. I promise pictures will be up soon! Love, Sarah, Erik and Emery

02/16/2007

Well we are back from our day with Emery. He's developed a new thing that is odd for him, which is spitting up. He never really had a problem with it before and now he's done it about 4 times this week, three in a row from just last night. His belly is soft and he doesn't seem to be in pain, and he is still digesting well and has good bowel sounds but of course it freaks me out. I think the worst, like "Oh great. It's probably NEC," but they're just monitoring him. At his last feeding he had no residual and hasn't thrown up at all, and they think that it might be because they have started potassium chloride now since he is on diuretics. Who knows? I held him again today for about 10 minutes and he urped a bit so they had to put him back in bed. We also found out from the doc today that the only thing we can do now is wait for new lung tissue to grow for Emery. He also might need to move to a jet ventilator. They had to go up on his PEEP a bit today but the good news his blood gases came back down in range for him and O2 requirements came back down to 45%. We had a good day with him. He had his eyes open several times and he's so aware. He's got a funny new thing, it's like he tries to focus and his eyes cross. We found out on Wednesday that he had stage 1 ROP (retinopathy of prematurity), which is a disease that develops in premature infant's eyes from the prolonged use of oxygen. Something about irregular blood vessels building up in the backs of their eyes. It can lead to blindness if not treated, but Emery has the smallest stage of it and it can resolve on its own. If not, they can do laser surgery. So we haven't made it out of the NICU unscathed. I feel like we haven't even gotten to the darkest part of this journey yet. There is no light at the end of the tunnel right now, it's odd sometimes not knowing what the outcome will be. It's a great lesson in life really. One thing I do know is that he is in very capable hands at the U of I. They are diligent with him, with all the babies. It's funny actually. The nurses who take care of him during the day chase the docs down and ask questions and the nurses at night pester the docs on at night about him. We just have to give it up to God but it is soooooooooo hard. I want him to be okay and home. Holding him was great and also weird. I mean, he's my kid but it takes two people to set him and adjust him in my arms, to make sure that his feeding tube is capped and his vent tubes are hooked to my shirt, to make sure he is warm and my arm is propped right and to make sure he doesn't aspirate or desaturate. Most moms just pick up their babies whenever they want. Wierd. Anyway, that's all I've got for today. Mandi is taking care of him tonight and she had a talk with him and they decided together that he was going to have a nice quiet night. Don't forget trivia night tomorrow night :) Actually, Erik and I are counting that as a night out. We miss the kids. Oh, and Erik and I made a CD for Emery today. The music therapist left us the CD recorder and some books, and yes.. Erik sang Grateful Dead songs to Emery. XXOO Sarah, Erik and Emery

02/18/2007

First of all, I want to thank everyone for trivia nite! It was a great time. Erik and I actually had a chance to have a night out and have some laughs. It was a welcome relief. Thank you everyone. Someone mentioned that Erik might have certain dietary restrictions. I can emphatically say that he does not. Trust me... Erik eats what he wants. His medications are working well. Throughout all of this we haven't really payed attention to what might cause a flare-up, but as far as I know he hasn't had any and the week I was in the hospital he lived on coffee, Diet Mountain Dew, and shared my hospital food. Now the mediocre news about Emery. I guess Dr. D is a little different than Dr. A in that Emery will not be challenged off the vent. In fact, he said Emery could spend months on the vent, and only months AFTER his due date will they talk about a tracheostomy and long-term ventilation. He said Emery can't survive off the vent and Emery will dictate his care... so, no challenging Emery off the vent. An extra chest x-ray was ordered today as well because Dr. D thought there was a small chance Emery had a pneumothorax (collection of air or gas in the space surrounding the lungs). The radiologist read it and said 'no way, there's not one there,' but Dr. D said he is a worry wart and wanted to make sure. Hey, if he's a worry wart I'm okay with it. He seems like he genuinely cares about the babies. Erik and I got here at about 5 o'clock and he was hanging around talking to some parents who just had a baby admitted, he came by to talk to us about the second chest x-ray, and then he basically walked around and looked in on all of the babies as he was just willing them to get better and grow. Emery went 24 hours without throwing up, and then I asked the nurse if he had thrown up today and then he threw up. They don't think it's NEC. He's pooping great and has a soft tummy. He's just retaining some food and throwing up a bit, and to Erik and me it looks like he's gagging on his ET tube. Nothing can be done about that, either. Steroids will be started on February 20 again to try to help Emery's lung function and we'll see what goes from there. He's sitting high today at 55% to 60% oxygen. His chest x-ray looked better so they went down a bit on his pressure support but his O2 requirements went up a bit. That's all for Emmers. So, again thank you all for a great night. It was wonderful to see everyone and humbling to realize we have that much support. We truly do appreciate all you do. God bless! Sarah, Erik and Emery

02/20/2007

Well, Emery is having a great day! They started steroids again yesterday (a day early) because his lungs were getting really hazy and they felt it was the steroid rebound. On Sunday he was sitting at 65% to 70% oxygen and sometimes barely saturating over 85%, his CO2 was over 80, he was at 35 breaths per minute with a tidal volume of 17 and a PEEP of 10. I don't know what any of that means other than it was worse than when he first got on the conventional vent after the first round of steroids. So, now after nearly 36 hours of steroids he's at 35% oxygen, his CO2 is 52, his tidal volume is 16, his PEEP is 9 and he's at 25 breaths per minute. I don't know what that means other than he's way better off than he was before. He was saturating anywhere from 90% to 95% while I was there and only desatted once, and that was when they took him out to let me hold him. He hated it! He's on the roids so he gets roid rage and the nurse woke him up out of a sleep to let me hold him and he started to cry and get angry beyond all get out, dropped his heart rate to about 66 and desatted to 78 (which really isn't that low for him.. I've seen him in the 30s before), so they put him back in and he's much better. He might just not like to be held and whatever makes him happy is okay with me right now. Anything to keep him breathing and growing. The poor kid. He's on steroids and his weight gain slows down while he's on them and I have yet to figure out how to get a baby bowflex in there so he can pump up for a bit. He's also frequently given Ativan to calm down, and I have yet to find the local chapter of NNA (neonatal narcotics anonymous). They're pumping him full of enough drugs to get him kicked out of major league baseball, which means of course that he will fit into MLB just fine. As far as the steroids, the hope is that each time he rebounds he's a little better off than when he started, like two steps forward, one step back with the steroids. Slow, slow progress. We're on day 64 of the NICU. Oh, and by the way, Emery weighs 4 pounds!! (4 pounds 1 ounce to be exact!) Erik and I will be out of town for a few days so I'll be shy on the updates (for those of you who are addicted to the website, I recommend re-reading all of the old entries until now to get you through lol!) Keep all of us in your prayers and pray that Emery doesn't get sick! Love, Sarah, Erik and Emery

02/22/2007

HAVE BREAST PUMP: Will travel.

So, I have driven 13 hours in 24 hours and have found that I can pump and drive. It has a car charger and I pulled over, hooked up in my hands-free pumping bra and went on my way. Just thought you would like to know that. Well, check this out. As Erik and I were out of town I had some family go up and visit Emery while we were gone. My sister was there yesterday and said that nothing had changed from what I had posted, and then the nurse today told me he was at 35% to 40% oxygen. I got a little depressed thinking that he was rebounding already while being on the steroids, so you can imagine my surprise when I called back after rounds and asked what changes had been made and the nurse said, "nothing other than going down to 10 breaths a minute." Okay, get this, my baby, YES MY BABY is at 30% to 35% oxygen requirement with 10 breaths per minute and a pressure support of 6 with good blood gases. The next step from here would be, well, extubation and CPAP. It won't happen yet, though, as his round of steroids is done and he will need to rebound and go the 10 days without a steroid burst, but this is so wonderful. When he started on this vent he wasn't anywhere near what he's at now so he's making improvement! He still weighs just over 4 lbs (no surprise, the roids inhibit growth a little), and he's pooping and peeing like a champ, taking 30 mL (1 full ounce) every 3 hours with no residuals and he has 30 k/cal human milk fortifier added to it. (It's just some protein and vitamins to help preemies grow.) I know there will be some bad days to come, but for now Emery is rockin'! Thanks Scooter and Kim. You guys rock! Love you all! Sarah, Erik and Emery

02/23/2007

I am so sorry, I never update while I'm working but this will just be considered my break and this news CANNOT be waited upon. THIS JUST IN: EMERY HAS BEEN EXTUBATED AND IS ON CPAP!!!!!!!! It's been 40 minutes. So anyway, it doesn't mean that he will stay on CPAP. They decided to give it a try. They'll get blood gases in a little bit and keep getting chest x-rays and checking his FIO2 requirements but he's sitting at 45% oxygen on the CPAP machine and sleeping peacefully with a pacifier in his mouth. I imagine that when Emery rebounds from the steroids he will have to go back on the vent but for now he is breathing on his own! Can any of you flipping believe it?!!!! I won't even be depressed if he goes back on the vent tonight. At least he's been doing it for a little bit!!!! Now, I have the flu and there's a danged ice storm coming so of course I can't go see him, but Tiffany has promised to try and get pictures without tubes in his mouth. Praise God!!!

02/23/2007

Well, he made it 5 hours. They reintubated him at 3 o'clock. I guess what happened was he had a temper tantrum and kept trying to tug at the tubes in his nose, he was uncomfortable and angry, and even with Ativan couldn't calm down and finally got pooped out and angry and they had to put him back on the vent. I'm not sure what the settings are. I did ask if he could cry and, yes, he can cry and make plenty of noise. He was raspy from being intubated for so long, but he was plenty crabby and let them know it! Gotta love my little crabby butt. Anyway, I was slightly disheartened that he had to be reintubated but not too much. Remember, this is a child that has very stiff lungs. The mere fact that he lasted as long as he did is definite improvement. His blood gases got pretty bad and they still aren't great but back in range for him. In an earlier post I said that I wished I could call and hear some great news and I realized this whole week has been that. In the last 3 weeks he's gone from the oscillator to the conventional vent to being extubated to CPAP and he's had great blood gases all week. The next round of steroids might actually get him off the vent for good. Right now, he's back on the vent and he's not riding it. He's still breathing, and the nurse said he pretty much used up all he had today being mad so he doesn't care what anyone does to him. He's just plain old tired. I still feel awful and will not be going to see him, and with the weather I will probably not be going to see him tomorrow either. Thank you everyone for all of the awesome comments today. They mean so much when I get them because I love hearing them and seeing how many people are rooting for him. Oh, and yes I've heard about the 21-weeker going home. She actually will have a shorter NICU stay than Emery. XXOO Sarah, Erik and sleeeeepy Emery

02/25/2007

Very little to report. I got up this morning and felt much better from my cold and figured, weather be danged.. I'm going to see my son. The roads were fine and I didn't stay long just in case. He, of course, looks beautiful as always. His vent settings are back up and his lungs are hazy again, as to be expected after the steroids. His blood gases got really lousy overnight so they changed his vent settings back to 35 breaths a minute with a PEEP of 9 and blah blah. I don't know the rest. He's doing a little better right now than he did coming off the first round of steroids and his blood gases looked good. They are drawing a CBC and CRP tonight to see if he has an infectious process going on. They don't think he does but they want to be sure. Today they decided to fluid-restrict Emery to try and get rid of some of the fluid in his lungs. The doctor said he wanted to make Emery a 'lean, mean breathing machine.' The next round of steroids will start Thursday. He did desat quite a bit while I was there today, but when I stood there and had my hands on his feet and head he wouldn't desat at all. In fact, if I could do that 24 hours a day he'd probably be fine. He likes to be touched but not held...well, at least he's going to have to used to being held. The doc said that when they extubated Emery on Friday he had a 50/50 chance of making it without being ventilated, and he was growing bacteria in his ET tube so it was kind of like killing two birds with one stone... give him a chance to breathe and then get him a new ET tube. I guess he actually pulled the CPAP tubes out once. The doc said that he did really well until the last half hour when he was just really struggling and so they reintubated. It's okay. I can be patient. Hope everyone survived the storm. I had flickering power and was blessedly lucky last night but heard some of you weren't. Talk to everyone soon! Love, Sarah, Erik and Emery

02/27/2007

No news to report really except that Emery now weighs 4 pounds 4 ounces, which means he was put on nearly 3 pounds on 10 weeks and that his Ursodiol has been discontinued. That was the medication that he needed to take because of his 'liver issues.' His bilirubin was a little high from being on NVN and now that seems to have resolved. Emery was 10 weeks old yesterday. He is on higher vent settings today, and higher than the settings when he came off the oscillator. It seems like he is actually worse from the steroid rebound than when he started. It worries me that he's getting worse, not better. Some days I think all will be okay and others I don't. It's day 71 in the NICU. For babies like Emery with chronic lung problems the average stay is 120 days. Emery is no where near leaving at 120 days. In fact, I'm finding it hard to believe he will ever come home. It's just hard some days. And no, no one needs to call me and see how I'm doing. It's just hard when I hear that he steps back and I'm so tired of seeing other babies leave while he just stays the same. I'm very grateful he's still here, though. At least while he is still here there is hope that he will come home to us some day. And, with this weather around here lately it makes me think that, in the midwest, you really can't appreciate the spring unless you suffered the winter. Finally, new pictures are up of my soon-to-be porker and the V-day present we got. (thank you very much SP!)

03/01/2007

A little info, albeit not much. Every doctor has a different opinion, a different idea.. and I think honestly that is why babies do so well at the U of I. First of all, I know so many of you have been praying for all of us and we are very grateful. I'd like to ask you to include the NICU staff in your prayers, not for Emery's sake but because, when you or I have a bad day it's something like chipping a nail, the car breaking down, maybe a coworker is an idiot, the boss is breathing down your neck, the spouse is chewing fingernails again.. whatever. Think about what a bad day in the NICU would entail... and then say a prayer for all of them. So, yesterday was Dr. D's last day but he came in and had a long talk with us. I was concerned that Emery's vent settings were higher, and he said not really because Emery's O2 requirements are actually less now and more stable than they were coming off the oscillator, and his blood gases are okay.. not great but in range. Remember, Dr. A said not to pay attention to blood gases, that his oxygen requirements would let us know what he needs, and then Dr. D went to twice-daily blood gases and didn't challenge him off the vent. My concern was if he was rebounding worse from the steroids was it beneficial to treat him with them since they do have the obvious side effects and risks. He said that Emery benefits great from the steroids and in his opinion there is no reason to do this next course that was due today because his O2 requirements are low and he's stable. But - a new doctor started today and that may all change. I called today after rounds and the nurse said she overheard them saying that his chest x-ray looked a little better, but I had to laugh at that. His chest x-ray always looks like crap. He has severe lung disese. We were told last night, though, that Emery will continue to grow new alveoli for years and will have a normal life, but he should be grounded if he ever smokes. Erik and I talked about this and we decided to tell Emery from a very young age that smoking would break his mother's heart and probably kill her. That way, Emery can resent me and fear Erik and we can establish a typical dysfunctional American family early on. Erik held him last night for about an hour and Emery really liked it and slept very well in Daddy's arms, only desatting when it was time to eat, of course! So, we're back to time and patience.. time and patience. Part of why this makes me nervous is because kids have a tendency to get sick in the NICU, but I think I'm starting to come to the realization that if God wants Emery to go, Emery's going to go and there is nothing anyone can do. Dr. D did tell us last night that Emery is not the sickets baby in the NICU, nor is he even close to the sickest baby they have ever seen. He said he's not even in the top 10, which is good. This is the U of I and the last thing you want to do is set a record for worst baby. I did say "well, he's had 16 doses of surfactant and no matter how hard I try to find another baby out there like him I can't," to which Dr. D replied, "well, he is in the top 10 at our facility for that." Phooey. Oh well. We knew Emery's lungs were crappy and he has "wimpy white boy syndrome." How the pale males ever came to running the planet is beyond me. He's of course still beautiful. I'm going to try and get pictures this weekend of him with his eyes open. He has such an aware look about him that it's funny. Oh, he had another eye exam yesterday. So far there is no progression of disease. He still has stage 1 ROP with no surgery planned at this time. Take care! Sarah, Erik and Emery

03/04/2007

Ahh, a weekend with little love. Sometimes, it's the best therapy around. My girlfriends from college came this weekend to meet Mr. Emery and it was great to have them here. That, too, was great therapy! So, the changing of the guard (doctor) came, and we met the new doc rounding for the next 2 weeks. So, Dr. G came to talk to us yesterday and meet us. His only goal for Emery is to let him grow. He said he is growing great, and babies born at Emery's gestational age simply need to grow new lung tissue. We knew that. The good news is, he felt that after looking at Emery's growth chart that here within the next 4 weeks they are going to try to get Emery off the vent. He now weighs 4 pounds 9-1/2 ounces. He's a monster. Yes, I did get pictures of a very aware Emery and I will try to get them up soon. Emery's vent settings have been slowly on the rise.. not much, but more so than what they were coming off the SensorMedics. When he came off of that vent Emery had a course of steroids that actually lasted 5-1/2 days as opposed to the 3-day burst, and his settings and oxygen requirements slowly came up. This last round of steroids actually got Emery extubated, and though his vent settings are up a little he seems relatively stable and leveled out on this vent. There still is little talk of giving Emery a tracheostomy with home ventilation, but the goal is to have him home 3 months post dates.. which means the goal is to have him home at the end of June or the beginning of July. That's the goal. Anything can happen. Someone said to me this morning that we can still pray for Emery to be a miracle, a witness to the power of God. Some days I hope for that and others I lower my standards to simply hoping he lives... Oh 'me' of little faith. Anyway, Daddy held him on Saturday and Emery very much enjoyed it. Mommy held Emery on Friday and he got mad as heck. I'm almost developing a complex. I might try to hold him today, but he's so calm and peaceful compared to the fussy little mess he was Friday and Saturday... though he apparently had a big poopie last night and it wore him out... as it would any one of us.. but he must have been working on it all day which is why he was fussy. He is stable and growing and beautiful. I love the uneventful days. Love, Sarah, Erik and Emery

03/08/2007

Boy, I've had four people mention that I haven't updated so I guess I'd better update. I didn't know anyone was still out there.. hint, hint. Leave me a note sometimes. It's therapy for me. Anyway, I haven't posted anything because Emery is flat-out boring. I said that to the nurse today, like why do I keep calling at rounds. Nothing is changing, which is good. Emery had happy Hope time yesterday, and she wanted to know if we were bathing him and if music therapy and physical therapy had been by to talk to us, to which we replied no. She wanted to know how holding was going, and we said only okay because we don't get to hold him that much. She felt we should be holding him every time we were there so he got used to it, so Mommy held Emery for over an hour last night and we sang to him and rocked him and he loved it! He snuggled right in. He also won't take the pacifier for anyone, but I can get him to do a 'nonnutritional suck' with it, which is way cool. He's ready to interact with people at 37 weeks' corrected gestational age, but he's uncomfortable with the tube in his mouth. He hates it. Hope put socks on his hands yesterday. He keeps trying to extubate himself. She also played the CD that we made for him and she said he was awake and looking around the whole time. It makes me feel good that there is someone there working with him. We also found out that if sicker babies come onto the unit, Emery's going to one of the ones to move over to bay 2. He's pretty stable. This strikes fear into my heart because he's more prone to infection over there, and I'm scared to death losing him to infection. Erik told me not to worry about it, because thus far all of the other babies have stabilized quicker than Emery so they'll move first. Emery can hold his temperature pretty well now. His only concern is the lungs. Shakir, one of the fellows, came to talk to us last night and he said 'It's maddening.' That is the most fitting way to describe it. Waiting for Emery's lungs to grow new tissue is worse than water torture. Shakir was the doctor who came to see me when I was in labor and delivery. He sat and talked with my family and the OBs and everyone kept having conversations about my health and the long-term outcome of a 25-weeker. There was all of this talk back and forth, over my head like I wasn't in the room, so I burst out in the middle of it and said 'what is he? Is he 25 weeks or 26 weeks, because I'm 26 weeks today.' The entire room got silent, and I kid you not the look on Shakir's face was priceless, like we're trying to save both your lives and you care about a day? It was funny. Speaking of funny, I don't feel very funny today. I'm really tired. Emery is 80 days old today. We are on day 80 of the NICU. One day at a time. I never thought that the second year of our marriage would be like this, or the first 3 months of child-rearing. Here's some perspective... Emery still isn't due. He will be 3 months old in 10 days, and he wasn't due until March 27. The cleaning fairies came by again last night, those tricky buggers. Know what's great about it? I think that's why I'm tired. Tonight we are not going to Iowa City and there is no house to clean, the bills have been paid, and I'm exhausted. I finally get a break. Hope all is well. Emery is at 32 mL every 3 hours. He's been stable at 50% O2 unless he's awake and alert, then it's a bit higher. He likes to be talked to. He likes to be touched on his head. He likes his butt patted. He hates messy diapers. We cuddled last night. Tomorrow night Erik and I get to give him a bath. We never have. We are going to tape it (don't worry, we'll put the necessary mosaic fuzzies so we won't be exploiting our son.) Love to all - Sarah, Erik and nearly chubby Emery