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