Just sitting with the little guy getting in our last cuddle time before his big day. He’s so amazingly peaceful this morning especially for not having been fed his least two meals. I’ll be posting here as we hear news throughout the day. Please send all your positive thoughts and prayers Evan’s way today.
Evan has been doing so well, we could not be happier about his progress. He’s gained about 6 ounces since birth and boy does he eat. Sarah’s milk came in and she’s been a machine. I checked the refrigerator in the ICU tonight before we left and there was enough in there for his next 5-6 feedings. She was very excited about it and so am I, much better for him than formula.
The doctors are watching his intake and output very closely to make sure he’s getting the right amount of calories. We actually weigh each diaper after a changing and I can tell you that a Pampers size 1 diaper has a tare weight of 20 grams. His heaviest diaper, was over 120 grams! Guess that’s what happens when they give you meds to make you urinate. They regularly increase his total calories and he’s been taking it in stride. He’s up to feeding every 3 hours and taking 67mL (2 1/4 ounces). He takes the first 3/4 of it really, really fast and then he wants to take a nap and we have to coax him to eat the rest by bugging him. 🙂
Tomorrow is our last day with him before the surgery. He’ll be fine, I know he will, but it’s really hard to think about what is going to happen to him without completely losing it. Despite everything that we’ve done to learn about and prepare for this, it’s still really, really hard. We’re having him blessed tomorrow afternoon and several family members will be there for it. Thursday morning they will wheel him down to a waiting area right outside the OR at about 8am. Sarah and I can be with him in that room right up until they wheel him into the OR. Surgery starts at about 8:30am and will last a 3-4 hours. We’ll go on a tour of the cardiac ICU and chew on our nails in the waiting room until he’s out. I’ve seen many pictures of other babies after they come out of the surgery, it’s not pretty and it’s going to be heart wrenching. We don’t know what life is going to be like for him immediately after the surgery, supposed to meet with the surgeon tomorrow and we’ll find out. How long will he be sedated? How long will he be on a ventilator, feeding tube, catheter, etc? What should we expect in general….???
Enough of daddy being a downer…. here’s some pictures and video of the most handsome baby you’ve ever seen.
OK, OK… I know daddy is mean and should let the little guy get his rest, but he’s sooooo cute when he’smoving around I had to mess with him a little bit. (I removed the audio in this one, the nurses were talking in the background and ruined it, but the video is still great)
Do you have your tickets? from William Wood on Vimeo.
So I am sitting in the chair feeding the little fella and I sit him up to burp him and what do find? Evan has the same issue as daddy, his pants never seem to cover everything they are supposed to.
Evan is just like daddy. from William Wood on Vimeo.
Evan is officially one and a half days old. He’s been doing what I imagine most babies do for the first few days, sleep. His blood sugar was bouncing all over the place but that has stabilized. We’re trying to get him to eat on his own so that he does not need the feeding tube but it’s proving difficult with the people in the NICU shoveling 30mL of food into him every 3hrs like it’s Thanksgiving dinner, it’s no wonder that he’s not hungry. The surgery is scheduled for next Thursday, until then he’ll be monitored in the NICU. Sarah has been discharged from the hospital but has one more night in a ‘nesting room.’ After that we will go back to the hotel here in Ann Arbor at least in theory. I doubt we’ll spend much time there, we just won’t have a room in the hospital.
Here are several pictures from the last couple days…
Evan! Your room is finally done! I think we are just about as prepared as we will ever be. It took some serious organizing but everything has come together nicely. It is hard to imagine just how much a little baby has until you start to put it all away. First there are all of the extraordinarily generous gifts we have received. Then there are the cases where you are out shopping and pick something up “just because” or maybe it was a good deal. Not to mention all of the Mom-2-Mom and garage sales… All of that piles up and man are we set for a while. I’m not sure how many more clothes we can even fit in the closet. It almost looks as if the entire Jungle 1-2-3 collection exploded in his room but then I took a gander at this picture and realized that indeed we are missing some items but that will be juuuuust fine.
The colors in the photos are a little deceiving. It is much more on the softer than brighter side. On Evan’s crib, we have a mobile, sleep sheep, and musical light thingy. Poor guy will be instantly overstimulated. Also, because one should not use bumpers in the crib anymore, we got the idea from friends to still display them by attaching them to the outside of the crib. And because one should not use a quilt in the crib anymore, we just attached it to the wall so it can still be on display. Why do they put all this stuff together as a package if it is bad for baby?
Ahh well who cares. We love how it turned out and can’t wait to show it off to Evan, whenever he decides to make his entrance… which doesn’t look like anytime soon. Anyone care to guess his birthday? 😀 YAY!
This is normal right? I mean he’s not going to spend much time in the nursery in the beginning anyway right? I guess my task between now and next Thursday is to clean this up mess. Orrrrrrr… Mom will be here next week and will be looking for something to do, hmmm. 😉
We had our second appointment at the University of Michigan on June 10th. This appointment put little Evan at 34 weeks and 5 days.
We started the day off with a fetal echocardiogram with Jane. Evan was awake and ready to play. He was rolling over and just moving a lot in general making it hard for Jane to get all the information she needed. It took a while but eventually she had measured everything she needed. Dr. Owens was looking at the images in another room and came in to talk to us as well as take some images of her own. She said that everything looked great and there were no unexpected surprises. Yay! Evan will not have another echo done until after he’s born at which time they will do a very extensive echo and gather all the details needed to plan his surgeries.
We were approached about a research study and asked if we would like to take part in it. Connie came up to talk to us about the study and see if we were interested. The study is led by Dr. Mark Russell which if you read the last U of M post was the first doctor we met with at U of M that thoroughly explained Evan’s condition to us and what needed to happen to fix his heart. The study focuses on children born with heart defects and need open heart surgery. Some children have more difficulty recovering from the procedures than others despite all the steps taken to protect the tissues from injury. The purpose of the study is to see if there are any inherited factors that help determine the ability of each child to tolerate the stress of surgery. Our only involvement in the study is to allow them to take a teaspoon of Evan’s blood (which would happen at the first surgery when he is sedated) which they will use to look at his genetic markers compared to other babies. Then we give consent for the research team to get copies of Evan’s follow up appointments so they can track how he’s doing up until 6 years old. The team is make up of several pediatric cardiologists, an anesthesiologist, surgeon, and bio-statistician and they are looking to have 1000+ patients in the study. Participation in this study is a no-brainer for us. I hope that the information that they gather can help other children down the road.
We talked to the Barb, the social worker about housing in Ann Arbor while we are there. We really need to get on the ball with this. We still have not booked anything and it’s only a month away. Barb is supposed to be getting us some information on corporate apartments. We really don’t want to stay in a hotel type room for that period of time. I’m really going to focus on this next week.
We met with an OB/GYN for a pretty standard appointment. We didn’t really get anything out of meeting with her but <shrug> that’s ok. She gave us some information about the U of M triage phone, we talked about the group B strep test that every mom has to have before birth, etc. We asked about immunizations for people in contact with Evan and she echoed the need for the pertussis vaccine (whooping cough). This is the Tdap (Tetanus, Diphtheria, Pertussis) vaccine that everyone should have a booster of every 10 years. If you have not had one, get one, it’s deadly, especially to small children. It’s highly contagious and people can transmit the bacteria for 2 weeks after they begin coughing. The illness can last ~6weeks.
At 3pm we had an ultrasound with Cathy… Measurement! This is what we’ve been waiting for! It was great. Evan was up to 5lb 8 oz. Yay!
Next appointment at U of M at 38 weeks.
Last Friday we had our second biophysical ultrasound and non-stress test. As it turns out Friday afternoon is not a good day for appointments. Wow, was it busy. The nurse came by after about 15 minutes, looked at Evan’s non-stress results, said it looked great but she wanted to get 8 more minutes of data. 25+ minutes later they unhooked Sarah from the machine. We went over to the ultrasound area and waited some more. The ultrasound was pretty standard, it’s always great to see him. They didn’t see any issues.
I am really excited for our next U of M appointment this Friday. They are going to look at his heart again and see how it’s doing but what I am most interested in are his measurements. It has been several weeks now since we have heard anything about his size and we’re anxious to hear.
The surgeon says, the bigger the better. I think this will play a large role in the delivery. We’ve got some logistics to figure out still. Do we “move” to Ann Arbor early and wait it out? Do we schedule it and induce? Do we wait for labor and drive the 1.5 hours to Ann Arbor (OB’s suggestion)? I think the exams and ultrasounds the last 2-3 weeks will help us make that decision. We would prefer to let it happen naturally but if he’s already a really good size (which at last look was looking good) then maybe it would make more sense to induce for logistical proposes.
I enjoy photography as a hobby and with such a vast online community it is easy to follow along with some of my favorite photographers as I try to develop my own brand of style. One that I have followed for a while is Natalie Norton. I don’t know how I found her, but she is good. I’m not the best at keeping up with blogs and for a little while I hadn’t visited hers. Then one day I noticed her header had changed, “I am a wife a mom and a wedding and portrait photographer. I live on the north shore of Oahu, Hawaii with my wonderful husband and four crazy sons, one of whom lives in Heaven. Thanks for stopping by.”
Wait, lives in heaven? Holy…. What did I miss??? Her 4th son, named after her beloved but deceased brother, had died January 7, 2010. He was 2.5 months old. Her heartbreak and pain were all over her website and postings, completely palpable. I never knew her but could not help but weep for all her pain. Her son died of Whooping Cough (aka Pertussis, caused by the bacteria Bordetella pertussis). They thought he just had a cough and went to the hospital for fluids, fully expecting to be discharged that day. They left the hospital with empty arms; the illness took his little body quickly. It is likely that Natalie gave her son the disease.
We were all probably vaccinated as children with the DPT, DTaP, or Tdap vaccine (which also protects against diphtheria and tetanus). The vaccine protects you for 5-10 years. Adults need boosters. If an adult has a Pertussis infection, it will likely be mild and present itself as a simple cough or bronchitis. But for babies it is extraordinarily deadly (92% of pertussis deaths is in infants younger than 4 months of age). Having babies vaccinated certainly helps, but her son was just too young to have had the full rounds of vaccinations necessary to give him full protection.
She has many more entries about this tragedy on her old blog. It is tremendously sad. But, she and her husband are committed to being transparent with the grieving process to help others as well as themselves. They have joined the Sounds of Pertussis campaign. It is aimed at educating adults on the importance of getting their pertussis booster and curb the growing incidence of this highly contagious but preventable disease.
If you want to visit Evan or any other infant, I want you to be protected. I’ll get my booster after giving birth. Dad will get his shortly. Not only do we need to give our son every advantage, but as adults we should be on top of these easy things for all babies. Healthy babies get sick too. Visit Sounds of Pertussis or do your own research. But please protect yourself and the little ones out there.
News interview with Natalie and her husband
Continuing since our 30th-week appointment, we are going to have weekly ultrasounds. Usually this wouldn’t happen until week 36, but seeing as we are a special case we get to go more often. Starting at this appointment, we also have weekly fetal non-stress tests. I had no idea what this was but I get to sit in a chair for 20-30 minutes with 2 monitors strapped to my belly. One is for measuring contractions and one measures the fetal heartbeat. I am given a button (think Jeopardy-type buzzer) that I have to press every time I feel Evan move. They are looking for a correlation of Evan moving plus an increase in his heart rate within a set amount of time. Evan passed with flying colors. His heart may be bojangled but dammit it works awesome. Lil fella is going to be alright after all. 🙂
The ultrasounds we have now are called biophysical ultrasounds. It just means they are looking at his overall development. They don’t take any measurements except for amniotic fluid levels. A couple weeks ago it was suspected that the ventricles in his brain were too large so they also measured these. We weren’t worried then and it turns out that he is growing into them just fine. They appear pronounced but measure normally, so there are no other indications of any problems. He was again head-down facing my right side, which explains why I suddenly get shooting pains on my right side and rib area. Of course we couldn’t get a profile pic because both his hands and a foot were in front of his face. Plus it is only getting more and more crowded so the likelihood of getting a nice profile ever again is getting slim. We did notice his little hand holding onto something and it was the umbilical cord. When we zoomed back a little bit we could see that he was not only holding onto it but sucking on it like a paci. We could see his little chin moving and everything. Very cool.
Thanks Mom for coming with me to my appointment. I’m really happy that not only I got to share him with you but also you got to experience your first US. Only a couple weeks left until we meet him in real life. 🙂
Here the tech points out the hand, with the fingers on top and it resting in his palm. Nice fat little arm too. If you squint a little you can see that the dark part in his grip is the cord itself.
Zoomed out, to the right you can see the highlighted region of his forehead and start of nose. The flicker of white in the middle of the image was his little chin moving. Too bad he was being a little stinker and wouldn’t give us a better shot.
Thanks so much to my sister and mom for hosting a shower for Evan. Thank you family and friends for showering Evan with so much love and generosity already. Among you, he will surely find no shortage of your kindness. We received some adorable clothes, lots of nursery items, and oh-so practical tips and tricks from experienced moms. Baby stuff is soooo cute and cuddly. Thanks ladies (and Paulie)! The camera was a little squirrely so sorry the pics are what they are, but I also didn’t need 100 photos of my double chin so maybe it was a blessing in disguise. 🙂 Can’t wait until you all get to meet my little sweetie! With his morse-code kicks he sends his deepest appreciation and thanks.
