This seems to be the motto in the NICU. From the very beginning Willow's Drs. told us to expect to move forward and then come back a little. Today Willow took a small step back. Last night she started working a little to hard to breath on her cannula, so they put her back on the CPAP. They also did an x-ray and it looked like there was fluid in her lungs. That was probably what was making her breathing more strained. So this afternoon they gave her some Lasex, which will help her get rid of that extra fluid.
Despite all this she still had a good day. Her O2 was at 21% all day, and the CPAP was set at +5 which isn't all that high. She also tolerated all her feedings. They stayed the same today, at 10 mls., which is standard if they make a breathing change. She gained 25 grams today, so she's now 3 lbs. 1.4oz. We're still moving in the right direction. When I went to see Willow tonight she was doing good. I got to kangaroo her for over 2 hours. She did well for most of the time. At one point she got too hot, so we shed a blanket. Towards the end a new baby came in from a C-section and was crying up a storm. Willow hates it when other baby's are crying. I guess she just likes it nice and quite in general. So we put her back in her isolette, where there is less noise, and then she settled down. She was even looking all around. Speaking of looking around, Willow will have her first eye exam at some point this week. We are hoping that everything is looking great. It's a fairly quick and painless procedure, but a little stressful as they shine a light in her eye. My mom and Janna took off this afternoon at around noon. They've already called and made it home fine. Thanks again to them for coming up to keep Willow and I company. Willow did very good while grandma was here, so I guess she has to come up again soon. The weather is still garbage up here. Spring can come anytime now. Hope you are all well.
Sorry I'm not getting this post in until Tuesday morning. I had a very busy day up here yesterday. I checked all but one thing off my list that was 18 tasks deep. It's good that I was able to come home and help out with stuff that Lindsay just simply doesn't have time to do. Last night Lindsay went over to "craft night" with some friends of hers, and they guys came over here and ate meat. My friend Cameron "the comment picture guy" made a really good roast. Earlier in the evening our friend Ben dropped off a chest freezer for us to use, so hopefully we now have enough room for all the milk. Thanks to Ben and Kim for that, and hello to Myah (their 4 year old daughter who looks at the blog).
Willow had a great day under grandma's watch. We got many updates throughout the day. In the morning Jean went in and got the skinny on things. She had a good night and her feedings were up to 9 ml. My mom didn't hold her then, but went back later in the afternoon and they had put her on the nasal cannula. She was doing well with it, so my mom was able to hold her for 2 hours. She said Willow's O2 saturation was good the whole time. So far so good with the cannula. My mom went back again later in the evening to check on Willow. She was being kind of fussy in her isolette, so my mom put her hands in to comfort her. This wasn't really working so my mom asked the nurse when her last diaper change was. The nurse said it wasn't that long ago but she'd take a look. Sure enough Willow had a messy diaper and after it was changed she settled right down. I guess grandma knows best. In the evening they increased her feedings again to 10 ml. I think they are going to increase 1 ml every 12 hours as tolerated until we get up to full feedings. I'm not exactly sure how much a full feeding is right now, but I'll let you know after I ask. I have a dentist checkup this morning, and I'll be heading down right after that. I can't wait to get down and see Willow's beautiful face with nothing but a cannula on it. I'll try to update again later tonight.
Here are a couple of pictures to contrast how much Willow has grown. She's up to 3 lbs. 1 oz. today!
Yep, Willow hit 3 pounds today. We are so proud of her and how well she's doing. She really is a fighter. This morning we got some really good time in with Willow She had a good night, and Lindsay got to kangaroo with Willow for over a hour first thing this morning. Willow did great the whole time, and mom was very happy. Willow's been tolerating her feedings well so far. She's up to 8 mls every 3 hrs. They will raise it by 2 ml every day as long as she's doing well. She's been doing good on the CPAP and they are hoping to go to a nasal cannula within the next couple of days. This evening before we left we both held her for a while "baby" style. I got a great look at her beautiful face. I was a happy dad.
Lindsay and I are now back in Houghton. We got back tonight kinda late. I'm getting a bunch of stuff done tomorrow and then heading back down on Tuesday. My mom and Janna are holding fort in MQT and sending updates often. Janna is a great help with moral support, unfortunatly the only thing she can do at the hospital is hold our spot in the waiting room. Mom should get to hold Willow the next couple of day. Thanks to them for all the help. We'll keep updating you, even if we're in Houghton.
Josh back for the day. Well Willow had another good day today. She is upto 2 lbs 14 oz. and is no longer the smallest baby in the NICU. Another baby came in yesterday that was born at 31 weeks and weighed 2lbs 13 oz. So Willow has a partner in age and size. This morning Lindsay and I went to see our little girl and right when we got there they were about to extubate her. It was a very quick and easy and she did very well right away on the CPAP. We were able to snap a quick picture with her wearing one of Great Aunt Jill's hats before they put the CPAP on her. It's probably the only time I've seen her without any tubes on her face. Quite a cute sight. After that it was Doctor's orders not to hang out around the NICU all day. I don't think Dr. Frei was too serious, but I think she's worried we aren't spending enough time on ourselves. So we went back to the Beacon House and got some stuff done before mom and Janna showed up.
They arrived around 5 PM, and after getting settled into their room we went over to the hospital. Lindsay and my mom went in to see Willow and my mom got to hold her for almost 2 hours. Willow did very well the whole time, spending most of the time sleeping. I guess grandma has the soothing touch. I feel so bad for Janna, because they are very strict about only parents and grandparents in the NICU. I wish they would bend the rules for her, but I also understand why they don't. If they did they would have to do it for everyone, and that would just introduce that much more bacteria and noise to the NICU. It still is a bummer for her after traveling all this way. We just have to think of all the auntie time she'll have once Willow gets outta here. Tonight we went out for a nice dinner and opened some gifts that came up with mom and Janna. Thanks to everyone for thinking of us, and sending stuff along with them. It's just so nice to know everyone out there is rooting for little Willow and keeping us in their thoughts and prayers. It really seems to make it easier on me knowing this. Chuck and Judy are coming down for the day tomorrow, so it'll be a big grandparent fest around here. Lindsay and I are both heading back to Houghton tomorrow evening. I'll be coming back on Tuesday and Lindsay on Friday. Lots of traveling, but it's so worth it. Til next time.
Hi everyone, Lindsay here. Willow is 32 weeks gestation today. I got down to Marquette at about 5 today. Dang, was it a long week! I mean, I'm not saying I don't love my job, but when you compare working to hanging out with Willow, there's really no comparison. Work loses. I wanted to work 8.5-hour days M-Th so I could leave early today (Friday), and I did, but 8.5 hour days turn into 10.5 hour days when you have to punch out 3 times to pump. Ugh! Then as soon as I'd get home, it'd be time to pump again, I'd have one spare hour to eat, walk Scout (that was my plan but it didn't happen, not even one day :( ), and do any other random chores, etc. I didn't get much sleep. It's going to be a hectic few weeks, but it will all be worth it when I get to be at home, for a little while at least, to take care of Willow when she gets out of the hospital. When Josh posted those pictures a couple days ago, I could hardly believe they were Willow. She looked like a completely different baby! My mom jokingly wondered if he accidentally walked up to the wrong isolette. But when I got down here today I was even more amazed. She looks huge to me! She's really starting to look like a regular newborn, just smaller. Josh's morning phone call to me after his visit with Willow wasn't as positive as I hope for; she didn't tolerate her morning feeding well and they held off on her next feeding. I was so worried she was getting sick again. But she took the rest of her feedings today just fine, so hopefully that was just a fluke. She's 2 pounds, 12 ounces today. Her vent settings are about as low as they can get, so it's almost for sure that they'll extubate her tomorrow and put her back on the CPAP. Keep your fingers crossed! I was very happy to get to kangaroo Willow tonight. She almost crushed me under her massive weight. It was such a great feeling after missing her so much all week. She was calm as can be for 90% of the time, had her eyes open for awhile and was sucking on her "paci" as the nurses call it. She did have one little fit where she kept trying to flip her head over (that's her favorite trick), and I had to hold her head to prevent her from doing that. She got mad and started desatting, but about 10 seconds later she forgot about it and calmed down again. She slept the rest of the time. We have some great pics for you today-eyes open! Enjoy.
It's hard to believe that Willow is already 5 weeks old. The time has gone fast and slow all at once. When she's doing well time seems to fly by, but when she's sick it almost seems like time comes to a standstill. But here we are at 5 weeks and she's doing good! This morning when I went in to see Willow she had graduated to "premie" diapers. I didn't even realize it, but this whole time she'd been in "micro premie" diapers. The new ones are a little big for her, but she was wetting through the old ones, so it was time to move on. This morning she was doing very good, resting and rarely desating. They decided this morning to increase her feedings. She is now getting 3 ml every 3 hours. At 1 AM they will increase it to 4 ml and then keep increasing it 1 ml every 12 hrs as long as she tolerates it.
The blood cultures can back negitive this afternoon, so at around 4:30pm they put in her new picc line. It went with out too much incident. I guess the first try didn't end up where they wanted, so they did it again and the second time went in great. She tolerated the whole thing very well. Now she'll be able to get all her baby gatorade again. The special treat for the day was when I went to see her after the procedure I got to Kangaroo her. It was so special because I wasn't expecting it at all. They wanted to put her in a new, clean isolette, so they swapped them out while I held her. She did very well while I was holding her. Because she still has in her vent tube she wasn't letting out any grunts of happiness, but I think she would have been. Her settings on the ventilator are getting lower and lower, so hopefully in the next day or two they'll put her back on the CPAP. Lindsay will be back down tomorrow, and Grandma Jean and Auntie Janna are coming on Saturday, so we'll have a good group down here this weekend. Sorry for the extra late post tonight, it was one of those nights where time flew by. Until tomorrow.
In the words of the Beatles, Willow is getting better. Today was a day full of good news. First of all her culture from her spinal fluid came back negitive, so there is no infection in there. That made me let out a huge sigh of relief. Willow's chest and gut x-ray was improved today as well. Her gut looked good enough that they decided to resume feedings again. They are starting out small, 2ml every 3 hours. If she tolerates the feedings they will gradually increase the amounts, just like before. Her lung x-ray was looking better as well. She does still have a small amount of bacteria in them, but it will get taken care of with the antibiotics that she is on. They were also able to come down on some of the settings on the ventilator, so hopefully she can be weened off of it in a couple of days. So far the blood draw they did yesterday didn't have any new bacteria growing in her blood stream. If it still doesn't tomorrow then they will put in a new pic line. With the new pic line she'll be able to get her full amount of "baby gatorade". Right now they can't give her as much as they'd like because they are giving it through her IV, and that can't take a ton of fluid through it. Today Willow was up a half an ounce in weight and is at 2lb. 13 oz. You'll see from the pictures today that she's really starting to fill out. You'll also notice in the pics that her hair is turning either blonde or red. I'm not sure which it will end up being. There are red heads on both sides of the family, and both Lindsay and I were blonde as kids, so we'll have to see. One things for sure is she is no longer in the brunette catagory. She was getting pretty squiggly again today and keeping her nurses busy by moving all over the place. I don't think she's back to her old self 100% yet, but she's getting there. All in all a pretty good day here. Keep the comments coming, I check probably 8 times a day to see if there are any new ones. Thanks to Cameron and Liz for the awsome "text art". Lots of people have told me how much they enjoy it. It must be a nice distraction from writing a disertation.
Hope today was good for all of you out there reading the blog. It was a good day for Willow. Today her weight was 2 lbs. 12 oz., so she only lost 2.5oz from yesterday, which is less than I thought she was going to lose. Hopefully she can keep the extra ounces on and break the 3 lb. barrier before to long.
Today they were able to figure out exactly where the infection came and what it is, so now they will be able to really go after it. The infection ended up coming from her pic line, which is a central line that delivers all her IV nutrition and fluids. Unfortunitly this is something that often happens with these pic lines. After they pinpointed it they took out the pic line and they will put in a new one as soon as the infection clears up in her bloodstream. Hopefully that will be tomorrow or the next day. Willow's Dr. decided not to start feedings today, but hopefully they can resume tomorrow. Still no difinitive news on the culture test on Willow's spinal fluid, but they are feeling good that it will come back negitive, which will be very good news.
I just went and saw Willow again and she was in her favorite position, butt up in the air. I snapped a few pics. Quality isn't great, but she just looked so comfy. The thing drapped over Willow's neck and head is her "frog". It's a positioning tool filled with beads that they use to get into the postion that is the best. In this instance it makes her feel as though she's still in the fetal position inside the womb and that makes her more comfortable. Willow's Dr. was very happy with how she was acting today, and said she could already tell that the antibiotics are working and she looked much improved since Saturday. Hopefully she's around the bend and has the worst behind her and in a few more days I'll be holding her again.
The weather in Marquette was pretty dreary today. Cloudy and cold and it's going to rain tonight. I am sooooo ready for spring. I just want sun and warmth and to get Willow home and healthy. If that seems like to much to ask for I'll just take Willow coming home healthy. I'll talk to you all again tomorrow.
This last photo isn't really relitive to Willow's stay in the NICU. It was taking at Lindsay's 30th birthday/Obama victory party last November. I just think Linds looks really good in the pic, and I love the Obama cake that Emily made for her. Hope you enjoy it as well.
First of all, thanks for all the encouraging words in your comments. It really helps knowing that so many people care for a little girl they only know through pictures and words. Today Willow did pretty good. She is stable and resting peacefully. She was up to 2 lbs 14.5oz today!! However, she got alot of fluids yesterday, including some more of grandpa's blood, so we'll see what she weighs tomorrow. She is still on her vent, and probably will be for a bit yet. It is best for her right now, as it helps her rest and use all her energy to fight the infection. They still havn't completely narrowed down what type of infection it is, but they know it's bacterial and in the bloodstream. They are treating it with antibiotics and will continue to do so for probably another 8-12 days. The good news is that her stomach and intestines still look good, so they may resume feedings tomarrow. Willow's Dr. said she could have resumed feeding today, but she wants Willow to concentrate all resources on kicking the infection, and not on digesting food. Today she got a platlett transfusion, which went very well. They are still giving her sedation as needed, but as of 5:00 PM they hadn't given any since 8:00 AM, which is a good stretch of time. I think that show's she is already getting more comfortable. Tomorrow we should find out the results of her blood cultures. This will tell us if she has any infection in her spinal fluid, which we don't think she does, and hopefully they can pinpoint exactly what the bacteria is and aggresivly attack it with specific antibiotics. I'm feeling good myself and was able to go see Willow last night and a couple of times today. I should have brought the camera, because she was looking very cute sleeping away in her isolette. Tomorrow I promise pictures. Even though she's sleeping most of the time she is still moving around. She's not as active and "squiggly" as she was, but she will be again soon enough. Thanks for reading and I'll write again tomorrow, "hope"fully with more good news!
Well it's just amazing how quickly things can change in the NICU. Yesterday afternoon we got a call from Willow's nurse saying that she was having more "spells" than usual. By "spells" she is talking about apnea's (times when Willow forgets to breath), and brady's (heartrate drops). It is normal for her to have a couple of these here and there, but she was having them more frequently, which tends to indicate she is getting sick. So last night they ended up putting her back on the ventilator, which will keep her from having these spells. They also gave her some seditive to make her more calm. They then once again started antibiotics to try to head the illness off at the pass. This morning then they ran some blood tests to determine what is wrong, and it can back that she has an infection in her blood stream. This can be treated with the antibiotics that she is on. They also drew some spinal fluid to test to make sure the infection hasn't spread into there. The preliminary tests were good, but they won't know until tomarrow or the next day on that for sure. It's been a long day of sitting around waiting for news. Unfortunatly I'm still sick, and Lindsay was also feeling ill, so neither one of us could go see her today. Luckily Chuck and Judy were coming down today, so they were able to go in and fill us in with how she was looking. We can also call the NICU at any time and talk to her nurse and get updates. Chuck and Judy both said she was looking good. They said she looked very peaceful sleeping away in her isolette, which is what she needs right now. Willow's Dr. and nurses didn't seem all that worried. They basically said she's being a premie, and these things happen. They are even hoping that they can resume feedings, which have been suspended, before too long. They've run a couple of chest x-rays, and those are already showing improvement, so we are very hopeful for a quick recovery. Sorry this post isn't as upbeat as we would like or want, but if everyone out there reading this sends Willow positive thoughts and prayers she'll pull through in no time. That little girl is a fighter I tell you, and she's going to be ok. Thanks to everyone for there words of encouragement.
Hi everyone, Lindsay here. I'm back down in Marquette for the weekend. It looks like it's going to be weekends-only for me for a few weeks. Here's why: in a few weeks, Willow will be big enough to try eating like regular babies do: from a nipple. I'll want to be down here a lot from then on, so she can get used to breastfeeding as much as possible, as opposed to all her feedings coming from a bottle. So, given that I only have 12 weeks off of work, I want to conserve as much time as I can now, so I can be down here for the feedings. It would also be great if I still have a little leave left when Willow comes home. The standard 3-month maternity leave works great for term babies, but it's just not enough when your baby is born 3 months early! Willow is 31 weeks (and one day) gestation right now; babies usually get to come home around 40 weeks, give or take a couple weeks. Hopefully she will get out on time, or even early-that would help. Being away from Willow so much will be hard for me, but one good thing is that Josh's work is really slow right now, so he can be down here with her pretty much all the time while I'm up there working. Although the working remotely didn't work out for me, Aspirus Keweenaw has been really flexible and accomodating with my wacky schedule, and I really appreciate it.
Willow is doing pretty good. She was only on the cannula for a day though, and she tired out and had to go back on CPAP. It's not anything to worry about though; it's pretty common to go back and forth for a while. Although she's on CPAP, she is on 21% oxygen, room air. It seems she doesn't need the extra oxygen right now so much as she needs the pressure from the CPAP to keep her lungs inflated a bit. Josh has a little cold, so he's steering clear of the NICU right now. It sucks, but I'm glad it happened now, when I'm down here, so someone can visit Willow. When I got down last night, I went straight there to see her. I got to do like Josh did the other day - hold her like you normally hold a baby, in the crook of my arm. It was the best feeling ever- I got to actually look at her (which is pretty much impossible while kangarooing). I looked at her and she looked at me, and she was very content the whole time, just going to town on her pacifier. The last half hour or so she dozed off with her hands up over her head; she looked so cute and funny. I didn't have the camera with me though. This morning when I went over, she was getting another blood transfusion, which is also normal. They're still using Grandpa Chuck's blood. She was still on 21% O2 as well, and had a huge poop. She's also tolerating her feedings well and is up to 4 mL every 3 hours. It seems like a lot after being off feedings for awhile, but to put it in perspective: she's getting 32 mL a day. That's about an ounce. I produce about 50 ounces a day. Needless to say, we've got a bit of a surplus of milk right now. Our freezer is full, along with all our allotted space in the NICU feezer, along with part of my parents' freezer. I think we might buy a chest freezer.
That's about all the news for today. Enjoy your weekend!
Josh back again. Well today was another great day for Willow. They ended up keeping here feeding schedule the same, but she was doing so good on her breathing that they put her on the nasal canula. The canula gives Willow o2 and will also give her some positive pressure, kinda like the CPAP at +4. When I went in to see her tonight she was at 21% o2, so she's just doing awsome. I held her kangaroo style when I first got here this morning, and just now I held her like a "real" baby. It was the first time that any of us have done that. It was very nice because you could see her face so well. She also got to wear one of her hats from Auntie Jill, she got on "Sweet Pea". Sorry no pictures tonight, the camera and computer are still with Lindsay in Houghton. Lindsay will be coming down tomorrow for the weekend and she's very excited to see her little girl. The posts this weekend will hopefully be full of cute pictures.
Hey everyone, Josh back on posting duty for today. Sorry no post or pictures yesterday. We got home from MQT kinda late, and after getting organized and such their wasn't any time. Lindsay and I are still in Hougton. I'm heading back down first thing tomarrow morning and Lindsay's coming down Friday morning. We both can't wait to see our little girl. Anyways onto Willow. She has been doing very good the last couple of days. Yesterday they resumed feedings starting at 3ml every 8 hours. She tolerated that very well so today they upped it to 3ml every 4 hours and she is still doing just fine on that. Willow's nurse thinks they'll up it again tomorrow, probably to 3ml every 3 hours. Her nurses have still been saying how wild she is, which isn't good or bad. They think it's primarily because now that she is feeling better she is getting hungry. Her nurse today said she calmed down considerably after her feeding, so I guess we just need to keep feeding her. I'm not exactly sure what her weight was today. Her nurse told me 2lb 4oz, but she also said she is 1130 grams which is 2lb 8oz, so I think it's the latter and she didn't do her gram/lb conversion correctly. Anyway she's gaining weight. I can't wait until she hits 3 lbs. Here is a card that our friend Amy made. We hung it next to her isolette kinda as a sign. Both Lindsay and I got to kangaroo her again on Tuesday before we left. This time she did very well for both of us. That is the first thing I'm going to do when I get down there tomarrow. She really seems to enjoy it, and lets out her grunts of approval, atleast I hope they are of approval. The other big news is that her nurse thinks she may be graduating to a nasel canula in the next couple of days. Currently she is still on the CPAP, but her nurse said it's off more than on because she either pulls it off or rolls over and it comes off, little squiggeler. Right now she is on 21% o2 on the cpap, which is room air, and the pressure is has been lowered to +5. When she started on it earlier this week she was at 24-29% o2 and a pressure of +7, so she's making good improvments. The canula will just give her o2, no other breathing assistance, trust me when I say it's a big step, especially for a premie coming off pneumonia. Dr. Frei is still not in, as she is sick, but they are expecting her in on Friday. We are looking forward to that, although I don't really mind Dr. Grandy, he just has a different style. I got all the pictures and videos uploaded to the computer now, so here are a few. Thanks for reading and keep on commenting, I look forward to them as much as ever. Take care, Josh
Little Willow here. I've had an eventful couple of days with Mom and Dad. I'm feeling a lot better and the nurses all say I'm really feisty. Yesterday morning, Dad changed my diaper. I thought he did a really good job, even though he said it was the first diaper he's changed...ever. Later that afternoon, I decided I was getting really sick of that ET (endotrachial) tube that's been sticking out of my mouth. So I waited until my nurse Jen stepped away for dinner, then I got really squiggly and flipped my head around until the tube got dislodged! Nurses came running to my rescue, and I achieved my goal of getting rid of that tube. Instead of re-"intubating" me, they put the CPAP back on me-yay! Now that my mouth is free, it's much easier for me to suck on my little pacifier, which I love. Today I got to kangaroo with both Dad and Mom! Dad was first, and I really liked laying on him. I calmed right down and fell asleep for a whole hour. When it was Mom's turn, I was a little squigglier, and my eyes were open-I was wide awake. I wasn't too happy though, and my O2 sats were a little on the low side the whole time. Mom didn't take it personally though. Dr. Grandy says today is my last day of antibiotics, and I might get to start my feedings again soon. I weigh 2 pounds and 5 ounces today. My lungs are feeling a lot better, and I don't have as many loogies these days. Dr. Frei is coming back tonight, and I'm excited to see her - at least she knows I'm a girl! Mom and Dad said they'd post some cute pics and video when they get home tomorrow. Love, Willow
Sorry there hasn't been a post in a couple of days. Lindsay and I just got back into MQT late last night, and by the time we saw Willow there was no time for a post. Willow is doing pretty good still. She seems to be improving every day. Last night when we got in we were able to put our hands in the isolette, and she seemed to enjoy it. She hasn't needed any sedatives now for a couple of days, which shows that she is getting more comfortable. She had another x-ray done today and her stomach and intestines are looking good, but she still does have pneumonia. They still don't seem too worried about it. They are giving her a diuretic called lasix today. Apparently peeing will help get some of the extra fluid out of her lungs, so that should help things along. Willow is now up to 2 lbs 6oz. so we gained an ounce! She was very "squiggly" this morning when we saw her. She even flipped her head over, which is not easy or good when you have a tube sticking out of your mouth. It was all good though. Her nurse just flipped her head back over. All her nurses say how strong she is for such a little girl. They also say how she's such a cute little peanut and every one of them seems to enjoy taking care of her. No word yet on when we can start kangarooing her again, but we are anxiously waiting for the word. She is on at least another 2 days of antibiotics, possibly up to 6 days. After those are done is when they will start feeding her breast milk again. Sorry no pics. I left one of the cords I need in Houghton, so I'll get it when we go home on Tuesday.
Hi everyone, We haven't posted a photo in a while, and I did take some last night, so I figured I'd do a quick post this morning and put up a photo. Willow continues to do well this morning. Yesterday they thought her heart murmur seemed louder and they were a little concerned that her PDA (the hole in her heart she was born with that went away) was back. So they did a chest ultrasound, called an "echo". The results came back this morning and it looked normal. No PDA. So that is a relief. Her gut x-rays are looking better, although her chest x-rays are still showing a lot of gunk, or whatever you want to call it. She definitely has pneumonia. But I think they're expecting it to go away with the antibiotics she is on. She's 2 pounds, 5 ounces today and is still off the bili lights. I forgot to ask about sedatives-whether she has gotten any lately. I really should start bringing a notebook or something in the NICU with me so I can remember what questions to ask and also the answers to the questions. Last night I read Willow her favorite book: "Are You My Mother?". Those of you who have been reading this blog for a long time might remember that I was reading her that book the first time I felt her kick. I think she still likes it. She seemed happy to hear it, and I held her hand for a while. As long as the weather in Houghton settles down as it's supposed to, I'm heading home this afternoon. I'll be working tomorrow and Friday. The working remotely set-up isn't going to work out after all, and so I've arranged with my employer to actually come to work 2 days a week instead. Normally I think it'll be Wednesdays and Thursdays. It'll be hard to be away from Willow for two days a week, but I have to remember that the more I can work now, the more time off I will have left when she comes home, and she'll need me more then than she needs me now. My mom is coming down tomorrow to hang out with Willow, and then Josh and I will both come back Friday after work. Here's a photo of Willow from last night. Doesn't she look good without the CPAP on her face, and no shades or CPAP hat? The nurses say they can tell she looks bigger already.
Hi everyone, Josh headed back to Houghton yesterday and my friend Emily came down and spent last night. It was good to have her here; I have to say, it made me feel a little more normal. She went back this morning, so I'm on my own for a few days, which is just fine. I'm completely "able-bodied" now and am trying to walk to and from the hospital (rather than drive) and take the stairs rather than the elevator here at the beacon house. It's amazing how your muscles just disappear if you don't use them for a few weeks- my legs look like toothpicks. I went and had a good long visit with Willow this morning. She seems to be stable now. They had her ventilator turned way down as far as the number of breaths it takes for her, and also the percent of oxygen it gives her, which was down to 21 percent again (room air). Her oxygen saturataions were very stable while I was there (she wasn't "desatting"), and at 10:30, they hadn't given her any sedatives since 1 AM and she was still doing well and not thrashing around. They took away the "bili blanket" again because her jaundice level was down to 1.5. So now she doesn't look blue anymore. :) They took out the IV in her arm too, so she was lookng very normal with no blue color, two free hands, no hat and no shades. Of course I forgot the camera again though. Hopefully I'll remember it tonight. She's up to 2 pounds, 6 ounces now too! I was surprised that she's still gaining weight steadily even though she's only getting IV nutrition now and no milk. So, it's pretty much all good news today. Her nurse let me help take care of her quite a bit this morning too. I changed her diaper, took her temperature, swabbed out her mouth, and helped flip her over onto her tummy. Laying on her tummy with her butt in the air and her legs tucked under her is Willow's favorite position. Last night I also got to touch her without a glove on. Her skin is very soft, and the fuzz on her head is getting more noticeable. When she was first born it looked black, but now it's looking a little lighter. The nurses say she has very feminine features. I can't really tell that, but I guess they've seen a lot more babies than I have! Until next time, Lindsay
Well we made it through another day in the NICU. The good news of the day is that Willow is up to 2 lbs 4oz. Another good thing is that they don't think she has an infection in her digestive tract. The bad news is that she may have pneumonia. When Lindsay and I heard this news from Willow's doctor today my heart nearly stopped. However, as I asked more and more questions it sounds as though it isn't a huge deal. Willow's nurse said that almost 100% of the babies in the NICU that are on breathing support will develop pneumonia during their stay. All go on to recover and do just fine. They think they caught it very early and started her on the necessary antibiotics immediately. She'll be on those for probably 10 days and then it should be all cleared up.
Today she was actually doing good. They have her on a mild seditive so she isn't in any discomfort and it allows her body to heal itself. Her oxygen saturations looked very good today and she was only getting 23% oxygen, so that's great news. Unfortunately we can't touch her at all right now. Even her nurses are touching her as little as possible, and just trying to let her rest. She looks very peaceful in her isolette and her belly looks much less bloated now that most of the extra air is out of it. Hopefully tomorrow is another day of rest and recovery, and before we know it she'll be back on feedings and fattening up. We'll keep everyone posted on how she's doing.
Well we had our first minor setback today. Willow's doctors had told us to expect something like this to happen, but it still isn't at all easy. This morning Willow wasn't processing her breast milk, so they ran some x-rays and determined she has a bunch of air in her stomach and intestines. The air came from the CPAP. Apparently instead of all the air from the CPAP going to her lungs she ended up swallowing some and that's how it got into her stomach. To correct this they put her back on a breathing machine that is a tube into her lungs. Since she was put back on this she is doing much better. They have had to suspend her feedings for now, but will continue to give her nutrition with her baby gatorade. They will run more blood tests tomarrow and do another x-ray, so at that time we'll no more.
The good news of the day is that her jaundice level was low enough that they turned off her billi light. So when we went to see her tonight we could see her entire head. No CPAP over her nose, no sunglasses on her eyes, they even had her cap off. I wish we had the camera with us, as it was the best look we've had of her in a long time, and quite honestly she still looked very good.
Willow's weight is now upto 2 lbs 2 oz. and seems to be holding steady. She is expected to continue to gain weight, even without getting any breastmilk. She is a fighter, and we know she'll come through this just fine. One setback in the first 16 days is very good according to her doctors, so we're try not to get to stressed out about it. One of us will write again tomarrow when we find out more info. Thanks for keeping us in your thoughts and prayers.
Hey everyone. Josh back for another fun blogging session. I was back in Houghton until this morning, and it's great to be back in MQT and be with my girls. I was able to get 40 hours of work in this week, so that will help. My employer has been very good about working around me being down here with Lindsay and Willow. It is very nice working for someone that understands the importance of family. Anyways enough about me.
Willow continues to do well. They have been constantly upping her feedings, and she is now up to 11 ml every 3 hours. They figure once she hits 18 ml they can stop giving her the baby gatorade and she will just get the breast milk. She is still getting all the breast milk from a feeding tube that goes in through her mouth. Eventually, at 32 weeks or so, they will start feeding her with a bottle. And even then she probably won't eat very much that way at first and they will continue to feed her the rest through her tube. She is still on her CPAP breathing helper, but they have for the most part been able to keep her oxygen level fairly low. When we met with her doctor, Dr. Frei, this morning she didn't have a whole lot new to say, and I take that as a good sign. In fact, tomorrow will be her third day in a row that they aren't running any blood labs on her. Earlier they were running them every day. The big deal of the day is that Lindsay finally got to kangaroo her little girl again today (see pictures). Lindsay's cold sores were all cleared up and she got the go ahead from Willow's doctor. It was, as expected, a very emotional reunion, and they both seemed to enjoy the experience immensely. Another bonus to kangarooing is that they take off Willow's sunglasses that protect her eyes from the billi lights. She opened then up for a little while and she was looking right at me. I do know that they can't see much yet at this age, but I love seeing those eyes. Tomorrow night will be my turn to hold her and I can't wait.
Lindsay's mom was down here with Lindsay all last week while I was working. She has been such a huge help to us through this whole thing I can't thank her enough. She was constantly running errands for Lindsay and helping her get organized down here. Thanks again Judy. Also thanks to Chuck for driving me down today. Big help indeed. We got our first family photo taken today by one of the NICU nurses. It's not the best, but it has all three of us in it. The thing I'm holding is Willow's breast milk. You hold it up high and it goes in with gravity. Thanks again for all the wonderful responses and for all the cards, gifts, etc. It's nice to know Willow has so many people pulling for her.
Sorry it's been so long since I've posted. Not much has been going on. Willow is holding steady, for the most part, with some ups and some downs but nothing too big either way. She's back up to 2 pounds again today after losing weight the last couple days, so that's good. They've also upped her feedings again, to 6 mL every 3 hours. They seem to be increasing the amount pretty steadily. so that's good too! She has been having a little more trouble breathing the past couple days. They had to increase her CPAP amount because her lungs were looking a little deflated. They also had to increase the percent of oxygen she's breathing. But they don't seem too concerned about this. She also had another blood transfusion today. This isn't good or bad. As before, it's just because they have to take so much blood from her for tests, etc., so they have to put some back in. Overall, she seems to be doing good, and we're really glad to see her gaining weight again. I still can't touch or hold her; I'm hoping the cold sores will be gone by tomorrow or Thursday at the latest. It's really been hard not to be able to touch her. We asked today if Grandma Judy could kangaroo her, but they said we probably shouldn't because of her CPAP situation. By the way, don't be alarmed by her blue color; that's just because the photo was taken under the blue lights that help with her jaundice. Jaundice is not a big deal; lots of babies have it. Willow got a present in the NICU today. Josh's aunt Jill sent her 7 tiny knitted hats, one for each day of the week. Jill is a pro knitter. They are so cute. Willow will have to wait to wear them until she's off of the CPAP machine, because for now she has a special little hat that has velcro staps that hold the tubes coming off the CPAP. That's OK because I think the hats are still a little too big anyway. Here's a photo of all of Willow's hats:
Willow's doctor, Dr. Frei, wrote us a note that we thought was pretty cute.
This blog follows the adventures of Lindsay, Josh and Willow Jenson. It started in 2008 as my pregnancy blog, then when our daughter was born 14 weeks early in February 2009 it morphed into a medical blog as she spent her first 105 days in the NICU. Now, thankfully, it's basically a run-of-the-mill new parent blog.