Thanksgiving in Wisconsin

I actually forgot about taking any pictures at Uncle Scott and Aunt Liz's house until we'd made dinner, eaten, cleaned up most everything and busted out the dessert! But, I'm glad I had my camera for this!! My dad made himself a wonderful dessert of warm blackberry pie with ice cream on the side. I believe (and please correct me if I'm wrong) he was getting a fork when his yummy pie and ice cream slid off of his plate and into the utensil drawer! The picture above shows dad, Greg and Eric attempting to clean up the mess. This is what was left in the drawer after dad (in cleaning up the mess) scooped most everything back onto his plate to eat...... and then tried to eat the few berries that were left out of the utensil tray itself!! It was nice to laugh so hard that I cried!! I love you, Dad! 

The (day after) Thanksgiving Day Update!

Well, it doesn't seem like a whole lot has happened since Tuesday, but then when I thought about what to blog, I guess alot has happened....Mia was put on a nasal cannula Wednesday morning and has stayed on it! She fluctuates between 21 and 28% oxygen and gets a little pressure every once in a while. She is having spells because she is having to work harder to breathe. But, the thing I have to keep reminding myself is that, as far as her body is concerned, she isn't even supposed to be breathing right now!! So, spells every once in awhile are expected! She is at her goal feeding-14 cc every 2 hours. She has had some large aspirates. Sometimes they waste it and give her a fresh feeding and sometimes they give it back to her to see what she does. It all depends on how her oxygen saturation is, what position she was laying in, etc... They have also started adding vitamin fortifier to the breast milk. This gives her iron, vitamins and extra calories. Her goal caloric intake per feeding is 24 calories. Right now she is at 23. Yesterday, she was at 21, so they're moving her along pretty quickly. I have a feeling it's becasue she is a little behind the curve for where they'd like to see her. She didn't feed for 10 days because of the NEC and so her weight(back to 2 lbs., 9 oz. today after 2 lbs., 10 oz. yesterday) is low (I think); not low enough that anyone is worried, but she will be 32 weeks (her gestational age) next Tuesday. Sometimes, kids her age are already learning to use a bottle or to nurse by now. Now, for those of you that know me, hold off on the comments--I'm not worried that she's behind or freaking out that she's not where she "should be". SHE'S FINE! She's where she needs to be right now. ANYWAY! She has also had the heat/humidity changed in her isolette. The isolette used to heat up and cool down as Mia needed. Now, it stays at one tempertature and Mia has to work to keep her temperature regulated. Now, it is still quite warm in her isolette, but this is the beginning of trying to get her into an open crib!

 

Thanksgiving at the hospital......

Annemarie is getting very comfortable with her sister, which is good. She is very good at settling Mia when she gets fussy in her isolette. And Mia definitely responds to her sister when Annie talks to her. Annemarie was able to hold Mia again. This time was easier because Mia was only on a nasal cannula and her PICC line (her IV) is gone--two less things that we have to mess with when we take her out! Annemarie was VERY excited that her sister was holding her finger... 

Mia slept for a little while when Annie was holding her. She was very happy that her big sister was holding and rocking her..... and then she woke up!! We tried really hard to get a good picture. The picture looked in focus more than it is on my camera, but, this isn't too bad. Her eyes stay open for little spurts, but if it's bright, she closes them pretty quickly. Apparently, the worried expression is genetic...from Granma Breckley to Mom to me to Mia...if I believed in reincarnation, I would think that Mia is my Granma Breckley. She looks SOO much like her, it's weird. I can just hear my Granma saying, "She's a pretty one." 

A really good day....

Mia has had a really good day. I was able to hold her for 2 and a half hours! She then had a GINORMOUS poop! YAH!! (The things we get excited about!) But, that means that her bowels are working well, which is especially important after her NEC. She is up to 8cc of breast milk every 2 hours and as of an hour ago, was tolerating them very well! She's not had any spells, either. She's still on CPAP, but she'll hopefully be able to be weaned off that once her feedings are stable (they will hold her at 14 cc). We feel so blessed and thank you so much for all your love and prayers (AGAIN!). Please continue to pray for the other babies and their families. There were 2 new admits today and I could tell that one was quite sick....

Last one...

And just look at that kisser! I cannot WAIT to kiss those little lips! Even with all the wires and tubes she's the cutest! She's really filling in her skin, too! I forgot to write it earlier, but she's now 2 lbs, 8 oz!! 

Of course....

I blog and THEN check my e-mail and there are the pictures that my mom took at the hospital today! I forgot she had taken some. I was able to hold Mia for almost two hours and it was great....as usual! This is a great shot of a BIG YAWN! This is Mia receiving her 11am feeding. They put the breast milk in the syringe and let gravity do the work. Mom wanted to put something in the picture that would give some perspective of how tiny Mia is. This is the tape measurer they use to measure her girth (her tummy).

It's this time of year too......

May the feeding frenzy begin!! This is Annemarie last year at Thanksgiving...beyond the fact that she is doing her favorite thing (besides watching TV), I can't get over how big my girl is getting. She is turning into a terrific big sister. Annie has been practicing with her own baby dolls so she can take care of her sister when she comes home. Mia is doing well. She is up to 4 cc every two hours on her feedings and they will up it by 1 cc every 8 hours. So far, little to no aspirates (leftover milk in her tummy from her previous feeding). She has had very few spells, and the ones she does have are only when she needs to have her nose suctioned. Other than that, not much else to report, which is a good thing! We will be staying in Madison at the Ronald McDonald house on Wednesday night so we can see Mia early Thursday before heading back to Reedsburg for dinner. I will have to take some pictures of the Ronald McDonald House. It has been a blessing that this facility is available to us and all the other families with children in the hospital. I have to admit that I have never paid much attention to those little boxes at the McDonald's drive-thru. But, now that we are on the other end of that box, I put all my change (and a few dollars) in that little box! They not only provide very nice rooms, but a full stocked kitchen so we wouldn't have to pay for a meal. Groups come in and make dinner and they will make a sack lunch to take to the hospital if we need. There are laundry facilities (with detergent, etc. provided), a play room, library, game room and 2 tv rooms. They ask for only $10 per night and if a family cannot afford that, they have groups that pay it for them. In talking to the manager, there are families that stay there for months or even years and that $10 a night really adds up! Like I said, it has been such a bleesing to us when we've needed to stay late or be in Madison early. I would like to ask that everyone continue to pray for our family, but also for the other little babies in the nursery with Mia. There are some who are not doing as well as Mia, and some who are doing better than Mia, but they and their families need our prayers. I don't know all their stories (what with privacy standards in a hosptal, as much as I want to ask, I don't), but everyone needs the Lord.

Our Libby

This is Liberty (Libby)--she's our (my) baby. For the few of you that don't know her story, she came with our house. When we had our first walk-through, Libby met us at the door. And she was the first dog that Annemarie wasn't afraid of. The owners decided that they didn't want to take her with them and asked if we wanted to take her, so we said yes and now she's ours.... She is very cute (as you can see) and a mix of something, but I'm not sure what. She only barks when she has to go out and is one of the calmest dogs I've ever known. We love her...... And we hope Mia will love her, too! Mia is doing well, today. Yesterday and last night she kept everyone jumping. She kept having spells and wasn't tolerating her feedings at all. Her doctors decided to culture her for RSV (negative!!!) and check her white blood count (normal!). Finally, her nurse suctioned out a HUGE mucuos plug (i.e., booger). They also put her CPAP at a rate of 20 (the machine breathes 20 times per minute for her). And every since then, no spells and no feeding intolerance!! Today she is still dong great and her rate has been weaned to 10. I was able to hold her for about an hour--and I really had missed holding her! She is up to 2 cc/hour and so far so good! And she is 2 lbs 7 oz! She's a big girl!! Please continue to pray for her that she will stay on this track to getting better! 

It's that time of the year...

Although we have received a small amount of snow this year, this picture of Annemarie and Caitlyn is from last year. But, the change over of clothes is complete, snow boots and pants are in the coat closet waiting to go to school and the snow shovel is ready to be used....I do like the first snows--it's very peaceful to watch, but, honestly, around February, it's a little old.... I hate posting without pictures (it's probably really boring) so I've decided that on the days I don't have any new pics that I will post some of the pictures we took before I started blogging. Today was a little different-I stayed home. And I hated it. But, the van had to go into the shop for hail damage repair, laundry was calling, I organized Annie and Mia's rooms and today is Annie's parent-teacher conference. She has assured me that I will not find out anything surprising, but I 'll let you know! Mia is doing well. Monday she started feedings again, and then had to stop after just 3 feedings. She just wasn't tolerating it. So, they decided to give her a break. She also started having some spells, so they took an x-ray to be sure she wasn't having any problems from the NEC. We were really nervous that she was getting sick again. But, God answered our prayers and the x-ray was clear. It did show that her lungs were not as inflated as the doctor would like, so she was put back on nasal prongs (CPAP). So, Tuesday they held her feedings. But, I was able to hold her for about 2 hours, which was wonderful! Wednesday they started her back on feedings, but just one every 8 hours. Mia and I were able to kanagaroo again for about 2 hours-again very wonderful... And today, her doctor's increased her feedings to once every 2 hours and so far she is doing well. She is supposed to have a follow-up ultrasound on her kidneys to see if the anti-fungal medication cleared up the small amount of fungus in her kidneys. I'll post results when they come in. Thank you to God and to everyone for their prayers, we are so blessed with so many people who care and a God who answers prayers! 

Oh, and she loves her thumb, too!

OK, I had to add these. Occassionally, Mia will find her thumb and of course she looks too cute!

Our Singers...

This is Annie with her friends Caitlyn and Jesse at church yesterday morning. They sang a special A COPPELLA! They sounded terrific and we are very proud of them all! I know that I wouldn't get up and sing, let alone a coppella....Tonight we went to a program at the high school that was very good. A non-profit organization travels to different schools with animals and talks about the rainforest, recycling and energy conservation. Annie has her picture taken with Caitlyn, Camrym and a baby chimpanzee (Kari tried to take a picture with her digital and the guy told her she couldn't!). It was a Polaroid so I don't know if I can scan it....she also was able to touch a North American Alligator. It was a baby, but very intimidating anyway! She did fine, even when the handler turned and that alligator and Annie were face to face!

I Love My Binkie!

And I am fine with that! Mia's suckling reflex has recently become very active. She has sucked on her binkie for quite awhile now, but the last few days she will go to town on it! I think that is a sign of her feeling better and also looking towards starting to nurse in the next few weeks (maybe 3-4). The top picture (sorry it's so dark) is Mia yesterday and they bottom picture is Mia today with her purple binkie... she is back on a cannula and doing great. She was doing ok without the cannula but her nurse wanted her to do better than ok, which we agree with! Scott was able to kangaroo today for an hour and a half and I think that both daddy and Mia had a very nice nap!

YAH!!! for my Sister!!

My sister has posted an update on Mia on her blog (just click Cathy's Blog on the right-hand side of my blog). She has posted some pictures that she took while she was here, too. Feel free to check out Sis' blog for an update on our Miss Mia because now I AM GOING TO BED TO (hopefully) GET SOME SLEEP!!! :-) Thank you, Sis!

Well, we talked to the nurse a little while ago and we have MORE exciting news! Mia had her nasal prongs removed and in on a regular cannula! She is set at room air, which means she is not receiving any pressure or breaths from the vent! She is breathing on her own, COMPLETELY, and is doing very well! Her oxygen saturation is in the high 90's to 100%. She finished her last round of antibiotics and has been weaned off her pain medication. We talked to the doctor today and he said Mia is definitely out of the acute phase of her NEC but they still want to give her bowels 3-4 days more to rest before even looking at starting feedings again. But, she is just doing so well, that we'll take it! Thank you again. I wish there were better words to express the gratitiude we have for everything everyone has done....and to God for His blessings!

More Pictuers of Our Exciting Day

Yep, that's a little eye peeking out there!

 

Annie's Turn

Today has been a very exciting day! Mia is doing well enough that the nurse said we could kangaroo. But, Scott and I decided that it was Annie's turn to hold her sister! She had been asking and Mia is doing well enough to be out of her box for awhile. This is Annemarie waiting-she was her usual patient (?) self. But I actually didn't mind Annemarie being anxious about holding her sister. It was very exciting for all of us! First picture of our girls! Mia is getting her indoctrination early into a very important Wisconsin tradition-Wisconsin Badger clothing and accessories. The nurse made sure to put Mia in a Badger hat as the Badgers beat Iowa state today.

This is Mia yesterday, after she was extubated! YAH, no more ventilator! She has her nasal prongs in. They also started a new PICC line yesterday, which was good because the IV in her foot went bad. She still receives all her nutrition through her IV. She's doing so great-thanks to our awesome God for abundant blessings and to all those who have continued to pray for Mia and us! I want to thank Sarah for sending me this picture. It's from before Mia got sick, when she actually wore clothes! I think she will start to wear cothes again now that she's feeling better. It makes her look so big!

New Pictures!

These are some pictures I took of Mia yesterday. And of course, today she looks totally different! Today, she is not as swollen in her face and she doesn't have the IV in her head. Her doctors are slowly weaning her off the ventilator--they reduce her rate and then her pressure and wait to see how she'll tolerate everything. So, far, she is doing very well. They are also weaning her off of her pain medication. They have decided to switch one of her antibiotics to a broader spectrum so that her yeast infection doesn't begin to colonize again. She had an eye exam yesterday (not sure why) and that was fine. Mia also received a new isolette today (she gets a new one once a week). So her nurse bundled her up and I got to hold her for about 30 minutes. It was so nice to hold her again! This is the best picture I could get of Mia trying to open her eyes. And of course, today, when I didn't bring in my camera, she was awake and alert for about 20 minutes. I need to bring my camera in everytime, just in case...... Poor honey, she looks like a unicorn with that IV in her head........ 

I think I'm running out of titles....

First, let me offer my disclaimer that I am tired and I hope this makes sense. If not, leave me a comment with any questions that may be needed for clarification.... :-) Well, it's been a few days since I posted and what a few days it has been! Mia is sick. I talked with Mia's nurse Saturday at 1pm and she said she thought that Mia was coming down with something because she just wasn't right. (Mia has the same group of nurses pretty much all the time so they get to know her very well!) They did a blood culture because at first they thought she was getting a bacterial infection. So, they started her on 3 different types of antibiotics and stopped her feedings (which she had not been tolerating very well since Friday.). We checked back in with them at 6pm and then again before we went to bed that night and she was pretty stable. But, the doctor called at 2:30am Sunday morning to tell us that Mia had vomited blood and that she had blood in her OG tube (the tube that goes down to her stomach). They suctioned her out, took an x-ray and decided to intubate her (so she now has a breathing tube in her mouth and the ventialtor is breathing for her). They said she was pretty stable at that point and would call if anything else happened. Scott and I debated what to do and decided to let Annie (and my mom) sleep and call in a few hours. We called at 7am and the doctor told us that after looking at her x-ray and her labs and all that she has Necrotizing Enterocolitis (NEC). It means she has an infection in her intestines that can cause the intestinal tissue to die. He also said that she had had some lab work done at 2am and had still not stopped bleeding from the heel stick. They had given her plasma (the clotting agent in blood) at 4am and were about to give her another round of plasma because she still was oozing from her heel stick. He told us that he was extremely concerned about Mia and that Scott and I needed to come down. We all got ready, took Annie to my mom's and Scott and I headed down. Needless to say, it was a very stressful drive.... They decided to start Mia on pain medication, put in a larger OG tube (to suction any fluid and allow air to escape), and watch her (her clotting factors were finally normal, also). She did well (considering) but didn't quite settle down and her heartrate would not come down below the 180's. She seemed to be uncomfortable and the doctor said they would increase her pain medication as needed. Monday morning she was OK, but her platelets were low so she had another blood transfusion. Unfortunately, her PDA (the hole in her heart) reopened due to the stress of her being so sick (the doctors had mentioned this possibility to us last week). They are not overly concerned at this point because they cannot treat it with medication or surgery right now. They will revisit treatment after Mia is over her NEC. She did not tolerate her cares (when they change her diaper, take her temp, etc...) AT ALL. She would have severe spells and would need to have her oxygen raised to get her back on track. But, she didn't get any worse....Today, she continues to stabilize and her heart rate is finally back into the 150's-160's, where it should be. This morning, she still was not tolerating her cares, or anything else they tried to do, but tonight, she is much better. The nurse said she was able to do her cares this evening without any extra oxygen. So, she's OK....the doctor's said that as long as she continues on this road, and eventually starts to improve, she should be fine. Our prayer is that her infection does not cause a perforation in her intestines. This would require surgery to repair the perforation and clean the digestive material that would spill into her abdomen. However, the surgeon and Mia's doctors have said that, at this point, they would not feel comfortable taking Mia to surgery because she is still so unstabile--she would probably not survive the surgery. But, everyday that passes is one day closer to her getting better without any perforation. The hope is that the antibiotics were started soon enough to kill any infection before it had a chance to take hold. Please continue to pray for Mia. She is so strong and I know that God made her that way because He knew what she would have to do. He's holding her in His hands and I thank Him for that. And I continue to thank Him for giving us everyone who has continued to pray and support us.....

All's Well...

Mia was just too hot in her bed. The nurse turned the humidity in her "box" (her isolette) down to 60% and her temperature went down within an hour or so. And she did poop, but she had to have "help" again.... She is still having some problems digesting her feedings and they have stretched out the time in between to 3 hours, hoping that with a little extra time she can continue to increase the amount of feedings soon. She did lose a little weight last night, but that's expected to be up, down, up down. She is still on an upward trend and that is the important thing. I was able to kangaroo yesterday for an hour and a half and then Scott was able to kangaroo last night for an hour and a half also. Mia did very well and only got a little cold with Scott. The nurse brought over a heat lamp (just like the kind the fries sit under at McDonald's!). Well, for those of you who know my husband, it wasn't long before he heated up and that made Mia's temperature jump right back up! But, I don't think Scott cared that he was being cooked...it was worth it!

Update Time...

Sorry, it's been a couple of days since I last updated the blog on Miss Mia. Hopefully, I can remember everything. She had her eye exam on Wednesday afternoon and that showed no yeast on her retinas! She also had her spinal tap which showed good levels of glucose and protein, no red blood cells (which can be a sign of bleeding in her brain) but it did show white blood cells, which means her infection is in her spinal fluid and brain. Her docotrs decided to increase her dose of the anti-fungal medication, which she has been tolerating very well. And the big news is that the medication used to close the hole in her heart worked! No more hole! Thank you to all who have been praying and to God for answering our prayers! Her kidney's did very well; her output was less, but not so much that her doctor's were overly concerned. Her tummy is a little smaller (at least it's not any bigger) and has remained very soft. But, well, she needs to poop. Sorry, but just like with any baby, ALL bodily functions are important :-) They've also lowered her rate and pressure on her ventilator some more and she is at 21% oxygen (room air). She hasn't had any spells and is doing very well from that standpoint. Her blood culture from Sunday did show a positive result from the yeast yesterday. But, it took 4 days to grow out the yeast this time and the initial blood culture grew out in less than 24 hours. So, the medication is working to at least lessen the yeast in her system. They have removed her central IV line and replaced it with a peripheral line in her foot (which they had to do twice because feisty Mia pulled out the first one! She has been feeling better!) to try to cutdown the colonization of the yeast. An infectious disease doctor is consulting on Mia today. It is apparently very rare for a little one like Mia to contract a fungal infection and the neonatologists want him to come in and discuss the course of her treatment, long term affects of a fungal infection and the medication and that sort of thing. I will have to take notes, because I have been forgetting things! I just called the hospital a few minutes ago to see how her night went, and she had a little bit of a rough time. She didn't digest two whole feedings and a half of another one. She is also now running a temperature (100.8), but her tummy is still soft and not any bigger. The nurse said they were going to look at whether she is getting too hot in her isolette or if she just REALLY needs to poop, or.... I am going to head down early to get there for rounds so I can badger the doctors for info.... I'll let everyone know as soon as I can. Thank you AGAIN for all the love and support. We serve an awesome God who is faithful and has truly blessed us abundantly with friends and family who pray for us constantly. The outpouring of love and support has been so overwhelming and uplifting. We just couldn't say thank you enough! And I know I don't even have to ask, but please continue to pray for Mia and Annie and Scott and I.

Halloween in Wisconsin!

And it was cold again! You'll notice the turtleneck, sensible cold-weather shoes and you can barely see the sweats under Annie's very pretty Sleeping Beauty costume. She also had to wear her winter coat, but I think she's used to that! before we left to go trick-or-treating, Annemarie did get to pass out candy to our "customers", as she called them. I explained that they were trick-or-treaters, just like her, but she preferred to call them her customers and pretend that they were coming to her store. So, I dropped it and let her do her thing..... We went trick-or-treating with Caitlyn and Camryn (and Sonny and Kari) again this year. We had a very good time, even though it was about 33 degrees when we headed out. The girls all got PLENTY of candy, which we dipped into when we made our last stop at Uncle Scott and Aunt Liz's!