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Mommy and Jack


Smiles!!!!

Jack's New Home

I'm sitting at Children's Hospital, Jack's new home until he gets better and comes home with us for good! He was transported yesterday morning from University Hospital, and everything went very smoothly. We are being quite spoiled at Children's. Jack has a private room, with a bathroom, TV, Internet hook-up, and even a pull out sofa chair. So far we've become very comfortable with all of the staff and we're happy to be settled and looking forward to some positive news soon. Jack's OR scope is scheduled for Friday, and that is where we will most likely get our answers about what is going on with the poor guy's air way. He was able to extubate himself last Sunday...which was terrible and unfortunately the same outcome as when he was extubated intentionally the weekend prior. For now we don't have anything much to do until Friday. Just continue keeping him as calm and resting as possible, which is tough because he is big and strong. He last weighed 7lbs 15oz and all of that is muscle!

Jack in his new bed


His big feet hanging out of his snug bed


Peacefully sleeping


Maggie is getting spoiled again today, and this time AT Grandpa and Grandma's house! Our cable is out for some reason, so I offered to pack her up and take her to them.

Here she is napping.


She is continuing to do well. Yesterday morning I got up with her at 4am for her feed, showered and dressed and Brian dropped me off at the hospital on his way into work. I was with Jack until 10:30pm last night. I missed my little Maggie, but I was happy to be with Jack all day and make sure he got settled in comfortably. Splitting my time between these two in different places has been quite a challenge! When I got home last night Maggie was fortunately sleeping, so Brian and I crashed. Unfortunately she woke up at 12:30am, and I broke my "no babies in bed" rule. I had to sleep! She and I slept through her 1am feed, and then she woke up at 4am. After her 7am feed she and I slept on the couch and after her 10am feed I finally had to drag myself up and got going. I'm tired...but luckily I can "rest" in Jack's room. He is still sleeping, when he wakes up we'll get some good cuddle time in.

Nursery & Family Room takeover

I finally remembered to take pictures of the "finished" nursery. All I'd like to do is decorate, like hang a couple of shelves for their "knick-knacks", pictures and other fun stuff. Otherwise the nursery is functional and organized...which is most important to us.

Cribs- Jack's is currently holding blankets until we get the shelf in the closet up


Glider where all the nighttime fun happens


Bookcase and changing table


Closet where we creatively stuck the dresser- eventually there will be a shelf and bar for clothes


The family room is officially the second nursery. Just wait until Jack gets home and we have another swing and bouncer!

Doctor visits and updates

As I type this I have Maggie literally curled up on my chest and I can't believe I'm actually able to type. So here is what is new with miss Maggie. Tuesday she had her 2 month well baby visit. She weighed 6lbs 13oz and was 18 3/4 inches long. The doctor said she looked well and we will return for a 3 month visit. Later the same day she went to Children's Hospital for a visit with their high risk department. It was really nice because the doctor we saw was one of the same doctor's we had seen previously at University Hospital. We discussed all sorts of things and they looked over Maggie. Her weight gain is good, but not great. Nothing to be concerned about at this time, but they want her to get her weight checked weekly with the pediatrician and they will see her again in a month. I discussed with the doctor Maggie's recent feeding troubles. She starts off sucking her bottle good and takes about half of her feed, but then she gets really agitated and arches away and starts to cry. I've tried burping her, calming her, stopping her, and she'll go back to the bottle, suck just a bit and get mad all over again. It's been a battle for about 2 weeks now and she's also decreased her intake by about 15ml. So the doctor's think that she might be having reflux issues and she's starting Prevacid. I'm also going to try giving her a medium flow nipple to see if maybe she is working too hard and not getting enough milk and sucking air...we will see. I've realized since bringing her home...some things are trial and error. We haven't established any sort of routine at home. She feeds every 3 hours, which is easy at night because she wakes for them, but during the day she often has to be woken up for them. She's gone 4 hours over night a couple of times, but nothing consistent, and the doctors want me to keep her on a 3 hour schedule until her weight gain improves. So it will be a while before she is sleeping through the night. Once Jack gets home, we'll probably develop a more defined routine, but for now she kind of runs the show. It certainly isn't how I thought it was going to be, but things rarely are that way.

As for Jack. I have been able to spend a good portion of my morning/afternoons with Jack thanks to Grandpa Jeff! He watches Maggie and I visit with Jack, and it's been super helpful. I hate having to split my time like this, but soon...soon they'll both be home and I'll be begging for extra hands again. Jack is pretty much the same. They tried to extubate this past weekend, and it failed. He simply couldn't breath well. So now the plan is that his antibiotics will end Friday, Saturday and Sunday he will be given steroids and hopefully Monday his extubation will go well. The steroids are to help reduce any swelling that may be blocking his airway and causing trouble with his breathing. This time around, Jack is going to Children's Hospital and he will be admitted and seen by ENT. The thought at this point is that Jack should remain at Children's because they are more experienced and equipped to handle his condition. University is a great hospital, but their NICU is designed for preemies, Jack is still a clinical preemie but he is in need of specialized care and that is what Children's is good at handling. So...we are pushing for his transfer to Children's to be permanent and we will see. I'm excited for Monday, I've been looking forward to it all week. I'm hoping that we can finally move forward. The best case would be that Jack extubates with no trouble, but even if that isn't the case, at least ENT can look at him immediately and hopefully identify what his airway blockage issues are, and we can move onto a resolution. My little man needs to come off the ventilator. The most awesome moment of my week...holding Jack! Brian held him Monday afternoon and I've been able to hold him every day since. I love it and he really calms down when he gets into my arms.

The only other news with us is that we went to the dentist the past couple of weeks and I lost the cavity game. :( I had a small cavity and Brian didn't have any. I got it filled this morning, no biggy. I guess I can't complain too much, 27 years old and only 2 cavities in my life.

I started this post with Maggie on my chest, and half way through I transitioned her into her boppy. It's cute because she is too small to use the boppy the official propped up way, so she is using it more like a donut. Brian is getting our dinner ready as I finish this up. Better eat while the baby is sleeping soundly. The past couple of nights Grandma Charlotte and Aunt Lisa have brought us over dinner, which has been extremely awesome of them! We are lucky to have such great support!

Maggie playing on her mat before getting dressed



Her new bouncer and using the big girl Nuk pacifier


Maggie while Mommy types about her and Jack

Anger & Guilt

I wish there was something, anything, I could do to make this all end. Jack was extubated this afternoon, and then 2 hours later they had to intubate him again. He has something blocking his airway making it difficult for him to breath. His stats remained stable in the beginning, and they watched him very closely. But his breathing was labored, he had strider (squeaky sound air-way, caused by some kind of blockage) and after he had one bradychardia, they decided he needed to be back on the ventilator. Breaks my heart! He is feeling much better, and not fighting the tube as much anymore, but it is still uncomfortable and there is nothing I can do. A new attending starts her rotation tomorrow, so we'll get the new course of action from her, and hopefully have some good news soon. It seems the best thing to move onto at this point is having Jack reviewed by a ENT (ear nose throat) specialist from Children's to hopefully determine the cause of his breathing difficulty and come up with a solution. The only solution we've been given at this point is time. I hate that word!

I've tried to keep myself positive in these posts. I've tried to remember where we started and how far we've come. We've always been fortunate that the babies didn't deliver at 26 weeks, that they didn't have any major health issues at birth and that they continued to be healthy for most of their NICU time. But then Maggie got sick, and if that wasn't enough, now Jack. Some days, like today, all I have left is anger and guilt. I hate that feeling! I know there isn't anyone or anything I can blame. I can't be with my babies at the same time. I know it can't be helped, and I try to remind myself of that. But it remains.

Tomorrow is a new day, a new week, a new attending and hopefully a new start and solution to help my little boy come home to us. I'm going to try and wake up with a new mind set too. I'm going to try and let the anger and guilt go again...and return to positive thinking. I have so much to be thankful for.

2 Months Old!!

The babies are 2 months old! So much has changed in just this last month of their lives.

Maggie 2 Months Old


Jack 2 Months Old


Jack is continuing to do better it seems with each day. He is still on the ventilator, but there is great hope they will be able to extubate tomorrow. I really hope so! The poor guy is so agitated and there is simply nothing I can do to comfort him. Every 4 hours the nurse has to torture him with care, and things will be so much nicer for him without the tube down his throat. He is reacting well to the antibiotics and although he has to get another blood transfusion today, he is definitely stronger and really showing improvement with his secretions. His body weight has decreased significantly as well, it was amazing a couple of days ago he weighed 8lbs 6oz! Last night he was down to 7lbs 14oz. So he is getting closer to his true weight and looking much better. Through it all though, the little guy still cracks us a nice smile when we are with him.

Mommy with Jack


Maggie had an eventful week. Tuesday she went to the ophthalmologist for a follow-up eye exam. She was fantastic throughout the entire trip. Grandma Jeff went with us, to help should we have monitor issues, and it was a good field trip experience. The past couple of nights have been rough with little miss firecracker. She's been gassy and I think her tummy hurts, which equates to some fun screaming fits that have left us quite frazzled. Right now she is sleeping peacefully and I'm hoping whatever was bothering her system has worked its way out. I'd like to see her enjoy her swing again. We've been doing tummy time- otherwise known as torture time. Sometimes she is OK with it, other times she completely loses it.

Not really much else new. Just wanted to get an update out, and I finally have some pictures and even video to post...

Ceiling fans

I'd forgotten that my nephew Devan loved ceiling fans until this morning...Maggie apparently loves them too. She stared up at it throughout her bottles this morning and while she played on her mat and was changed. She's mesmerized. She also loves anything that moves her; the swing, car seat, stroller and car rides. She's been doing great at home, and I'm starting to get used to waking up with her in the middle of the night. She is a firecracker when she gets mad and a smiley little gal when she is happy.

Jack is pretty much the same. They tried to extubate on Monday, and it didn't work out. The minute the tube was out the respiratory therapist knew it would have to go right back in. He has too much swelling and secretion blockage that he just can't breath on his own. The poor guy hates it and I can tell how agitated it makes him. He has been trying to pull and push the tube out, so they've started sedating him to keep him calm. When I am with him I feel like I make him wake up and then become frustrated all over again...breaks my heart to see him this way! So the plan now: they are running more tests, he is on an antibiotic until the tests come back and he just needs time. They are still suctioning quite a lot of secretions and though it is under control, he is still showing some edema. Fortunately he is back on his normal feeds (through a nasal tube) and he tolerates it really well. The doctor thinks they may try to extubate Friday, depending on how the week goes. There isn't any way of knowing whether he'll be able to breath until they take the tube out. Hopefully this time works.

Maggie and I have been hunkering down in the house during the day, then when Brian gets home from work his parents come and stay with Maggie while we visit Jack. I miss not seeing my little man during the day, but with him being on the ventilator and being so upset when he is awake, I think it really is best for him to get as much rest as he can and there isn't much I can do when I'm there. I can't hold him...I hate it!

OK- so things are OK for now. Maggie is doing great, Jack is better than before and I really just hope we are completely heading back up hill now. I don't know that I can handle another set back.

The Kitty has Claws

Maggie is home, and as animated and feisty as ever! She needs her little nails cut, but I haven't had the guts to do it just yet. When she gets mad, she grabs onto me and has scratched me pretty good. I can't believe how strong a little 6 pound Peabody can be! It took me a couple of nights to get into a better "routine" of changing, feeding and putting her back to sleep. Thursday and Friday nights were rough. We played the pacifier retrieval game most of the night and I was exhausted all day yesterday. Last night (Saturday) was much better and I am actually not a walking zombie today. She is currently napping in her swing and I've been able to get some different chores done around the house...LOVE the swing!

Friday afternoon a nurse came to the house and checked in on us and Maggie. She did a full physical assessment and said Maggie looked great. She talked to us about her continuing development and we hope to see her again each month for Maggie and Jack's RSV shots. She was really nice. Saturday morning Maggie saw the pediatrician. He reassured us she looks great and we go back for her "normal" 2-month check-up in a couple of weeks. Since we were already there and she's just about 2 months, she was given her 2-month vaccines. She took the oral one very well, and she cried after her shots in each thigh, but once I picked her up, she was fine. She was a bit fussy yesterday afternoon and evening, I'm thinking perhaps she was sore from the shots. We got her some baby Tylenol, but never ended up giving it to her. She is a happy baby again today! :)

Onto Jack. He is doing much better! He has become a lot more alert, and has been fighting with his tube. He was pretty agitated yesterday, but the lucky guy did great over night and he will be extubated today! I can't wait because I'll get to hold my little man and I think that will make both of us feel so much better. The plan is to put him on a room air with 6 liter pressure nasal cannula. Then as he continues to do well, they'll wean him down and hopefully he won't need the oxygen long at all. He is still quite puffy and has continued to need suction for secretions every 30-45 minutes. They are going to give him another round of Lasex to help with the edema and help with the rest of the fluid, and removing the tube will hopefully help as well. He is definitely on the mend, and just like Maggie we still don't (and probably won't ever) know what virus he got. Hopefully now they can both stay healthy, at least through RSV season. Maggie is confined to the house and once Jack comes home, the three of us are going to hibernate at home through the winter. We really can't risk these little ones getting sick again!

Brian and I are doing better. Traveling back and forth to the NICU with Maggie home is rough, but we are extremely lucky that Grandma and Grandpa Keller are able to come and be with Maggie. The week ended pretty hard on us, but we are extremely happy with how Jack is pulling through, and we are of course loving having little Maggie home. Soon Jack will be joining his big sister and the real fun will begin! :)

Spoke too soon

Man, our little family can't get a break. Or at least that is how I feel. 5:30am Wednesday morning we were awaken by a call from the NICU. Around 4am Jack started having some A&B's (Apnea and Bradycardia), and was continuing to have trouble breathing and keeping his heart rate up. They called to let us know that they were starting to run tests and were continuing to assist in his breathing. He wasn't critical, but not stable either. When we got to the hospital they had just finished intubating him and had him stabilized and more comfortable with a morphine/versed combination. And now we wait. It appears that Jack has come down with the same thing as Maggie, though we don't know that for sure.

Going back to when Maggie was sick, which I realize I didn't update a lot about. Maggie presented with the obvious trouble of breathing, in addition to a strange rash, trouble holding her temperature and discomfort when moved. All of the tests the doctors ran came back negative, so we really don't know what made her sick, but the consensus seems to move toward Viral Meningitis. Now Jack's symptoms are pretty much the same. I haven't seen the same rash that Maggie had, but we don't know what stage he is in compared to when Maggie got to the hospital. We're fortunate Jack was still in the hospital, unlike Maggie. Maggie was initially in an isolation room, and we really tried to get them to keep her there until discharge, but the doctors were so confident that Maggie couldn't get anyone else sick and they moved her. Now my little boy is sick. Needless to say, we have a range of emotions here.

Moving to this morning, when we called Jack was still the same. They ran his blood gas at 4am and it was high so they increased his pressure and decreased his 02 level. He hasn't needed any sedation, and has been alert for small periods of time. When we last saw him Wednesday night he was looking around and had focused his eyes on us for a little part of the night. Because he is intubated I can't hold him, but I can touch him and comfort him, which I hope helps. So now we just have to wait and see what the tests show. They are running everything they can, including a lumbar. So far the flu and RSV tests have come back negative, which is good because it rules out airborne.

As for Maggie, she is coming home today. It is crazy to me that Maggie came home, went back to the hospital quite sick and is now coming home again...all before Jack! We've tried to be very positive and we know Jack is going to be OK, he will pull through this just like Maggie and be home before we know it. But it's getting hard. Really hard. It has to get better from this point, right?

Soooo much better!

The babies are both doing great. They are taking their bottles wonderfully, Jack is actually taking more bottles than Maggie, but she'll be caught up in no time. I hope to hear good news tomorrow as to their coming home. And now tons of pictures to share!

Maggie



Jack



Going back in time...

Tiny little girl in her car seat when we first came home


First bath at home


First ride in her swing, which she loved

There will be better days ahead

The babies are both doing well. Maggie started bottle feeding today. Her first bottle was with the occupational therapist, and she did very well. She probably could have finished the bottle, but she got pretty tired and all the color drained from her...so she was stopped and the rest went in her tube. At 9pm though, she downed her entire bottle with no trouble. She is looking better, but still a little puffy and her eyes are pretty red. I think she is starting to feel better, yet when she isn't feeling well man she gets upset. Twice I had to simply hold her close to me and just let her scream it out. She's been taking baby Tylenol to try and take the edge off, which I think helps. The consensus between doctors and nurses seems to be that she had/has viral meningitis. All of her symptoms lead towards that, and although we can't get a 100% test to confirm it, there isn't a treatment either. She is on the mend though, and that is what is more important.

Jack is doing great! He is healthy and still taking the bottle like a champ. He gets tired about half way through most of the time, but that is perfectly normal and we aren't pushing him more than what he wants to take. He didn't puke today...possibly because I went slow and stopped his bottle when he seemed to be tiring. He is still animated and he does this really funny growling thing when he is hungry. I think he thinks he is a tiger! I'll have to see if I can get it on video and post it.

Turning a corner

Maggie is doing much better. She had her breathing tube removed early Wednesday morning and is breathing well on her own, with only 20% O2. She is a lot more awake and alert. It's amazing how even 10 hours can make such a difference. When we saw her Wednesday morning/afternoon she was still quite swollen (from IV fluids and lack of moving around), still quite uncomfortable when moved and whimpering. I was able to hold her and she got comfortable and settled into a good nap. When we returned that evening, her swelling had gone down a lot, but she had a strange rash. While I was holding her I noticed she was having some apnea episodes. So not much new, but she looks and sounds so much better! We even got some smiles from her yesterday which was great.

Jack has decided to make it a lot easier on mommy and daddy! 1:30 Wednesday morning he took 47ml of his 50ml bottle! Then at 10:30am and 1:30pm he took all of his bottle! At 7:30 he took 35ml of his new 45ml recipe bottle. He is doing great! He didn't even have any reflux or breathing issues during his feeds. He has been really active the past couple of days, crawling all over me and even learning how to pull on my shirt or hair. He seems to like to do push ups on my chest, so I'm looking forward to getting him home for tummy time. For now our next goal is to get him to 100% bottle feeding, and then we'll move to feeding quantity on demand. Really, just one step at a time though and we're not going to push him.

Brian and I are doing OK. This has taken quite it's toll on us, but we are hanging in there. Again, thank you to everyone for your support!

Where to begin?

Maggie came home Friday evening. She was great Saturday. We went to the pediatrician and she spent some quality time with her grandma and grandpa while we visited Jack. Sunday she was still doing well, but kind of fussy. Monday morning she was still fussy and we were starting to think she was having constipation issues. We talked to the pediatrician and gave her something to help her. Then that afternoon as I was getting out of the shower, Brian changed her and went to start giving her a bottle. Before even starting the bottle she stopped breathing and immediately went blue. Brian tried to pat her and wake her into breathing, but she wouldn't breath. He ran her to me and I tried, and still nothing. Brian started CPR and I called 911. Brian was able to get her back and breathing on her own, but her color still wasn't good. I'd never seen either her or Jack get as gray as she did...it scared us both beyond anything! The ambulance and EMT arrived and immediately we were rushed to Children's Hospital ER. She was looked over and eventually transported to University Hospital. When we got there she was still not breathing well on her own. She was having apnea episodes where should would stop breathing for about 10-15 seconds. The doctor decided to intubate her and they ran every possible test they could come up with. Monday evening she was still under sedation from morphine, but her color was back and she was finally resting. She was having bad blood gas results over night, so although she was breathing with the same amount of oxygen as we do (20%) she was still needing the intubation for the pressure to assist her in breathing. Today Maggie is doing so much better. Her blood gas results are great now, and they are starting to wean her to hopefully get her extubated tomorrow. All of her test results have come back negative, which is a good thing...although it still means we don't know what is wrong with her. She is looking a lot better, even with her extreme edema from the fluid intake. She was awake when we saw her this evening, and she is able to comfortably and peacefully sleep. Hopefully she continues to do well and for now we're just in a wait and see period.

Meanwhile, Jack pretty much remains the same. He has been doing a bit better with his feeding, he gets 50ml and this past feeding with me he took 27ml...which is the best he has ever done! Not too much new with him, just hoping he continues to progress with his feeding and has good weight gain. Lucky Brian and I watched him start gagging when we were getting ready to head out tonight, so I picked him up to help him in case he was having trouble breathing. Well...he puked up all over us! It was pretty gross, but it seemed to relieve him. He is such a sweet cuddle bear!

Brian and I really appreciate all the thoughts and support from everyone. Wilma is back with Aunt Lisa, which is extremely helpful. We also got a great care package from the Korzeps and Knapiks tonight, a big cooler of different pints of Graeter's ice cream. We really appreciate all the wonderful friends and family we are lucky to have in our lives!