Photo op

Last week of May 2009 - babies

These are photos from the last week or so. There are quite a few - we've had a bit of fun recording all of the new faces they are making and new things we get to do.

Mary Louise put on 34 grams today! Yay! We weren't able to find out David's weight gain. His values for blood and platelets had dropped just a tad. He needed a transfusion of each and his IV started leaking when we walked in so it was quite busy around his little area. We got to visit it for a moment, say our "I love you's" and hold his hand. He looked good today as well. Both of their cultures have remained negative so far so that's good news.

Their regular doctor will be back tomorrow.
Enjoy the photos.

over the weekend

The babies' main doctor is off for the weekend and their other one is on. He tends not to call if there is nothing really really significant to discuss with us so I won't have a great update until Monday. Well, hopefully not until Monday as it would sort of take something bad to happen for him to call tonight or tomorrow.

Both kiddos look good today. I must say, Mary Louise seems to really enjoy the kangaroo care we've been doing. She maintains her temperature and oxygen saturation beautifully during the cuddling. We continue to look forward to doing the same for David. Mary Louise had 2 apneic and bradycardic episodes today as of the time we visited. This was a decrease in episodes as compared to yesterday. She lost 30 grams today - a frustrating number but we're continuing to hope she gains soon. Brent jokes that he'll make it a point to never again ask her to gain weight if she'd just put it on now! She had gained a bit yesterday but with today's loss, her gain is minimal so far.

David put on 60 grams today. Quite a high number - so much so that we all tend to wonder the fluid / real weight gain ratio. Ha - we want weight gain but not too much. We want wee and poop but just the right amount. I know, it must be so darn particular - it's exhausting. He has been weaned a bit from his vent. They are going very slowly with it all though. His history of being hypersensative to changes in his care is considered at all times.

Really, overall they are continuing to do well. They just need to grow a bit before the next big hurdles come into play.

I'll post some photos tomorrow I think. After Mary Louise's awful hat made the album last time, both grandmothers came to the rescue. Meamo (my mom) found some tiny preemie hats at a little shop here which I quickly had monogramed and brought over and Ma Mere is hard at work knitting another set for us (she really is a master at that knitting stuff - I wish I could claim such talent!). Oh those little ones are spoiled already! No more ugly pink hats for Mary Louise!

Hope everyone is enjoying their weekend!

Love,
Heather

P.S. The news of the day is that Brent bravely went where he has not gone before...he changed his first diaper!! Mary Louise finally got rid of most of her tubes so he wasn't so fearful of getting tangled. It does take some finesse to work through the tiny hand holes and then get through the maze of wires all to clean her tiny tush. He did a fantastic job and looked so proud while getting to do his fatherly duties. She didn't even fuss. (the event will be included in the photos I need to download tomorrow) Way to go proud papa!

a new day

The doctor phoned a bit ago and said that David has been started on antibiotics for a possible infection. He still has all of his IV lines in and in use, leaving him incredibly susceptible to such horrors. The doctor however, questioned the positive results of his sputum test as it took an awfully long time to grow and thinks it may be a contaminant. The solution: repeat the tests and start antibiotics immediately. With patients so small and so fragile, we cannot afford to take the chance that he may in fact have an infection brewing. Forever careful, I feel that I will be forever overprotective.

Mary Louise is doing well overall (I'll bet you love to hear the overall part - if you've been reading, it always implies a glitch in progress - ha). She is continuing to gain minimal weight and although the doctor hasn't said it aloud yet, there is a hint of consideration for re-tubing her. He is starting her on anti-reflux drugs today. They put all feedings on a pump over 30 minutes to try to help with her digestion. The doctor spoke of "trying to maximize available medications before taking further action" - not so comforting, but I can't dwell on those things that haven't happened yet. They are doing blood cultures again on her as she has had an increase in apneic and bradycardic episodes (she stops breathing and her heart rate drops). Any little change like this - and the fact that her platelets once again have shown a drop - can be a sign of infection. He reminded me that just because she is free from IV lines, it does not imply that she is free from risk or actual infection. Her risk is simply reduced. Again - I promise that I am an overprotective mother in the making.

I am always so keenly aware of how lucky we are to have each moment with our babies. I spoke with a hospital employee last night who pointed out how well the babies are doing - especially for their untimely births. I realize that our little ones are not the norm by any means - which may be a part of why I'm so vigilant in monitoring their progress (I say vigilant, some say obsessive - tomato, "tomoto" is my response). Crazy about germs and who puts what in their incubator or touches them? absolutely! Have you counted how many times the word infection comes up in these blogs? Why on earth would I not pitch a fit if they have any more exposure than absolutely necessary?

I've been doing alot of reflection lately on what's happened over the last 2 months or so. I've decided that as horrific as it's been, I would go through all of it again in a heartbeat. (it may seem silly, but this was a huge decision for me to make - and a resolution I really needed) I know it must sound a bit self-punishing, but as I continue to hold every tearful, heartwrenching moment with my Kuylen so close to my heart and mind, there is not a part of me that would not be willing to endure it again, just the same. (of course I would want just 5 more minutes with my little angel, then 5 more and so on - c'mon - I'm human!)

Each time I walk in the NICU I am happy that I have a place to visit my little ones - a place filled with people who care about our children and want them to do well and excel - a place dedicated to their well-being. We were never supposed to meet our little jelly bean Kuylen - we got 5 WHOLE DAYS!! That in itself is such a miracle. Mary Louise was given a 50/50 chance and she sits breathing on her own - determined to survive and prosper in life. David - our sweet grumpy little guy - was given less than a 50/50 chance and each day continues to surprise his caretakers with such heroic efforts. Every day they continue on, I learn something new about them and about myself. How resilient we are - what we as humans can endure - against all odds - how our hearts and minds can open and support one another - random strangers can become one's biggest comfort. People are truly amazing - and we certainly have much to learn. In short, given the same outcome, I would endure all of this, every second, over again - without hesitation - for my little Kuylen, Mary Louise and David. To be in their presence and to be their mother is such an honor.

I think back to my life before all of this - not long ago but seems like years to me now. I loved that life - loved my job, my marriage, (my dogs and cat- ha), all our immediate and extended families. I was not desperate for children. I had actually almost accepted that we may not have them at all (after 2 years of trying). That was ok with me - ha - we could have a life of "grown-up vacations" and save and retire as early as possible! Then - the pregnancy began and we really were so excited.

My life now I love just as much if not more - or maybe it's just in a different way. Even with all that has happened and continues to develop - I consider myself honestly one of the luckiest people I know. Who gets these chances? These experiences? Only a blessed few I'd say. I wouldn't have it any other way. (well, correction - I really could've done without the mastitis and the rash - really those are and were a bit over the top...)

ha - back on track a bit today - love, Heather

a pity party - if I may

The babies are doing well today - well they are the same really as yesterday. Mary Louise gained 5 grams (an ounce is a little more than 28 grams in comparison). She needs to gain at least a half ounce per day - preferably a full ounce but we'll start small right? I'm told that some babies don't gain for awhile and then start to put on weight all of a sudden - a growth spurt of sorts. Worst case scenario is for her to have to be reintubated because just breathing causes her to use lots of calories. We are NOT to that point though and are left hoping that she starts to really gain soon. She is now 2 pounds 5 ounces.

David also gained a bit. He is 2 pounds 2 ounces I think and catching up to his sister rather quickly. He looks good and his sputum culture has been negative thus far but he is continuing to desat with any stimulation. (well, he does it without stimulation too). We sit and talk quietly by his isolette. He seems to be rather used to mine and Brent's voices and sometimes falls asleep to them which is so sweet. He is making more faces now and opening his eyes more often - though he continues to sleep much more than our wide-eyed Mary Louise.

As for me, HA HA HAHAHA! That's all I have right now. I mean honestly, this whole pregnancy / post pregnancy complication thing is really getting old. All I can do is smile at my latest speical circumstance of pumping that I seem to have been blessed with. This is actually the second bout I've had. The first one was really minor and resolved in a day or so. It was about a week and a half ago. This one seems a bit worse. Anyhow, continuing to pump - and cringe while doing so. I can't say that it's even close to my favorite thing to do, but (aside from the "it's the best thing for my babies" line) it reminds me that I am now a mom - I still wake up in a daze many mornings and wonder if this is all really happening.

A forewarning...I need a bit of venting time and as this has become my journal of sorts, I'm writing it here - if you don't want to hear it, believe me, I'm not offended - I'm just warning you to stop here...

There is another tiny baby in Kuylen's incubator. Brent had a reaction the first day he (the baby is a boy) was there. True to my own form, I barely reacted then, only to have this long drawn out reaction over the following few days. So I've caught myself sub-consciously staring in that direction picturing my little Kuylen there trying so hard to hold on. Not a day, nor hour goes by that I don't think of him.

When I started having trouble and learned that he was not expected to make it, I hoped and prayed that the doctors were all wrong. They told me that I should be happy to have 2 babies left - as if I couldn't feel him kicking his tiny legs and rolling around with who turned out to be Mary Louise. When David started having placental insufficiency and cord problems, they said to be happy that I had one baby doing well. They reminded me that I'd started out only wanting one baby and had ended up pregnant with 3. I'm sure that was a rather sorry attempt to make me feel better. It actually made me feel guilty for being so greedy - as if I was being reprimanded for taking too many cookies from the cookie jar. (because you know it's every girl's dream to have triplets right?) I absolutely adore my darlings - our precious babies. I try to hold on to every second, each little eye opening or hand grabbing. I try to memorize everything about them and notice each change as they grow. However, not a moment passes that I don't want to be back in the hospital bed on bedrest - happily withering away while my babies - all 3 grow and mature in my belly - waiting a full 9 (ok- I'd settle for 7 or 8 even) months. I feel like I'm totally exposed - as if everyone (including me) is watching my pregnancy from the outside. All I want to do is protect them like I'm supposed to but all I can do is sit and watch while they try to do this on their own - with the help of the team of medical staff of course.

I've dealt with it all - and I've tried to laugh and smile the whole way (well almost the whole way). The sheer irony that all of my decisions about the one thing I had so many opinions and beliefs about (childbirth) were made for me is funny. But to be completely honest, I'm tired right now, this week I'm just tired and frustrated. I was so excited to be able to provide my babies with the one thing that could not be found or created or gotten from anywhere else. Now, I have mastitis and they are having to add all kinds of things to Mary Louise's milk to help her gain weight. How can the one thing that sould be so straightforward be so complicated?! Honestly! babies' only jobs are to create dirty diapers, breathe eat and GROW!!

I think my rant is over (then again, it may start all over again tomorrow)- I feel a bit better anyhow.

Please Mary Louise and David - have a darn fat day already - one that is NOT due to fluid retention at least!

Love to all - and thank you for the advice on this latest beast of pregnancy! (and of course, thanks for reading)

love, Heather

P.S. My older brother graduated from law school today - I'm so very excited and proud of him!

Heather New Friend

Heather had a new friend arrive today, MASTITIS! It hit her quickly and painfully. I got really worried when she was in pain and shivering like she had the flu. I set up her breast pump, and got her some warm compresses to make it easier for her to pump. She seems to be feeling a bit better, but still is in some pain. Just another challenge for Heather to have to face, she has had every issue a pregnant woman, and a mother of newborns could have.

The babies are doing okay, but both are not gaining any weight. Both actually lost a little weight since yesterday. Mary Louise is doing well overall, and they have increased her calories in an attempt to put weight on her. David is still on high vent settings, but the focus is to gain weight before weaning him from the vent. he has been a fussy little man the last 2 days by deSating every time we touch him. He looks good, and continues to impress.
Please remember that we have a long way to go before we are out of the woods. Both children suffer from Chronic Lung Disease which means they if they get a small cold or illness, it can turn into Bronchitis or pneumonia very quickly. Their is a possibility they will outgrow it around age 3 if they can stay healthy.

Thank you for all of your support and prayers!

Sincerely,
Brent

hip hip hooray for kangaroo care!

So today Mary Louise and I had some bonding time doing kangaroo care! It was so very neat. She was placed directly against my chest. I was told that I could hold her as long as her temperature didn't drop - it went up an entire degree! I was actually a bit concerned that she may be too hot. She is doing well - tolerating her feedings well and gained a tiny bit of weight today. It wasn't much, but it was something. She is having some trouble with bradycardia ( low heart rate) and apnea (not breathing) though. It comes in spells - many just after feedings. It is somewhat normal but she seems to have them a little too frequently so they are once again looking for any type of infection.

David looks great but they are searching for infection with him as well. His chest x-rays do not appear clear. This could be the fact that he was just intubated again, could be the damage from his chronic lung disease (that will make him much more susceptible to respiratory infections) or it could be a bacterial infection. They are taking a sputum culture to check for bacteria. Overall, the doctor is happy with his progress.

We're all still hanging in there. My mom (Meamo) came for a short visit to see them last night and today. As always, her visit was much appreciated and enjoyed.

Many many photos

Both babies are still doing well. David is on high settings on the vent right now but picking up breaths on his own once more. Mary Louise's last IV was pulled - and her last medication changed to an oral preparation. They also added microlipids to her formula to increase the caloric value as she'd lost a bit of weight this morning. I'm sure I'll be able to joke about these times one day with her - the amount of trouble she gave with gaining weight that is - she's beautiful (I realize I'm totally bias) long and slim. Hopefully, she'll put on some healthy weight soon though. One day at a time (as if it could come any other way). David really looks good overall. He is growing in length. They did have to increase his dose of diuretic as his urine output once again decreased. During the day today though, it picked up again so the increase dose seemed to work. These are the photos we've taken this week - so cute - there are alot of them though. Enjoy!

52009 to 52509

Good night to our little ones. May they sleep well, breathe easy (and productively) and grow grow grow.

not really a set back but...

David made it 22 hours without having a vent tube before his CO2 level got too high and he had to be reintubated. I must say that after trying my best to prepare for such news, I was very sad to see the tube and tape across his face once again. However, we are so very proud of our little one for making such incredible progress and are looking forward to seeing him give it another go in a week or so. In the meantime, have a rest little David, recoup, and enjoy your meals and weight gain. We are just so excited to have you doing so well. He lost 40 grams yesterday so I will be anxious to check his weight gain today to see if it is coming up. He is tolerating 7mls of breast milk well, and is on probiotics - as is Mary Louise- to help with digestion. Overall, he looks amazing and the staff is almost as excited as well are to see him doing so well.

Mary Louise is doing well too. She still has one IV in for her yeast prophylaxis to be given - so she isn't quite to the feeder/ grower role just yet. It will be such a big deal when they are both without lines as it will decrease their risk of infection exponentially. Those things are like a superhighway for bacteria to enter the bloodstream. (I've been told recently that I'm becoming a bit of a germaphobe. I think this is a debatable opinion but maintain that even if it is true, that the paranoia would be more than warranted with 2 micro-preemies who have both had infections already and are spending their first 4 months in the NICU. Anyhow, forgive me if I sound a bit over the top about germs.) I spoke with the nurse practitioner about the possibility of making that last medication oral rather than intravenous. She said she would speak with the doctor about it. At any rate, the prophylaxis will stop when she reaches a certain weight so that's good. (David is on the same -but has a ways to go before being able to gain enough weight to stop the med. In the meantime, it will hopefully keep the yeast at bay.) Mary Louise is not gaining weight as fast as the doctor would like just yet. She gains 30 grams one day and 10 the next. However, he is not ready to increase the calories anymore just yet. She is taking in 20mls per feeding with human milk fortifier and probiotics currently and doing well with it. They are increasing the feedings as her tiny size permits but may need to add more calories to the milk to help her with weight gain. I'm told that they have a few options to do this - adding a sugar type substance to the milk is the one easiest to remember though there are one or 2 others. We are still holding out hope that she picks up her gain very soon and as many additives as possible can be avoided.

I seem to have left our camera in the NICU so I'll have to get to the downloads this evening I think. We've had such a good visit with Amanda being here (a super-wonderful childhood friend of mine - more like a sister to me honestly). She got to peak at the little ones last night and I think really enjoyed the visit.

Must go and get ready for today's visit. Happy Memorial day and love to all.

Heather

Big Steps

Sorry about missing our blogging yesterday, but we didn't get home until about 11pm yesterday evening. We had visits from Heathers mother and oldest brother, and we didn't leave from visiting the babies until after 9. We then went to grab a bite to eat. So, the news is that the babies are both doing well. We have tried 3 times to get into the NICU today, but due to new admits we couldn't get in. The doctor just called a few minutes ago to give us an update. Mary Louise has had her IV and her PIC lines taken out, so she only has her feeding tube and nasal cannula. She is now classified as "Feeder and a Grower".
David was having issues with his breathing tube today so they took it out, and he seemed to be doing well enough that they were going to give him another 2 hours before they put his vent tube back in. But the fact that he could do well for a period of time is a great accomplishment for our little man.
Heather, her mother Karen, Damon (her oldest brother), and I participated in the March of Dimes "March for Babies" this morning, and had a nice 3 mile walk. Next year we will form a large team and have the babies with us. Women & children s hospital was the title sponsor and we got to see a lot of Heather's nurses and the babies nurses at the walk.
We are looking forward to a visit from Heather's good childhood friend Amanda tomorrow. We will update again later after we can get to see the babies.

continuing - on track

Both Mary Louise and David did very well today. Mary Louise is still hard at work with her breathing. What a big girl she is at just 2 pounds 4 ounces - showing that vent (and the doctor for that matter) who's boss! Her feedings have been increased once more to 20mls and we really hope she starts to gain weight again soon. Her medications are slowly being switched to PO (given by mouth) and she is working towards yet another goal - no IV lines! Oh her dopamine was discontinued as well. We heard her cry loud and clear today. It is just the most precious sound in the world to us and although we've been told differently, I can't imagine that I'll ever really get tired of hearing it. She makes the sweetest pouty faces and the corner of her mouth sometimes draws up and she looks like she's smiling.

The biggest news (for us anyhow) is that we got to hold her again - for a whole hour!! I will post photos later - maybe tomorrow? Brent and I are having a much needed date night complete with dinner and a movie so I must make this blog rather short. Anyhow, it was just heaven to stare at her in awe while she stared right back - no plastic walls between us. Tomorrow, the plan is to get an order from the doctor so that we may hold her each day!

Little David is still trucking along - his Nitric Oxide was in fact turned off which means one giant machine will be removed from his little corner! He also had a significant poop today! (ok - once they start going regularly, I'll stop documenting every single one, but right now, we just get so very excited about them - as ridiculous as it sounds) Overall he looks very good and seems a little calmer although he still has his particulars - position must be just right and he simply does not like to be touched - especially not tapped, rubbed or moved. He does tolerate a simple offering of a finger or a cuddle around the head and feet quite well though. We just can't wait until we can hold him as well - I just know that day will come soon! and I'm hoping that maybe he'll handle it well once he's in our arms. I'm told (by the nurses) that once holding can start that the babies tend to relax a bit more and sleep much better. They were also able to wean his cotisone slightly but have not yet made progress on the dopamine - one thing at a time seems to be working though.

Must get back to date night! The progress continues!! and we are just thrilled!

Love to all,
Heather

AWESOME!

Mary Louise is not only doing well with breathing on her own, but is also maintaining her oxygen saturation at or below the level she was on during mechanical ventilation! (she needs the same or less oxygen when breathing on her own) The doctor called today to give me an update. He laughs about his "updates" and says he doesn't know why he calls really because he knows I've already talked to everyone there and gotten the information on my own. But he calls anyhow - because that's what good doctors do! He actually said that Mary Louise was (and I quote) "AWESOME" and he has been quite surprised with her breathing so successfully. He didn't even remind me that this may not last - just let me enjoy the moment! She lost a little bit of weight today but was started on a diuretic yesterday so that may have something to do with it. They will give her a couple of days to see if her weight might level out and increase again. She is doing really well with her feedings and fortifier overall though. The doctor even mentioned pulling all IV access if she remains stable for another few days! This would make her a "grower and feeder"!! (the much coveted title meaning she is only there to gain weight by eating so she can eventually maintain her own body temperature) We are so proud of our little girl and all of her efforts!

David is also doing really well. He is up to 5mls on his feedings and tolerating them with minimal residuals. His oxygen and vent rates are low (well the oxygen goes up and down a bit depending on his position) and they went down on his pressure twice today. His nitric oxide is down to 1 and if he continues to tolerate the weaning, will be discontinued by tomorrow. (phew! one more giant machine down!) The nurses are working on weaning his dopamine and hydrocortisone as well although (again) he tends to react rather strongly to changes so they are really taking things very slowly as far as the weaning goes. His urine output has picked up - but they started him on diuretics - so really there's a reason it has increased. He had a little poop today as well and seems to be getting to the end of his meconium. (we celebrate all dirty diapers in this family!) We are so excited about all of his progress.

David will have one more tiny hurdle after all is said and done though....we found out today that he has an inguinal hernia. It is ok so far - the nurses check it with every diaper change - this is another very common issue with the micro-preemies apparently. Anyhow, it won't be fixed until a few more months down the road - and wouldn't prevent or delay his discharge but will need monitoring and eventually surgical repair. It is considered a very minor surgery but I would absolutely be lying if I said that we weren't very worried.

Having said that, we are so enjoying this progressive moment - and are again so thankful for all of the continued support.

The nurses put March of Dimes toys on the babies' beds today - such a sweet gesture. They have really been wonderful to our family - especially so to our babies.

Look at what I can do!

Mary Louise got her vent tube out today. They had previously decided not to try until next week but she begged to differ. After episodes of apnea - thought to be due to the tube moving back and forth - the doctor decided to try again today. I was there and allowed to stay by David the whole time and see her right after. She has done well with it this afternoon and is taking all of this 4 hours at a time (they are re-evaluating her blood gases frequently to see if re-intubation is necessary). But, so far, so good (it has been 7 hours now). Also, as of this afternoon, her bowel x-ray looked good - let's hope it stays that way!

David is doing well - and is on low vent settings. He is up to 3 mls every 3 hours on feedings of breast milk and having low to no residuals. He is being weaned from his Nitric Oxide still and other medications will slowly follow.

Exciting day!

Mary Louise gets extubated - photos from 517 518 519

soup's on!

Both David and Mary Louise are officially "eating" now! David is on 3mls of breast milk every 3 hours. Mary Louise is at 18mls every 3 hours and they are starting to add the human milk fortifier today (it is a powder mixed with the breast milk that contains extra calories and protein to compensate for issues with prematurity). She is not gaining enough weight so they are hoping the fortifier helps to remedy that. She is supposed to gain about 3/4th of and ounce per day currently and 1 ounce per day eventually - she is nowhere near that. A recent x-ray of her intestines showed that there is some looping that appears abnormal. She is stooling regularly and her belly is soft so they don't think it is the dreaded necrotising enterocolitis but they re-took the x-ray today to double check. Oh please let this be a non-issue!! The doctor wants her to put on weight and grow a bit more prior to trying to discontinue her vent so he may try again next week. This week, she needs to eat, grow, eat and grow, gain strength and get ready to take over the breathing once and for all! Her rate was very low today and they were trying to keep her oxygen as low as possible - it was at a medium rate. Other than that, she is doing well and looking more and more alert each day.

David is doing well overall. He has his favorite positions where he breathes really well and has low oxygen settings and not so favorite ones where he desats the whole time. He had another dirty diaper today and with real feeding started, there are (hopefully) many more to come. His urine output was still down and they were giving him normal saline boluses to try to help. His blood pressure also dropped slightly this morning. Again, the blouses should help with that. He seemed a bit calmer this morning and hopefully stays on that trend (though he continues to get overstimulated with even the tiniest disturbance). His chest x-rays look better though according to the doctor, they aren't "great". He has definite signs of chronic lung disease but his pneumonia seems to be clearing (that is, assuming it was pneumonia of which they still aren't sure). His sputum and blood cultures are still negative.

So, overall, a good day. Brent went back this evening and said they were still doing well but the nurse had not changed David's diaper yet - I do hope it was soaked!

Love,
Heather

One Month photos

Hope these are labeled correctly - I think they are. These were taken over the last 3 days. Enjoy!

one month photos

David - our grumpy little stuntman!

David decided to follow in his sister's footsteps and pull out his brand new vent tube last night. It was replaced immediately and unfortunately, set him back a bit on his oxygen weaning. However, he is still working on the weaning part. Apparently, he got a little grumpy after we left and decided he no longer wanted to deal with all of those ridiculous tubes, so he set about pulling at the most important one and I suppose got his way - even if it was just for a moment. Oh we will be so very thankful when they can manage all of the breathing work on their own! Other than that, his nitric oxide is still at 5 and his urine output decreased some, but is within the normal range as of today. We are hoping it stays at least where it is now, or increases a little. (Always seem to be praying for the wee with that one!) He is also doing well with his pedialyte feedings but will remain on that rather than breast milk today.

Mary Louise on the other hand is doing well overall with her vent weaning - although she does like to buck the system somewhat and take breaks from the work every once in awhile. The pushing seems to be working pretty well though. She is now up to 18mls on her feedings and is doing very well with them. She consistently wakes up just before they are due. The nurses say that is the only time she fusses at all - when her feedings are due and she is just hungry! I get so excited with every increase. She is also (ahem) processing her feedings very well and is apparently supplying them with ample dirty diapers. Way to go baby girl!

We've had a wonderful weekend with Ma Mere and Pop and will miss them until they return (but we know they won't stay away too long with those precious bundles growing here each day.) We are already looking forward to their next visit.

People ask all the time if I am still pumping. In answer to that question, I will tell you that Brent is at Lowe's right now trying to purchase a small freezer as we have no where else to put the milk. Although I wouldn't consider myself to have reached "cow status", I am able to fill up to 15 little NICU bottles for every 24 hours which far surpasses what they are taking in (the bottles are 2 ounces a piece). So the farther I get ahead now, the longer I can sustain them once they get home. My full time job is visit babies, get report from the doctor, pump, visit, eat, pump, visit, pump and so on. I really don't mind. The pumping reminds me that this all really happened and that I am actually a mom now. Parenting through pumping - what a concept.

The babies are a month old today!! And what a month it's been. We are so very lucky to have them.

ohhh the (beautiful) humanity!

The other day I was in the NICU by Mary Louise's incubator. Her nurse was talking to me saying what a good day Mary Louise was having and that she was so excited about her progress with feedings, etc. She then looked at me and said we must have some prayer network going for such tiny and early babies to be doing so well. I told her that I couldn't even hazard a guess anymore as to how many people were supporting us with positive thoughts and prayer. I said that there have been way too many times throughout all of this that the doctors have shrugged and said, we just don't have anything else we can do but wait and see if things get better - and all we had was prayer and positive thinking - and as it turns out, that's an awful lot. She agreed.

Today, after a long and fruitful visit with the babies, Brent and I went to his running group's crawfish boil. He's been running with them since January but with all that we've had going on, I hadn't met them prior to today. What a beautiful group of people they are! It was actually my first social outing since- hmm - the baby shower I was given at 19 weeks pregnant - so first in almost 3 months. I was nervous - waiting for my phone to ring. I feel sort of on edge all of the time - as if I must be ready at any second to make a life changing decision - we must be able to deploy at a moment's notice. (When we first came home, I was so nervous that I had clothes ready to throw on just in case we had to rush to the hospital in the middle of the night - and a few nights, I actually thought I might need them!) Anyhow, it was nice to meet some of the people who read this thing - and put faces with names. It's also quite humbling to know that there are so many people who take time out of their day just to read and think about our family - even ones that haven't met us. We are just thankful - beyond words.

As of this evening, David has been weaned down to a rate of 5 on his nitric oxide - this is down from 14 this morning - so it's quite an improvement. They have also been able to wean his ventilator rate and oxygen setting after placing a new tube as he'd outgrown the other and had some leaking this morning. He is doing well with his pedialyte feedings and they are progressing very slowly with them. He is up to 2 mls every 3 hours now - doubled since yesterday but a tiny amount all the same. The doctor hopes to start breast milk feedings tomorrow (again, a very tiny amount). His nurse this evening loves taking care of him which really means an awful lot to us. She was so excited to see us and tell us about little things he did last night - when he opened his eyes, how he slept - how he was most comfortable sleeping. He looked so content swaddled in his positioning aids (froggies) and wasn't fussy at all. It's really nice to know that he is sleeping quietly and comfortably at some point during the day.

Mary Louise's feedings have been increased once more to a rate of 16mls every 3 hours and she has done well with them all day today. She has been stagnant for the past few days on her vent settings so the doctor decided to "challange" her with a decrease and as of this evening, she was doing very well with a significant decrease in her rate and oxygen. This means that the little extra push made her take over a bit more of the breathing work - one step closer to getting rid of that pesky vent!

Unfortunately, chronic lung disease will be a long term issue for both of them as they are still dependent on their vents and oxygen. They are considered if they still need oxygen after one month of age. They will be one month tomorrow. This means that they will be more prone to lung-type infections and asthma type symptoms for up to the first 3 years or so of their lives. Basically, a simple cold, can for them, quickly turn into pneumonia so we must be very careful not to expose them to any external factors that might increase their risk of infection. There is more information on this condition if you google chronic lung disease of prematurity or bronchopulmonary dysplasia. Some of these babies are eventually sent home on oxygen. However, we will take this issue in stride (honestly, it would mean we'd be bringing them home right?)

So, we have had quite a day. My humble thanks to all those who read this, all who think about us and wish us well. I've thought of that old saying, "it takes a village to raise a child" and I feel like we must have the equivalent of a small country behind us. Our sweet babies - so loved by so many already. If they can one day know even a fraction of the incredible support they've been given, they'll know more than enough.

everybody poops!

and we are pleased to announce that Mary Louise and David do too! (I'm sure they will appreciate this post when they are teenagers!) Apparently, David had "multiple bowel movements" according to the doctor - his first since birth! When I changed Mary Louise's diaper today, she had an extra surprise - and has evidently gotten past her meconium finally. So, exciting day!

David looks much better but is still requiring extra ventilator support. Priority at this point is to wean the oxygen as much as he allows, followed by weaning of his blood pressure medications and finally the nitric oxide. They have started a tiny tiny amount of pedialyte every 6 hours as of this afternoon but I think the medications need to be weaned a bit prior to real feedings. He will be on antibiotics for at least 10 days and is responding a little slower than hoped - but is responding all the same. He's such a sensitive little guy (medically speaking)...they are still thinking it's pneumonia - his right lung fields showed cloudy as compared to earlier x-rays but his blood cultures remain negative. Today he weighed 1 pound 11 ounces I think.

Mary Louise is at 70% feedings now - she is getting 14 mls. every 3 hours! Today, she weighed 2 pounds 6 ounces - that's a one pound gain since birth. She is expected to be at full feedings by the end of the weekend as she seems to be tolerating them very well with little or no residual. She will also finish her antibiotics on Sunday I think and if full feedings get underway, she'll be off of IV meds from what I understand. They will, however, keep her PICC line in for now. This puts her at increased risk for infection, but until her little veins get a bit bigger, she needs to have some type of IV access in case of emergency. The doctor wants to leave it in until she has been on full feedings for at least a little over a week (maybe 2) - so they can know she is really tolerating them well. It is common for babies so small to have trouble and have to stop feedings numerous times apparently. Maybe she will once again surprise everyone (in a good way)? Her vent settings are ok - but she is not tolerating weaning as well as expected either - her carbon dioxide has been a bit high on her blood gases the last day or 2 so she needs to gain a bit of lung strength prior to weaning more.

There is a need to get them both as low as possible on the oxygen in hopes to prevent eye damage. David's blood pressure meds are of concern because with his heart working so hard, it can cause the muscle to thicken.

Overall, things are looking up - although they both still have tons of work to do. We are all enjoying a visit from Brent's parents - Ma Mere and Pop - this weekend and look forward to more family coming in the next week or so. The swine flu precautions have officially been lifted in the NICU and healthy adults are once again allowed in with parents of patients.

More photos coming soon...

David update

Although David is much more stable and his color is much better than last night, the doctor suspects that he has pneumonia. His antibiotics have been changed accordingly and vent support has been increased for now - until he can recover. This would explain why his cultures keep coming up negative while he continues to show signs of infection.

rough evening with David

So we went (to the NICU) at about 4:30 for our regular post work visit and we were asked to leave about 30 minutes later due to an emergency with another baby there. As horrible as it sounds, I thought, I'm so thankful that it's not our babies in the emergency...

Thought too quickly I suppose - we went back at 7:30 intending to stay until 9pm and leave for the evening. Just before we were to leave, David's oxygen saturation started to drop. Now, during the visit, he didn't grip my finger as hard as he usually does, didn't take his pacifier and looked a little pale but I was told his color had improved (since earlier in the day). He also seemed a little tired - although he was still quite irritable. Remember, I'm new at this mom stuff - and I'm not sure they would've done anything if I'd said "he's not holding my finger like he normally does". I was also told that he'd had a rough day with all of the changes to his settings, etc.

So, his saturation started to drop. His urine output was almost nothing for the afternoon. His nurse was at his bedside. He tried to suction David but nothing was in his tube (an ET tube can promote excess sectretions causing the babies to need suctioning when they sound congested). His chest sounded clear. His oxygen continued dropping - to the 30's!! He started to look dusky and actually turned gray! I was standing there watching my son slowly turn gray - wiggle every now and then while they (the NNP was there as well as another nurse, and a respiratory therapist - or 2) worked on him, listening, bagging, suctioning - but nothing was there. They took a chest xray. It was all white indicating either a pneumonia or that while bagging, his alveolar sacs (the little areas in the lungs that hold the oxygen) had collapsed and were not reinflating. This can apparently happen if the baby is disconnected from the vent, bagged, put back on the vent, etc. When they are disconnected, the alveolar sacs can collapse and as they are not fully formed, they stick together and cannot reinflate properly. They also checked his tube placement and repositioned him. All of this took about an hour of me and Brent looking on in horror as our little boy struggled. I couldn't say anything. Brent would ask a question and I was just frozen. I was scared that if I opened my mouth that all that would come out would be sobbing. After a long while, I found my voice and tried to explain what little I knew about what was going on and we continued to wait while the nurses, etc. quietly worked on him.

Finally the NNP said that his saturation was coming up. We went to look at him and he was pale but pink and his oxygen saturation was at 93%. I must admit, I was a bit numb - and terrified, and upset, but relief was not all that high on my list of feelings. They are not sure what caused the decline - the cultures take at least a day to process but it could still be infection. It could also be that too many changes were made at once yesterday. Anyhow, he is back up on the dopamine and nitric oxide, and his oxygen settings when we left were very high and his vent settings were increased.

In between all of this, I learned that they would most likely need the bed that is in between our 2 babies (Kuylen's bed). It has been empty since Kuylen. They apoligized for having to possibly "separate" our little ones but they have so much equipment that it would stress them to unplug and move - even such a short distance. It's not that there will be another baby there that bothers me. It's that if I could, I would do anything to prevent another person from having to go through even a fraction of what we've been through. The fact that they need that bed means the baby is really early (sort of like ours) or at least needs alot of care.

The NICU is set up in invisible sections. They aren't really discussed - and sometimes I wonder if other parents notice their babies' placement. Do they even know how lucky they are to be in THAT spot? ha. The closer you get to the door, the closer you are to leaving...our babies are all the way in the back against the wall. I wish that no delivery would warrant the use of that area ever again. Impossible I know - but a hope all the same. I hurt for the other mom - I remember how afraid, distraught and disappoited I was knowing that I was about to deliver my little ones so early -knowing just a fraction of what they would have to go through to make it out of those doors.

I have been so intensely thankful for every moment of pregnancy and every moment I've gotten to spend with my little ones. I don't think, "why me" really - not sure why. I just think - these are my children. They are little but I'm here for them to watch them grow - they are my family and we can do this. However, when I think of someone else going through it, I can take on sort of an outsider's view for just a moment. I think, "why them, why was that mom - that family chosen for this?" I don't pretend even for a second to know how they feel - the other parents in the NICU or other parents who have lost children or even other parents who have or will have micro-preemies like ours. I don't know what they are feeling. But I know how I feel - and if I could have one wish (outside of having my babies at home healthy and strong), I would wish that another family would never have to go through this. I'm not really looking for answers - the "God has a plan" thing has never really brought me any comfort. I find it to be an overused excuse when bad things happen. I've never been told that "God has a plan" when something good happens...

Back to David. I called very early this morning and was told that he remained stable through the night. After we left, his sats got better and he had a good night overall (after his whole not breathing and turning gray for mom fiasco - way to go kiddo!). I'll go to see them shortly.

I also got a quick report on Mary Louise. She is doing really well with her feedings - and oh by the way -had a big poopy diaper yesterday - Brent saw it! (I told you - all they have to do is breathe, wee and poop and they have it made with us!) Last night she didn't have any residuals - so that's really fantastic! Way to go baby girl!

Thank you for listening to my blabbering - this is quite therapeutic for me honestly (and I'm happy it keeps everyone informed easily). More news this evening...

Love,
Heather

Today's report: David's little set back

I just got a phone call from the doctor. David's urine output has dropped once again. His platelets are low warranting a transfusion this afternoon and he has required more oxygen and a slight increase in dopamine today. Blood cultures were drawn and infection is once again suspected but the results will not be in until tomorrow at the earliest. Antibiotics, however, will be started today. The doctor said that he looks good overall but is just different as compared to yesterday. Hopefully, this too shall pass quickly and as silently as possible and we can get back on track with our little guy in another day or 2.

Mary Louise is doing really well and extubation will be attempted either this weekend or on Tuesday (a different doctor will be in this weekend and will make a decision - the regular doctor will be back on Monday and if she remains stable, he will attempt extubation on Tuesday most likely if it hasn't been tried already). She has tolerated her feedings really well as is now past half feedings and on her way to not needing an IV access (a wonderful thought). She is only on dopamine through her IV and it is a very low dose. However, as both of our babies seem to like higher blood pressures, the low dose will be kept for now.

That's today's report from the doctor. We will visit the babies shortly...

David's new friend

David has been so fussy lately that the nurses have tried giving him a pacifier. Although even their smallest one seems a little big, he seems to be quite interested in it! We took a few photos yesterday - I'm sure we'll get some more but he is just so darn cute with it that I wanted to post the first ones. I'm thinking he's ready for something in his little tummy!

He just goes to town with sucking - Brent says he reminds him of Maggie off of the Simpsons.

There are a couple of Mary Louise in here as well - she was on her tummy and we so rarely see her back and her hair. We still can't believe how blonde both of them are.

We haven't been there yet today so we will post again after this evening's visit.

David's pacifier 51209

and the head ultrasounds were...

NEGATIVE!!!! woo hoo! both head ultrasounds were normal so that means no more until just before discharge!! Way to go little ones!

Mary Louise is progressing well with her feedings - already at 7mls every 4 hours. Tomorrow, the plan is to increase the feedings slightly in amount and frequency- to every 3 hours. If she handles the increase well, she will be at half feedings already - on her way to stopping the TPN. So, this week, her PDA was found to be closed, her head ultrasound was normal, and she has made huge strides with her feedings. The doctor will give her until Monday to try again with her vent as her carbon dioxide and pulmonary pressure have been slightly elevated and he feels she needs a little more time. However, she is doing well with the low settings so far.

David is doing very well with weaning from the vent. They are weaning from the nitric oxide this evening and once it is down to a rate of 5, weaning will have to slow significantly. If the nitric oxide can flow through a nasal cannula, they will try to extubate him tomorrow to see how he does. If not, he will remain intubated for weaning and be reevauated daily. His suction was turned off of his feeding tube today (he has been on low suction since his surgery) and residual gastric excretions will be checked throughout the night. As long as they are low, and he remains intubated, they will try feedings tomorrow. The doctor does not want to start feedings and try extubation on the same day. We are so looking forward to the opportunity to hold him for the first time.

What a week! Our sincerest thanks for the continued prayers and support as well as for all of the hard work of the medical staff taking care of our babies.

One Test Down, One to Go

Heather had a busy day today. She went to see the babies earlier today, then went to the dermatologist to have her pesky rash checked out, came home to eat late lunch, then back to he NICU with me when I got home. So, you can imagine, she is exhausted and a little edgy (remember that she is off the Zoloft, lucky me). The dermatologist confirmed that Heather had an allergic reaction to her Zoloft. Since quitting Friday, the itchy raised red bumps covering 80% of her body has become not so red, swollen but still a bit itchy. All in all, things are getting better for Heather.

The babies are doing well, and are being weaned off their ventilator settings, and other medications. All of this is to attempt to pull their breathing tubes out this week, and just use nasal tubes to provide oxygen to the babies. Remember, they attempted this with Mary Louise last week, and she held her own for 40 minutes before becoming really tired from working so hard to breath on her own. So lets keep our fingers crossed that things go even better this week for both of them. This would be a huge milestone to overcome. The echo's were done today of their hearts, and the PDA's are showing closed for now. Another good sign for both babies. Tomorrow is another big day, as they will have their second Head ultrasound. the first one was 2 weeks ago and didn't show any head bleeds. If all goes well, and there no head bleeds, then we will have crossed the biggest milestone to date. Mary seems to be handling the feedings well, and we hope that she starts putting on weight soon. The doctor is weaning David's blood pressure medication, and hopes to start feedings this week. All good news today.

Thank you for all your thoughtfulness and prayers. It all seems to be working, but as I keep reminding myself, we still have a long way to go .

Sincerely,
Brent

Tests tomorrow and Tuesday

Just a quick reminder: Mary Louise and David have big days on Monday and Tuesday. Tomorrow, both have ECHO's redone to check for closure or re-opening of their PDA's. As of the last one, both had small PDA's. Tomorrow's ECHO will help to gauge the rate at which David's blood pressure medications and vent settings are weaned as it will tell the doctor what his pulmonary pressure is.

On Tuesday both have head ultrasounds to check for any bleeds. Their first ones were done 2 weeks ago and were negative. If the ones on Tuesday are negative, they will not have any more done until discharge!

We had a really good visit with them this evening. We did not get to hold David as we did Mary Louise as he was very very fussy when we got there and was having a little trouble maintaining his oxygen saturation. I sat at his bedside and held his little hands and head and talked to him for almost an hour. He fell asleep while I was "holding" him and his sats leveled out. For an instant, I felt very mommish as I was lulling our little guy to sleep and watching Brent sitting with Mary Louise (across the room) while she was getting fed the milk I've been working so hard to produce.

By the way...David's incision looks amazing - actually we had to look for it to see it. Fascinating how well babies heal.

Treasuring these little moments - they mean the world to us.

Love,
Heather

Best Mother's Day surprise!!

We got to hold Mary Louise today!! For the first time since birth, we got to see her eyes first hand - not through plastic!! Brent and I each held her and she opened her eyes and kicked her little legs. It was just indescribable!

She and David both looked great today.

Her cultures from the 8th came back positive but the infection has been greatly reduced and is expected to clear in the next day or so. So far her IV accesses have held. They will try to get a PICC line when the infection is totally clear. They are also continuing to wean her from the vent and her dopamine drip (which is at a very low dose now). Her feedings have been increased twice and she is metabolizing them so far. As of today, she is receiving one fifth of her fluids by mouth (way to go baby girl!!).

David is doing well overall. They are starting to very slowly wean from the nitric oxide today as well as continuing to wean the dopamine/ dobutamine drip. The rate on his vent has been greatly reduced and although he does have periods where he needs some help, he has started to do most of the breathing work himself. We were told that we may be able to hold him later on this evening. If not today, then soon!! Blood cultures were drawn today again - all so far have come back negative but he's had a recent drop in platelets which caused some concern.

The following are a few photos of us today holding Mary Louise.

Drop Box

As far as the rash goes - it's still amazing...and by amazing I mean that it still looks like I've rolled around in mass amounts of poison ivy - naked. Ha - it doesn't look quite as "angry" as it did though and a few areas are starting to fade and heal. Thanks to my mother's obsessive googling, it has been brought to my attention that I've had every fine print side effect from Zoloft since I was started on it 3 weeks ago (post delivery). You know, the ones that are at the bottom of the side effect list that say "a small percentage of people experience...and if you experience any of these symptoms, you should contact your healthcare provider immediately." So, in effect, the pill that is supposed to keep me happy is making me totally insane with itching, sweating, odd burning sensations and unexplained rashes and fevers! I'm tapering off of it (look out!) in hopes that it allows this rash to subside.

Happy mother's day to all!

Love, Heather

no more stitches!

The surgeon came to check on David again today and wrote an order to take his stitches out! YAY!
He also seems a bit less agitated since he opened his eyes - as if a major goal has been accomplished. He is tolerating weaning of the vent rate and they are thinking of reducing the pressure and possibly starting to wean the nitric oxide today. His oxygen supplementation has been reduced as well.

Mary Louise is tolerating the breast milk very well and they were deciding between doubling her intake and spacing feedings farther apart or leaving her intake the same and giving her more frequent feedings (which by the way, would give her the same amount).

So my pumping will continue and is going well. The nurses actually asked me to stop bringing it in for awhile because I've overflowed my section of their freezer! So, we've taken to freezing it at home and I would like to keep them on exclusively breast milk for as long as possible.

As of this morning, Mary Louise's cultures were negative. She needs to have 3 separate cultures, negative over 72 hours each to declare her infection free. Her vent settings are a little higher since her extubation stunt but she is doing well overall and I think the plan to try again with the nasal cannula next week is still in effect.

Both babies have been at the same weight for a bit now. Mary Louise's lipids were discontinued a few days ago in an effort to obtain a negative culture so that could explain her lack of gain. If she continues to progress with her feedings, she will resume weight gain soon. David was switched from vent to oscilator to vent which causes fluid shifts. He looks a little less swollen each day though and hopefully will put on "real weight" again soon. If they are able to start feedings next week on him, that will help once they get to a fair amount.

So, progress continues!

Hugs,
Heather

oh REALLY?!

So the babies are doing well today once more.

Mary Louise is feisty as ever and staring down everyone who crosses her path to poke or prod. Her poor heels are taking the brunt of the poking and are bruised already. We are continuing to hope for the vent to be discontinued soon. Also, as of this afternoon, her blood culture was negative. This does not mean it will stay negative (they have to grow for a day or 2 before being considered negative) but it was encouraging all the same. Her oxygen level is back and forth but weaning from the vent is still on the table. They start feeding her breast milk as of 8pm tonight. I am so hoping she tolerates it well. It will start as tiny amounts for a bit then progress as she tolerates it. She will stay on her TPN (IV feedings) until she can take in enough breast milk to sustain her. She actually looks an awful lot like my baby photos.

David has opened both eyes as of today. His eyes may look like mine but the rest of him seems to be all Brent - he even makes the same focused facial expressions. They have been able to wean the rate on his vent to a rather low setting and are trying to wean his oxygen level down. So, he is doing much more of the breathing work himself these days. They are also working on very slow weaning from his blood pressure meds but are (again) keeping his pressure a little higher as he seems to do better that way. (oh our hot-headed kids!) A repeat ECHO was done today and unfortunately his PDA has opened a little. However, it is considered small and doesn't seem to be causing any problems right now so they will not medicate him.

Repeat ECHO's will be done on Monday (I know they are doing one on Mary Louise anyhow). Head ultrasound number 2 will be on Tuesday. This is a HUGE deal to us. If they have normal head ultrasounds this time, they will not have another until discharge. (and oh what a day that will be!!)

The oh REALLY?! title was for me actually. I believe I have officially gotten all major and minor complication pre-and post-pregnancy with the exception of drooling and gestational diabetes (no doubt avoided because I think they usually test around 26 weeks - ha). So I have a ridiculously HUGE rash now. I mean it's really impressive. It started a little yesterday and by this morning covered pretty much my whole body - with the exception of my lower legs and face. I called the lactation consultant and my regular OB to see if anything would cause this after pregnancy. I ended up going in to see Dr. Brown who said it looks like an allergic reaction (to what I have no idea) and gave me steroids and told me to take Zyrtec. I am to go to the dermatologist on Monday if it doesn't subside. I was told I couldn't pass it to the babies - and the neonatologist has seen it and told me I could still pump and visit, etc. But I avoided touching them today just to make sure. It is starting to clear after the first dose of steroids so that's promising. Still itchy though. UGH - what a bizarre happening. Honestly - I couldn't make this stuff up if I wanted to.

So glad to hear the neonatologist say "they are both doing well." So desperately wanting this trend to continue...

Love to all,
Heather

Day 3 - how did we get so lucky?

I see our blog family is growing - amazing and humbling how many people are supporting us in so many ways.

We've had another positive day today. Both babies remain stable as of this afternoon. It's now 10pm and we haven't had a phone call yet...

Mary Louise unfortunately had to have her umbilical artery line removed today. Her blood cultures were still positive this morning so they went ahead and removed it. Hopefully, she will be able to tolerate being weaned from the ventilator in the next week or so. This will greatly reduce the number of heel sticks necessary. Other than that she is doing well overall. They started feeding pedialyte today - very small amount to start. Apparently, choosing to feed pedialyte prior to breast milk is the doctor's preference. It is thought that maybe the pedialyte would be easier on the gut at first as it only takes basic absorption to digest it - no enzymes or real processing necessary. Residual gastric volume is checked after a time post feeding. After the first one, she didn't have any residual - showing her body processed the pedialyte well.

I've just received a phone call from the NICU that Mary Louise extubated herself for a bit. The doctor had to come in and reintubate her 20 minutes later though. He just wanted to let me know that they tried the cannula once more. Determined little buggar right?

David is doing well overall with weaning the rate on the ventilator. Weaing his oxygen level is a bit slower but progress is being made all the same. He opened his right eye while we were there. He makes the funniest little grumpy and serious faces. He has been trying so hard for awhile to open those eyes - wrinkling his little forehead. His nurse just told me on the phone that his left one is open now as well. If he can tolerate his oxygen level at 30% or below, they will start to wean the nitric oxide. He is currently at 42% which is down from 47% about 3 hours ago. The surgeon came to see him today to follow up again on his belly. He was pleased with David's progress and the appearance of his incision.

In response to the demand, we've taken many more photos of our 2 little miracles. The first ones of David are dark but there are some better ones later in the album. Enjoy...

babies

little baby update

The doctor phoned not long ago. They extubated Mary Louise and she did well for about 40 minutes but got exhausted so they intubated her again. They will try again next week and the doctor was pleased with her overall. She is maintaining the low settings. Her cultures are still positive for bacteria and negative for yeast. Her umbilical line will have to be pulled tomorrow if there is no more progress and they have yet to get a radial line. This means repeated heel sticks to get the blood they need for testing. On one hand, I hate that our little girl would get stuck so many times. On the other, it's time for this infection to go away! They plan to try a feeding on Friday.

David is remaining stable and they were able to wean his vent settings very slightly. His meds are still the same and they are planning to start weaning his dopamine and dobutamine extremely slowly in an effort to be able to get it low enough to start feedings at the 2 weeks from surgery mark. He will remain on the nitric oxide for now. It is now thought that he likes his blood pressure a little higher as well (Mary Louise seems to like hers a little higher). I've asked if this has to do with my issues during pregnancy and have been told that there is no evidence to prove that but the honest answer is that it is unknown. He will have another echo on Friday to ensure his PDA has remained closed. He has been taken off all antibiotics as his cultures have been negative. This of course leaves him open to infection but if he stays on the meds, there is a risk for a more resistant strain of infection as well as damage done from medication side effects.

The balancing act is ongoing but so far, today is a good day.

How am I doing?

I've received some messages asking how I'm recovering so here's the basics...

My blood pressure is still not normal and may never be. I've gone back to pretty much all low or no sodium foods, mostly fresh or cardiac friendly and am taking a dose of labetalol twice a day. It took all of 2 weeks but it seems my swelling has finally stopped. I was severely bruised and had alot of bleeding during and after the surgery but am healing quite well now. I am still quite sore and have to watch what I do but am able to drive which is nice. Just no yoga and gym workouts just yet (ha). My incision had to be vertical - well the muscular part is - which will add time to my recovery. Also, My hematacrit and hemoglobin will take at least 90 days to recover. They avoided a transfusion post surgically because I could stand, walk, talk and was not dizzy - only tired. So, the doctor wanted my body to recover on its own rather than adding the pressure of a transfusion to my blood pressure and kidneys.

Overall, I think I'm doing ok considering all that's happened. I realize that we never did post why I had to be delivered. The short story is: Kuylen was in severe distress (which we knew) and the worse he got, it seemed the worse I got. I started bleeding 2 days prior to being delivered and an ultrasound showed that David was starting to go into distress as well and that Mary Louise, although stable at that time, was showing signs of going along the same path (they would all eventually end up with reverse blood flow in their umbilical cords and placental insufficiency). My lab work looked terrible. So terrible that they didn't even wait for all of it to come back - perinatology was called and delivery was recommended. An emergency c-section was performed within the hour. It was to say the least awful. I was awake the entire time however and heard David and Mary Louise cry tiny cries before being intubated. When I saw Kuylen, he was kicking in his tiny plasic warming bag - I'll never forget that little face. My mom and Brent were both holding my hands and taking photos throughout the surgery.

It wasn't until after that that the real swelling started. The rest I think is in the other blogs.

I called to check on the babies this morning. Mary Louise is still weaning well from her ventilator and the plans to extubate sometime today are still in effect. David is stable as of this morning. He is off of the epi completely and the vent settings are unchanged - still a high dose of oxygen but he may tolerate a change after blood gases are drawn this afternoon? We'll see...

two trying days - time for a break?

I hesitate to say good day out loud for fear that the phone may ring. But it was - a good day that is. David has been put back on the regular ventilator at rather high settings but seems to be tolerating it well. His epi has been decreased significantly. They will leave him on the nitric oxide for the time being though. So overall, better than yesterday - or even this morning. I sat with a finger on his little foot for awhile this morning and this afternoon. He rested quietly and pushed against my finger every so often - it was the only part of him not covered by a tube, tape or his little positioning froggy and I didn't want to disturb him. He yawned and seems to have found his tongue over the last couple of days - he sticks it out constantly. Brent and I even asked if there was something wrong - ha - as he had it sticking out on the last couple of visits. We were assured that nothing is wrong and during this evening's visit he was sucking, blowing bubbles and playing a bit which was fun to watch. He is not out of the woods but is slowly making progress. We are once again so thankful for any little steps in a positive direction. Oh and he is making lots of urine again? The doctor has increased his fluids accordingly and has no answers as to why our little guy wees so much. I suppose I shouldn't question it too much if it's not causing difficulty?

Mary Louise is doing well overall. She has not had any of her saved cultures come back positive for yeast so they think that the one that did may have been misread. She still has a bacterial infection but it is taking longer to grow in cultures. It is still a large concern but is being dealt with. They tried again unsuccessfully to place a peripheral arterial line and are still trying to save her umbilical arterial line to prevent repeated needle sticks. The most exciting news is that they are planning to extubate her tomorrow if she continues to wean as well as she has been from the ventilator. I am trying not to get too excited - well I'm really not trying - I'm actually exstatic that there is even talk of extubation. Even if it doesn't happen tomorrow, it will happen soon right? So, after extubation, she would have a nasal cannula (the little nose prongs) with oxygen running through it. She would be breathing totally on her own. We may even hear her cry eventually! They haven't started feedings just yet but will most likely do so before the end of the week. Her eye lashes are growing very long - and blonde and she opens her eyes and stares in our direction rather often. She also kicks her little feet when a hand is placed under them - just like she did when I was pregnant - and grips our finger when we put it in her open hand.

Cherishing this progressive moment...

Afternoon visit

David is doing about the same. The doctors words were, "better than last night but not as good as 2 days ago." It was really hard to see him on the oscilator again with the nitric oxide tanks at his bedside. The equipment makes an awful lot of noise, he looks swollen and was agitated. All we could do was sit and stare. His newest goals have been set to weaning medications as tolerated and of course weaning his oscilator and oxygen settings after the medications. As of yet, they have been unable to decrease anything but he is stable for now. The doctor thinks much of his problem is simple immaturity of the cardiovascular and pulmonary systems. This means only time will tell when he will tolerate all of the weaning. There was also mention of the possibility of chronic lung disease. His blood cultures came back negative which seemed to sort of surprise the doctor.

Mary Louise is doing quite well. She is tolerating weaning of her vent settings and oxygen. Her blood cultures, however, are still positive and they had to pull one of her umbilical lines today. She now has an IV in her foot and one in her arm. Hopefully, these will last at least 48 hours. She still has an umbilical artery line and they are hoping that it is not causing the infection as it is allowing for blood draws without repeated needle sticks. We'll see in the next couple of days. Her plan is to continue weaning the settings on the vent and weaning of the dopamine as tolerated.

More news tomorrow...

First night / day in new routine

Last night the phone rang - and rang - David's blood pressure dropped again and they put him back on the oscilator rather than the ventilator after his oxygen level dropped. They also added another blood pressure medicine (epinephrine) and a med to help with kidney perfusion and seizures (phenobarbital) as he was having "alot of movement" and they were unsure as to whether it was a benign seizure - common for his gestational age. So, two steps forward. One leap back I suppose. His urine output had decreased significantly (now too low) and they were hoping that it would pick up again once his blood pressure was stable. They still can't rule out an infection as the primary problem but they think it is more likely pulmonary hypertension again. Apparently preemie babies are born with 2 heart issues - the PDA (now closed on David) and a patent foramen ovale. This one tends to close in time - cannot be fixed with medication and allows another avenue for David's heart to shunt blood in the wrong direction causing higher pressures in his lungs.

This morning I phoned in to check on them. David's urine output has increased once more to an acceptable level but his blood pressure has fluctuated periodically. He is considered relatively stable at this time however and will remain on the oscilator for now. He is back on the nitric oxide as well to help with the pulmonary hypertension. We are praying this new / old issue resolves quickly.

Mary Louise is doing well according to her nurse today. She is tolerating more stimulation - changing of position, etc. and is slowly being weaned once more off of her dobutamine as well as her ventilator settings. She is now 2.2 pounds.

Roller coaster - back on. We will see them this afternoon and if anything has changed, I'll post more then.

Love to all, Heather

2 good days - time for a blip

So after 2 good days, we got another late night visit from the NICU staff - this time the NNP (nurse practitioner). My heart just sank when I heard the knock on the door after 10pm. Mary Louise's blood pressure and urine output dropped last night and they weren't sure why. She was started on Dopamine again - a low dose. One of her blood cultures came back positive for a tiny amount of yeast - probably due to the 3 antibiotics she was on. Her infection, although still considered rather minor, is unyeilding in spite of the antibiotic therapy and she has now been started on a daily med for yeast in addition to the prophylactic one she was already receiving biweekly. The doctor thinks her umbilical lines may be harboring bacteria but is waiting until the cultures come back in the morning to decide whether or not to pull them. The problem is that at her size, IV access will be very difficult to maintain. Dopamine is extremely harsh on the veins to compound the issue. Another central line is not reccommended while infections are active. So, that's the circle.

This morning her urine output had increased and her color continues to appear normal. Her blood pressure has stabilized and they are still unsure as to why it dropped to begin with. The doctor thinks it may be due to her body needing to maintain a higher pressure than they would normally think neccessary at her age. They brought her pressure up, and she stabilized, so they adjusted the weaning parameters of her dopamine. She is still considered to be doing well overall and we are praying that her cultures come back negative and her infection clears. They are still slowly weaning her ventilator settings and although we've been assured it will be a long road, she is making progress there as well.

Today, David's blood pressure dropped as well. But in contrast to Mary Louise, his urine output has been really high. The theory is that his body likes a lower blood pressure as he is asymptomatic otherwise. So, they are watching him very closely for any signs of a perfusion problem - such as low urine output which would mean that there is not enough circulation to the kidneys - and adjusting medications accordingly. A rush ECHO was done to make sure his PDA remained closed and it has. His pulmonary hypertension also remains under control. Cultures have been sent off for him as well to ensure he is not getting an infection so we wait for the results from those. His incision still looks good and overall he appears to look good as well.

The problem is that there really isn't a protocol for blood pressure on babies of this gestational age and size. So, they are being treated symptomatically.

The doctor has told us that David cannot be fed for 2 weeks due to his surgery but Mary Louise will hopefully start tiny (trophic) feedings this week.

The nurse practitioner brought us to the NICU last night to show us how we can "hold" our babies. We were so pleased to have some contact as we held hands and cuddled heads and toes. David still gets overstimulated really easily but seemed to tolerate us just touching a hand or his feet quite well.

We did come home today with much support from the NICU doctors and staff. My heart aches for my babies but I feel lucky that we are not to far from them and that they are in good hands with the staff at the hospital.

Saturday Evening Update

Heather and I just got back from the NICU, and the babies are doing well. Mary Louise is doing good and they will probably starting to feed her sometime before wednesday. She is still showing some sign of an infection, but the doctor is positive about her condition at this time. David is doing great considering he had a major surgery yesterday. He has good color, and is peeing so much that they are regulating his meds to reduce his urine output. All in all, we will probably get some sleep tonight. My little sweet pea, and my lil sweet girl are making me a proud papa. They will only be 2 weeks old tomorrow and they are already giving me gray hair. Oh yeah, David's PDA valve is closed at this time, but can reopen, but is closed for now. Mary's PDA valve is showed inprovement of closing and is now cosidered small from previous small/moderate. Definitly improvement. So the roller coaster is running smooth at this time. Thank You for all the praying. It is definitly working, so please keep them coming.
Sincerely,
Brent

The day before that day

I am trying to officially go home tomorrow and start a routine of commuting here twice a day. I must say I'm having a harder time with it than I thought I would. All things considered we are lucky to live a mere 20 minutes away from the hospital as many of the parents seem to live up to an hour away and make a few trips a week rather than a day. Brent is ready to "get back to some sort of normalcy" however and I know that health wise it would do me some good to do so as well. We have met with the social worker and have been assured that if uncomfortable with commuting, we are able to call anytime and reserve a room for a night or 2 as long as the hospital is not full.

I have been asked by the social worker to help with a pamphlet she will start working on to orient the preemie parents to the NICU routine. She simply wants an opinion on the rough draft which will take awhile to complete. I am happy to oblige. I have also been asked by a few other nurses and friends how I feel. To be frank - I can't describe how wrong it feels to have gone through all of this and know that I have 2 children that I can't hold, can't take home, can't nurse and perhaps most damaging, cannot by any means protect from anything at all - including trauma, infection, pain and perhaps much worse. My body actually needs them - I sit and pump every 2 to 3 hours and think of them just to see if I can bring forth a little more milk. I dream about the first time I might be able to hold them and think what an amazing moment that might be. I think about them at home getting into everything and laugh about them playing with toys and sitting in the kitchen beating on pots like my brothers and I used to. I stare for hours at our babies through thick plastic and relish the thought of simply touching a hand. I joked the other day that Mary Louise and David absolutely have it made with us. All they have to do is poop, pee and eat and we just tear up with pride. A gripping of the hand or opening of their eyes is simply an added bonus some days. I've intently studied every new tiny fluff of hair, every movement, their equipment, their mannerisms in an effort to get to know them as much as I can. Brent actually noticed the discoloration on David's little belly prior to the nurse being concerned. We both realize how difficult getting from each point A to each point B is. It's actually quite heartbreaking. But our only concern is our children - they may be tiny but the mean everything to us.

I hope that gives those interested some type of insight - felt good to journal it anyhow.

Today Mary Louise looks beautiful. She blinked her big eyes for us a couple of times and held our fingers for a bit. She seems to have found her tongue and sticks it out and blows bubbles quite often. She has also taken to sucking on her feeding tube (placed only to release air- still not feeding yet). Her vent pressure and oxygen have been reduced significantly and she is maintaining stable vital signs without any medications. Her antibiotic therapy continues and although we don't have conclusive results on the organism, her bacterial infection is considered to be "minor". Overall, the neonatologist is pleased with her progress as of yesterday evening. He is talking about starting feedings as early as next week. She has lost a bit of weight - she is now 2.1 pounds. However, after stopping all blood pressure medications, some fluid loss is expected. I haven't spoken to the doctor about it yet though - hopefully this afternoon.

David looks good this morning. He's had some swelling around his face but we've been told that he had "lots of fluids" during his surgery so the swelling is no more than expected. The neonatologist was pleased with the surgical outcome as of yesterday evening and even went so far as to tell us that yesterday "was a good day" - followed by an assurance that more bad days were sure to come. Ha - can't let us relax too much - we might crack a smile. His incision looks good. He is producing lots of urine and has been completely weaned off of the nitric oxide. Overall he is much more stable than he was a day or 2 ago. He is still on dopamine however and there is talk of starting to wean again today. His vent settings are still a little high but considering all he's been through over the last 24 hours, this is not unexpected. They have been able to reduce his pressure a bit. The doctor is thinking about starting feedings as early as next week but David would have to really do well to do so. He was moving a bit this morning and although he is still on pain medication and slightly sedated, he seems to have processed the anesthesia well.

The feedings: along with the excitment of food comes a new list of risks for our little ones. Most concerning is the possiblity of necrotizing entercolitis. This is when the intestine develops essentially a rotten area which must be removed. Preemie babies are prone to this potentially fatal complication and we're told it takes a "bit of luck and prayers" to avoid it.

So we're still hanging in there - appreciating the happy moments and little milestones and awaiting the next hurdle...

David's surgery

After a little visit with us being allowed to hold his hand, say prayers, tell him how much we love him and how proud we are of his fighting efforts, David was taken into surgery by a huge team at about 7:30 this morning. The surgery started at 8AM and was over just before 9AM. He was back in his little corner of the NICU by 10 past 9.

The surgeon was pleased overall with the surgery. David did in fact have a tiny perforation in his intestines which was removed. His vital signs - notably his blood pressure - remained stable throughout. His neonatologist also seemed pleased. He will continue the antibiotic therapy previously in progress for a few more days to ensure proper protection. David's white blood cells have been elevated, but his blood cultures were always negative. Nonetheless he was started on antibiotics a few days ago - and now we know why his white cell count was elevated. The perforation was caught very early - prior to David showing any outward signs of getting sick so he has very good chances for a recovery from this problem.

It's always hard for us to make decisions like this - put all trust in a doctor (person) you've never met and don't know. We are pleased with the outcome so far but remain rattled from a sleepless night and extremely difficult morning.

Our sincere thanks to the nursing staff here at the hospital. Each area we've been in has been so gracious and accomadating. The Labor and Delivery nurses continue to follow our family progress. I see them in the halls sometimes and they always offer hugs, prayers and support. The NICU staff sat and talked to me this morning - some staying extra hours to see that everything went as smoothly as possible and when they had time, they came out of the surgical suite to give me updates on the progress in surgery. We just can't ask for anymore support from them or from our friends and family. We are truly lucky and blessed to have such warmth and support around us all the time.

As I sat next to David's isolette this morning holding his tiny hand, the feeling was overwhelming. Fear, focus, peace and anguish all at once. I remember looking at Brent last night and rather hysterically exclaiming, "WHY couldn't he just POOP!?" I suppose when you start asking why about some things, you may as well admit insanity. There are just no answers the the why's I have these days.

So, David is doing well, this morning has been successful. He will be kept quiet and comfortable for the rest of the day and weaning of meds and respirator will most likely continue tomorrow. We took some photos of the morning. I suppose it's a bit strange but I want so badly to take in every second I have with my babies - good or bad. Anyhow, I'll post them shortly.

Brent is poking fun at my ramblings - obviously, I needed a bit of journal therapy this morning. Mary Louise had a rather uneventful night and is resting quite well. All of her ventilator settings and oxygen have been reduced. She will have blood gases drawn once more at 10am and they plan to continue to wean her settings accordingly.

Many of the photos are dark because they keep the areas the babies are in darkened to avoid overstimulation and allow for rest.

Again - our thanks and love to all,

Heather

David's abdominal surgery day

Surgery

The surgeon came into our room about 10:30 pm last night and discussed his prognosis of David's condition. Basically he said that the x-Rays did not show any perforation in his intestines or abdomen, but looking at the swelling in his tummy and the discoloration. He believes that David has a spontaneous perforation to his bowel. He is doing an exploratory surgery to find and repair this problem at 7 am on Friday. He basically said that if this problem is left alone David would get sicker and most likely pass away. The surgery is risky, and the chance of his survival is 50\50, but without it would surely have a bad ending. So without much choice, Heather and I are allowing the surgery, and are praying hard that God doesn't decide to take another one of our babies. Please pray for David, and Mary as you have time today.
Thanks,
Brent