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...