Prayer for Poop!

Dear God, I know i have been asking you for a lot of help lately, but please help our little David poop soon. He needs to poop so he doesn't end up with a perforated intestine. So, as you can see God, this is a major deal, and we need you to bless David with a good poop soon. Also, keep Mary and David safe, and take them in your arms and help them grow strong and healthy. Also look after our Jelly Bean Kuylen for us. thanks - Sincerely, Brent

The doctor came by to this afternoon to talk to us, not the one that Heather had it out with. He was very patient and informative as he always is, but you could tell he was a little extra cautious of his choice of words. I think word got around, and he is a little scared of "Crazy" Heather. He came in to give us our daily updates on his version of their prognosis. He is happy with Mary's condition and continues to wean her off of some of her meds. they continue to give her antibiotics due to "the infection" she contracted a few days ago. All in all she is doing okay. David is our little guy that needs to poop. His little abdomen is swelling a little bit and they are watching this closely.

Heather's "Arch-Rival Doctor" made a surprise visit this evening to our room to talk about David's problem. There is much concern that he may have a perforated intestine or something worse that includes inflammation of the abdomen. Both of these would require surgery, just depending which one would define the severity. Both surgeries in a child this small are risky, but the inflammation problem would cover a larger area and require more work for the surgeon. The perforated intestine would be a little less severe and require them to go in and cut out the perforated area, and paste it back together. So needless to say the roller coaster ride is still a bumpy ride, and I don't expect either of use to get much sleep until this problem corrects itself or surgery is done, and our little man is okay.

Please continue to pray for our children and our sanity, as we attack this next challenge head on. Even though we report that our babies are doing okay, they are still very much critical patients, and need much care before they will be well. Thanks again for all the concerns, thoughtfulness, and prayers, please keep them coming.
Sincerely,
Brent LeBlanc "Proud Papa, and Husband of Crazy Nurse Mom"

new ECHO results

The babies both had repeat Echocardiograms done yesterday to check the size of their PDA's (patent ductus arteriosis - they both have heart murmurs). Mary Louise's is smaller than the last time and the doctors have decided to see if it will close on it's own rather than medicating her or considering surgery. I'm told that although it is closing that it could reverse and open again so I'm left once again hoping for the best.

David's is also smaller! A huge deal considering it was ranked as severe during the last echo and now is classified as small to moderate. He will need to be weaned of his blood pressure medications prior to receiving the meds to fix his heart however which is where his pulmonary hypertension comes into play. It is getting better and they started to wean 2 of his medications last night. The third will be weaned once the others are discontinued.

These are huge steps for both babies and we're so pleased that David seems to be improving a tiny bit at a time. There is a possibility that he may need surgery but for now, he is doing well. We noticed last night that he is trying to open his eyes as well - so sweet to watch him seem to concentrate and wrinkle his little forehead with the effort.

Time for the morning visit.

So what if I'm crazy?!

So it all started with a visit from Dr. Brown yesterday - well that's how the "crazy" topic came up anyhow. He stopped in (oh this is my primary OB who has been out of town since the day before I delivered) to see how I was doing. Of course I was pumping when he walked in and he sat down anyhow - totally un-phased. Not that I really cared anyhow - I'm exhausted. He eventually asked me if I thought I had the"baby blues". I stared at him for a minute contemplating whether or not to go on a tangent about how I'm in my own personal hell and instead started giggling and said, "I don't think I'm expressing any feelings that are unwarranted." He smiled and said he was glad I was on Zoloft for the time being - I thought I'm glad this hospital doesn't have a psych ward because I think I'd have a line of people waiting to sign me over to it.

So today was a good day - until I went for my regular afternoon NICU visit and ran into the babies' neonatologist. Now, this man is known for his uhem sparkling personality if you will - but is also known for being the best neonatologist around which is why we (or I) chose him. Anyhow, he was sitting next to Mary Louise. I was happily going from bed to bed. He suddenly said - we've started Mary Louise on antibiotics - you know she has an infection - I told you they would get infections. I said no that I was not aware an infection was even considered at this point (the blood cultures had been drawn yesterday and I was uninformed). Then I asked why the nurses and students - and lab techs for that matter didn't wear gloves. He stated that the latest research showed that gloving did not reduce risk for infection - that simple handwashing was the only universal precaution. I said that he assumed the handwashing was effective and that it didn't make sense that wearing gloves would not thereby reduce exposure to bacteria. So what ultimately happened was that I walked away, he followed, confronted me again and we got in a sort of yelling match about bacteria and handwashing in the middle of the nicu. Then I said that I didn't want students working on my babies and that everyone working with them should use gloves unless he planned on guaranteeing proper handwashing. He said fine - and now I'm crazy nurse mom.

What was really bothering me? Mary Louise had a student assigned to her this week. The student had long nails, wore rings and smelled of smoke - and didn't wear gloves. Who ended up with an infection? MARY LOUISE! I did make that point during our little tiff but was told that I just needed to expect infection and that IF the babies survive, they will have infections. What a schmuck.

So Brent and I went back later this evening and tried to get some photos of Mary Louise's eyes and David's face. Some got a little blurred but I'll post them anyhow. Oh - and the NICU started to make all visitors wear gowns and masks because of swine flu - in case you're wondering about the get up.

mary's eyes and david's face

we've moved

Just so you know, we've moved to room 223 - take a right off the elevators. A few people have stopped by - just wanted you to know where we are. I'll stay here through the week as long as there's room. The hospital is very busy right now though so we'll see - I'll keep everyone posted. Oh and the door doesn't close properly on the new room - I've asked engineering to take a look but they haven't been super responders in the past (ha - I've been here way too long) - I've also put a note on the door to knock- with pumping I'd like to avoid an awkward moment or 2 (I pull the curtain as well so no worries if the knock is forgotten.) Thanks so much.

Love, Heather

big morning!

So after a rather restless night of sleep and a frustrating dip in milk production, I decided to try to pump one more time at 7:30 and get up to see how the babies were doing. A good decision in retrospect. I somehow suddenly pumped 4 ounces - a large amount for me - and I hadn't even eaten yet! Then I went to the NICU and both of the babies' nurses were excited to let me "work" for them.

I GOT TO CHANGE DAVID'S DIAPER -AND- RUB HIM WITH AQUAPHOR!!! I almost cried but held it together. I wanted the moment to last forever - massaging his tiny little feet. Then the nurse flipped him and I got to rub his back! AND his diaper was wet. Ha - seems so simple but it made me so proud. I saw his face and just stared in awe as he gripped my hand a wrinkled his little forehead. I really don't have the words to say how much it meant to me to be allowed to do so much with him - honestly - at the precise moment I so desperately needed to have some type of contact with him. His urine output increased significantly last night. He is now 1 pound 7 ounces though with the fluctuation in urine production, it will take a day or 2 to see how much is actual weight gain compared to fluid weight gain. His color is better, he is not as swollen and although he continues to desat when stimulated, overall they have been able to decrease his oxygen settings.

Mary Louise OPENED HER EYES!!! AND she had a POOP DIAPER!!! YAY!! I went to change it and it was soaked and had a tiny extra surprise. Her eyes stayed open the whole time until I rubbed her aquaphor on her and gave her a tiny massage - she drifted off to sleep again and relaxed. The nurse put endomycin ointment in her eyes. I know it's state mandated but I think it's kind of funny all the same - it prevents chlamydia - she was born via section with her eyes sealed. The only exposure she would've had was from the nurse who was holding her eyes open to put the ointment in them. No matter - she's protected. I'm proud. she definitely has long swimmer legs - kicking all the time just like she did in my belly.

I will of course go and see them later - multiple times today but wanted to share the AM news all the same. Enjoying this moment...

news today

The good news - and tiny milestones: Mary Louise weighed in at 2.4 pounds this morning. She could be retaining some fluid due to the oscilator she is on but that puts her past the 2 pound mark. She is also starting to open her eyes - the night nurses noticed and reported to Brent when he visited them before work.

I went in this afternoon for a visit and to speak with the doctor. They switched both babies back to the newer type of ventilator as they weren't benefiting much from the oscilators and their urine out put had decreased once more. Mary Louise's picked up a bit last night but David's has decreased and they are hoping it picks up again this evening. He is still de-sating on his oxygen when the nurses do anything to him - normal for a baby of his size but a concern all the same. He also gets overstimulated very easily so we are still not allowed to touch him. I've held his little hand once since he was born - it's becoming more and more difficult for me to stare at him through plastic - although I understand the reasons.

The doctor was more pleased with them than he was last week - he is very concerned about David's PDA and says he may need surgery. He continues to be more positive about Mary Louise and puts David as "slightly more on the negative side". We'll see what tomorrow brings - hopefully lots of urine!

breast pump clarification

I do have a medela pump that a family friend graciously gave to me. The lactation consultant however, recommended that I rent one from the hospital (which has a larger motor) for the time the babies are in the NICU as I don't have them as stimulation and preemie mom's tend to have trouble keeping their milk up. The program was simply supposed to pay for the rental but as we were turned down for a medicaid supplement program, I am ineligible for WIC (which I am told is also based on income). No matter - our babies had a good day today.