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Weight gain

8/31/2009

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Brian just went to pick up my mom at the airport, and let's hope Grandma does some serious damage control. We desperately need her.

Had a quick visit with the ped (the one we like, not the one from August 21st) this morning. It's turning into a blame game. She blames the LCs for not keeping her informed, they blame us for not wanting to do formula (um, what? Formula was NEVER mentioned to us. And when the Monday consult told us to supplement with breast milk, we followed her instructions exactly). The ped also said that when we told her we were supplementing, she "assumed" we were using formula. Again, talk about a quagmire of miscommunication.

The scary part is that Scotty did not gain any weight from his last weigh-in on Friday night. He is still 7lbs, 13oz. He should be putting on 1-2oz per day. Either their scale is off or there is something else going on. I am so tired of worrying about this. I am just physically and mentally spent right now. We have another appointment tomorrow and are praying his weight goes up. Also had another blood draw this am and are still awaiting the results. We are feeding and feeding and feeding him - I don't know where the food is going. He does not appear dehydrated (per the ped) and his belly is round. Maybe he just needs to catch up.

The good news is that Scotty's poop is finally starting to transition to that yellow-ish color. This should have happened on Day 4. He is now on Day 13. I'm trying hard to be patient, but it's so hard. C'mon...let's get everything resolved so we can get on our way.

Other good news is that the ped told us that since Scotty's bili levels dropped so quickly, there is a good chance the number 29 was artificially elevated due to the dehydration. She thought 21 or 22 was a more accurate number, since it resolved itself within 12 hours (especially after those two boluses). So, thank God for that. We expressed our concerns to her about the Friday ped, and she just nodded. Who knows. They can all sit around and blame each other for all I care at this point.

I'm off to try to steal a quick nap. Brian is back to work today which means I had the nighttime feedings last night. I am so happy my mom is here to help for the next few weeks.
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Doing well

8/30/2009

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We survived our first (well, second-time around) night at home, and all went well. I can't believe how much this makes sense now - Scotty is up every three hours. He is delightfully alert. He gulps down his nummy meal and within 15 minutes of finishing, he is sleepy. We put him to bed and he goes to sleepy-land. Repeat every three hours.

Feedings are taking no more than 30 minutes (per the nurses). Burping is going well. Dirty diapers are stacking up, much to my delight, and we have a new chart to record all of Scotty's daily activities. I added a column for 'mental status' just to make sure we don't too many 'sleepy' cycles in a row.

As for Brian and I, well, we're doing the best we can. I definitely have a tendency to ruminate, though I am desperately trying to not do that now. I just can't believe how close we got to losing our little guy. Over something so small and so common. I keep telling myself now is the perfect time to put this rumination stuff to bed - all of my energy needs to be focused on Scotty - and it seems to be helping. This is a change I probably should have made years ago (also see: Wedding, My) and learned to let go of past grievances. Well, this is a pretty big sign to tell me, "Kim, stop focusing on the past. Concentrate on the future and the people that need your attention most."

I'm also just very, very, very physically tired. I've gotten a lot of questions about milk productions, and yes, I'm still pumping. I'm very gun-shy of any actual to-the-breast feeding, but we do want to get him back on breast milk soon. The nurse told us yesterday that bilirubin binds better to formula than breast milk, so we will continue that for the next few days. After the dust has settled, I'm more than happy to offer breast milk again.

As for production, on Wednesday night when all the drama went down, I pumped 8 oz at the hospital (around 2am) and then woke up on Thursday to pump barely 2 oz. I think it was a combination of stress and my intentional denial of fluids (to prevent having to use the bathroom). It has steadily been coming back - I pumped almost 2.5 oz yesterday - and I'm drinking the tea and gulping fluids by the gallon. I'm trying to be patient with myself. Having the baby home is infinitely easier on milk production - all I have to do it look at our little guy, and the milk starts flowing - but Thursday, Friday, and Saturday were tough. But, it's Sunday and that's what we need to focus on.

My mom arrives tomorrow. HOORAY! I cannot wait to have her here. I can't wait for her to meet Scotty and Scotty to meet her...my dad will be coming out later in the month, and they should both be here for my birthday later in September. Aw. That makes me so happy. I guess you never really grow up.

Oh, and as an aside - I feel like we are getting to know Scotty all over again. The last week was not a good demonstration of his little personality. He is hilarious and so animated.  He has these big blue eyes that he looks at Brian and I with (and also Emma), and you can almost see the wheels turning in his head. He is so quiet, too. He only cries when his bottle is delayed. His alert time is spent looking at us, pushing up on my chest, and in tummy time. The kid has great head control for a 12-day old baby. All of these, again, are great indicators that things are connecting in his little brain and none of that toxic bili seeped into his delicate cranium.

He kind of reminds me of that baby in the Superbowl commercial from this year - the one where the baby shook the doctor's hand after he was delivered? Scotty has this "old soul" quality to him. Yesterday at the NICU, the nurse was changing his diaper and told him, "Okay Scotty, turn your head to the left." And he did. It took all three of us a second to grasp what had happened and all of us burst out laughing. We were like, "He's just a baby! How did he do that?" Obviously, it is just coincidental, but he has done that a few times. The nurse told him to wave good-bye to the other nurses and he lifted his hand in greeting. What a character.

We are so happy he is home and doing well. :-)
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Home

8/29/2009

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We are all finally home...thank goodness.

We were at the hospital this morning by around 11am, ready to take our little guy home as soon as possible. I was surprised the whole discharge process took over 5 hours -- it was quite the process.

Scotty's 9am blood draw came back at 12.9 - up .8 from this draw at 9pm last night, but the nurse assured us that this is common and .8 is absolutely nothing to worry about. The lights were turned off as soon as they got the results last night, and as long as he keeps peeing/pooping, we are out of the woods.

He also passed the hearing screen today, which the doctor had told me was the first obstacle in making sure there was no permanent damage. I guess hearing is especially fragile to kernicterus, and a passed hearing screen is a great indication that everything is a-okay.

We read through his discharge summary and a lot of it was very reassuring. They had used the term "mild hypotonia" when he presented to the ER (very relaxed muscle state) but that was the only word I recognized from all of the scary words from the night before. His bili number upon admit was 28.9. The discharge summary was much happier - low numbers for everything, lovely negative results, and they even referred to him as active and alert. Music to my ears.

I think the sweetest part of the day came just as we were loading him in the car seat. Before the nurse tucked him in, she asked if it was okay for him to "say good-bye" to everyone. I replied that I didnt' realize he had made friends. She carted him out of his isolation chamber and walked over to the nurses station, all while the other nurses coo'ed their good-byes. It was so wonderful to see how many people were working on his case. One nurse even commented on how "advanced" he seemed, especially with his head movements and his alertness. Oh my word, that about brought me to tears. Our nurse was quick to pick up on it, and instantly reassured me that there are very likely absolutely no long term issues as a result of all of this. Oh, please, keep telling me that. The staff and doctors were wonderful, and we really owe them. They essentially saved his life and quality of life.

So, as I said, everyone is telling us that there will likely not be any permanent damage. Time will tell, but Scotty's exhibiting normal, healthy, 11-day old behavior. I just gave him a bottle and he gulped it down. He and Brian are now snuggling on the couch, with Scotty in his little football sleeper suit, and both are looking awfully cozy. I can't wait to join them.

Thanks again for all the thoughts and prayers. They clearly worked. I'm overwhelmed with the amount of support that rallied behind our little guy. I hope I can return the favor if it ever comes to that.

Oh - and how much did our 72 hours nightmare cost? Rough estimates put us at just around $17,000.  Thank goodness for health insurance!
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Hindsight

8/29/2009

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It's all so obvious in hindsight.

In hindsight, the ped ordered us to get an ambulance on Wednesday night not because Scotty's vitals were dropping, but because he was afraid of brain damage. Kernicterus moves quickly and goes through stages - early, middle, and late - and Scotty had one of the four in the first stage (lethargy). Hitting stage 2 would have met the brain damage was happening, and stage 3...well, stage 3 is either permanent damage and/or death.

In hindsight, we were sent to the NICU (a very odd decision, according to our nurse from yesterday, since babies that have been home are considered "dirty" and ususally not allowed in their germ-aphobic environment) not due to staffing issues, but because of the need for a possible exchange transfusion. An exchange transfusion is done on a baby who's bili levels are rising (or are already too high). It sounds like a blood transfusion, and the baby recieves cleaner blood. I asked the neonatologist point blank if an exchange transfusion (the last weapon in the fight against kernicterus) was on the table, and she said yes. She said that b/c his levels dropped so quickly (from 28 [or 29, depending on who you ask] to 21 within four hours, and down to 19 within 12 hours), it was canceled.

In hindsight, the neonatologist also said a blood test on Friday, August 21st, would have highlighted rising levels. Even a level of 10 or 12 would have warranted a recheck on Monday, in combination with supplementing with formula. Breast milk actually contains bilirubin (from me), which is why breast fed babies take longer to get over jaundice than formula fed babies. Scotty's levels most likely rose over the weekend, fueled by the dehydration, but since we didn't know about either, Monday, Tuesday, and Wednesday's feedings were just barely keeping the little guy stable. He never had a fighting chance.

And in the research I found last night, in the case studies of babies who did develop kernicterus, 81% of them were breast fed. 81%. And that ped on camera in that movie I watch said there are NO DANGERS to breast milk? How so? It seems as though if you plan to exclusively breast feed, you should be required to have additional monitoring for the first 7 days while at home, including blood tests and more frequent ped visits. And maybe even mandatory phototherapy as a preventive measure. Why are hospitals not talking to new moms about this? My child had three hearing tests while in the hospital - and deafness is not a life-threatening condition - but not one single person talked to us about the jaundice and the dangers of breast feedings. Why don't most people know and understand what happens after jaundice gets out of control? Considering the ramifications, you would think everyone in the free world would know and monitor jaundice babies like hawks.

In hindsight, it all makes sense. And moving forward, hopefully, hopefully, our little Scotty will make a full recovery and never have to hear the word "kernicterus" mentioned. Ever. I know I don't want to.

I just called the NICU for an update and he is up to 7lbs, 13oz - a huge jump from yesterday's 7lbs, 8oz. He is eating and eating, which means he is pooping and pooping. Thank god. Get all of that gunky bili out of your system, little man. It sounds very promising that he will be home later today, which means I won't have time to blog much anymore, but thanks for all of your thoughts and prayers over the last few nightmarish days.

And in other news (as Catheter-gate continues)...I think I might need to pee! I felt the urge last night. God bless the bladder. I'm not removing the foley until my mom is on the ground in Vegas, but maybe, just maybe, we can put this horrible week behind us. It's funny, since if you know me well, you know I despise the month of August. (I hate April, too...I don't know why. Months that start with the letter 'A' just have always bugged me.) Anyways, several months ago, I was telling my friend Sherri (who also is not a fan of August) that since it will most likely be Scotty's birth month, maybe it's a sign I need to get over my dislike of August. Well, after this week...I don't know. August 18th was by far the greatest day of my life to date - beyond anything else I've ever experienced - but August 26th was also the worst day of my life (with yesterday coming in a close second). I can't help but look at the calendar and breath a little easier knowing that September starts on Tuesday...wake me up when September comes.
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Friday, still

8/28/2009

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So I just googled 'kernicterus' - the result of too much bilirubin - and scared the crap out of myself. To put it bluntly, too much bilirubin (greater than 25-30mg - and we were 29) can cause kernicterus, which is turn causes mental retardation, hearing loss, cerebral palsy, and a bunch of other words I cannot pronounce or even spell (or remember).

Reading through these case studies (with infants with levels as 23 and 27 - much lower than our 29 - and yet they still developed kernicterus) scared me and Brian so much that Brian actually turned off the Packer game and started reading over my shoulder. It warranted a phone call to the on-call neonatologist who also happened to be the one who admitted Scotty on Wednesday night.

She was wonderfully reassuring. She said she would be shocked if Scotty developed kernicterus, mainly because of his fetal age and weight when admitted. She said that at 8 days, the blood barrier in the brain is much better established than with a 3 or 4 day old, which is a huge protective factor. She also said his jaundice was primarily caused by the dehydration, which was easily remedied and there was a clear drop in his bilirubin levels within four hours, also a protective factor.

She said the last baby she saw who had kernicterus was a little girl at 4 days old whose levels were 54. Now that's high. She said 35mg at 8 days old is concerning, 29 warranted immediate action, but is still low enough to be okay. She repeated what our nurse said re: Scotty's current behavior, and he is eating like a champ and showing reactivity to stimulation and his environment. His reflexes are working and he has plenty of alert periods.

And, ironically enough, one of the first indications of kernicterus is hearing loss. I didn't mention it in the blog, but Scotty had a hearing test early Wednesday morning (same day as his admit). He passed with flying colors. She said the likelihood of the bilirubin spiking so fast - and she said 1 point an hour would be considered fast - is very unlikely. So Scotty's levels were probably rising very slowly, meaning he was in the 20s on Wednesday morning but with no ill effects, like the hearing loss. Thus highlighting he probably hasn't been adversely affected by the number 29. Thank you, God.

Kernicterus is also an umbrella disease, meaning if he doesnt' have it, he won't have mental retardation, hearing loss, celebral palsy, and all those other scary diseases. The bad part is that we won't know for several months - all of the case studies I read said it is usually diagnosed between 4-18 months of age. But again, we have enough protective factors to at least be able to sleep at night.

Interestingly, when I mentioned the MRI (initially broached by the Friday ped), she sounded shocked. She said the risks (general anesethia) are far greater than any info we would gain, and again, what would we do with that info? While the result of a false positive is rare, there is a chance it wouldn't show anything (a false negative) but Scotty could still have kernicterus. So, yet again, our stupid ped (again, not the one I like, but the older one) gave us more incorrect information. Unbelievable.

**Update** - the nurse just called and Scotty's levels are at 12. :-) Oh, such a good boy. His lights are turned off and they will be doing a recheck at 9am tomorrow morning. Hearing test will be repeated tomorrow, and she said there is a 75% chance he will be released. So...while I am so thankful he is doing so much better, I'll be honest, I'm terrified of him coming home again. I just don't trust myself (or our ped). So...I don't know. Just keep thinking good thoughts.
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The number 29

8/28/2009

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We are back from the hospital and I want to keep everyone updated. I can't thank you enough for all the phone calls/texts/Facebook messages. It is so nice to know there are so many people thinking and praying for us. Please, please, please keep praying.

The good news:

Scotty did GREAT today!!!! He looked like a different baby, literally. His color was great - pinkish - and his little lips were completely different. They were pink and plump, nothing like the red, thin lips that he had earlier this week. The difference is so obvious, I cannot believe I didn't catch this sooner. I can't believe the plethora of professionals we saw this week - peds, LCs, my ob, the urologist - didn't catch this sooner.  It seems so obvious now that he was clearly sick, but I didn't have a comparison...I just didn't know. Now I do.

We were able to give Scotty three different feedings today and he is eating like a little piggy! It is so wonderful to watch. The nurse wanted him on the breast for his noon feeding, and I was okay with that only b/c I knew he was going to get a bottle of more breast milk after we were done. He drank almost three ounces from the bottle, making me wonder exactly how much he got from the breast...three oz is just about right for a baby of his age and weight. Which means that he probably got very little from the breast, despite the nurse saying he has a great latch and I can feel him eating. So once again, this whole thing is a mystery. It appears as though he is eating from the breast, but just not much.

He was sleepy for the 3pm feed, but woke up early for his 6pm feed and was super crabby, all of which are great signs. The nurse today was wondeful and quick to assure us that he is doing exactly what babies do - sometimes they eat less, but then they NEED to make up for it with the next feed. Oh, I so wish I had known this earlier. It makes so much sense. Just seeing him so alert during the noon feeding really hit home just how many danger signs we had missed. The nurse called a lot of his behavior completely normal, yet it was a surprise for us - especially the alertness. Everyone up to this point had commented on what a good baby we had, what a peaceful baby, what a sleepy baby he was. And I thought, he is a good baby. It never crossed my mind that he is a SICK baby.  So, I'm trying to tell myself that it's not about what we missed, it's about what we know now. That is what is important.

Also, all of his lab work is coming back happily negative. Negative, negative, negative. I love it. Spleen, liver, and kidney functions are normal, he doens't have any kind of infection, and the MRSA/RSV stuff is all negative (preliminarily), so the gowns are gone and Scotty can see our happy, smiling faces again.

And perhaps the best of news --- bilirubin levels are down to 14!!!!! HOORAY! There will be another check at 9pm tonight (he is now down to blood draws every 12 hours) and if it has dropped again, they will turn off all of the lights and monitor him for 12 hours to make sure levels don't go back up. So, all of this is wonderful, significant progress and Brian and I couldn't be happier.

Now, for the bad news:

This is the part that just kills me. I cannot tell you how many people have commented to us that jaundice is such a common problem; it's "nothing to worry about." I couldn't agree more. In fact, I had received an email from a friend  last week who is a PA at a pediatric clinic who wrote, and I quote, "Stay on top of that jaundice!" She was absolutely right - and I thought we were. Everything I had read/been told, breast is best. Breast milk will cure jaundice. Breast milk will benefit him more than formula. Breats is best. Breast is best. I attended a breast feeding class when I was 30+ weeks pregnant and there was a pediatrician in a film that they showed that said, "Many people ask me about the dangers of breast milk. I tell them, there are no dangers. There are only dangers with formula." That statement has stayed in my head, which is why I felt as though we were doing everything possible for Scotty over the last 10 days. Breast is best. Breast is best.

Well, guess what? Breast ISN'T best. And no one told us this.  I was doing fine today until we received a call from the ped that saw Scotty last Friday (he was seen by a new ped - the one I liked and interviewed - on Wednesday). She called to say she was checking in on us. I told her I appreciated it, and gave her a status update. And then, without warning, she tells us this:

"I've never seen such a high number in my 30 years of practice. 29 is just so high...I've seen kids with levels at 22 or 23 that were high...one even was as high as 25. And they all turned out fine. But never 29.  Never 29."

I don't know what she said next, since I promptly dropped the phone, ran downstairs, and got violently ill.

I cannot believe I am even typing this, but as we were told on Wednesday night, jaundice is totally treatable...as long as it was caught in time. 35 is NOT the number of no return; a lot of it depends on the age of the baby as well. The older the baby, the higher the number, the greater likliehood of neurological damage. As in, parts of the brain are damaged and will not recover.

Twenty-nine.

Scotty was 8 days old when he was admitted. Most babies may get as high as 29, but it's within the first 1-5 days of life. Not in the second week of life. 8 days old is considered ancient in terms of jaundice status, and 29 is a high number. When I pressed our nurse for more info, she confirmed that 29 is the highest number she has ever seen as well. She was quick to point out that she works in the NICU, not in pediatrics, and some of those nurses might have a different story. But so far, our child had the highest level for two professionals.

I think a little part of me died when I heard that info. I am trying so hard to not think about it - I am so angry, so sad, and so devastated that the first 8 days of Scotty's life might dicate the rest of it. I just can't believe it. I can't believe that a completely preventable, treatable, and common illness had gotten to this point. And I am BEYOND angry that this wasn't caught sooner.

Where the hell was the ped on Friday when we needed her? I showed her the diaper with the red and orange crystals in it. She knew that he was dehydrated (or dehydrating). She knew that dehydration causes babies to have low energy, which makes nursing even harder. She knew at that time that Scotty had dropped to lower than 15% of his birth weight. She knew that we were having trouble breast feeding. She KNEW all of this - every single compounding variable - and at no point did she ever suggest supplementing or formula. All she did is chirp like a bird and tell us to keep him at the breast. It's like the Titanic - he had the iceberg warning in his hand - and yet, we still hit the iceberg.  How the HELL did this happen?

We received some literature today that said, and I quote:

"Breast milk may sometimes interfere with the liver's ablilty to produce bilirubin, so breastfeeding may prolong jaundice in some newborns, causing it to persist into the second week of life. When this happens, some peds may recommend that you consider stopping breast feeding briefly (no more that 48 hours) to help decrease the bilirubin levels in your baby's blood."

Why did she not advise us of this? Why did she not schedule us for a Monday appointment (Day 6), instead of a Wednesday appointment (Day 8)? Also in the literature, it states that children are more likely to be at risk for jaundice if they are 1.) boys (check), 2.) lose a lot of weight at birth (check), 3.) mothers are diabetic (nope) and 4.) are born via induction (check). I had THREE of the FOUR risk factors. Where the hell were the professionals to tell us this? Where was the nursing staff in post-partum to check in on us? Where was the ped on Friday to say, "Hmm, he looks orange. Let's get a blood test and in the mean time, use formula for the next 2 days." I was the one who insisted on an LC that Friday - I was the one who set up the appointment on Monday with the LC. Why did the ped not want us back on Monday? That was Day 6. Again, this was preventable...but it was not prevented. We hit the iceberg.

All I know is that our nurse today, again, reassured us that Scotty is doing exactly what he is supposed to. He is showing no signs of neurological damage, and didn't show any when he was admitted. No extreme arching of the back, no high pitched screaming, or complete lack of movement...we had the lethargy, but none of those three, thank God. He is also eating like a champ, producing all kinds of dirty diapers, and is alert when he's supposed to. He took to the breast just as well as he took to the bottle, and he is alert and strong and great during tummy time.  She said the biggest key are the feedings - he would have disorganized feedings if there had been damage. So far, so good. But yet, we won't know for awhie.

I am trying so hard to not have a complete breakdown at this point. I am shaking with fear as I type this. I can hardly believe this is a possibility. My mom, the nurse, Brian - everyone is saying just to focus on the present. We can get an MRI to look at neurological development (and we will, as long as it doesn't hurt Scotty) to get peace of mind, but we won't know for sure until he starts to hit his developmental milestones. As Brian and I talked on the way home, we are prepared to hire early intervention services, language specialists, physical therapists - whatever it takes - to make sure he is on track despite these early set backs.

I also find the behavior of both peds highly suspicious. They have been calling us and the NICU constantly - at least twice a day. They keep claiming that they are very concerned about us.  Why are they so concerned now? Scotty has the best care and round-the-clock medical supervision. Why NOW are they so active? Shouldn't they have done that, say, on FRIDAY? I can't help but feel they they know that they screwed up - screwed up big time - and are trying to prevent some kind of lawsuit. I don't know if we have a case or even a claim, but you know what? Let 'em sweat. Let 'em suffer. Let them suffer Iike we have suffered over the past 48 hours. Let them sit at dinner, with food in front of them, completely unable to eat b/c you feel so guilty you just want to punish yourself through starvation. Let them come home to an empty crib that looks so large and empty that it makes your heart break. Let them wake up in the middle of night, expecting to hear a baby cry, only to remember it's time to call the NICU to get the nightly update. Let them suffer and sweat and die a little on the inside.

Just please keep praying that the worst case scenario does not play out here. Please, please, please. After nurturing this little guy for 9 nine months, I am in shock at how many of us completely fucked this up in only 8 days.

                                                    **********

We go back tomorrow and I'll continue to update the blog nightly. I don't know who is even reading at this point - all I know, it's very cathartic to get it out. And it's also convenient for the phone tree of concerns. We hope our little guy will be home either tomorrow (though that scares me) or Sunday. My mom is flying out on Monday and I cannot wait until she is here. I am desperate for some kind of support/reassurance/extra pair of hands. Brian and I are sleeping okay at night - mainly due to sheer exhaustion - but what is interesting is that everytime one of us wakes us, we are literally clinging to each other. Even in our unconscious state, we are terrified.
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Here now

8/27/2009

6 Comments

 
Okay, this is going to be a long post so bear with me. A lot has transpired over the last few days.

As I type this, Scotty is not home with us. He is in the NICU at a local hospital. The course of events that led up to this is still boggling my mind and please know, if you have called or texted in recent days and I haven't responded, it is because we are literally overwhelmed with what has happened.

The only way I can think to organize my thoughts at this point is to do a time line. This is what happened:

Tuesday, August 18th:  Scotty is born!!! Great day

I had some complications after his birth. Long story short, I was unable to go to the bathroom two hours after delivery. I ended up passing out in the bathroom (naked, to my horror) on an L&D nurse. I eventually woke up and dragged back to bed.  They took the catheter out but I was still unable to go. No biggie, said everyone, it will just take a few hours.

Several hours later, they put the catheter back in since I still couldn't go. They left it there overnight with a strict warning that if I was unable to go by the time I was discharged, I would have to go home with a catheter in. Not fun. Apparently, two theories were at play: 1.) during pushing, my brain "disconnected" from my bladder, kind like when your arm falls asleep. Those nerves are asleep and we need them to wake up, or 2.) during pushing, the urethra swelled and is causing a blockage from the bladder to the outside world. Wait a little and the swelling with go down.

Wednesday, August 19th:  Scotty is doing great at breastfeeding. Good latch, very happy baby.

I am still unable to go. They cath me again (4th cath in 2 days) and send me home. I commented to the post partum nurse that I felt like a suicide bomber as she strapped the bag to my leg. She laughed.

We all head home, happy to be a family.

Thursday, August 20th:  Scotty is really fussy and not taking the breast. He is crying a lot. We chalk it up to newborn status and attempt to get him to feed at every opportunity. Brian and I have now had about 5 hours of sleep since Sunday night. (up all night for the birth, little sleep on Tuesday, and NONE on Wednesday).

Friday, August 21st: first ped appointment. Also find red/orange crystals in Scotty's urine, a sign of dehydration. The ped doesn't seem concerned and tells us to keep him at the breast for as long as possible. She gets him to latch on, but it's awful and it hurts. I request a consult with a lactation specialist; they are able to take us that afternoon. Ped would like to follow-up with us on Wednesday of next week.

The LC recommends we open a "breast-aurant" for the weekend. I.e. all boob, all the time. Brian and I are up at all hours, feeding every two hours and trying to wake up the baby to get him to latch on. He is incredibly sleepy and very difficult to wake up. Brian and I continue to become exhausted.

Saturday/Sunday:  Feed, feed, feed. No sleep. Feed more. Scotty seems to be drinking more and my milk finally comes in on Saturday afternoon.

Monday, August 24th:  follow-up consult with LC. Scotty has only gained 1.5 ounces; he is down almost 15% from his birth weight.  LC recommends we begin to supplement with 1oz. of breastmilk after every feeding using an eye dropper. We start this Monday afternoon. Scotty is increasingly sleepy and quiet. We chalk it up his allegedly full tummy.

Tuesday, August 25th:  Continue to use the 1oz supplement. Scotty is getting more yellow by the day. I try to keep him in the sunlight (there was none on Sat/Sun due to the weather) but am afraid to take him outside for fear of dehydration (it's 105 degrees outside). He is still taking the breast well and seems to be feeding okay, despite the sleepiness.

Wednesday, August 26th:

                      ***WORST DAY OF MY LIFE TO DATE***

Day of reckoning for Kim. I have to take out the cath at 7:30am and then be at my ob's office by 9:30 to prove to him that yes, I am able to pee on my own.

9:30 comes and goes and guess who can't pee? Yup, that would be me. George takes the liberties of scheduling me an appt with a urologist just down the street from his office. Brian and I call ahead to make sure we have the right office number, only to be told the doctor is in the Henderson office on Tuesdays. Whoops. Brian and I make the long trek to Henderson (and this was DEEP in Henderson, or Hender-tucky, per Brian). I am getting increasing uncomfortable for two reasons - 1.) I need to feed Scotty soon and 2.) I haven't been able to go to the bathroom in almost 4 hours and I drank a bunch of water in anticipation of the big event.

We get to the UR's office only to find a waiting room full of old men. Our appointment was at 11:00am; by 11:30, I am crying and begging the staff to let me use a room to feed my baby. They consent. With Scotty fed, I start to calm down a little.

By 1:00pm, I was a wreck. Again. We had to cancel the ped appointment since we were still deep in Hender-tucky and I was out of my mind with pain of a full bladder. I was crying and rocking in the waiting room when they finally took pity on me and took me back. Five minutes and one bladder empty later, I was much saner, until the UR told me that he would NOT be putting an in-dwelling cath back in, but instead, I need to learn how to "self-cath" until my bladder "wakes up."  I am near hysterical as I get him for a foley (in-dwelling) cath, stating I am a new mom with a crazy feeding schedule and really don't want to worry about self-cathing at 4 in the morning with a crying infant. He tells me that it is much more painful for men to cath (like I care - try having a baby) and that it's like "riding a bike." Against my better judgment, I consent. And then they show me how to do it. Ewwwww.

We finally get home, exhausted and overwhelmed. Around 4pm, the LC from Monday calls and asks how Scotty is doing. I tell her about his poop and urine and just general lethargy, and she then tells me, in the scariest tone of voice possible, to get the ped's office immediately. Brian and I move lightening fast, calling the doctor, getting Scotty bundled, and are out the door in four minutes.

The doc orders blood work as I breast feed in her office. At this point, it's 5:30pm and there are no blood centers open, except for this scary one on the east side of town. We head home to allow me to self-cath (took 20 minutes but I did it) and then head out to do blood work. The ped had told me the on-call doctor would call us that night with Scotty's results.

We are home by 8pm and I'm attempting to feed Scotty for the 29th time that day. He just wouldn't wake up. We switch to the bottle with breast milk to make it easier. He is still fussing. I'm exhausted, frustrated, and now, I have cut off my fluid intake for fear of having to self-cath again. Our house is a trainwreck and there were literally piles of laundry everywhere. Emma had officially stopped talking to us (and rightly so).

At 8:30pm, we received the most terrifying phone call of my life: it was the on-call ped. He said, and I quote, "His bilirubin levels are 28. You need to get him to an ER immediately." Anything over 14 is considered too high, and 35 was the point of no return (neurological damage). Scotty was getting yellower by the minute. Apparently, he was not pooping out the bilirubin and so it was building in his system, causing the jaundice.

I rush upstairs to pack a bag while Brian packs Scotty in the car seat when the phone rings again. Ped again, and this time he says, "Have you noticed any changes in his mental state?" I said, yes, he's not waking up. We've been trying to feed him for over a half hour. At that point, he said words I will never forget:  "Call 911 RIGHT NOW."

Even typing this, I am crying. I still can't believe it. We had to call 911 to have an ambulance pick up our little guy. They were here in minutes and we were on the road immediately. Scotty hadn't stopped breathing but was completely unresponsive. They put oxygen on him right away and attached the little heart monitors. I cannot describe to you what it feels like to watch people work on your child - your child who is not even the size of a football yet. I was in the front seat of the ambulance practically hyperventilating. They used lights and sirens to get through traffic and we were taken to the hospital in town with the only children's hospital.

Brian, some how, was able to follow behind and met us in the docking area. They wisked us in and there were 20 people in the room instantly. all doing different things like drawing blood, checking vitals, etc. AFter he was declared stable, Brian and I were taken to a quiet room to discuss the baby's condition, and when the doctor asked me if I would like some water, I burst into tears again. I told her the whole sob story about the catheter situation. She took pity on me and walked me over to the adult ER to get yet another catheter after we were done telling her just about every detail of Scotty's nine days of life.

Brian stayed with the baby while I was in the other ER, and I will admit, it was fascinating. The place was hopping for a Wednesday night. The guy next to me was suicidal, and I was so tempted to start talking to him. (I haven't done a suicide risk assessment in months.) I eventually was placed in a room with a nice Latino family that had been in a car accident. I finally got the damn cath and was out the door and back to our little guy in the ped ER after I threatened a nurse I would leave AMA if I didn't get my discharge orders in the next 5 minutes. She understood the situation and thankfully, expediated the situation. 

Today, August 27th,

Scotty was transferred to the NICU and more blood work was done.

From what the doctors have said, they are still ruling out any kind of infection and metabolic disorders, but it looks like a straightforward case of dehydration and jaundice. (we are praying it is this straight forward and easy to solve...please, no metabolic disorders.)   Scotty was put under the lights right away and also given two boluses to rehydrate him. He will probably remain in the NICU for the next several days. His bilirubin levels are already dropping - at 3am, he was at 21, at 7am, he was at 19.9, and 10am he was 19.3. By the time we left tonight (7:00pm), his level had dropped again to 16. They really want to see him under 14, but want him to be more active and less floppy. Brian and I were able to feed him and hold him today, but only for 30 minutes.

I am still kind of in shock about all of this. I went back and looked through his feeding record and went over it with the doctor this afternoon. Even on the 19th, when we were still in the hospital for his birth, he only had 4 wet diapers. He should have had 6-8. The doctor surmised that he, for whatever reason, began to dehydrate at the hospital, my milk didnt' come in until day 5, and by the time he started to feed in earnest, he was already behind the eight ball. She assured us that there was nothing more we could have done, but I disagree. There were so many missteps along the way, and I am kicking myself for not picking up on them sooner.

I just cannot believe we are in this situation. I am so thankful that 1.) we caught it and 2.) the LC called when she had - had we waited until today (Thursday) for his ped appointment, it, well...it might have been too late. I cannot let myself go there. Or I will simply fall apart.

All I know is that right now, our little guy is safe, well-hydrated, and seems to be on the mend. The nursing staff is amazing and very kind, and we are anxious to get back to him tomorrow. (he's in isolation and we are not allowed to sleep over). He hasn't been cleared for some things yet, like MRSA, so we need to gown up before we go into his room - gown, mask, gloves, etc. It all feels so distant and scary.

But Scotty did open his eyes for several minutes while I was holding him, and he seems to perk up at the sound of my (and Brian's voice). When we couldn't hold him (earlier in the afternoon), we just sat there in the room talking, so he could hear our voices. Brian suggested that he tell him the story of how the Green Bay Packers came to be, and I agreed to play the part of Scotty (and ask potential questions he might have asked, if he had language skills). His little heart rate settled down while we were talking and I'd like to think he knew we were there.

We are hoping he continues to make great progress and will be home with us in the next several days. Again. both conditions are 100% treatable with no long-lasting affects. I'm not quite sure how I feel about breast feeding at this point, since I am absolutely shell-shocked, but we'll cross that bridge when we get there.

Big thanks to everyone who has sent us such lovely gifts over the last few days --- our house is literally brimming with flowers, cards, books, bears (Boschee bear! I love it), baby clothes, baby blankets, and my personal favorite, Lou Malnati's pizza (Krista, was that you???? It didn't come with a card). Thank you notes will be forthcoming, but please don't hold your breath. Think...September.

I'll try to keep everyone updated if you are interested. In return, please keep our little guy in your thougths and prayers.
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The Pregnancy Diet

8/25/2009

0 Comments

 
I hopped on the scale today. Since little Scotty's birth, I've lost 25 lbs.

Yes, you read that correctly. TWENTY-FIVE pounds.

This is the best diet EVER. No sleep, no food,  but instant results. Heck yeah.
0 Comments

What day is it?

8/24/2009

1 Comment

 
So much to write. So little time. So little sleep.

I can't even keep up on what day we are on. Last check, it was Monday, but I couldn't tell you the date. I'm assuming we're still in August.

We are living life two hours at a time. For those of you who know, one of Brian's favorite (and my LEAST favorite) movies is 'The Fast and the Furious.' In it, Vin Diesel tells Paul Walker the he lives life a quarter mile at a time (the length of a 10-second drag race in a fast car.) Well, Vin Diesel should really try breast feeding because that two hour window is way faster than any souped-up Nissans. It is seriously a race from feeding to feeding - sleep, eat, clean, wash stuff, wash self, snuggle with baby, stare at baby, pray baby does is not cold, in pain, or any kind of general discomfort. Attempt to appease cat. Talk to various friends/family members. Forge for food. So much to do.

Will write more later. I really want to dedicate an entire entry to bodily functions. Fascinating yet scary. Who knew the human body was complex?
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L&D Trip #7 - the Jackpot!

8/19/2009

6 Comments

 
I should have known...living in Vegas, it would be trip #7 to Labor and Delivery that did the trick!

There is so much I want to say right now - I have been blogging mentally in my head for the last 60+ hours, even during the pushing phase of labor- but am in that official 'mom' phase where I don't have a moment of free time and my brain is so soaked in prolactin that nothing is making much sense. I have a little 8lb, 6oz bundle of perfection that has captivated all of my attention and quite rightly so. He's so freaking awesome I can't even describe it. Considering how stressful the pregnancy was, the delivery was nothing short of amazing, all the way up to little Baby B (now aptly named "Scotty") entering the world.

I'll try to give you the basic details since Brian and I have yet to call/talk to many people - sorry, we're just trying to find our footing here in the new world of parenthood. We probably won't be easy to touch base with for the next several days, and I'm sure you all understand. Thank you for all of the wonderful text messages, Facebook comments, emails, and phone calls! We feel so loved right now.

Anyways, here's the short version: went to my appt. with Dick on Monday as scheduled. WIthout going into vivid details, as Kelly's update post mentioned, "interesting" things were happening. It involved lots of bodily functions and something the size of a small body organ falling out of me while in the hallway of the doctor's office. Seriously. This thing (technically a blood clot, per the nurse) fell out, bounced off my foot, and landed on the hardwood floor.  It was the size of my fist. I thought I was going to pass out, but the nurse was quick to calm me down and send me to the hospital. I don't think I'll be wearing those flip-flops again.

Both docs decided this pregnancy was getting dangerous, and I had the hoice of a c-section that day or trying to go natural (with induction). Per Kelly's posts, I rolled the dice and opted for natural (with an epi). By 8pm Monday night, I learned that LABOR SUCKS and women who go med-free really do need a ticker tape parade or at the very least, a national holiday. The epidural was given by a nice man with a lovely New Zealand accent and I'm fairly sure I proposed to him on the spot. Mmm, pain meds.

And then at 12:30am, the damn thing wore off. Ironically, at 1am, I was 10 cm and ready to push. Holy heavens to betsy. It took about an hour of pushing, and one comment from George to bring Scotty into this world: "One more push, Kim, and you won't be pregnant anymore." Oh, that was ALL he needed to say. That was the push that brought our little man into the world along with about 27 gallons of fluid (all of which that ended up on George.)

We were discharged earlier today after less than 48 hours in the hospital. I feel great - and happily deflated. Scotty is more amazing and beautiful than I ever imagined. Watching he and Brian cuddle seriously makes happy charges explode in my brain. Breastfeeding is off to a fantastic start.

I think I'm still delirious from pain meds and adrenaline, but I hope this feeling never ever wears off. My little monkey is calling right now - time for another feeding - but thanks again for reading! I hope you have enjoyed reading as much as I've enjoyed writing. I've gotten a lot of questions as to whether I will continue to write after bed rest is over, and the answer is a definite yes.

Oh and quickly - Scotty's cousin Ben came into the world 6 hours after Scotty did, weighing in at 7lbs, 10oz. Kelly is a super star for blogging for me just hours before her big day. They've had some complications up in MN, but at last check, things were on track and Ben is doing great. Keep sending those prayers up there!
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