Coburn Kids

The other week we FINALLY received the girls bunk beds. So on Friday night we had the project of building them for the girls. My helpers consisted of all my girls including Darwin for moral support. It took a while to build them, simply because the size and it’s awkwardness. Mommy was the most help especially when we realized we had placed one of the top bunk pieces on the wrong side. The girls are in love with them. For the first time in a long time, they raced to bed. But here are a couple lessons learned.

1. Kids on the bottom WILL kick the top bunk bed
2. A regular mattress is about 1/2 too short so be careful
3. Sheets are much harder to change
4. Ceiling fans are not your friend!

Also on Sunday, I was able to give the girls a nice surprise.  Mommy and I picked up some Princess sheets and fleece blankets for them and I made them wait patiently (NOT!) in the other room while I prepared their surprise. They ran in like it was Christmas morning.

I decided it was time to write about Caden’s birth story and the how’s and details of why he was born so early.  Unlike Genevieve and Adessa, Caden did not decide to come early on his own.    On July 25th I went up to the University of Utah hospital because I was having severe pain in my upper abdomen. They did a 24 hour urine test for protein, drew labs and monitored me for the day while doing multiple non-stress tests on the baby, multiple ultrasounds on the baby and ultrasounds of my upper organs as well.  At this point we found out that our baby, who had been measuring a week ahead at our 20 week ultrasound, was now measuring a week behind at his 25 week ultrasound.  This didn’t seem like a cause for concern at the time as it’s not an exact science. I had been having high blood pressure but while in the hospital I stabilized and was released.  I had instructions to make a follow-up appointment with my OB/GYN on Monday.

All that weekend I had extremely high blood pressure of 160/110′s and when I went into my OB/GYN on Monday, July 30th, I realized that I needed to be a bit more forceful with my doctor as I knew that something wasn’t feeling right.  The Dr.’s nurse registered my blood pressure as normal but I knew it couldn’t be right.  The protein dipstick was also registering at a +3 for protein. I asked my Dr. to retake my blood pressure and was at 171/109.  He immediately had me go over to Jordan Valley Hospital’s L&D so that I could be transfered up to the U of U Hospital by ambulance.

After getting to the U of U they started me on Magnesium Sulfate (very nasty stuff that makes you tired, weak and nauseous but is used to prevent seizures and relax the uterus). They restarted another 24 urine test and took more labs. I wasn’t having any pain and my blood pressure had come down by then.  I really thought I was headed for another discharge until 5 doctors; 1 perintologist, 3 ob’s, and a NICU nurse all came filing into my room.  My blood platelets had fallen to 109,000 (normal range is 150,000-400,000 and blood platelets are used for clotting in your blood.) They explained that if I fell below 100,000 they would have to deliver the baby immediately as I ran the risk of hemorrhaging. The doctor’s stated they were “very worried” about me.

The next day I continued to baffle the doctors as my liver enzymes were coming back normal, they had started steroid shots on me to help the babies lung development which increased my blood platelets, my urine wasn’t registering high protein, I had no headaches/pain/visual disturbances but they knew something wasn’t right.

On Wednesday I was feeling fabulous.  They had started me on blood pressure medication, I was still on the magnesium sulfate and after nearly 28 hours of not being allowed to eat I was finally given lunch at 2pm.  I thought for sure I was headed for a discharge, though the doctors told me later that they hadn’t had any plans to release me as they knew something wasn’t right.  Daniel showed up at 5:30pm, as did my dinner. I felt sick as soon as they both arrived and couldn’t eat my dinner. By 6pm I was in extreme pain and they told me it was either indigestion (I laughed as well as I could) but that if the pain medication they gave me took the pain away then it was probably my liver.  The pain medication, which made me very loopy, worked but it was just a quick short-term pain med.  They gave me an upper GI cocktail, which did nothing.  Then they started me on morphine.  By this point I was in more pain then I had every thought possible that radiated from my upper abdomen to my right shoulder.  They started me on 2cc’s of morphine, then 2 more, then 4 more, then 2 more, then 2 more all within an hour… nothing touched the pain anymore.

They checked my cervix and my body knew something was going on as I had started to efface, so they were going to try to induce me.  They brought me into L&D for an induction while I was still in pain.  They gave me another shot of the fast-acting pain med and then started me on an epidural. The epidural didn’t touch the pain either. By this point I was so drugged up on so many pain meds that everything gets blurry.

Within an hour of entering L&D the doctor’s came in and immediately started prepping me for an emergency c-section. My liver enzymes had jumped from 40 (normal) to over 700 in just a few hours.  My blood platelets were falling again and my liver was in danger of rupturing. They gave Daniel some scrubs and they prepped me for the c-section.  I was having trouble focusing and being coherent.  I kept trying to ask questions during the c-section and only maybe 1 or 2 was understandable. As soon as they opened me up the pain stopped and they delivered little baby Caden at 11:50 PM on August 1, 2007 weighing in at 1 lb. 11 oz. and 13″ long. They checked my liver and other organs after delivering him and they were fine.  So good news.

After surgery, I found that my blood platelets had fallen to 40,000 (spontaneous bleeding starts at 20,000). So for the next 3 days they couldn’t take out the epidural. My blood pressure will take a while to come back to normal so I’m still on medication. I’ve never been so tired in my life as well, since while you’re on the magnesium sulfate they literally have to check you every hour for reflexes and your vitals.  So, quite literally, for 4 days I had no sleep. The nurses were just dolls though and they all came in to see how I was doing the next day.  One of the nurses commented they had never seen anyone go downhill so fast as I did.  It was officially HELLP syndrome and I’m just grateful that we were in the right place and that Daniel was with me when everything happened so quickly.

Caden is small for his gestational age as he wasn’t growing for the last 2-3 weeks in my uterus while my body was having all these problems. He was able to get through the entire 48 hours of steroid shots though, and while he’s having some difficulty coming off the high frequency oscillator (a type of ventilator that provides constant pressure to the baby’s lungs to keep them inflated with air) he’s hanging in there. He’s not doing as well as they would expect at this point but his Daddy and I just adore him. Genevieve and Adessa are insisting on taking another trip to see him all ready as well.

My follow-up appointment with the Maternal Fetal Medicine Specialist, Dr. Esplin, went well and they are running a few more blood tests to check for any abnormalities with my veins. It was very clear that I should probably not attempt anymore pregnancies for several reasons. They had to cut me high up on my uterus because it was so small so I have a chance of uterine rupture if I were to get pregnant, I also have a high risk of developing HELLP or severe pre-eclamspia next time as well since it hit so fast and early with this pregnancy. My blood pressure is coming down though and I shouldn’t have any long-term effects from any of this.

I have my 3 beautiful preemies, Daniel and I can’t do anything normal. We have a long road ahead of us over the next several years full of numerous doctors, specialists, surgeries and hospital visits but Daniel and I thrive under stress. We are both so grateful to have such a strong support system full of family, friends, and our wonderful church ward. We’ll continue to keep everyone updated on our journey.

Caden is not doing very well today. His oxygen levels have been up near 100% for hours and while Daddy and I were visiting him he was in the 60′s but was headed up into the 70′s by the time we left. The doctors are puzzled why his oxygen requirements keep fluctuating so much. They tried weaning him off his Flolan without success, they are giving him hydrocortisone because his cortisol levels are low, he started vomiting some last night so they have reduced his feedings to a continual drip versus a larger amount every 3 hours.

Daddy and I enjoyed our visit with him though. Gave him a little pep talk and hopefully we can see him grow more stable tonight.

Tonight we headed out to Rocky Mountain Raceways with Genevieve and Adessa.  They loved it.  We bought them ear mufflers and they had a blast. It was loud, noisy, and the cars were fast so pretty appealing for a 5 and 3 year old.

Caden is doing really well right now.  His oxygen levels are stable, they are trying to wean him off his medication again, he hasn’t had to go under the bili lights either for the last several days. They did another blood transfusion today just to bump up his red blood cells, I think we’re at 7 now. They’ve upped his feedings more and they are taking him off the nutrient IV just to see how he does being strictly on milk. So good news all around.

Daniel and I will be going up tomorrow to see the little guy and spend some time with him. My parents have just been fabulous with helping us out, watching the girls and more. It’s a minimum 45 minute drive up to the hospital so heading up to see him takes quite a bit of time. Thank you mom and dad.  

Daniel and I headed up to see Caden last night as my parents took Genevieve and Adessa to Cherry Hill for a picnic with their ward. It was a busy, busy day in the NICU. There are 5 babies in their now and the little one next to Caden wasn’t doing too well last night, you could feel the tension in the room. Caden’s oxygen levels were still down in the 40′s, they haven’t started to wean him off his medications yet, his heart rate was a bit high last night and his urine output is still really low. His blood sugars were extremely high last night so they had to give him 3 doses of insulin. Oh! and the good news, after a suppository and 2 enema’s Caden finally had his first bowel movement.

Caden’s weight last night was right around 2 lb. 9 oz. and he doesn’t look as swollen anymore. He still a funny little guy who does not like to be messed with.  He starts to desat and tries to open his eyes whenever you have to do something to him. His daddy and I just adore visiting him.

All right, so Caden is now 2 weeks old (yeah!) and he’s doing a lot better.  Jason and I actually went up to see him last night briefly but they were admitting another baby so we had to cut the visit short. His oxygen settings were down in the 30′s last night and they have been trying to wean him off his blood pressure and some other med’s.  That didn’t go so well so they are just going to keep him where he’s at right now.

This morning we called and got our update and Caden had gone up to 100% oxygen, his primary nurse Jeanette stated that she tried suctioning his tube and got a bit out. As soon as she did that he dropped back down into the 40′s again. Good news. So Caden is improving. He’s taking in 20 cc’s a day right now and they are upping his feedings to 30 cc’s.  They are hoping this will stimulate his digestive system to get things flowing. Hopefully Daniel and I can make it back up there tonight but all-in-all Caden’s improving.

Today’s visit with LeAnn Rolling, Cleft Coordinator, at Primary Children’s Hospital went very well. LeAnn showed us before & after pics, talked to us about feeding and showed us the special bottles and nipples that Caden will need to eat. We also discussed insurance options as Daniel and I are thinking long-term and are a bit concerned that Caden may reach his lifetime maximum through our private insurance.

We then headed over to see our little guy (Primary Children’s and the U of U are right next to each other) and he’s doing a bit better today.  His vent settings were at only 40% and they are weaning him off the Nitrous Oxide. He’s back under bili lights, not surprising since he hasn’t had a bowel movement. He’s still not doing as well as they had hoped by this point but he’s improving.

We also discussed with LeAnn and Caden’s doctors what will happen when he’s ready to be weaned from the vent, as he can’t use a CPAP because of his bilateral cleft lip and palate.  There’s still no plan of action there and it’s a wait-and-see game so Daniel and I are interested to see how that will be managed.

Well Genevieve and Adessa were able to meet their little baby brother tonight. They were both very excited and very good while in the NICU. Daniel took Adessa in and she made comments about how tiny he was and how cute he was. I took Genevieve in and she asked lots of questions about the equipment and what it all did. She commented on how little he was as well and that she liked seeing him. She didn’t want to leave!

On to the update, Caden isn’t doing so well today. His oxygen is up to 95% now, they didn’t see any signs of the pulmonary hypertension on his echo or x-ray this morning so they’ve lowered his medication. They literally can not figure out what is going on with his lungs and gases and why they are having to give him so much. The neonatologist stated that last night they thought they had it under control with his oxygen settings down to 40% but he just keeps widely fluctuating and they can’t pinpoint what’s going on. They have him on antibiotics but his blood counts are good, they are trying to up his morphine to sedate him more, he’s under the bili lights again for jaundice since he hasn’t had a bowel movement yet, they are trying to give him as many calories as they can through his central line since he has so many other fluids going into him.

Daniel and I see the Cleft Coordinator at Primary Children’s tomorrow at 8:30am. Afterwards we’ll stop by and see Caden for a bit and check up on him. Updates on those visits soon.

Daniel and I went up to see Caden today while my Dad took Genevieve and Adessa to church. Caden is a little worse for the wear as because of his pulmonary hypertension they are starting him on Flolan, a medication to open up his lung vessels but it has the side effect of lowering his blood pressure; so they have to start him on Dopamine as well to raise it. The right side of his heart is also starting to become a bit enlarged because of the extra pressure that’s being placed on it.

He had yet another blood transfusion today, we are up to 5 at last count. They had to wait to start the Dopamine until the transfusion was done as he’s literally run out of lines into his little body. He’s been fluctuating all day on his oxygen settings, as low as 30 and as high as nearly 60.  He was doing exceptionally well, the “mommy & daddy affect”, while we were there and we were able to speak to the neonatologist, a fellow, his nurse and the doctor.  Caden has a lot of “visitors” in that regard. They’ve had to do yet another PICC line as well, it’s a more permanent IV that doesn’t have to be replaced as much and leads to his heart. 

Tomorrow is an exciting day as we’ll be able to bring Genevieve and Adessa up to see Caden for the first time.  We are really looking forward to that, as are the girls.  We’ll be sure to take pictures and hopefully our little guy will be doing better.

Daniel, Grandpa and I all went up to see Caden tonight.  It was very special, Daniel got to change Caden’s diaper and then I was able to take his temperature, weigh him, and hold him while they changed his bedding!  It was awesome.  He does not feel even 2 lb.’s.  He did so great while I was holding him as well.  Trying to open his eyes and look at me while I was talking to him.  Apparently all day he had been having desats (where his oxygen level goes down in his blood) while they moved him or took x-rays.  But while mommy was holding him he did exceptionally well and they actually had to turn down his oxygen levels.

The Dr. stated that they cant figure out what’s going on with his lungs.  Caden is keeping them busy since they have to constantly readjust his oxygen levels all day.  They’ve had to stop feeding him because of his pulmonary hypertension and they’ve started his morphine on a drip to keep it more constant. Besides that his white blood cell count is up, his blood pressure has looked good all day, they’ve done another echo, and he lost 10 grams.  Which could be a good thing because hopefully it means that he’s getting rid of some of that extra fluid.

I posted a really great picture of Caden today.  You can see his face and his bilateral cleft lip really well. He’s such a trooper. Caden also has 2 IV lines in his head now, poor little guy has IV’s and lines coming out of every limb and now his scalp. 

Genevieve also has a bit of exciting news, she’s getting her 6 year old molars! She complained the other day that her mouth hurt and when I looked inside, there’s another tooth growing in.  I can’t believe how quickly she is growing up, becoming such a big girl and she’s so great at helping her mommy around the house.