11 Weeks: Cystic Fibrosis Test

May 31, 2011 at 4:43 PM | Posted in Baby Romaezi, Uncategorized | 1 Comment

Today I’m blogging from the medical lab with a very unhappy baby in my arms. Don’t let this blog title get you too panicked. Kamran had an ecogenic bowel in utero. While I was pregnant the doctors speculated that Kamran swallowed my blood since I had hemorrhaged and assured me not to worry. When he was born, the neonatologists in the NICU told us that babies with what is medically called mieconium ileus (pardon my spelling) also have a small chance of having Cystic Fibrosis. Kamran had the state mandated test and it came back negative–twice. But those supposedly are not 100% accurate with more false positives than false negatives. So they did a sweat test when Kamran was a few weeks old. I was told that they simply put electrodes on his skin to cause him to sweat. No biggie, electrodes were on his skin daily to monitor his heart rate, respiratory rate and oxygen saturation. The problem? Infants don’t sweat. Thus, Kamran didn’t sweat and had to have the re-test done as an out patient. So here we sit and learn that the neonatologists are big fat liars this test is not as simple and stress free as they led me to believe.

Yes, they put electrodes on his skin but these are not the teeny stickers he lived in the first month. These things are about as wide as his little arm and he HATED having them put on. We started with two electrodes on each arm for 5 minutes to make him sweat, then those came off and the sweat collector had to go on and stay there for 30 minutes. They strapped one on each little arm and then wrapped it in paraffin and my little boy haaaated it. 5 minutes with a screaming infant is an eternity, I couldn’t imagine 30. Thankfully I could nurse to calm him down during the sweat collection portion of the process. After 30 minutes the tech came to check the sweat and luckily Kamran did sweat this time. The bad news was that only one arm collected because of poor positioning of the collector. That meant we had to repeat the process on his legs. I wasn’t happy about that but didn’t want him to go through this yet again if there wasn’t enough sweat collected. The legs were a ton easier to work with since he isn’t quite as fascinated with those at the moment as he is his hands. Not sure why we didn’t start there. He still wasn’t happy but was much easier to soothe. Half way through the sweat collection process on the legs a gradma-like lady came in to pick up Kam’s sweat to take it to the hospital lab. She explained that she used to do the entire test start to finish but they were putting her “out to pasture”–her words, not mine–and she only processes the collected sweat now. She was super nice and talked to Kamran, which he loved. He even chuckled…not sure if it was at her or the light but laughing isn’t something he does often yet so I got a kick out of it. We have a very serious baby on our hands.

The entire process took 2 hours from start to finish and Kamran was pooped. He slept the entire car ride home and stayed asleep in his car seat long enough for me to eat lunch, unload and load the dishwasher and spend 20 minutes pumping. Then he woke up at 2:30 on the dot, when it was time to eat. We even made it to the grocery store today.

The rest of the week is packed with appointments. Daycare tour, pediatric surgeon for his hernia and the pediatrician for his 2 month shots and a weight check. He only gets the shots if this cold is gone and I’m really not looking forward to those.

After I wrote this blog yesterday, Kayvan told me I couldn’t post it until we got the results of the sweat test back. I was never worried about these results. I’m not a carrier for cystic fibrosis so the chance of Kamran having it was near impossible. I got results today and Kamran does NOT have cystic fibrosis.

Now that it is Wednesday, I can tell you that the daycare tour went well. We met Kamran’s “teachers” who are very nice. Kam slept in his moby wrap the entire time. Boy loves that thing and so do I. I can totally wait for my maternity leave to be up. I haven’t worked in 5 months. I miss it but am worried about how I will handle all of it.

We also met with Kamran’s pediatric surgeon today who confirmed that Kamran WILL need surgery. I have prepared myself for this. I’m not thrilled but know we have selected a very skilled surgeon. She will repair the inguinal hernia on his left side and while Kamran is under anesthesia will check to make sure the right side doesn’t need to be repaired. If it does, she will fix that too. Kamran also has an umbilical hernia. Those ordinarily self-correct. In instances where they don’t, they are repaired at age 3. The surgeon will be repairing the umbilical hernia too so we don’t have to put him through this again later if the umbilical hernia does not self correct. You may be wondering why Kamran needs the surgery at such a young age. The inguinal hernia could get incarcerated…stuck. If that happens it is very dangerous for Kamran for a number of reasons and would require emergency surgery. It is always better to have planned surgery if you can help it, especially with a teeny guy. It took forever to get in with thus surgeon. She says we need to schedule his surgery ASAP, so I imagine it will all happen rather quickly now that we’ve had our consult.

Kayvan and I can’t wait to learn Kamran’s weight tomorrow. He has his 2 month shots and that I can totally wait for those.

Developmentally Kamran’s personality is starting to come through. We get lots of smiles, occasional laughter and even some frustration. This morning I got screamed at because Kam wanted to sit upright and stare at his window–I originally had laid him down. Lesson learned.


10 Weeks: Perfecting the Pouty Lip

May 25, 2011 at 2:56 PM | Posted in Baby Romaezi | 2 Comments

Well, now that we have real tears the next step is a perfectly protruding lower lip. Our boy has perfected the pout for sure. I guess we can call that step 2 of wrapping mommy and daddy around the little finger. I have to say, once he learns to manipulate us, that lip will get him pretty far. It’s really cute. I have yet to get a picture of it yet but am sure that I will with time.

Kamran went to the cardiologist on Tuesday and the appointment went well. He was born with a few preemie heart issues. One resolved itself (the PDA) and two remain. The one we are concerned about is the atrial septal defect or ASD. At birth the hole was 5-7 mm and considered medium on size. Thankfully the hole has shrunk to a very small 2 mm. We follow up in a year to check progress. Hopefully it will be fully resolved by then. If not, he may need a simple catheter procedure to close it. Kam did pretty well at the appointment when we got there ge screamed and screamed…and screamed. Turned out he wanted to eat an hour early. So I fed him while they stuck about 9-10 electrodes on him to monitor his heart rate. Everything looked fine so we moved to another room and met the cardiologist. She had met Kamran but I didn’t meet her because Kam was in the NICU when the EKG was done the first time. She drew pictures and made sure I understood what was going on. Kamran fooled her into thinking he was an easy baby. He stared at his best friend the window and cooed the entire time. We then moved into the room with the EKG where Kamran was completely content staring at the fluorescent lights…until the tech turned them off. I managed to distract him with the light on my phone for a little while but eventually he had enough and made it known. It was nothing like the ultrasound on his hernia. Now THAT. Was bad.

Kam also got his first cold this week. A cold in the spring. I caught it from the pediatrician’s office I think. And of course, he got it from me. He’s been really stuffy but has been sleeping in his bassinet at night. I can’t put him down during the day but other than that he is doing well.

He also got his first diaper rash. Stupid pampers baby dry. Now that Kamran is officially in size 1 at the ripe old age of 2 months, we were using diapers that a friend’s little boy grew out of. Well, they were no bueno for Kam’s butt. Oh well, at least they were free.

We skipped our walk with my friend from the hospital again this week. I didn’t want to get her or the babies sick. We will resume our walk next Thursday for sure.

Oh, and Kamran is closing in on the 9 pound mark. On Sunday he was 8 lbs 11 oz. Tuesday he was 8 lbs 9.5 oz. According to that math he lost weight. Considering he was measured on 2 different scales, I’m not so concerned.

Little man loves to kick his legs and spends lots of time with his hands open. He loves all windows and lights and prefers them to actual toys. If you put a toy in his hand he holds onto it for quite some time and will even occasionally grab at toys on his play gym.

UPDATED to include the overdue Cinco de Mayo photos: http://theromaezis.smugmug.com/Family/Kamran/16237032_y3GA4#1309721829_HBCVnKt-A-LB

9 Weeks: March of Dimes Walk

May 18, 2011 at 3:35 PM | Posted in Baby Romaezi | 2 Comments

Kamran is 9 weeks old, 8 lbs. 3 oz and has a head circumference of 14 inches. The doctor was pleased with his growth since last week but of course, would like to see him start to catch up with babies born full term. Kamran’s doctor was also very pleased with the fact that Kamran rolled over a few weeks ago and again last week. When the doctor put him on his belly he got really angry but also pushed up onto his forearms (something I haven’t seen him do much at home yet) and lifted his head to look at the wall in front of him. When he was flipped to his back, the doctor grabbed his hands and pulled him to the sitting position and Kamran’s head came with his body. He has great head control and tracks us when we come into or leave the room. Kamran loves to talk to daddy during play time. He coos and smiles and generally seems to like to look at Kayvan’s face. He looks at me too but I can tell he already adores his dad. Continue Reading 9 Weeks: March of Dimes Walk…

8 weeks: Mixed Bag

May 14, 2011 at 1:54 AM | Posted in Baby Romaezi | 1 Comment

It is my goal to update the blog every Tuesday. To achieve that goal, I wrote this on Monday fully intending to share a hat photo with you. The hat is done, I just haven’t taken the photo so I’m posting on a Friday night, 3 days after I wrote this. I’ll update with the photo later.

Lots has happened this week for us both developmentally for Kam and milestone wise as a family.

The middle of the week last week was rather uneventful which in this household lately is VERY good.
On Thursday I put Kamran down for tummy time and he rolled over onto his back over his left shoulder! In disbelief I cheered him on and put him back on his tummy and he did it twice more. I was shocked and put him on his tummy a fourth time and he rolled over his right shoulder as if saying “Yes mom, I really did just do that.” I texted Kayvan at work and he was of course upset he missed it. Kayvan and I made the attempt to get him to show daddy when he got home but it clearly was not a good time for tummy time according to Kam so we put him on his back and let him stare at the toys in the play gym. Kamran also celebrated his first Cinco de Mayo. Photo to come later.

On Friday Kam and I went for a walk with Sookie and when we came back inside I noticed that Kam’s right eye was watering. I chalked it up to allergies and left it at that. Of course, in the back of my head I was slightly sad because I knew that meant he was making tears and they would be here to break our hearts very soon. I just didn’t know how soon that would be.

Saturday we woke up to a crusty right eye, a clogged tear duct and a baby full of spit up. Kayvan fed Kam at 5 a.m. and when I woke up at 7 we put him in the boppy and whamo. Spit up. Kam likes to eat every 2 hours so I fed him at 7, held him upright and almost immediately I knew exactly how much Kam nursed because again it all came up. He spits up, no big deal but he has never spit up this much. Kayvan and I decided to watch him closely and see if it continued or got better. I also called the nurse line at the pediatrician about the eye and spit up just to be safe. I put a few warm compresses on his eye for good measure. It seemed to help. Sookie wanted to show Kamran off at the pet fiesta in Reston so we packed everyone up in the car and headed out for the day. I wore Kamran in the moby wrap. Can I tell you, that thing is SO much easier than pushing a stroller through a huge crowd of people. Kamran also loves to be worn so he slept the entire time. We eventually fed Kamran and then fed ourselves at the counter burger. If that place isn’t Kayvan’s favorite burger joint, it comes in a close second…but I think it’s his favorite. A storm was coming in and it was starting to get a little chilly so we grabbed gelato to go and headed home. Sookie had a BLAST. She loves going on trips with us and is a very well socialized little doggie.

When we got home I changed Kamran’s diaper and noticed a bulge in his groin area. Other than the larger than usual amount of spit up, Kam had no other out of the ordinary symptoms and no fever. The nurse from the pediatrician’s office had called back but I missed the call and she left a message about his eye and told me to put warm compresses on it which I was already doing. I had Kayvan look at the bulge and we agreed that I wasn’t a crazy first time mom to be so concerned. I called my friend Margaret who works in the ER at the hospital I lived at earlier this year to see if she would suggest going into the ER or if it could wait but she was on a hot date with her hubby. 😉 So I left a neurotic first time mom voicemail and then started googling hernias because Kamran’s amazing pediatrician told us to keep our eye out. I guess he expected this. After Dr. Google told me to go to the ER if the infant vomits, Kayvan and I decided to go to the ER. We probably would have anyway–and Margaret did call me back. So this weekend we checked “First trip to the ER” off of our list. I’ll add that page to his scrapbook soon enough. Poor baby had an ultrasound and screamed like I have never heard him scream before. This is where “baby’s first tears” come into play. Can I tell you how heartbreaking that was? He did clear out that clogged duct rather quickly, though. I felt so awful and wished it were me on that table instead. Kamran did get baby revenge and peed on the ultrasound tech (and me) 3 times. The good news is that the tech accidentally pushed the hernia back in when she was doing her scan and I brought a change of clothes because I’ve learned to plan for the worst and feared he would need surgery. The fact that the tech pushed the hernia in means it isn’t incarcerated and does not need surgery at this time. We were discharged from the hospital right around Kamran’s usual 10 pm witching hour and my goodness was that horrible. They made us withhold food, unsure of what the ultrasound would tell us. I had to feed Kam before we could go anywhere but after he ate, the boy screamed and screamed and screamed…and screamed. Eventually we calmed him down and went home…but not until the ER valet (yes, ER valet) tried to send us home with a Scion XB instead of our SUV. Pretty sure that one didn’t have the right car seat base. Once we got home Kamran screamed every time we changed his diaper. Either he remembered what happened the last time they had his diaper off, or the hernia really hurt him…I told it’s the latter. Oh and it popped back through by the time we got home. Ugh.

Sunday was great. We had Kayvan’s mom over for breakfast and Kayvan was in charge of the baby for the day. Kamran got me a massage–I cannot wait to utilize that thing. Kayvan kicked me out of the house for the day and told me to go to the mall. I showered and decided that I wasn’t ready to buy new clothes yet. I’ll save that for later when I hopefully lose these last 5 pounds. Instead I was going to go to Home Goods then the garden center and get some pretty flowers for our front yard. I moseyed downstairs to tell Kayvan this before I left, only to discover Kayvan asleep on the couch and his mom holding the baby. A-HA! I teased him that he didn’t invite her over to spend the day. He invited her over so she would babysit while he napped! Regardless, grandma is always happy to hold the baby. And it is a good thing because Kamran was quite uncomfortable and his screaming made it known. Kayvan’s mom left and our neighbors had people over for a cook out. They popped over the fence Mr. Wilson style and invited us the day before, so I wrapped Kam–the only way to keep him quiet that day and we stopped in for a few hours. A bit later in the evening I got my plants in the ground and we went to bed.

Speaking of bed. Kam has been spending a lot more time awake during the day and has started to get the hang of sleeping at night. We even got a 4 hour stretch out of him Saturday night he was so exhausted after the ER. AIr is still pretty hit or miss. Thanks to the hernia lots of misses but the 3 hour stretch nights are good! After visiting with the pediatrician for a follow up on Monday and learning that Kamran is now 7 lbs 9 ounces we’ve been given permission to let HIM wake US at night as opposed to the other way around, which we’ve been doing if he actually sleeps. Woo hoo!

This coming weekend we will be walking in the March of Dimes March for Babies if you care to donate. I’m about half way to my goal and would love to raise $200 this year. We’re late to the game on this one but just having had my preemie, we’ve been a little occupied. March of Dimes did so much for us in the NICU that I really want to give back, especially considering my 35 weeker could have been a 24 weeker if it weren’t for research and medical intervention. If you’re in the area, we would love for you to walk with us!! http://www.marchforbabies.org/jromaezi

7 weeks: 7 pounds 1 ounce

May 4, 2011 at 1:20 PM | Posted in Baby Romaezi | 1 Comment

We had our weight check appointment yesterday and Kamran is now 7 pounds 1 ounce. The size of your average newborn he is still itty bitty but at 7 weeks (2 weeks adjusted) he is now 2 pounds over his birth weight. Yippeee for growing.

As for that last growth spurt I mentioned, I can’t tell for sure but I think Kamran is longer. He’s filling out his NB sized clothes better now at least. I mean, it’s possible that I shrunk some laundry but I think growth is more likely. It was quite funny. The other day kayvan brought me a 0-3 month outfit to put Kamran in because he peed all over himself. His leggies were just too short to fit! Boy was swimming. I told Kayvan it would be another few weeks before we fit into that size.

We got out of the house yesterday and I not only drove with Kamran for the first time, but I drove solo with Kamran for the first time. We met up with one of my neighbors from the hospital and her beautiful twins, Henry and Claire. The twins were born exactly one week before Kamran and were in the same rooms as Kam during his NICU stay. Everyone was quite well behaved on our walk. It was such a beautiful day out too!

From there we went to the pediatrician, got Kams weight and because he gained, he also got a shot. Boy didn’t like that much. Kayvan went to make Kam’s follow up appointment as soon as the nurse pulled out the needle I called him a chicken. Kam didn’t like the shot and screamed. But he was screaming when I put him on the table because I took the bottle I was feeding him away. Sorry buddy. Kam did have a fussy night but that was thankfully only until about 11 and he slept very well last night. We’re all getting the hang of this sleep schedule thing.

Today it’s raining and I’m enjoying being able to snuggle with my super snuggler.

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