Surgery

I guess by now we should expect the unexpected. 

Early this morning Spencer's bowel did perforate and he was transported via ambulance to another hospital in Fort Wayne. Artie rushed home to get Avery and I and we headed to the hospital. I can't even describe the feeling. My beautiful boy has been through so much, why did he have to go through surgery? Just last night, the neonatologist and the pediatric surgeon said his xray showed a great amount of improvement and that he wouldn't be needing surgery...they were completely shocked by what happened too. I'm pretty much having an out-of-body experience right now. Knowing that my 9 day old baby just went through a serious surgery to fix a serious life and death issue makes me question the fairness in this world. 

I'll try to sum it up as best as I can...they went in and took the intestines out to see where the bowels were damaged. He had a small section of his bowel removed, luckily it was a part that only stores waste and won't impact him later on. He does have 2 stomas (openings outside the abdomen). One is for waste out of the small intestine and the other is for mucus and secretions out of the damaged part of his bowel that wasn't removed. He has these so that any food he eventually eats bypasses his bowel so it can heal. In 4-6 weeks, hopefully once the bowel has healed, he will have another surgery to reconnect the bowels. We have been told that some of his bowel tissue will grow back since he's an infant and he won't have any lasting effects. At the time of the second surgery he will also have a hernia repaired (that was caused by the air getting into his abdomen). He is on a respirator because of the pain medicine they have him on and hopefully that will come out in a few days. He is on 14 days of antibiotics, just in case. If all goes well in the next couple of weeks, we may be able to bring him home before his second surgery. We will have to learn how to change his ileostomy bag, but if that means having my baby home I will do anything. Hopefully his second surgery will be outpatient so he would only be in the hospital for the day. We don't really want to get our hopes up for anything right now because everything that has happened to him has been rare or shouldn't have happened. His type of blood intolerance-rare. His high bilirubin at birth-rare. His exchange transfusion-rare. His bowel surgery-rare (for a full-term baby, only 5% of these cases typically need surgery). I don't know what bomb is going to drop next.

Artie is going back to work this week. It is going to be challenging. Luckily, we do have a lot of people willing to help us now. The hospital we were at was only about 10 minutes from our house. Now, the hospital he's at is about a half hour from our house. Just another adjustment that we have to make. This hospital's NICU also has different visitor rules-very confusing-but Avery is not old enough to visit, so she won't be able to see her brother for at least 2 weeks. She calls for him all of the time and this is a pretty tough thing to have to deal with on top of everything else.

We do say how lucky we are to have such wonderful friends and family (even people that don't know us, fellow NICU parents, co-workers of friends and family, etc.) out there thinking of Spencer. We know you all are keeping our boy with us. We have nearly lost him 3 times in his short life and we thank all of you for helping him (and us) through.

Right now, we just wait. Everyday we pretty much start over. He seems to have handled the surgery well, so far, but we are by no means out of the woods yet. I hope that from here on out we are on the climb back up to feeling as wonderful as the moment he was born. 

On a completely different note, I want to congratulate Cindy for joining the blog world. I haven't had time to check any others blogs or leave comments (I'm hoping to really soon-I miss keeping up with all of you), but I did manage to see that she has her blog up and running and has pictures of her beautiful boy (of which I think looks like his daddy...). I am dreaming of the day when my boy can meet Mister Colten:) Thank you everyone!

Another Blow

I wish I was posting with good news...I'll keep the update short because I really don't have the strength anymore.

We thought we might bring him home today or tomorrow.  He had a rough night and this morning had blood in his stool. I apologize because I forget the medical term for it, but basically he has air in his bowels. They don't know the extent of the damage yet-another waiting game. Surgeons are on standby because if his bowel perforates, he will need immediate surgery. He is getting xrays periodically and we are basically just waiting to see if his bowel will hold up. This was a risk of the transfusion, but since he had been eating for 5 days, we thought we were out of the woods. In the meantime, we are also awaiting results on an eco because they detected a heart murmur. Yes, these are common in newborns, but given Spencer's situation, anything is possible. I really thank everyone for their encouragement. I know there comes a time when you just don't know what to say anymore. I have cried all day long. I really have moments where I think I can't go anymore. Spencer is back to having an IV-for antibiotics incase he does perforate or has an infection already and back to the stomach tube so they could pump everything out of his stomach. He will not be allowed to eat for a week-yes, that means he's at least in NICU another 7 days-if he has surgery, I'm not sure how long. So, we're back to barely holding him and him all wired up. I can't say enough how devastated we are right now, we are feeling completely numb and hallow. Avery keeps calling for her brother and my heart breaks every second. Please continue to keep him in your thoughts and prayers. We should know within the next day or so if the bowel will need surgery. Please God-let this be the last of the bad news, I need my little boy home. 

Setback

Yesterday, they took Spencer off of another light (so he's down to 1 light and a bili blanket) and removed his umbilical catheter. We were so happy and felt like we were making progress and would be bringing him home soon.  However, this morning, his lab came back showing that his bili went up again. He has a new NICU doctor this week and he's ordering a test tomorrow to see where the level of anitbodies are still in his system (the antibodies that the transfusion didn't get out). We're pretty much playing a waiting game right now. If that test comes back high and his bili goes up again, we could be looking at Spencer being in there for another week or more. If it's not high, and his bili goes down, then maybe 3-4 more days. I'm struggling so much trying to be with Avery and Spencer, they both need me. I feel like I don't even know my son and haven't had a chance to bond with him. We don't really get to hold him, only when he eats and then right back to the lights (plus, when we do hold him it's with his bili blanket-which is bulky, so he really doesn't get to snuggle with us or get cozy). So, it's very difficult because we aren't getting any bonding time and he just wants to be held sometimes. He's eating on demand, so we're at the hospital all day long then we bring Avery home at night to bathe her and put her to bed and I stay with her at night and Artie stays with Spencer. We eat when and where ever we can (though it's mostly just important for Avery at this point). Our parents have not been around for us at all during this, so we've pretty much been taking everything on by ourselves (except for Artie's sister-in-law and brother staying with Avery while I was in the hospital and my sister watching her a few times-thanks for all your help during that time!). 

Spencer is eating well and all other parts of his body, so far, are functioning great. He is pretty much a 'celebrity' around the hospital. Everyone knows about him because of the rarity of his situation. We know that Dupont (the hospital) has not done a transfusion like his in at least 6 years, maybe more-that's how rare it is. I feel so thankful that, being something so rare, they were able to help him and get his blood breakdown under control enough to let his body work to get rid of the rest. That's about all for right now, until we have the results tomorrow. I'm hoping this post even makes sense to everyone-I'm a little out of my mind right now and so heartbroken that I can't really think clearly. We are so thankful for the continued support and prayers for our little guy.

So Much...

...To be thankful for today.

This morning we had wonderful news from Spencer's nurse-his platelets went up, he was getting another lamp taken away (so he's down from 4 to 2 and still has the bili blanket), and we were going to get to feed him! He was finally going to start some food-he's been a starving little guy, but it was too risky to try and fed him to make his body have to work to digest the food. We hurried up to him to give him his bottle. We also were told that we were getting two half hours a day (1 hr. total) to hold him! It was complete heaven to feed him this morning and he loved every second too! It was so nice to have so much good news. We're still on a roller coaster and it's torture waiting for his results to come in. We had a bit of a setback this evening. After being taken down to 2 lamps, Spencer's bili count jumped from the 9 range to the 11 range. However, if he starts pooping since he's been eating, that number should come down. If it doesn't by his 6 am test, then he has to be put back on 3 lamps...so we're really hoping that his body does it's job and gets that number down. When we went back to fed him this afternoon, he had his stomach tube removed-so that was more good news-and he ate a lot better without it:)

Being discharged today was very hard for me. I feel guilty not being at the hospital every second with him. However, it is so nice being home with Avery. She loves having mommy and daddy back home. We took her to fed Spencer and she loved him so much. She gave him kisses and pointed out his eye for him and gave him pats on the head. It was very sweet:) 

We are so thankful for all of the support we have gotten, it is helping! Thoughts and prayers through this blog, well wishes from phone calls, family taking care of Avery...it is all so amazing to have all of you as part of our lives and you have gotten me through this. 

We were able to snap a few new pictures. Spencer's skin is looking much less yellow and I hope that it continues to look less yellow...we want him home! Artie will be spending nights with him at the hospital. I very much would love to do it, but given my current physical condition, the couch in Spencer's room isn't very accommodating:)  

I didn't want to post a full body picture of him all wired up, but his eye protectors are driving him crazy! So far, he has been a pretty calm baby-especially considering the circumstances-but this eye mask drives him nuts! He constantly tries to take it off with the splint on his arm that is keeping his IV in.

Mommy feeding him for the first time since early Wednesday. He was soooo happy to finally get this:)

Relaxing for the rest of his half hour with mommy after his feeding...very content:)

Wishing things were different...

Artie's enjoying some time at home, and away from the hospital, with Avery so I thought I would spend the time by myself posting instead of crying.

The last few days have felt like a nightmare that I just cannot wake up from.  I am so grateful that things aren't worse.  We were probably just a few hours from possibly losing our beautiful baby and so I am so thankful for the nursery staff being so quick to catch that something was wrong. My whole pregnancy I was constantly told that things looked great. When Spencer was born, he was given an apgar score of 10 (for us non medical pros, that's the highest!). Nurses couldn't say enough how healthy he seemed. Then, a few hours after he was born, he went to the nursery to be checked by the pediatrician doing rounds, he never came back. It was the worst moment of my life having the pediatrician come to my room without my baby. At that point he said Spencer was being admitted to NICU because his bilirubin count was near 13. For a baby only a few hours old, that was drastic (it ended up near 15 before his transfusion). He said a neonatal pediatrician would be taking over and let us know more. About 3 long hours later that dr. came to tell us that the issue was his blood and after doing blood work on him they had determined that I had passed him antibodies that he was incompatible with and his red blood cells were attacking themselves/breaking down very rapidly (I'm A positive, so this wasn't an Rh negative (RhD) factor, I believe it was RhE, which is very rare and I developed them while pregnant with Avery). The only way to save Spencer was to do a replacement transfusion. At 3:30 yesterday morning they came down to my room to get our consent on the transfusion. From about 4am - 8am, the doctor would take out 5 mL of Spencer's blood and replace this blood with 5 mL of the donor's blood. Once they were comfortable that Spencer was tolerating the donor blood, they finished the transfusion taking 10 mL and replacing with 10mL. He received 400 total mL. It's a delicate process because they have to time the transfusion right or you aren't taking out just the bad blood. It was a relief for that to be over.

Since he has been in NICU, we haven't been able to hold him, let alone barely touch him. Since he's under all of the lights, he has a mask on over his eyes-all you can see is his nose. I'm so afraid he's not going to know who I am. It has been sheer torture having my room on the postpartum floor. I have no baby to take care of and all I listen to are babies crying around me. I only hope the parents aren't taking for granted how lucky they are to have their baby with them. I think it's evil that I have to walk past the nursery every time I go to visit my baby-a long walk and a whole floor above me. Because of MRSA, I have to wear a gown and gloves when I do go into his room, I don't even get to touch him with my skin (hopefully that freakin' test comes back later today negative so I finally get to feel his skin again).

Today, his bilirubin has been good each time it's tested so they moved the tests out to 8 hrs instead of every 6. His platelets dropped though this morning so the doctor is a little concerned with that and he isn't able to fed again today. It's too risky to fed him because of the stress it my put on his intestines and could cause bleeding. I'm just heartbroken for him. He has wires everywhere, a catheter in his belly button, a tube down his throat, an IV with a splint. He doesn't get snuggled or kissed or sung to. He's such a trooper and so good for the nurses despite all of this. On the bright side, the doctor did have one of the lights taken off of him today. He's down to just 3 lights and a blanket. Artie and I also got to hold him for a combined half hour. I hadn't held him since I was in recovery Wednesday. I just stared at his face because I forgot what he looked like since I have only seen him with a mask on for the past 2 days. The doctor also told us that she's pretty sure we're out of the woods as far as Spencer having to have another replacement transfusion (which we were worried about). On the down side, I will get discharged tomorrow and he won't. I can't believe I will be going home without my son. It's going to be awhile before he comes home, even if things keep going well. If something takes a bad turn, it's going to be even longer. We are so blind sided by this because there was never any indication anything was wrong. We are so thankful that it was caught when it was-normally they don't even check bilirubin until the next morning-we wouldn't have Spencer if that had been the case. I got to change one of his diapers today for the first time and I was in heaven. His NICU help has been wonderful too and we're grateful for that. 

Now I will go home and get to spend the time with Avery and try to get to the hospital as much as possible to be with Spencer. It will be challenging since I can't drive and Avery can't come with us...I want to thank everyone so much for their support and extra prayers. I know that has definitely helped Spencer through this. I hope to get to share some new pictures soon. I can't wait to share news with you on when he gets to come home!

Quick Update

A quick update on Spencer from Daddy.  He had an exchange transfusion early this morning, where they basically replaced all of his blood.  After the transfusion, his bilirubin levels were down, but they are tracking them every six hours to detect any more spikes.  He is doing well overall, and the doctors are working to "tweak" his blood chemistry while he is still under the lights to break down the bilirubin still in his system.  Hopefully this worked and his bilirubin will increase more slowly and at an acceptable rate and no more exchange transfusions will be needed.

Thank you all for your thoughts and prayers, and we will keep you updated! 

Bittersweet

Name: Spencer Cole 

Time of birth: 11:22 am

Weight: 7 lbs 4 oz

Length: 20 in

We were so blessed today with the birth of our beautiful son, Spencer.  He came out with dark hair and I got a little vein and wanted him to have part of my name so we decided to take my middle name, Nicole, and make it masculine to get Cole.  Our excitement was short-lived as Spencer was whisked to NICU with a jaundice level of 12.4.  Since he had such a high level just a few hours after birth they were concerned that it wasn't 'normal'.  In fact, it was not and it turns out Spencer's blood has an incompatibility with mine that is causing his red blood cells to break down very rapidly.  He is under the lights, but will most likely have to undergo a blood transfusion tonight to replace all of his blood with more compatible blood.  We are completely devastated and praying so hard that our fragile son makes it through such a long and risky procedure.  Please keep him in your thoughts.  I will keep you posted as best I can depending on what happens.

Avery was so excited to see and kiss 'the baby'

His full head of dark hair!

All About Avery

This weekend was all about Avery! We wanted to spend some good quality time with her before her brother shows up this week. The weekend started off well with taco night! One of mommy's favorites, but-she must have known it was a special weekend because-Avery actually ate her taco and tried her rice!!  She never does this, she even ate her fair share of chips and salsa:) Earlier in the day, we had Subway for lunch after my dr.'s appointment and the tiny little girl ate every single piece of turkey and cheese from her 6 inch sub, including a lot of the bread and some of the cucumbers/lettuce on it (along with strawberries and sunchips). I was so excited that she was eating so well:) Saturday wasn't too eventful as I wasn't feeling really great. We ran a few boring errands and Artie worked in the yard a little. Sunday ended our weekend with a bang! We got up and I got to watch some tennis (the Madrid Open, one of the clay tournaments before the French Open that starts next weekend!)...then we got Avery up and headed to Dunkin Donuts-our first trip there (they just built one close to our house). We didn't know what to expect because we never eat donuts, so we didn't know how Avery would like it. She loved the munchkins (donut holes) and ate like 3 by licking all of the icing off! I was also surprised to find that she loved their hashbrowns! We did discover that we need to put trying a highchair at restaurants to and end because the second Avery sees one she screams her head off-guess she's just too big of a girl for those silly things! After breakfast, we headed to the park. Normally, we hit up the park by our house, but since this was a special day, we took Avery to a different park across town that's by the zoo. She had an amazing time, and even though mom pooped out and had to sit in the car, daddy made sure that she had a fabulous time! We got home in time for me to watch some more tennis (this always equates a good day to me!) and have lunch before Avery headed to naptime. Artie worked outside some more and I finally packed my bag for the hospital! We ordered a cheese d-lite from Papa Murphy's (the best pizza, yum) and some breadsticks (whole wheat) from Papa John's-took me right back to the college days:)!! Avery adores this pizza and gobbled it right up before we headed outside to finish the day with some playtime in the driveway with sidewalk chalk. It was such a nice weekend spending so much time as a threesome...however, if you notice there was no mention of Spencer's room-poor kid, maybe one day his room will be done:)!! 

We look forward to the arrival of our second, and final, child Wednesday-though I'm very anxious about the surgery and leaving Avery. I'm not looking forward to spending 4 days in the hospital, but out of all the hospitals in Fort Wayne (we have like 4 main ones!) the one I will be at has the best food:) The next post will more than likely introduce our newest member...so stay tuned!!

Wow mommy! This taco is pretty good!

Ooh, I just love chips and salsa:)

Avery has developed a love affair with dum dum suckers! There is a gas station close to our house that we always go to... Artie usually always takes Avery inside with him, even if I'm in the car too, and the people in there know Avery and love her so they always give her a sucker:)

What do most moms know? That a diaper box can serve as one of the best entertainers for kids! Avery spent the weekend filling this diaper box with the toys from her toy bin and anything else she could find-if you lost something, first place to look is Avery's box!

Enjoying hashbrowns at Dunkin' Donuts!

Licking all of the icing off of her munchkin...she had the frosting all over her face, shirt and hands. She kept asking for a 'T' (her word for tissue) because of the icing on her hands-she hates having anything sticky on her hands!

Avery's first time on one of these things! The park by our house doesn't have them:(

Tackling the dino slide...

Trying so hard to climb up this rock wall...she couldn't quite do it because it was a little too steep for her, but she gave it her best!

Her first time down a twisty slide-she thought it was the greatest thing:)

Some swing time was enjoyed, of course! Most of the time she was swinging, she was pointed up and saying 'sky'!

Oh, the love of sidewalk chalk! She ended up picking out mostly the pink colored ones!

Last Weekend...

Before baby Spencer is here, OMG!

So, no pictures to post, I'm not sure where the time is going these days??!!  I had my last OB appointment today and I gained nearly 9lbs in a week-that's how swollen I have gotten. Therefore, I am miserable! My legs feel like they are burning and my skin may just rip off. This is so new to me since I had none of this with Avery-thank goodness, I may not have wanted to do it again. This last weekend will be spent loving every moment with Avery as an only child. We'll also be trying to work on the nursery-yup he comes Wednesday and we can barely even get into his room, it's such a mess-and doing last minute touches, i.e. reintroducing our vehicle-and ourselves-to the infant car seat! The rest of the time will be spent with my feet up and hoping that after I deliver I lose 30lbs in water weight right away-lol:)

Everyone enjoy the weekend-the trees are greening up and the weather is getting warmer:)

Happy Mother's Day

HAPPY MOTHER'S DAY TO ALL THE FABULOUS MOMMIES OUT THERE!  ENJOY YOUR DAY:)

Avery and mommy last year on my first official Mother's Day:)  She looks so young!!

Well...

Not much going on this week-relatively speaking (since we will have another member of this family in just 12 short days!)-unless you count the shocking elimination of Lil' Kim on Dancing With the Stars.  I am to the point where I literally can't stand on my feet for longer than the length of a shower or to make Avery a meal.  So, we have watched a lot of TV lately-I know, not always the great thing for kids, but it's the best I can do right now!  Of course, we make most of it very educational...until mommy can't stand one more silly song!  I have been working with Avery and her baby a lot lately, but that isn't going the greatest.  When we put baby in her bed (aka: a diaper box with a blanket) and give her a small-sized bunny to cuddle with, Avery promptly takes the bunny away from her and pulls the baby out of the bed-by her hair-and jumps in the bed herself.  I don't know if this is a sign that she's going to regress and want to be in the crib and want everything the baby has (oh please don't want bottles, pacis, etc...) or what???  

Other than that...I have been wondering what the excitement over twitter is (sorry if you twitter, but I'm not getting the fascination with it!!) and why people in Fort Wayne drive so terribly.  Enjoy the weekend!   

So mommy tried to sneak in some 'adult' TV this morning by watching a little of the Today Show...NKOTB performed and Avery must have been diggin' their music because she was a dancing machine:)

She had some great moves...takes me back to the 3rd grade when I loved NKOTB!

So funny, Artie got our hall tree put together this week and Avery LOVES to have conversations with herself in the mirror.  It is sooooo cute and she can occupy herself for a long time-on the negative side, we can't keep the cushion on the bench because she keeps taking it off to climb on!

Daddy and Avery having some hang time together on the couch:)

  

A New Stroller and Park Time

This weekend was filled with errands and house cleaning/preparation.  I'm having a hard time moving around since my whole lower half is preparing for childbirth.  But, we did manage to get every room in our house cleaned except 2, which we'll be working on periodically through the week and hopefully finishing this weekend-especially since one of those rooms is the nursery! It's kind of silly, but I think that I'm having a hard time getting the work done in Spencer's room because that was Avery's nursery and her room and I'm having a hard time changing it! I don't think she misses the room at all and I should just get past it! We did manage some time to take Avery to the park since we had a beautiful weekend. It was great weather and we had the park all to ourselves the whole time we were there!

We finally got our new stroller. Shopping for a double stroller has taken months! I'm not kidding. We practically started the second I found out I was pregnant again. There was research upon research-online research, consumer research, advice from friends who had already gone through the double stroller search... It really was tough.  In the end, we decided on something for us that fits our lifestyle and we hope the kids will like it. We went with a jogging stroller that has features (such as a pivoting front wheel and storage basket) that make it easy to use for shopping and other excursions. We didn't want to purchase 2 different strollers-one for leisure and one for running-since double strollers can be pricey. So, hopefully, this works out for us. We went jogging a lot with Avery in her jogging stroller and she was born in October...so we'll be doing a lot of running with the kids this summer once I get the okay-I can't wait:) 

Okay, so Avery hates strollers, but once daddy had this put together, she was already up in it relaxing!

Getting comfy to watch some TV in her new ride...she climbed back and forth between the two seats like she was trying to stake her territory!

Running among the dandelions at the park-this year Avery loves grass-last year, not so much!

Playing peek-a-boo with mommy through the tunnel:)

Of course her favorite thing at the park-besides the swing-is climbing UP the slide as far as she can go and then turning around and sliding back down!

Getting brave on the slides

Loving the swing...daddy had her going a little too high at first and she didn't know what to think about it, but at least she held on to the ball she HAD to bring with her!

Heading for the tunnels...

Here's a 36 week pic of me-excuse the shadows making my arms look huge and dimply!