Wednesday, August 18, 2010

Summer Colds

Miss K has a summer cold, she's quite miserable.  She woke up around 3 or so this morning coughing up stuff, runny nose, watery eyes and very congested. She didn't sleep much after that or even really eat.  She usually downs a 6 to 7 oz bottle in about 30 mins or less, but it took her an hour to eat about 3 oz. So off to the doctor we went this morning.  Thankfully it is just a cold and no infections or anything, but it's bad because there's nothing you can do for a baby with a cold. Just some nose drops to help break up the congestion and try to get them to rest. 

They weighed her today and she weighed in at 11 lbs 15 ozs, almost a 12 pounder! She was relatively good at the doctor until she got hungry and overtired. She slept on the way home and then ate a 5oz bottle when she woke up.  So that's a good sign and she's been asleep for a little over an hour now.  I hope she sleeps tonight, but I am thinking as soon as she lays down she is going to start coughing again.  As soon as I lay her down to change her, she does, so I imagine tonight will be the same way. She may end up in her swing or carseat lol. 

We go back on Friday for her "2 month" check up that is now a little over a month late.

Tuesday, August 17, 2010

Sleeping and Smiling

For the most part K has been sleeping pretty well.  The last few nights she has gone down from around 7 to 8 and slept til about 12 or so, up for a bottle and back asleep until about 4 or 5.  Not too bad, except after that bottle she thinks its play time! She has more awake time now, that's fine, but really at 4 am?? No thanks! Her other awake time seems to be from 3pm to 5pm or so....but it's not play time.  It's crying, screaming, fussing time.  No thanks to that too! I am fine with her being awake, but the screaming has to go.  The big kids are trying to do their homework, but I can't really help since I am busy with the baby. Dinner needs to be started but she's so out of control, it's impossible!  So now I am trying to figure out how to move her schedule some, so her awake time in the morning is closer to 6 or 7 and the afternoon one is 5 to 7, this would make everyone MUCH happier! :)

Anyone have any ideas?

I managed to get a few good pictures of her smiling today, so thought I would share. Also a short video again!


video

Friday, August 13, 2010

Kaitlyn Live!

I really need a pick me up today, so here's some videos of Kaitlyn.  Hope you enjoy.

video
video

Tuesday, August 10, 2010

Happy 3 Months

Time seems to be flying by, Kaitlyn is now a little over 3 months old and is doing great. We had a couple issues with her incision in the last month, she had a stitch abscess. Essentially had a reaction to the stitches they used on the under part of the incision. A red bump had formed on her back and then had a small opening that ended up with some pus in it. We took her in and they gave her some antibiotics and after 3 checks she was fine. So we're just taking extra care in washing it and keeping it clean. As of right now we do not have to go back to UAB until October for her 3 month baseline mri and renal ultrasound.

Overall, she seems to be hitting milestones as most babies. She has the cutest smile ever, but I can not seem to capture it on camera lol. Every single time I bring out the camera, she stops smiling. One of these days I'll be able to show you! She's cooing and "talking" back to us and even laughs on occasions, that's the sweetest sound ever!

Sleeping has gotten better, most times she is up around midnight or so to eat and then again anywhere from 4 to 6 am. I am looking forward to a full night sleep, hopefully soon.  Once she starts sleeping through the night regularly, we'll move her into H's room.

Here is a few pictures of Miss Kaitlyn

7/4/2010
7/15/2010- closest I can get to a smile picture
7/15/2010
8/3/2010- another half smile picture

8/9/2010 - Kaitlyn - 3 months 1 day old 

Surgery Week Pictures

Just a few before and after photos of Kaitlyn, there is one picture of her incision at the bottom of this post.

With daddy at the hotel, two days before surgery

Kaitlyn after surgery

She had to be on her stomach or side the entire time
Even eating on the side, 1st bottle after surgery
Looking at mommy intently

2 days after surgery, not happy. I felt bad for her because she had not been picked up in several days.
Finally fell asleep

Getting to hold Kaitlyn for the 1st time after surgery

Incision area after surgery (about 3 days later)

Healing

Copied from other blog

July 12, 2010

Healing

Miss K is doing great, her incision is healing properly and she got her stitches out today.  I was worried how she would react, would it hurt her etc, she just kinda of laid there like it was no big deal.  :) We return to UAB in 3 months for a MRI so they have a baseline of what her spine is like since the surgery. We were hoping for a 6 month break but I would rather them be thorough and know exactly what is going on with her.

Thanks for the thoughts and prayers!

Two Months Ago

Copied from other blog

July 8, 2010


Two Months Ago

Two months ago, my world seemingly got turned upside down. Two months ago K was born via c-section after trying for a vbac for 12 hours and not really progressing. Today I look back at that and am thankful because we had no clue about K's Spina Bifida.  We also do not know if her lipoma could have ruptured or not during birth as it was half filled with spinal fluid. The last two months have been stressful, happy, sad, worrisome and so much more but right now I feel at peace.

K had surgery approx two weeks ago and sometimes I am still trying to wrap my head around that. My 6 week old baby had major spinal surgery.  She could have been paralyzed, she could have major bladder/bowel issues, she could have required another surgery to put a shunt in her head.  She could have been. She's not paralyzed, had a very short term bladder issue and she did not need another surgery.  Miracles happen. Prayers work. Believe it.

When K was 4 days old I found a support forum for people living with Spina Bifida or parents of children with Spina Bifida:  Spina Bifida Connection .  This was my saving grace. The people there are inspiring, helpful, friendly and most of all been there. To be able to connect with other moms/dads who have been there and done that, to know I am not alone in this journey is priceless. Reading their stories, blogs, and helpful posts in regard to my own situation, I learned so much.

I learned that K having Spina Bifida is not the end of the world, just a different world. Her life isn't going to end or not be fulfilling because she has a birth defect. She will go on to lead a fulfilling life filled with love, joy, friends and family.

I am learning to live in the here and now and not in the future. No one can predict what will happen in the next 6 months, year or 10 years and rather than worry and dwell on it, I am living life and enjoying time with my 3 girls.

UAB Surgery Update

Copied from other blog

June 27, 2010

UAB Surgery Update

I just realized I never updated my blog about K's surgery this past week.  Sorry about that, was just to busy emailing updates, posting on facebook and HMMT to get here too. So anyway, K's update.

We arrived in Birmingham on Monday morning for K's pre-op appointment with Dr. Wellons, which led to a series of other stops here at the hospital, pre-admissions, and lab work being done. First thing we found out was that K's surgery had been moved to Wednesday morning at 7:30 am rather than Tuesday due to an emergency case coming in. It was a little frustrating but I am glad we did not have it Tues afternoon, because it would have made for a very very long day.  So bright and early Wednesday morning we were here at Children's Hospital (early as in 5 am!) and thankfully was one of the 1st called back.  Once we got back to the pre surgery room, we spoke with the drs and such and answered questions about K etc and then they took her off to get drugged up. Surgery was expected to start soon after but it was 8:30 before it got started, and they told us about 3 to 4 hours.  True to their word, right about 12:30 we found out the surgery was complete and was successful. The staff was great on updating us every hour to hour and half on surgery and K's status. 

She had to spend a couple hours in recovery while we waited on a room and bed to be available and it wasn't until about 4pm we got to the room and they finally brought her in. It was so great to see her, I was really  worried she would be hooked up to all these things but she only had her IV in. The worst part not being able to hold her. Dr Wellons came and talked to us right before we got the room and told us how everything went and thankfully he did not have to detach any nerves during the detethering. She still had movement in her hips, knees and ankles as before. He did have to leave a smaller version of the "hump" aka cyst so that the nerves would remain intact and everything would heal properly.  So she's had to be flat since surgery, on her stomach or on her side with no one picking her up. We've had to feed her while she's on her side and change her diaper with her on her stomach.  We've gotten used to that, but it still sucks to not pick your baby up when all you want to do is comfort her.

Overall she's doing well post-op with the exception of bladder control. She's unable to really urinate right now, could be the nerves are just irritated and swollen or it could be a side affect that she has to live with. I am hoping for the first and hope it resumes normal functions soon. Right now she has to be cathed every 4 hours and boy are the nurses having a hard time.  She's so small and swollen it makes it quite difficult and to think we are going to have to do this at home, sigh. I hope it's just short term, so please say a quick prayer on that.

We are waiting to find out if we are able to leave tomorrow (Monday) to come home. Dr Wellons  wants us to pick her up and hold her as we do at home to check for spinal fluid leaks in her incision area.  So far so good on that, so if all goes well we'll be able to return home.  I am ready, the girls are ready for us to be home as well. I'll try to update with more info later this week after we get home and settled.

Thank you for all the well wishes, thoughts and prayers for baby K and our family.

Countdown

Copied from other blog

June 15, 2010

Countdown

We're in the final countdown to Kaitlyn's surgery, a week from today hopefully it'll be over and all will have went well. I am still having trouble processing that her surgery is next week. How did it get here so fast? We head down to UAB in the morning for her urology testing and also for a ct scan. I am not sure if we'll find anything out in regard to the test or if they will call us or wait until the pre-op appointment to let us know.  Her pre-op appointment is next Monday the 21st, so it's not that far off but I hate waiting. Hate.It.

We had to do a little scrambling to cover childcare for the older two girls since the surgery was sprung us earlier than we anticipated. However we managed to find some family to take care of them, though I am honestly not thrilled with the whole situation, but what's a mom to do? I am just going to pray about it and hope the house and my kids are still standing when I get back.

Miss Kaitlyn turned 5 weeks old today...and that's harder to believe I think than the fact of surgery being next week. She is much more alert these days is starting to focus on us when we're talking to her etc. I wish she would sleep a little better at night, but I know that'll happen in time. Sooner than later would be nice! ;)

Wish us luck tomorrow, will keep everyone updated when we know more info.

UAB Appointment Update

Copied from other blog

June 9, 2010

UAB Appointment Update

 Just wanted to give an update on Kaitlyn and her UAB appointment from yesterday. I know most of my blog readers already know all of this but a few do not :)

We saw Dr Wellons on Monday (the pediatric neurosurgeon) down at UAB and overall things went well. Originally we were told Kaitlyn had a form of Spina Bifida called lipomyelomeningocele, but yesterday he told us she has Spina Bifida Occulta. She definitely has a tethered cord and he'll have to do the surgery to untether it along with removing the growth on her back. We were told the growth was most likely fatty tissue at HH NICU but he seems to think its more fluid than fatty tissue but I think she is considered to still have it, because she does have the growth and the spinal cord is attached inside of it.

We got to see her MRI and it does show the tethered cord but it also showed that her nerves were still attached which is why she can move her legs/feet so well right now. There is a chance that the surgery could result in leg weakness and/or Kaitlyn not being able to walk depending on if he has to cut the nerves or not.

We go back on 6/16 for an appt with the Urologist and also for her to get a CT Scan. Her surgery is scheduled for 6/22, but we have to be back on 6/21 for the Pre Op appt with Dr Wellons and then we'll stay there for the week.

The CT scan is being done to see if she has any fluid in her head, called : Hydrocephalus right now he doesn't think so but he wants to verify before surgery. If she does they will have to place a shunt to drain the fluid back down, and there is a chance she will need it even if there isn't currently fluid there, due to the surgery (since the growth may be fluid filled).

The surgery is expected to take about 4 hours (if no complications) and the recovery time is atleast 3 days, and she has to be flat on her back the entire time. So we'll be down at UAB from 6/21 thru 6/25 or 6/26 at the very least.

Thank you all again for your thoughts and prayers and please continue to pray for us and Kaitlyn.

Living In a Foggy Daze

Copied from other blog

May 17, 2010

Living in a Foggy Daze

I have been in a foggy daze since Kaitlyn's birth.  I thought for sure it was because of the pain pills, but I've been off of them for about 5 days or more so I don't think it's related.  I do think know I am way overwhelmed at Kaitlyn's diagnosis, the thoughts of all the things that could go affect her later in life or even in the next few months.  The fact I don't really know much more 9 days after she was born than I did after finding out she had lipomyelomeningocele  (further known as LMC).  I don't think there has been a day since she was born I haven't had a breakdown at some point in the day and my poor husband has no idea what to do for me, other than tell me he loves me and things are going to be OK.  I want to believe they will be OK but until I talk to the neurosurgeon at UAB in June I don't feel I can process this all enough to really believe things will be OK. 

I need to call and make an appointment for a 2 week checkup with my OB and I will talk to her about my feelings and see if she thinks it's PPD related or if I am just having anxiety about the diagnosis etc. I don't know that I am depressed per se, but I am down at times, happy at times, sad at times  and mostly scared of something happening to Kaitlyn. I am in total agreement with the statement, you never think something is going to be "wrong" with your child. I don't feel there is something "wrong" with Kaitlyn in my eyes, just that she has a medical condition that needs more attention.

On the plus side, she's doing well adjusting to being home. I am slowly getting more comfortable handling her, though I am still nervous I could hurt her by sitting her down wrong or putting her diaper on to tight, etc. Her big sisters love her to death and they always want to hold and feed her. Plus they can't wait til she's bigger so they can play with her. We did get a call today from the pediatrician because the levels of her thyroid test came in a little high, so dh took her in this afternoon to get retested.  I hope they were just a fluke high, the nurse did say that it was possible and they could be just fine today.  I really pray they are, because I honestly don't know if I can handle anything else right now.

In the midst of all this I do realize how lucky we are, because I know the diagnosis could have been worse and she could have needed surgery immediately after being born among many other things.  I have wonderful friends who have offered to help in any way they can, babysitting, meals, coming over to just chat etc and knowing I have such tremendous friends, is a god send. I may not need them right this minute, but in the coming months after our trip to UAB, scheduling surgery and such I know they will still be there for me. For that I am very thankful and grateful.

Birth Pictures

Kaitlyn Nicole - 7lbs 4oz


Fluid & Fatty Tissue filled cyst
1st time seeing Kaitlyn, before they took her to the NICU at HH

Power of Prayer

Copied from my other blog

Wed May 12, 2010

Power of Prayer

I believe in it. Kaitlyn was released from the hospital today and is doing great.  We went into visit this morning and to get some answers from the doctor who had not called as promised and I was NOT going to leave the hospital until we had them. The nurse came over and started talking about the Dr coming in this morning and that the surgery would be outpatient so she would be going home.  I was kinda in shock, had tears in my eyes because all along this is what I wanted but only if it was 100% safe to do so. We never saw the Dr in person, but hubby did talk to him on the phone and found out they are going to refer us to another hospital and a pediatric neurosurgeon who is more trained in this particular issue.

So tomorrow we have a follow up appointment with our regular pediatrician and they will get the referral for the other doctors. We have two places to choose from, UAB and Vanderbilt, I've heard good ab out both but want to do my research and figure out which we should choose. The surgery will also not be done until she is a little older, my guess is around the 2 to 4 month stage, but that's just based on what I've read online.  They want her to get stronger and bigger before doing the surgery and since hers is closed it's not a have to be done immediately surgery.  Though I prefer it to be sooner than to much later as I don't want it to affect her everyday life.

Thank you  to everyone who said prayers and kept us in their thoughts during this rough time in our lives and please continue to think of us and baby Kaitlyn for her upcoming appointments and surgery.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

8/10/2010

The more I think about this doctor, the more mad I get. This man never came to talk to us in person, EVER. I was told by a friend he was a great surgeon but had a terrible bed side manner...well considering he never came to talk to us about a newborn that was in NICU with undiagnosed Spina Bifida, yah I think he does.

We really had a terrible experience the whole way through this ordeal.  I can't even begin to describe how it feels to know nothing about your child's birth defect and to be in a different hospital than they are.  It's surreal, you don't feel that it is really happening, until you don't see your baby while you're there. It's different when you come home to an empty crib and unpack the baby clothes you took to bring baby home in. It almost feels like a dream, but it's more like a nightmare that you pray is over soon. Thankfully our nightmare only lasted 5 days, but that was 5 to many.

Monday, August 2, 2010

Kaitlyn's Birth Story

Copying & Pasting from my other blog:

Welcome to the World- Kaitlyn Nicole

I am happy to announce that Kaitlyn Nicole has arrived!


Stats: 5/8/10 @ 2:22pm via C-Section
7lbs 4oz and 19 inches long

Birth Story:

Friday evening about 11 pm my water broke at home, so we headed to L&D after my dad came over to watch the girls. We arrived around midnight and was admiited right away. I had been having a few contractions but nothing I thought was going to lead to a baby lol I had planned on trying for a vbac, so I did not want to be induced. The dr and staff was fine with it and supported me the entire time. I was 1 cm still when we arrived and after several hours of contractions, some painful, they checked me and I was about 1.5 cm but still only 50% effaced. We decided to keep going and see if I would dilate & efface more.

My contractions did start to pick up enough but not enough for progression. So I went ahead with a low dose of pitocin at 6 am but still was only about 2 cms and 50% effaced. At 10 am I decided to get the epidural since the contractions were becoming more painful and closer together. I was finally at 3 cm and they were upping the pitocin amts every 30 min, which lead to upping every 15 mins because I was starting to stall at 3 cm and only 60% effaced.

By noon the nurse and dr said we might want to start thinking about how long I wanted to continue to labor since I was at 12 hours by this point and not really progressing. We decided to continue for another hour and then check to see if I had any more progress and if not then we would make a decision. The contractions were still coming strong and were about 2 to 3 mins apart but at final check I was still just about 3.5 cm and 60% effaced. At 1, I decided to call it quits and have the c-section before my bp went crazy or Kaitlyn went into distress.

They began prep for my c/s, but the spinal meds were not working and did not numb me at all, so unfortunately they had to put me to sleep to deliver Kaitlyn. She arrived at 2:22 via c/s at 7lbs 4oz and 19 inches long. As you have seen me mention on facebook, Kaitlyn has a growth on her back/spine area. It's about the size of a small orange. It's called : Lipomyelomeningocele ( a form of Spina Bifida), basically a rare birth defect that happens in 1-2 of every 10,000 babies born. Short version is that it is a fatty mass that is located under the skin on a childs back and normally located in the middle. The mass goes inward to the spinal canal and covered by skin.

They transported Kaitlyn to HH NICU soon after she was born, I only got to see her for about 2 mins after I woke up in the recovery room. Leon nor I got to hold her before they transported her. That has been the hardest part, not seeing or holding her since being born. Leon was able to go to NICU this morning and visit with her and hold her.

We hope to have some answers about the surgery she is going to have sometime today and what kind of side affects will be possible from this both before and after surgery and how long her recovery will be, when she'll be able to come home. This has been a very difficult time for us so we really appreciate all of your thoughts and prayers. I will continue to update as often as I can.
__________________________________________________________________

8/2/2010

I decided I wanted to add to this post in relation to my memory of Kaitlyn's birth. 

When I decided to go ahead with the c-section due to no real progression, I was at peace with the decision. I did not want to stress myself or the baby and felt like it was time. I truly think it was a blessing in disguise that she was born via c-section.  I left out part of the "story" when I originally posted the story, but not intentionally, I just wasn't in the frame of mind for a beginning to end story.

When they wheeled me into the OR, I was feeling anxious, and waiting on the meds to kick in fully before the c-section began. I remember thinking, in a few minutes I'll be fine and Leon will be in with me and we'll be holding our baby. That's not what happened, not even close. I  laid there, able to move and assist with moving from the bed to the table and they were like ummm. this isn't supposed to be happening.  They said can you feel everything, I was like yah. Then I hear a flutter of activity, mention of having to put me to sleep, and I started to panic. I suddenly was freezing, shivering, felt like I could not breathe, basically like I was hyperventilating. At this point, I feel like I had an out of body experience.  It is strange, I recall thinking in my head, I want  my husband in here, ask them to let him come in. I could not for the life of me make my mouth work and say it. I could hear the nurses talking to me, asking if I was Ok? but I couldn't answer them or if I did I just nodded my head. I remember them putting the oxygen mask on me and telling me to take slow deep breathes. I nodded but was still shivering and in my head I was saying I want my husband.

Next thing I know, I am woken up by the nurse, and look around and see these people standing there and I'm back out again. It was a moment later when I woke up again, focused on Leons face, then back out. I felt like I was in Groundhogs Day the movie.  Then I remember the Dr, which I later found out was a neurologist, tell me there was something wrong with my baby. He may have even told me what, and that she was OK, I do not know. I was back out again.

Awake again, they wheeled Kaitlyn in, she was already in this box thing strapped down. I could not even reach out and touch her.  I tried, but she was to far away. She looked fine to me, and the next thing I knew I was out again and woke up in a postpartum room. Then it dawned on me, that Kaitlyn wasn't there, and my sweet husband had to explain to me what was going on.  They had taken her to Huntsville Hospital NICU because she was born with a lump on her back. At this point, we had no idea what it was, if it was treatable, life threatening etc. It was horrible. I was in one hospital while my baby was in another. In my head all I could think about was what if something happens to her and I never got to hold her. What a morbid thought, I know. However I was still heavily drugged, no one to talk to (the Dr never came back to talk to us) and find out what was going on.  It wasn't until the next day when Leon went to see Kaitlyn in the NICU that we knew what was going on and that she had a form of Spina Bifida.

More to come on the diagnosis, NICU stay and more.