Thursday, October 28, 2010

Creativity




Though I have had lots of posts about James and his development, I've also been enjoying watching Dani grow and develop her personality. She LOVES to play and is quite creative. Though she LOVES toys, she often takes every day items and pretend they are toys. Here is a small sample of what Dani has done over the last few months. Please know that these are her creations not prompted or demonstrated by me.

She has cared for her brother.


She has dressed up

sometimes in normal dress up clothes with new special shoes
Sometimes in favorite new dresses

Sometimes in her own "princess dresses"
My high heels are her "glass slippers"Some days she prefers not to get dressed at all. Though this is because her nightgown is like a "pretty dress"
She also loves to make pattern ("paduwin") necklacesIt is not uncommon for me to be cooking dinner only to have a super hero run into the room exclaiming "Don't worry Mom! I'll save you!"
She has made "carpet angels"
This was her "instructions" which she requested that we take everywhere (the store, restaurants etc). I just didn't feel like toting it around.
Since James came along, her "purse" has been a favorite toy to grab while I am occupied.
While at a restaurant the other day she picked up her knife and fork to show Dad how to play a violin. She stuck it under her chin like that without any instructions. I think she learned this from Elmo on Sesame Street.
Dani has been fighting naps for a while and since James came, I've not been feeling up to the fight. We've come to a compromise. She can stay on the couch and watch my shows with me if she tries to go to sleep and take a nap on the couch. The great thing is there is little set up and no complaining because she doesn't have to nap in her room. I just have to leave the TV on or she will wake up to tell me it turned off.
Over all she is a very sweet, helpful, and obedient little girl.

Sunday, October 24, 2010

Two Months Old

2 months
Weight: 12 lb
Length: 23.5 inches


Other than the MRI, James has not had any doctor appointments this month. I've been grateful for a few weeks of no new problem to add to my list. Even if it is just ignorant bliss, it is still a nice break. I have also had a lot fewer tears and feel like I'm getting a little bit of a grasp on what we will face. I sure hope to keep it that way for a little while.

I thought that I would be less excited about my second child's developmental milestones. With our situation, however, it has turned out to be opposite of what I expected. I am obsessed with every little milestone he makes. Seeing him progress really lights up my day.

Here are a few things he has been doing this month:
  • Swings his arms and legs to hit dangling toys.

  • Vocalizes mood. Happy coos when I give him attention, and sad cues/pouts after he has been crying and is picked up.

  • Grabs on to my pump tubing and once he even disconnected the tubing while I was pumping. Though not likely purposeful, it seemed like a very coordinated reach, grab and pull from the hand furthest away from the pump.
  • Either holds onto my hand or "holds" his bottle while being fed.
  • Visually tracks things and people well.
  • Smiles spontaneously at me. Even if I'm sad these smiles are contagious!

  • When I sing to his good ear, he will turn his head so he can see me.
  • Unfortunately, he likes TV like his big sister. Though he at least prefers talking or playing to TV.

  • Has started to REALLY fight sleep and gets quite grumpy when he needs sleep. Does not know how to fall asleep on his own yet.
  • Does not like to be alone for more than a few seconds. He will calm down if I am in his view, but fuss loudly if he can't see me.
  • Attempts to suck the fingers on his right hand when he doesn't have his pacifier.
  • Holds his head up at 45 degrees when on his tummy.

  • His head is quite steady when held in a sitting position.
  • He is able to bear weight on his legs.
Dani also enjoys playing with James, even if he doesn't respond much yet. She loves to put baby toys in his hands and help him shake them. She likes to read with him, watch him on the couch, keep him company when I have to get something, sing to him, pat his hair, talk with him about how cute he is, and bounce him in his bouncer. She is the sweetest big sister I could imagine. She is so enthusiastic about everything and always upbeat and happy. I can't help but smile when I think of my sweet kids.

Saturday, October 23, 2010

The Good, The Bad and the Ugly: MRI


After visiting the Cleft Palate Clinic in September I learned that James' cleft is quite rare. Though cleft lips and palates are one of the most common birth defects, they are usually not along the midline. Midline clefts happen around 1 in 100,000 or 1 in 200,000 depending on the source. At first this seemed like it might be nice. The cleft in his lip is small and the scar might be less noticeable. Most clefts have nothing else associated with them. However, midline clefts are associated with other midline defects (such as defects in the brain, heart and kidneys).

A few days after James turned 1 month old, he had an MRI to rule out other midline defects in his brain. When we first got the MRI results the Surgeon called us and read the radiologist report to us and mentioned that the defect was quite large 5 x 6 cm. After a week of trying to imagine this large of a defect in such a small head we reviewed the MRI and radiologist report ourselves. The report did mention a 5x6x5 cm defect. To us it seemed the radiologist likely meant mm not cm. Since then we talked to the surgeons and they seem to agree with our interpretation of the MRI.

Overall the MRI results are good news hidden amid bad news:
  • The good news: His brain does not seem to be impacted so he has a chance of developing normally.
  • The bad news: He has a meningocele
    (due to a defect in the bone below his brain {cribreform plate}, the coverings of his brain {meninges} have formed a sort of pocket filled with CSF fluid. This may or may not be connected to his nasal cavity and may increase his risk of meningitis. We have a meeting scheduled with a craniofacial team to discuss what their recommendations would be and if/when he might need neurosurgery and craniofacial surgery. There is also debate as to whether his eyes are farther apart than normal {hypertelorism} and if he will need a cranial bipartitian. This will also be discussed.)
  • The ugly truth: There still may be more problems we don't know about yet.
    The news that he may develop normally in my opinion outweighs all the other factors here. If it is only the hassle of many surgeries that we have to face (he develops normally and has a normal life expectancy), this problem seems much smaller.

Saturday, September 25, 2010

One Month Old


This past month I've been quite busy with the two little ones at home and all the doctor appointments we have had. James has already gone to 5 doctor appointments. One of his ears seems to be doing well other than a mild conductive loss (likely due to fluid in his middle ear). However, he is not responding at all to sound through his right ear or through bone conduction with the left ear masked, which means he likely has permanent hearing loss in his right ear. We will be retesting this after he receives tubes in December. I'm glad his left ear is good and hearing loss in one ear has only a mild impact in comparison with hearing loss in both, but its hard to keep finding more trials he will have to face. I've also been kept busy pumping and feeding him which takes a lot more time than just nursing. I'm exhausted by the end of the day, but it is at least something I can do to help him.


Aside from the ups and downs of the doctor appointments, it has been fun to watch James grow and develop over the last month.He still prefers to sleep with others but he is now sleeping up to 5 hours at night.He eats mostly in the day and sometimes up to 5 ounces.

  • He lifts his head up and holds it up for at least 10 seconds.
  • He likes to be on his belly so I sometimes put him on my leg with his feet on the ground. I have to watch him because he sometimes kicks so hard he almost flies over my leg to the other side.
  • He coos by using the short /a/ sound and gives "kisses" when he is a little hungry, but then throws a fit when he is very hungry.
  • For the most part, he only fusses when he is hungry
  • He is easily soothed by being swaddled and rocked.
  • He grabs and holds on to anything he can
  • He generally keeps his hands open
  • He sometimes holds his pacifier in with his hand since he can't create enough suction to hold it in with just his mouth.
  • He responds to sounds
  • He laughs and smiles in his sleep
  • He smiles daily
  • When he is awake he is usually quiet and alert

Despite all the difficulties, there is a lot to be grateful for. I take this as a learning experience that I hopefully can use to help others in the future. I am seriously considering completing my Masters degree in Speech Pathology and focusing my education on Cleft Palate kids. Though I will not be James' Speech Pathologist, I do feel I will learn a lot by going through the therapy with him. I will also be able to share my experience with those I work with.

Daniella has been fabulous! She is a big helper getting me things when I ask, bouncing James in his bouncer to calm him down, and checking on him for me when I briefly leave the room. I can tell she loves her baby brother. She still tells me how cute he is and is so gentle with him. She's so sweet!

Before I had James I did not have many people I considered friends in Denver. I rarely left Dani with anyone because I didn't feel like I had anyone I could leave her with without feeling like I was inconveniencing them in some way. However since James has come, there has been an outpouring of love from people and I have had many offers of help. There were many people who brought food over for me last week and many who have offered to take Dani for play dates. I know there are many people praying for James and it touches me that there has been so much love shown for my little one.

Thank you for all your comments and your support!


Tuesday, September 14, 2010

Introducing James

James Christian was born on August 24th at 4:36AM. Labor and delivery were fairly normal with no complications. He was 8lb 8oz and according to the nurse 18.5 inches but if this is correct he has grown 2.5 inches in under 3 weeks.

I wasn't planning on posting the details of the small complications I experienced during pregnancy because I felt at the time they were not very significant and I wanted to post mainly happy news. However, with the emotions I have been experiencing, I feel like I need to post the bitter with the sweet.

I found out I was pregnant a day or two before Christmas Eve. I was very excited since I had wanted another baby for a while. I waited an extra day to take the test since last time I was pregnant the test result was somewhat ambiguous at first and I only wanted to take one test. When I took it, the positive sign appeared extremely quickly and very bright. I didn't think much of this at the time, but was glad to get the results. I felt more tired this time than last, but thought I probably didn't notice it the time before and brushed it off.

About a week later, just before the New Year, I started bleeding. I bled very heavily and soaked a pad an hour all night long. I just assumed I was miscarrying and felt somewhat sad. We contacted the doctor I had not even had an appointment with yet, and she told us to come in that day for an ultrasound to verify that it was not an ectopic pregnancy. We went to the office and the ultrasound showed two gestational sacs that looked like fraternal twins. I was thrilled it was not ectopic, and a little shocked at the possibility of twins. We were told to go home and come back in two weeks for a follow up ultrasound.

Note: this is not the exact ultrasound, but this is what it looked like.
Those two weeks my emotions rotated through amazement, elation, terror and just an overwhelmed feeling wondering, “how am I going to manage twins at this time?”. I read “Twins, Triplets, and Quads” and bought high nutrient foods. I researched car seats that would fit three across in our Honda Civic. I looked into what slings could carry 2 babies since I would have to climb 3 flights of stairs with 2 newborns and a 2 year old to get to our condo. I walked through our 2 bedroom condo to see where I would fit 2 play pens or cribs and tried to figure out what our options would be when I would have to fit 3 beds in Daniella’s room. These two weeks I was so exhausted I spent much of the time in bed and didn't feel like getting up. I was trying to figure out when to tell the bishopric I needed to be released because I was at risk for delivering early and I couldn't handle two newborns and a 2 year old by myself and still be Primary President. I kept telling myself that as long as both babies are healthy I could make it work. I felt that as long as whatever I ended up with at the end of 9 months was a healthy, or two healthy infants I would be happy. When I went back to the doctors and saw that one gestational sac had not grown enough I felt guilty for feeling so relieved. I new I could handle one child and had it all planned out how to deal with one, but two was overwhelming. I didn't’ realize how overwhelmed I was until my energy returned the next week and I was much more productive.


From this point on, the pregnancy was fairly normal. Trent was able to look at an ultrasound of our baby at 16 weeks and it was pretty obvious he was a boy. I didn't trust it completely until our 18 weeks ultrasound confirmed what we saw. About a month before he was due, I ordered a couple books from Amazon about sleep and soothing since Dani had such trouble with these two issues in the beginning.

At 37 weeks I had a doctor check me and I was progressing quicker than I thought. With my first, I did not progress at all until the day I delivered. So I was a little nervous to hear I had already progressed to 80% effaced and 1-2 cm dilated and my help was not going to be here for another one and a half weeks. At 38 weeks I had only dilated up to 3cm and at my 39 week appointment I dilated up to 4cm. My doctor stripped my membranes at my 39 week appointment. I've been told that she has “magic fingers” because she will often induce labor with just stripping membranes.

Sure enough, that night my contractions started to get stronger and stronger. About 4:30PM they were fairly regular, but I could talk through them easily so I didn't feel the need to rush Trent home from work. I thought I would go in after dinner, but they slowed as soon as we finished dinner even though intensity increased some. Around 10 PM Trent convinced me to go in to be checked since it would be easier to not have to rush to the hospital and it is nice to be able to walk myself to the check in counter and answer questions instead of referring all answers to my husband. The person at the desk asked if I was there to be induced because I did not seem to be in labor. I had not progressed since my appointment that morning, so they said to wait a couple hours to be checked again. We went for a walk around the campus and when my contractions got so painful I didn't feel like walking much, we returned. It was only a half hour later and since I had not progressed further in that half hour, they considered sending me home.

Eventually, they were convinced to let me stay and admitted me. Around 1:30AM I was given an epidural/spinal, had progressed to 5cm (officially active labor) and then my water was broken. Within a couple hours, I could feel the contractions getting more intense. My spinal was wearing off, so I waited a little longer but the contractions got worse and I called my nurse in. She called the doctor to check me and the anesthesiologist to give me a booster for the epidural. I had progressed to 10 cm and was about ready to push. We called my doctor at home (she had given us her number to call her in for delivery) and she rushed in. Shortly afterwards James had arrived.

He was not out for very long when we heard the nurse say he has a cleft lip. After they handed him to me, he looked right at me and smiled. The cleft in his lip allows his smile to be extra wide. Now, I know that newborns are not supposed to be able to smile, that these are considered “gassy smiles” for a while, but it’s still satisfying to receive 5+ wide smiles every day from this little guy. At first we thought it was just his lip and alveolar ridge that were cleft. He was able to suck on my doctor’s little finger and there was some suction. I tried to get him to latch, but he kept falling off. I figured I’d try feeding him more later and perhaps I was doing something wrong and just needed the lactation consultant to come.

He was very swollen from birth and his eyes reminded me of the bubble eyed fish they were so big. I was hit by the worry about what others would think of him. Would be as loved by relatives and friends as his big sister? Would he be able to find friends in school? Was he going to be teased often about his looks or scar? How would this impact his future, and mine? I wondered how to break this to friends, how to approach this in pictures, how do I respond to show him that I love him and am proud of who he is even though I am anxious for surgery to help him look more normal. Despite his facial deformation I looked at him and at times still saw him without the cleft. He was very alert from the beginning. His hands were held open rather than clenched, and he grabbed on to anything he could. When the nurse took him from me to clean him off and weigh him, he tried to grab on to me and hold on.

When the Pediatricians brought him back from their evaluation, I learned that both the soft and hard palate are significantly impacted from his cleft. The lactation consultant came and told me that kids with a cleft soft palate cannot create suction to breastfeed because they require the soft palate to create suction. She brought me a pump and the occupational therapist brought a special bottle to try and feed him with. I was hesitant to use formula, because I so desperately wanted to breastfeed and I felt like I was just giving up on breastfeeding completely by giving him a bottle of formula. After talking to the lactation consultant a little longer, I gave in and was thrilled to at least be able to feed my baby, even if it was not the way I had imagined. By the time he was 8 hours old, he had already taken about an ounce of formula from the Haberman bottle and I was set up on a pump.

When Daniella came to visit us, she didn't notice anything was wrong with baby brother. She was excited to visit and tell us about her day. She talked about how cute he was, and how much she loves him. She was very concerned when she heard him cry and she would run to Daddy to make sure she had not done anything wrong. I’m thrilled that she accepted her baby brother for who he is and loves him just the same.

James’ sweet temperament has been a saving factor in dealing with all of this. His face is so expressive since his lips have much more mobility. The huge smiles I have yet to catch on camera, light up my day. He is a definite cuddle bug and prefers to be held to anything else. He will sleep soundly if he is placed on my chest and sometimes all he needs is his hands to be held to calm down. Other than demanding food on occasion, he is very mild tempered and easy to soothe.

I feel like I’m still riding the emotional roller coaster. There are days when everything goes well, and others when I cry for hours. It just hurts me to realize all he is going to face and knowing that despite being able to “fix” this with surgery, it is not a perfect fix. While he is a baby he seems fairly normal except for the feeding issues and obvious appearance. It takes a lot more time trying to pump and then feed him with his special bottle than it would have if I could nurse him directly. However, pumping is one thing I can do to help him, and in a way it is how I deal with the grief of not being able to breastfeed directly.

He will need years of speech therapy and he may still have difficulty with resonance in his voice. He will need at least 4 surgeries most at a VERY young age to look more normal. The surgery on the palate being done early enough to have less of an impact on speech may somewhat stunt the growth of his maxilla and he may need further therapy to pull his maxilla out so it “grows” to a normal size in relation to everything else. His teeth will not grow in normally even after the palate is repaired so he likely will not have a normal smile until he has major orthodontic surgery. I think this happens during grade school. My heart goes out to what he will have to face at such a young age. I hope that by the time he is facing other kids himself that I am past the tears. I want to show him that I am strong and that there is nothing to be ashamed of in how he looks or sounds. I just hurt for him because I know it won’t be an easy road.

Tuesday, August 3, 2010

Third Hair Cut

About a week ago, Trent commented that Dani needed a hair cut. So today, after her bath, I felt brave enough to attempt a third hair cut. I was a little nervous because it is so dry here that her curls are not as apparent, so I had to make sure it was straight instead of just mostly straight.

Before:

After:
It ended up MUCH shorter than I had planned and it makes me kind of sad that her hair is this short now. I was really just hoping for a trim around her shoulders (below or just above if I made a mistake). It was very difficult to get her to sit straight so that I could get cut it evenly. When I'd ask her to sit up straight, she just raised her shoulders or tilted her head and smile. She seemed nervous and would bring her shoulders up from being nervous or sit crookedly leaning on something.


Despite all the mistakes that made her hair so short, I learned a few things in the process such as don't try to cut her hair in the tub or on the couch, she cannot and will not sit straight in either place and the hair is then uneven. Using her small child sized chair and having a TV show on for her REALLY helps. So if I do brave this EVER again, hopefully it won't end up so short. I'm still sad though. I'm grateful that hair still grows even when I make mistakes and at least she still looks like a girl.
I'm trying to make sure she doesn't see that I'm sad because she seems perfectly happy with it and was thrilled to have her picture taken and look in the mirror to see the hair cut and done up. It really helps that she is such a happy girl!

Maybe, if I'm lucky, her curls will come back after it is washed again since it is now shorter.