Tuesday, January 18, 2011

The Good, the Bad, and the Ugly

I will first start by telling you some of the information that many of you already know. My life changed on Thursday, December 2, 2010 when I gave birth to our handsome little boy. He weighed seven pounds and five ounces and was nineteen and a half inches long. His APGAR scores when he was born were very high (8's and 9's) and we were very happy to be blessed with a happy, healthy baby boy. Ben got a hearing test and scared Mommy and Daddy to death. When he was tested, his left ear passed right away but his right ear was another story. In order to pass the test, they measure brain activity while introducing sounds and you have to pass the test by the time the stopwatch gets to 400. He passed on his right ear at 399! Seriously??? The lady administering the test said she thought he had some fluid in his ear and that is why it took so long. I cried when I heard the sound go off saying he passed and the lady hugged me because she understood the way my heart felt because she has a baby of her own that is deaf. She had already listened to my story of my own hardships of losing my hearing in my right ear from bacterial spinal meningitis as a baby. So, the good news, he passed!!!!

Day 2 of Ben's life he developed jaundice and breastfeeding him had to put on hold and he needed to be supplemented with formula in order to get rid of the jaundice and to get his blood sugar to a healthy level. He was not getting enough milk from me and was losing enough weight for the doctors to worry. By the end of the second day his jaundice score was appropriate enough that he was discharged from the hospital without any treatment needed and at this time weighing 6 lbs 13.2 ounces. We couldn't have been more happy or ready to take our baby boy home.

Daddy was so nervous driving home from the hospital with our little angel. He drove like a grandpa but eventually we made it home safely to introduce Baby Ben to our home, and our dogs (Shamus and Sophia). I was thankful I was not the one that had to drive us home. Sophia was curious right away and soon she became very protective and was given the nickname of Nurse Sophia because of the way she reacted to him each time he would cry or make any kind of noise. Shamus on the other hand wasn't as thrilled to have Ben home. He tried to ignore him possibly thinking he would maybe just go away soon (same way he reacted to Sophia when we brought her into our lives), but after a short amount of time, he took on the same curiosity and protective nature as Sophia did early on.

After getting home on Saturday, the pediatrician wanted to see us on Monday to make sure his jaundice was gone. He was gaining back some weight already and the jaundice was no longer a worry. His next appointment was set for Thursday, 3 days later for his 1 week check up. Ben did the unthinkable on day five of his life by rolling over from his tummy to back. As naive new parents, we had no idea this was a very advanced milestone for him. When we told his pediatrician, she was shocked and told us wee should child proof our house now!! We went home and got his milestone on videotape because we figured no one would believe it unless we did so. His one and two week check up came and went without any issues and we were starting to adjust to our new schedule at home nicely. I was on top of the world, I had so much love in my heart for Ben, Seth and everyone in my life and I was recovering and losing weight from giving birth and pregnancy nicely. By week one I had lost 20 pounds and by week two a whopping 30 pounds!! The only set back for me was a bladder infection.

By Ben's two week appointment he had gained back his weight plus a few ounces (7 lbs, 9 ounces and 20 1/4 inches long). The doctor said that he could go one feeding of waiting for 5 hours if he would. We were looking forward to this since we were lacking in our usual amount o f sleep, but as of today (6 weeks, 5 days) he has yet to do this, but I hear this is pretty normal for his age. Things were settling in well at our house. Shamus had accepted Ben as a new addition to the family and Sophia continued to welcome him. I loved staying home with him and watching his every move. The first two weeks were very emotional with all the hormones, but it seemed like, as soon as the two week mark came and went, so did the tears. Also at the two week point I had to make a decision to stop trying to force breastfeeding on him. Each time I tried he would get angry ad push me away. I would try for ten minutes as directed and each time when he pushed it away, and then I would end up pumping and feeding it to him. Seth saw my frustration over it and told me it was time to make a decision. I made the decision to no longer force breastfeeding on him since he clearly was not a fan and continued to pump and bottle feed him exclusively. This went well. I was able to offer him breast milk which offered all the benefits and also allowed Seth to enjoy the feeding times.

Ben's first month check up went well, now weighing 9 pounds, 9 ounces and 22 1/2 inches long. This put him in the 25th percentile for his weight and 50 percentile for his height. His pediatrician informed us that she believed his soft spot on the top of his head was closing prematurely and noticed his head was a bit triangular shaped with a ridge on his forehead. She wanted to re-evaluate it at his two month appointment. She mentioned that if it was more closed, she would have some tests run. She informed us that surgery would be the remedy of this condition. We didn't think much about it and scheduled our two month appointment.

On Thursday, January 6th, Seth noticed when changing his diaper that it had blood in it. Again, we didn't think much of it, but monitored the following diapers. On Friday, he had another bloody diaper and we immediately called the doctor and they requested we bring him right in. They tested his stool and it tested positive for blood. The doctor believed he may have an allergy to milk and recommended I restrict my diet (since I was still pumping and bottle feeding him) and then drop off a sample on Monday after having no dairy in my system and his. Since we were seeing a different doctor because his pediatrician was out of the office, and to get a second opinion, I asked the doctor about his soft spot growing together too quickly and asked if she noticed anything. She indeed confirmed that he had a triangular shaped head and a ridge on his forehead. She said to follow up with his regular pediatrician the next time we see her. She also believed he had a lazy left eye and advised we get it looked and so it can be corrected early. I thought, "Great, sorry I asked." Ben had developed a diaper rash around the one week mark and just would not go away. We tried three different diaper rash creams with no sign of improvement. At this appointment the doctor also prescribed a compound rash cream that proved to work within a day or two. Saturday he became colicky and was cramping up every time he ate and his sleep patterns were affected from waking up from two to three times a night to several times. On Monday we took a stool sample to the doctor's office and it tested negative for blood which lead the doctor to further believe it was a milk allergy. She explained to us that most babies that are allergic to milk are also allergic to soy therefore we needed to either continue to remove milk and soy out of my diet while feeding him with my current method or put him on hypoallergenic formula. With a hard decision to make and the anxiety of not being able to eat very many things, (I found the two ingredients are in almost everything), with a heavy heart I made the decision to put him on formula. I was surprised by the sadness I felt by not giving him "special mommy's milk", but over time got over it. The colicky behavior lasted from Saturday through Tuesday and by Wednesday we saw some improvement. The dairy must have begun to work its way out of his system. We were so relieved because it was so hard to see him scream at the top of his lungs and know that there was nothing we could do to soothe him. As of today the formula was a great choice and he no longer has the cramping during and after feedings. The only downside of it is it is a very expensive option, but we'll make it work.

I had my six week checkup with my OB doctor and in order to get a third opinion I asked her if she noticed anything wrong with his head. She said "Unfortunately, yes, he has craniosynotosis, doesn't he?" I think my reaction was a foul word followed by "maybe". So this being our third doctor to evaluate him and see what we hoped was nothing, was a realization that our fear might be coming true. I began to do some research on craniosynotosis and I have gone from knowing nothing about it to knowing alot and have also found a great support group online called Cranio Kids. I will give you some information (below) so you can understand what might be going on.

According to the Mayo Clinics website,

"Craniosynostosis is a birth defect in which one more of the joints between the bones of your infant's skull close prematurely, before you infant's brain is fully formed. When your baby has craniosynostosis, his or her brain can't grow in its natural shape and the head is misshapen. Craniosynostosis can affect one or more of the joints in your infant's skull. In some cases, crainosynotosis is associated with an underlying brain abnormality that prevents the brain from growing properly. Treating craniosynostosis usually means your infant needs surgery to separate the fused bones. If there's no underlying brain abnormality, the surgery allows the brain adequate space to grow and develop. Your infant's skull has seven bones. Normally, these bones don't fuse until around age 2, giving your baby's brain time to grow. Joints called cranial sutures, made of strong, fibrous tissue, hold these bones together. In the front of your baby's skull, these sutures intersect in the large soft spot (fontanel) on the top of your baby's head. Normally, the sutures remain flexible until the bones fuse.

Craniosynostosis signs in general include:

-A misshapen skull, with the shape depending on which of the cranial sutures are affected
-Abnormal feeling "soft spot" (fontanel) on your baby's skull
-Early disappearance of the fontanel
-Slow or no growth of head as your baby grows
-Development of a raised, hard ridge along affected sutures
-Increased pressure within the skull (intracranial pressure)

The signs of craniosynostosis may not be noticeable at birth, but they will become apparent during the first few months of your baby's life.

Common types and characteristics are Sagittal synostosis, Coronal synostosis (anterior plagiocephaly), and Bicoronal synostosis (brachycephaly).

Rare cases and characteristics include Metopic synostosis (trigonocephaly) and Lambdoid synostosis (posterior plagiocephaly). Ben's pediatrician thinks he may have Metopic Synostosis.

The metopic suture runs from the baby's nose to t he sagittal suture. Premature fusion gives the scalp a triangular appearance.

The cause of craniosynostosis is unknown. However, there's a heredity component to craniosynostosis when it occurs with certain genetic syndromes such as Apert's syndrome and Crouzon syndrome. Besides misshapen heads, infants with these syndromes often have seizures, blindness, developmental delays and mental retardation.

If untreated, increased intracranial pressure can cause these conditions:
-Brain damage
-Death, in rare instances

In addition, facial deformities that affect the middle of your child's face may case:
-Upper airway obstructions, compromising your baby's ability to breathe
-Permanent head deformity

For other infants, surgery, usually during infancy, is the primary treatment for craniosynostosis. However, the type and timing of surgery depend o the type of synostosis and whether there's an underlying syndrome.

The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often preforms the surgery.

Traditional surgery. The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, may take up to seven hours.

After surgery, your infant remains in the hospital for at least three days. Some temporary facial swelling is common after surgery. Complications are rare. Some children may require a second surgery later because the synostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces."

After reading this, you are probably:
A) Very tired
B) Are as concerned as we are
C) You now know the reason I have created this blog

Today, Ben's pediatrician gave us a referral to a specialist and we are in the process of setting this appointment up. The earliest the craniofacial sugeun at Children's Mercy said they could see us was February 23rd and Ben's doctor was not satisfied with that and so she has a call into the doctor's office to see if she can move the date up. Writing all of this brings me great sorrow, but is also somewhat therapeutic to write (talk) about it. I have my good days and my bad...

I will keep you all informed via this blog. For now, please pray for our little angel.

See pictures below.

With love,
Breanne & Seth


  1. Breanne & Seth- I will be following and saying lots of prayers for you guys. Good luck, I can't even imagine the heartache to hear those words. Take care.

  2. I'm SO sorry you guys are having to go through something like this with brand new little Ben. Good luck with the appointment (hopefully you will get in a lot sooner) and I'll be thinking/praying for you guys. Thanks for the update.

  3. Hi, I found your blog through craniokids. We are going through a lot of the same things with our son, Gray, who was born Dec. 20th. What struck me is that he barely passed the hearing test in his left ear as well! Our pediatrician seems to be totally unconcerned so I'm nervous about actually getting him diagnosed correctly and finding the right treatment. Thanks for sharing your story... it is comforting hearing from others who have gone/are going through this. Prayers for Ben and you two!

  4. Breanne -

    I can't pretend to imagine what you are going through, and you will be in my thoughts and prayers over the next few weeks. But rather than focus on the bad, I would like to try to bring some words of encouragement.

    It's easy to dwell on all the stress and anxiety, but don't forget that this child, for good and for bad, is the same child you prayed for and carried around for 9 months anxiously awaiting his arrival. The fact that you had the opportunity to witness the miracle of his birth, and can now hold him in your arms is truly a blessing that only God can provide.

    I wish you two the best of luck, and despite all the worry and stress and heartache, I hope you continue to find plenty of opportunities to take a step back and remember that it was all worth it.

    -Jeremy M (Softek)