Sunday, February 14, 2016

Dear New Family

Dear New Family,

Congratulations on your Baby!

And welcome to an amazing journey!

Right now you are starting this journey and it might be difficult. There are possibly many "what ifs" going through your brain and it might be hard to comprehend what exactly it means to have a child with Down syndrome. By now the doctors have most likely talked to you about medical issues that are possible and what you might expect for the future. But remember this, your baby is an individual! Your baby may or may not have medical issues. Your baby will have their individual strengths and weaknesses in life. And your baby will not be just like the baby described to you because no one knows what your baby will be like.
You might feel overwhelmed and feel like crying. That is okay. Cry! Let go of the hurt, anger, and frustration you have. You may need to mourn the loss of the baby you were expecting so that you can truly celebrate the joy of the baby you have. Then look at your baby. Your baby is here! Your baby is a baby first, not his/her diagnosis! Your baby loves you! Your baby will be happy! Celebrate your baby!

Soon your baby will be changing and growing. Before you know it, it will be their first birthday. And you will be amazed at how far you and your baby have come in one short year.

Congratulations!

With Love,
Heather Ascherl
Bradyn's Mom


Monday, September 21, 2015

Just acceptance: One year anniversary of the diagnosis

Today is an anniversary but not necessarily a good one.

Today is the one year anniversary that karyotype came back from the lab saying Bradyn has Down syndrome.

I can remember it like it was yesterday. I was back in the hospital with an infection from Bradyn's birth. Garret, Corbin, and Bradyn could not stay with me but had came for a visit and were just about to leave when the hospital pediatrician and two residents came in. They were the same ones we saw several times a day while Bradyn was in the hospital after birth. The pediatrician went over to Bradyn, picked him up and held him for a minute (he had been asleep in a bassinet). She then went to give him to me but since they were about to leave I asked if she could give him to Garret. "I know you have been waiting 2 weeks for the karyotype to return from the lab. It finally came back and does confirm our suspicions of him having Down syndrome." The world just slowed down way down. I looked at Garret holding Bradyn, then at Corbin playing with a toy. I remember her telling us that people with Down syndrome can have great lives. Then hearing Garret ask "What type of Down syndrome does he have? We had looked up some information about Down syndrome and it had said there are three types" (Standard Trisomy 21, Translocation, and Mosaicism). "He has Trisomy 21" Said the pediatrician. "What health issues will he have?" "Every child is different and can have different levels of health issues or non at all." We thanked the doctors. She let us know if we had any more questions to have a nurse get her and she would be happy to talk with us.
They left the room and I asked Garret to bring me Bradyn. There were no tears. Just acceptance. God had a plan and we were accepting it wholeheartedly. Garret and I talked about how it was going to be different, but we still had our little boy and he was still Bradyn. Our extra hanDSome Bray bear!


We are so blessed to have Bradyn just the way he is. He is the ray of sunshine in our family! Always smiling, unless those darn teeth are being mean again.


Developmentally he is doing awesome. He is now sitting, moving around the floor and getting into things, starting to get onto his hands and knees, and eating age level things. Also if beating up on your brother is a milestone he is doing that too lol.

  


Look how much both of them have grown.


Only can get one to sit still at at time :)




What a beautiful and amazing year it has been and so many more to come!

Saturday, February 7, 2015

Learning and developing

Development seems to be taking off lately. He is doing a great job gaining weight now and weighs 12 lbs 10oz.

He will be 5 months old tomorrow!

He loves laughing all the time and does it very often. I got two videos of him laughing just from today.



He can roll over both ways. He is better rolling from his tummy to his back then the other way but can do both.


He is starting to be able to sit we are doing exercises to help him be able to get to sitting position from laying on his back.


We are also working on oral strengthening using a Nuk Brush and a Duo Spoon getting him ready to feed him his first food in about 2 months.


Early Intervention is such a great resource and we have been learning a lot with their help :)

Monday, January 5, 2015

The One-Two Punch (colds and lack of weight gain)

Through the last few months it has seemed like a never ending battle of trying to get our entire family well.

Colds

This all started while at my parent's house for my Mom's birthday at the end of October. When we got there Corbin was starting to have a cold. The next day I then got the cold and I passed it on to Bradyn. Corbin and I were over the cold in a few days but Bradyn's cold just kept hanging on. He was coughing, sneezing, and had a goopy eye for two weeks. After those two weeks he got better, only to get sick again right after Thanksgiving. This time he was sick for two and a half weeks. It seemed like it drug on and on. We ended up having two doctors appointments and almost had to cancel getting immunizations. (Which we are doing an alternative schedule for Bradyn because he has enough going on with his little body and we think he should only have two shots at a time. The schedule an be found here: http://liberatedmind.com/2013/09/dr-sears-alt-vaccine-schedule-free-parent-worksheet/). He has been cold free since mid December and hopefully we did not get any germs through our Christmas celebrations.

Nursing

After that cold went away I started to notice a clicking sound that Bradyn would make during nursing. So I called our AMAZING Home Health Nurse, Jan, and asked if she could help us. When Jan came to our house she decided to weigh Bradyn and realized that in about a month he had only gained 7 oz. (For those who do not know a baby should at least gain 1/2 an oz a day) Also she noticed that he had baggy skin, similar to someone who has lost a lot of weight. So we decided that what was happening is that Bradyn was getting too tired while nursing to get everything he needed. The plan after that was to nurse, then give him a bottle (of pumped milk), and then pump. I also have started taking a bunch of supplements trying to up my supply of milk. This was in hopes of getting the milk easier to be passed to Bradyn while nursing. It take a huge amount of time and leaves no time for Corbin! But it is working. From Dec. 22nd to Dec. 29th (6 days) Bradyn gained 6 oz! Bradyn will have another weight check tomorrow and at that time I am hoping that Bradyn's weight will be up enough to be able to try only nursing him and not having to continue all of this.

Everything for feeding Bradyn:
Goat's Rue, Brewer's Yeast, Prenatal Muli+DHA, Fenugreek, Water, 2 types of Mother's Milk Tea, Postpartum Tea, Pump, Bottles (pumped milk), and Nursing Pillow.

Update (01/07/2015):
Yesterday was a weight check for Bradyn. He weighed 10lbs 9oz, which is a weight gain of only 2.5oz. Therefore it was decided that I need to feed Bradyn as often as possible during the day and wake him at night for feedings. These feedings have to be every 3hrs except one 4hr break. I am so tired and I don't know if I will be doing nursing much longer if this is how it is going. I am exhausted!
Next step is seeing a speech pathologist for working with Bradyn for strengthening his oral muscles.


Update (01/10/2015):
Bradyn had his 4 month check up yesterday. We weighed 10 lbs 14 oz, which is a gain of 5oz! Woot woot! I got permission from the doctor to not stress so much about pumping after every feeding and to get one 5 hour rest at night :) Bradyn will have an evaluation with the speech pathologist on Monday

Update (01/12/2015):
Bradyn had his first meeting with a Speech Pathologist today. It was determined that this is going to be an on going issue. Therefore I am going to be accepting breast milk that my friend has graciously offered me. I will still be nursing and pumping 3 times a day but most of the supplemental bottles will be donor milk. We have another weight check on Thursday to see if our schedule of 30mins feeding and 2oz supplemental bottle is enough or we need to change the plan...again. Please pray that Bredyn's weight gain is enough to not need to make further changes.

Final Update (01/20/2015):
Last Thursday was Bradyn's weigh in. It was decided that if he gained a good amount of weight we did not need any more changes but if he did not then we had to go back to the Dr. and readjust. Well Bradyn weighed 11LBS 5OZ!!! That is a weight gain of 12 oz in 9 days! So the plan is he will eat when hungry other than night time which I will wake him to eat every 3 hours except for one 5 hour gap. During the day he will nurse for 30 minutes and get a 2oz supplemental bottle after whenever I can. During the night he will only nurse. I will be pumping only 3 times a day now and the rest of the supplemental bottles will be from our friend Heather Thomason who has given us 3.5 gallons of breastmilk for Bradyn. I am so happy we have things figured out now and he is gaining weight. We are so blessed to have such amazing friends and family who care and pray for us. Thank you all for anything and everything you have done for us during this rough patch. <3

Friday, December 5, 2014

Appointment, more appointments, and............even more appointments!

Every day is an adventure. Never the same as before.

And many of these days are filled with appointments.

Bradyn was in the Hospital for exactly 1 week. Two days later Bradyn had his first appointment and the next day had a doctors check up. The next Monday we had our first meeting with our Home Health Nurse which is provided for free by the Health Department. Then there was also a appointment with the pediatric cardiologist. For the first 4 weeks after being home Bradyn would have a Dr.s appointment and an appointment with the Home Health Nurse. Once Bradyn passed his due date then it was a allowed to to become a little more relaxed.
But as Dr. appointments and appointments with the Home Health Nurse became less often we started having meetings with Early Intervention (EI) and the Developmental Disability (DD) program. "Early Intervention can help infants and toddlers with disabilities or delays to learn may key skills and catch up in their development." (http://www.parentcenterhub.org/repository/ei-overview/) Where "Developmental Disabilities program provides the following services: Service coordination, information and Referral, Mental Health Services, Educations, Contact Services and Monitoring, and Quality Assurance and Protective Services." (http://www.co.benton.or.us/health/developmental_disabilities/index.php). For EI there was a evaluation meeting, a goal setting meeting and then the intervention was supposed to start. Though the intervention did not start yet. This is because Bradyn has a cold and the interventionist cannot come if anyone in the house is sick, so we have to wait until next month.
So much information to remember. I wish that I had a second me to be at all these appointments to be able to soak in part of what I am missing! Also there is so much paperwork for me. It is good my full time job is being mom. I do not know how I would be able to do all these appointments and complete all the paperwork.

My final thought is that I am very blessed. We are getting involved in things that help Bradyn and that I can be home with my amazing boys!

Friday, November 21, 2014

A Scary Journey To (mostly) Healthy

In the Hospital

Right after birth

They second Bradyn was born he was crying. He also had a lot better color than his brother, Corbin, did when he was born. I got to hold Bradyn for about 5 minutes. Then the pediatrician decided that his apgar score was low enough that they needed a better evaluation with him in a medical bassinet. They then decided he was having some difficulties, so they needed to take him to the NICU. Garret went with him, which left me alone but I would rather be alone than Bradyn be alone right after being born.


About 10 minutes passed until Garret came back. He said that having a difficulty breathing and having difficulty keeping his temperature up. The pediatrician decided to put Bradyn on a CPAP, on the lowest level, for his breathing and under a radiant warmer to keep his temp up. Bradyn was on the CPAP (Continuous Positive Airway Pressure) for about 1 hour and then was put on Nasal Prong Oxygen.
Disclosure this is not Bradyn
Garret would go back and forth from the NICU to the birthing room and back for 2 hours giving me up dates. At 2 hours I was able to got to the recovery room I was also able to go visit Bradyn. Along with the oxygen tube he had a lot of wires on him. They included his heart monitor, oxygen monitor, temperature monitor, an IV which he was getting antibiotics through. They were not sure if he had been born early because of an infection so they were giving him a very low dose of antibiotics until they got his labs back.
Bradyn was on oxygen for 1 day.Most of that time he was only on 30% oxygen. Air normally is 28% oxygen but every time they would drop the oxygen to 28% he would have issues with his body's oxygen levels. We were both surprised how fast he was getting off of oxygen. Even though he was off of oxygen they still needed to keep him in there because he would have "episodes." These episodes would be where he would have difficulty breathing and then catch his breath. He still sometimes does this but he has learned how to catch his breath himself.

Feeding

Another issue was that Bradyn's feeding. He had to be finger fed because his oxygen level would drop when he was breast feeding. Finger feeding is done by putting pumped milk into a syringe, connect a tube, have the tube sit on your finger, put your finger in the babies mouth and while the suck you lightly push on the syringe. It is a lot more work then just being able to breast feed.
Tube and syringe for finger feeding
I remember, after learning how to finger feed Bradyn, I would pump then bring the milk to the NICU, then I would get a syringe and tube from the nurse, fill the syringe and slowly feed Bradyn, then wash the pumping instruments and start again.Because of having "episodes" and feeding issues he was kept in the NICU for 3 days and we could only briefly hold him.

A tiny heart

While in the NICU Bradyn had a Echocardiogram done when he 2 days old. This was used to look at his heart. Of course the Echocardiogy Tech could not tell me anything and we had to wait until we got to talk to the pediatrician. The pediatrician told us that Bradyn has a heart murmur, a congenital heart defect, a mitral valve cleft, and still had ductus arteriosus (a connection between the pulmonary artery and the aorta which usually disappears before a baby is born). We would have to see a Pediatric Cardiologist to see if he needed surgery.

Jaundice

He finally was able to come into our room and stay with us through the night. At that time I was released and we were given a parent room. But they still wanted to keep Brady in the hospital until his weight was up and to keep watching his Bilirubin levels (aka Jaundice levels) which usually peak at 5 or 6 days old. Bradyn's levels peaked at 4 days old at 16 total serum Bilirubin level in the blood. So he had to be put on Phototherapy for 24 hours which meant that he could not be picked up, again.
After the Phototherapy was finished we had to wait to make sure Bradyn's Bilirubin levels were where decreasing, he did not have anymore "episodes," and he was gaining weight until he could go home.

Going home

To the pediatrician and the nurses surprise he was doing very well. Bradyn was released from the hospital the day he turned 1 week old. Most babies do not do so well being born so early and have to stay in the hospital until they reach their due date. I was extremely happy that we got to go home with our amazing little guy. Finally all 4 of us were home together.


Since being home

Since we came home Bradyn has been very healthy.

Pediatric Cardiologist

We went to our appointment with the Pediatric Cardiologist when Bradyn turned 1 month old. We got great news! The hole between the bottom two chambers in Bradyn's heart, which the pediatrician called a congenital heart defect, had completely closed by its self! Also the ductus arteriosus had disappeared. The Cardiologist saw the mitral valve cleft was still there (In drawing: #1). He found that there was extra tissue growth under a different mitral valve (#2) and a patent foramen ovale (#3) (a small opening between the left and right upper chambers). The patent foramen ovale does not usually need any type of treatment. In the future the mitral valve cleft may cause leaking of blood going through one chamber of the heart to another. Also the extra tissue growth in the future may cause blood not to be able to efficiently pass through the valve. Both of these issues are going to be watched and may need surgical corrections in the future. Bradyn's next check up with the Pediatric Cardiologist will be when he is 7 months old. If he does not need a surgery at that time then they will have us come back every six months to make sure it is not a problem.


Reflux

The only on going medical issue is Bradyn's Refux. Reflux is caused by the Lower Esophageal Sphincter does not close all the way or opens often which lets stomach acid to go up his Esophagus. For Bradyn he does not spit this up but instead chokes on it. This causes him to gauge, cough, and have a hard time catching his breath. I think this is what was causing his "episodes" while he was in the hospital. He is now on medication called Ranitidine which he takes 0.3ml twice a day. It makes me sad to give such a little baby a prescription already but it has seemed to help him a lot! Since stating the medicine he now sleeps through the night. By sleep through the night I mean 7:30/8pm-6/7am!!



We are very blessed to have gotten such a healthy baby. Many babies with Down Syndrome have many health complications and often they need heart surgery right after being born. God has blessed us in many ways!!!