Greetings WHS Family,
As we already made our formal introduction of our Daughter Madison Sergeant, we will proceed to share what life has been like. After 4 days, we left MUSC NICU at 5:30pm with the instructions to take our baby girl the next day to her Pediatrician.
At this moment I was anxious, fearful, and even mournful of the loss of the perfect baby girl I imagined she would be, but I try not to become so worried so that we could relax and enjoy our new baby girl; touching, holding, and comforting Madison. It took me a while before making her arrival publicly known, because I was not prepared to tell friends and certain relatives her condition. Only our immediate family knew what was going on, and I requested to be kept between us until I was able to face it. For me, everything about this condition was a big mystery and I couldn’t explain it to anybody for it to make sense.
Here is a synopsis of our journey at home for the 1st Trimester at home:
1st Month:
On July 23rd 2015, we took Madison to her first Pediatric visit which went well as our little girl was given her routine check as well as test for her bilirubin levels. Her levels went down 2%, as when she was discharged, it was 12 and today it was 10. Her weight was 3.94Lbs.
We were sent home with all the normal recommendations and to come back in two weeks…
August 5th 2015 Two weeks have gone by since we’ve been home and it’s been overwhelming, but the joy of being able to take care of her and her actions compared to that of a normal baby gives us hope. Our Pediatric appointment went well her Bilirubin levels were 0 and she has gained some weight. She’s now 4.69Lbs and she falls asleep each time we put her on tummy time.
Meanwhile for these past two weeks, we’ve been calling various providers to get our Super Girl Madison registered in the Early Intervention Program of the Carolina’s called Baby Net. We were given a Service Coordinator, and when Madison is one month old, she will have her evaluation.
By the end of this 1st month, Madison weighs 5lbs 2oz, is 17.5 inches long, and drinks 1.5oz on demand every hour and half; She wears preemie clothes & shoes.
We survived her 1st month and just seeing how she is improving gives us hope. The doctors and specialists keep telling us to let’s wait and see how our baby progresses, as it’s too early to tell… When I keep hearing those words it just makes me think that WHS is a big mystery and that a lot of it is just trial and error, but my baby is proving them wrong and I am having more faith in God and that’s what is keeping me sane.
By the end of this 1st month Madison Weights 5lbs 2oz measures 17.5 inches and drinks 1.5oz on demand or every hour and half; Wears preemie clothes & Shoes.
08/19/2015
2nd Month:
Here we are, and our Baby Girl keeps surprising us. As her primary care giver, I have little to no rest at all, but knowing that she is progressing well makes all of these late nights, sitting and watching over her just to make sure she is breathing, and these countless pumping alarms going off worth it. It is one of the most exhausting times in my life and I’m hoping that it gets better soon…
We had our appointment with the Baby Net Coordinator, and she will start Physical & Occupation Therapy when she turns 3 months. With that in place, we are now trying to form a routine as the following weeks ahead are challenging with lots of appointments.
Her 2 months wellness check made us feel more confident as she is growing and making progress.
By the end of her 2nd month Madison has gained a good amount of weight. She weighs 7Lbs 5oz and is 20.5 inches long and still drinks 1.5oz of breast milk in a bottle. She was never able to latch so I was unable to breastfeed her. She’s wearing newborn clothes and shoes, but they are a little big on her.
By the end of her 2nd month Madison has gained weight and now she weight 7Lbs 5oz and is 20.5 inches long and still drinks 1.5oz of breast milk in a bottle as she was never able to latch. She wearing new born clothes and shoes they are a little big on her.
3rd Month:
Little Miss Madison has lots of control during her tummy time and gained some neck control. We keep a close eye on her always. She sleeps in her room by herself, and is sleeping an average of 7 hours at night. So far so good.
This month was our most challenging month as we got multiple appointments and labs.
These are the results of those appointments:
1.- Cardiologist: As they proceed to do an ultrasound and electrocardiogram I started praying in silence and asking God that I have accepted this challenge but please Dear God may the result we get today don’t be something we have to worry I can’t take it no more… As the tech was examining Madison, she then called the Cardiologist in the room and he reviewed the images. I
got more worried but her PDA (patent ductus arteriosus) and her ASD (atrial septal defect) were normal and she no longer had to be monitored. She only has a heart murmur.
2. – Nephrologist: After getting labs done, the nephrologist informed us that our baby girl has Cystic Dysplasia Of Both Kidneys and Chronic Kidney Disease and that later on we will find out what stage it was… I think I had heard it all, but this was the most devastating moment because you are never prepared to learn that you or your love ones has chronic kidney disease or any disease… I remained calm until I got home, but for weeks I would hold my baby and cry as I was not clear how bad it was.
3- Genetics Specialist: We finally got to see Dr. Pai, who had lots of information; even some from the WHS org. While he examined Madison, he gave us hope and let us know what to expect and that there’s a good possibility that our baby girl will have a good chance of reaching her milestones as long as we can keep her kidney issue stable. He also told us what to expect and what should be our approach toward this WHS and its symptoms. By this time, we were more conscious of what to expect. We are scheduled to see him every 3 months for now, and the goal is to see him once a year.
4. – High Risk Pediatrician: The result is that Madison has HYPOTONIA (Poor muscle tone) and Congenital Microcephaly… The evaluation was not complete as she was too little and since she already started PT and OT there was no referral to be done but to keep working with her so she can reach her milestones.
5. – Pediatrician Surgeon: Her Umbilical Hernia was a concern before she was born, and we were expecting her to have surgery once she arrived. After she was born, it was determined that the hard protuberance should outgrow with time. So we are now only going to see him once a year and when she turns 4 years we will talk about the surgery.
6.-Audiologist: They redid Madison’s Hearing Screen and determined that she has hearing loss in her right ear and good hearing on her left ear. She is too little for a hearing aid and having a hearing aid will not benefit her much. We will go back in 3 months, but until she is able to sit on her own there will not be any more screening.
7. – Oculist: The result is Delay Visual Maturity. That is why our little girl has not started focusing on any objects or is able to grasp objects; it’s just a matter of time before her vision starts to mature and we will go back in 3 months.
By the end of her 3rd month Madison has gained weight and now she weight 8Lbs 4oz and is 21 inches long and still drinks 2.5oz of breast milk in a bottle. She wearing new born clothes and shoes they are a little big on her. She rolls for the side on tummy time. Started swimming lessons.
By the end of her 3rd month Madison has gained a little more weight and now weighs 8Lbs 4oz, is 21 inches long, and still drinks 2.5oz of breast milk in a bottle. She’s still wearing newborn clothes and shoes but they are a little big on her. She rolls to the side on tummy time.
Our first trimester been an awesome journey even with the ups and downs as well as our heartstrings being pulled continuously as this is not something that you can just cope with. Each day is an opportunity to learn and our baby girl is teaching us so much about herself in this short amount of time. Each day we read more and more to understand her condition and no matter what, we treat her as she is a normal baby. We read to her, play with her, and show her each moment that we love her no matter what.
For now we are positive and will share more about our journey soon.
Brandon & Kenia
(Madison’s parents)
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This is quite the story. I like your attention to detail. Madison’s weight gain is phenomenal. Your breast milk should be used to develop an official WHS weight gain formula. Have you tried to get Madison to breast feed now that she is stronger? All of her medical reports seem so promising, except nephrology. I hope her kidney disease does not progress rapidly. Rochelle’s kidney disease was present in infancy, but it remained stable for 36 years! It has only begun to deteriorate now. I hope Madison is as fortunate. Keep up your good work and hope. I look forward to your next post.
I agree with Shirley, the detail is wonderful to read. It is so helpful, especially, to other parents with new babies, to understand that while no two kiddos are the same, we all can empathize with devastating doctor appointments and even the unexpected good news. (Could we get more of that??? :o) ) I’m so happy to hear that Madison’s heart has a murmur only. One less doc is allllways a good thing! Madison is gorgeous, those beautiful lips! And very well dressed :o) She is loved beyond measure, it is clear. Sending you the very best, and looking forward to all you’re able to share as you continue on your journey.
Your story is very similar to a friend of mine’s I would really like to talk to you if you have a free minute to contact me or even facebook me. Thanks in advance!
Hi Cassie
I will send you a FB friend request as this email i have is not linked to my FB account