I wanted to write to everyone about how our family has been doing since Will as been home! He ha now been home for a week and 2 days. He was discharged from the hospital on August 2nd. It has definitely been hard to adjust having Will home rather than having him at the hospital, I am way more sleep deprived that’s for sure! William is totally worth it though.
I never explain what the doctors are doing to fix William’s head because one; its super complicated and hard to explain. Two; plans are always changing because William’s body is changing so it can always change. and Three; I personally think that is too personal about William’s medical history that is not necessary for others to know. I won’t apologize for not sharing those personal details because quite frankly it’s no one else’s business #sorrynotsorry. William still has updates otherwise for those who would still like to know!
Before we were discharged William’s speech therapist at Primary’s wanted to do a swallow study to see why William can’t take all his food by mouth. A swallow study is when they do an x-ray on William’s throat and watch as he eats to see how he swallowing. After the swallow study was done William was diagnosed with Dysphashia which means he cannot coordinated his swallowing good enough for a fast flow of food. If eats like a normal baby food collects in the back of his throat and gets stuck, this can cause blockage in the airway, chocking, and most dangerous aspiration. For now, he has a occupational therapist that come to our home (we absolutely LOVE her!) who helps Ben and I know how to bottle feed William. He feeds almost all of his food through his tube, and when he is showing signs or oral readiness we will offer a bottle with only 15 mls of milk in. He have to be very careful and pace him or else it can be life threatening for him. He needs to have his milk thickened so help him pace, and use a preemie nipple. The goal is to help him have the experience and pleasure, not about food volume. That said, breast feeding is out of the question. I still pump throughout the day, and he is fed my breast milk through the tube, I don’t know what the future will bring for William being able to feed by mouth of if will ever be able to breast feed. But Ben and I both want what is best and safest for William, so we will not force him to feed by mouth unless he wants to. If I were to force him to take more food by mouth that would not only be extremely dangerous but cause a negative eating experience for him, I would hate myself if I caused him to develop a food diversion, which is possible, and real for many children.
Also before discharge William had a hearing test which he failed. The audiologist explained to me that because of William’s head dressing and his head deformity it was hard to do the hearing test in the first place. But they did the best they could and found that he has significant hearing loss. Because they were limited in the hearing test they want to see him again in 6 weeks to do another hearing test and have better answers for us. It was not surprising to me to hear he might have significant hearing loss because he did form abnormally, I guess Ben and I might be learning sign language which will be fun! At birth, the doctors also told us he had a visual impairment, because he was so young they aren’t sure how significant it is, but they will have an eye test for him in September so we will see how that goes!
The day of discharge was very hectic, we probably didn’t leave the hospital until around 5pm! I remember driving away with William in the car and Ben saying; “I feel like we are stealing him from the hospital!” It was so true, I felt even hesitant to take him home because I was so used to him being at the hospital and not home with us. It was crazy! The first night was very hard though, Ben had to work all night so thankfully I had my sister here with us to help me. William gets fed every three hours over the pump, and since he can’t be on his back still I was waking up probably every couple minutes just checking on him to make sure he didn’t roll over on his back (which, all the people at the hospital can back be up when I say he moves A LOT so this is very possible!). William slept wonderfully the first night, but me on the other hand, not so much!
Because William can’t be on his back still, he has a special bed car seat that he uses. Here is a picture of him in the car bed, he doesn’t like it very much and he is getting so big that he is going to need something else pretty soon!
On Thursday August 4th William was visited by his OT and PT. His feeding is doing very well, and we are continuing to pace him and only feed him for experience and pleasure.His PT was concerned about his hips, knees, and neck. Since he can’t be on his back certain muscles are not being used which causes some muscles to be underdeveloped. His PT taught us some exercises to do with William to help his muscles and She came today again and said he has progressed a lot! We just got to keep working on his exercises!
Here is a picture of Ben working with William the other day on his hips.
On Friday August 5th William had his first doctors check-up since the hospital. He is seeing a pediatrician at University of Utah Hospital and she is wonderful! We love her, we were so worried about William having a pediatrician that would understand him and have experience with how complex he is, and she was wonderful. His check-up went fantastic! He now weighs over 12 lbs, and he got his ears cleaned! It was a wonderful check up, and he is doing very well! Yesterday, August 10th William met with his plastic surgeon to check his head, and it is healing just as it should! Soon he will be able to have his second surgery on his head. At this point we are moving forward with faith in the Lord that He will continue to guide the surgeons and He will allow William’s head to heal in the best way for William. We feel confident in the abilities of his plastic surgeon, he is very knowledgeable, talented, and really cares for William. We couldn’t have asked for better doctors, surgeons, and therapists.
Ben and I moved to Bountiful, and we love our ward! We haven’t been to church yet, and we have already met almost half the ward! It has been awesome, we have felt so welcomed and so loved! We love where we are living, it is a wonderful area for sure! We are excited for this new chapter in our lives.
Right now, William is moving more and more every day! He is smiling and interacting with people. He is doing so well at home with us it was a wonderful decision to bring him home.Having Will as our baby is the most stressful, tiring, and wonderful adventure. He will always have health difficulties, and we are going to continue on this crazy roller coaster ride. As William develops we will continue to have good news, and bad news. We will have set-backs, and great victories. But we have chosen to continue to give William the best chance in this world, he deserves support and love as he develops. We have no idea what the future will bring for William, but we know that no matter what happens we will always be his parents, he will always be our son. We will always love him, take care of him, and have fun! One day, William will be resurrected and made perfect through the atonement of Jesus Christ. He will one day stand before Ben and I with a perfect head, brain, and mind. He will be able to see and hear perfectly, and his body will be made perfect and complete. I know that without a doubt in my mind. But until that day, we will enjoy every moment, embrace every set-back, and depend more fully on the Lord.