5.26.2011


( really, really long post)

      Shortly after Hoyt started breastfeeding in the hospital he began spitting up a yellow substance. The spitting up then became a full blown throwing up. Coming through his nose and with more force then just spit up. During our four day stay at the hospital we showed this to the nurses and asked if it was normal. We were told it was. We then met with the pediatrician while still in the hospital and again were told it was normal. He still had quite a bit of jaundice and not knowing and never having seen this before I just assumed it had to do with jaundice. Possibly that he had some acid reflux or since my milk hadn't exactly come in yet maybe it was just that color from the colostrum.

After being home for three days I called the doctor and let him know I had an appointment set for the following day but that I was really concerned about this. My original pediatrician wasn't available but they said I could come in to see an associate that day. When he came in I started to ramble on about why I thought the jaundice was a problem.. he stopped me mid sentence and said,  "The only reason I asked that you come today instead of tomorrow is because you mentioned his throw up was this color."  He asked how often his spit up looked like this. I told him the only thing to ever come out of his mouth at all was this.  He said that was his concern that he's afraid he may have a twisted bowel or an obstruction of some sort. He asked me to wait in the room and went outside the door to speak to a nurse. I evesdropped on the conversation (of course!) He instructed her to call around and see who could do a barium scan on him today and that it was STAT and if someone had a problem with doing it today to get him on the phone.



After being told that radiology was closed that they don't take anyone after 5 and to come back tomorrow we called our doctor and he contacted them. He told them he made arrangements for us to come and told us not to leave until we get the scan. We layed him on the xray table fed him a tiny bottle of barium and watched the screen as the barium traveled down his esophagus and stopped shortly after leaving the stomach. The xray tech explained, yes there is a blockage in a calm voice. Our reply, "Oooookaaaay... what does that mean." His reply, "We are going to be contacting surgery and you will be transfered to the ER until they are ready to operate." What!!! That went from 0-60 extremely fast! Of course the tears well up, Willie rubs my back and tells me it's going to be fine. He steps out to call our parents and let them know. I stay with Hoyt thinking, I was just sitting on the porch swing with Mom today watching Doogie swim holding Hoyt and enjoying the 70 degree weather! Now Im sitting at the hospital waiting for my 8 day old to have surgery!? Que the tears ..(Again, emotional having just had a baby a week prior.)


We were run through all the motions of surgery prep, the tears continue to come as he screams while they hold him down to start an IV, brief us of whats to come, the risks, the complications, potentially what they will find. After a slew of signing consent forms and waiting for the parents to arrive they are almost ready. Dad, Chase, Boyd and Willie gather around him and give him a blessing. They ask our family to leave and walk Willie and I to the surgery doors and tell us to give him a kiss and they will be done in about 2 hours. I hated having to hand him off to them. Of course all of the worst case scenarios run through my head. We kiss him and turn him over to them. They escort us out to the waiting room where the rest of our family is. They find a room where I can pump since it's been hours and bring me a warm blanket, some goldfish crackers and a bottle of water. I think they could tell I wasn't doing my best. We then waited what seemed like the longest 2 hours of my life. Our doctor came out and let us know everything went great. That he did in fact have a malrotated bowel but his intestines were still pink and healthy and none would need to be removed!  Fortunately all of the best case scenarios applied in Hoyt's situation as seen below.


Intestinal malrotation occurs in 1 of every 500 live births in the United States. Up to 40% of patients with malrotation show signs of the disease within the first week of life. By 1 month of age, 50 to 60% are diagnosed. Seventy-five to 90% of patients are diagnosed by age 1. The remaining cases are diagnosed after age 1 and into adulthood. While more boys exhibit symptoms during the first month of life, malrotation occurs equally in boys and girls.


Treatment of Intestinal Malrotation and Volvulus

Malrotation of the intestine is usually not evident until the intestine becomes twisted or obstructed by Ladd's bands, resulting in symptoms. Since all of the functional intestine can die with a volvulus, this is considered life threatening.
Surgical repair is performed as soon as possible. The bowel is untwisted and checked carefully for damage. Ideally, circulation to the intestine is restored after it is untwisted, allowing it to regain its pink coloration. If the intestine is healthy, an operation called the Ladd's procedure is performed to repair the malrotation. Since the appendix is not in the correct location, and it would be difficult to diagnose a future appendicitis, it is usually removed at this time.

Long-term Outlook for Children With Intestinal Malrotation and Volvulus

When surgical repair is performed before intestinal damage occurs, there are generally no long-term problems. 

We were able to see him directly after surgery while in recovery and then were told we could go home and rest for a while as he would be sleeping off the medication. It was nice to shower, wash my face, get some eye drops and lay down for a minute but after a few hours we were ready get back to him.










Days following the surgery he began to throw up bile again... this time because his intestines had not "woke up" from surgery yet and he wasn't able to pass what was in his stomach. After 2 days of watching bile coming through his nose and mouth a tube was inserted down his throat to his stomach to pump out the bile sitting in his stomach. This turned out to be the more difficult part. For several days he was strictly on clear fluids via an IV with a tube pumping his stomach. He hated the tube since it made it hard to suck his pacifier which became his only option as he was unable to eat. We were allowed to squeeze small amounts of sugar water in his mouth to keep him happy since he couldn't get the satisfaction of having a full tummy.  He had multiple IV's while there and eventually a PIC line inserted at the end when his fluids changed to more substantial nutrition. My least favorite was the constant removing and redoing the IV's. He had a hard time keeping them in wanting to bend his arms all the time. I hated seeing the tape rip the skin off his arms and the fluid swell his little fingers and hands.  He was given a small dose of sedatives daily to control his pain and agitation. Being hungry and in pain from the surgery made him irratable. 









It started to seem like this was going to last forever! The days kept coming and the Doctor kept giving orders of no food until he pooped. A week after being in the hospital and still no poop and little signs of one to come we asked our close family and friends if they would join us in fast and prayer that Sunday.  It might seem irreverent that we were "praying for poop".  Although we were fasting and praying for his health and recovery in general we literally were hoping for him to poop so that he could begin the process back to eating and digesting on his own as that would be the best indication that the surgery was successful.




The following morning we were never more excited to see a poop diaper in our lives!



A lot of sleeping and a day and a half later he was able to start on pedialite and then work his way up to milk. They gave him a Koala beanie baby to hold his pacifier in place. It quickly became his best friend. 




Once he was able to eat he picked it right up. He did awesome and within a day was ready to be breast fed again. After getting a little food he perked up, wanted to be awake and starting acting like a regular happy little baby! within 2 days of eating he was able to go home.


We had an amazing nurse named Maggie. It seemed like she was always there the nights we both had to go home. It was such a relief to know he was getting taken care of and loved. Thanks Maggie!





One really happy Mommy! So happy to finally get him home! 


This was most definitely a trial. One of the first serious trials I've had to face in my 28 years. There was a lot of heartache and a lot of pain. However, Willie and I were able to witness the power of prayer and fasting. We were surrounded by the love and strength of our families. I kept wanting to turn to Willie or to our parents or to the doctors. I wanted them to just fix it so it would go away and we could come home.   You gain a different perspective after being in a childrens hospital for 2 weeks. We saw a lot of sick children, born premature, birth defects, disabilities and children with cancer. How great are their trials? How difficult for their families and parents?  Ultimately I turned to my Heavenly Father for comfort.. someone who would understand exactly how I felt. Willie and I  have both grown as individuals as well as in our marriage, as parents as well as strengthened our families. 

"Trials come to the strong and to the weak—to the sick and to the healthy. Yes, the trials will still be there; but with the companionship of the Spirit, our approach to trials will change frustrations and heartaches to blessings."

Adversity and Prayer, Bishop H. Burke Peterson, First Counselor in the Presiding Bishopric


4 comments:

Lauren said...

What a fantastic post. I'm glad you wrote it all down. First, that is one CUTE baby! He is so handsome! Second, You are so strong Camie. What a difficult trial to go through! I admire both of you, for your strength and faith in this all. I am so glad that Hoyt is home with you and growing and eating. He is lucky to have you as his Mom!!

Hannah + 4 said...

Ah! I bawled the whole time I read this! I can not imagine and it broke my heart that he was in the hospital suffering! I'm so glad he is finally home and doing well! I miss him! Sweet little guy! We love you guys!

Becky said...

Hi Camie,
I don't know if you even remember me, but I used to visit teach you in the NP Ward (I'm Becky Gardner). I came across your blog on Holly's site and thought I'd check it out. Little Hoyt is adorable. I just wanted to say thank you for sharing your story. We went through something simliar with our daughter when she was barely 2 and it brought tears to my eyes to remember the strength and power of family prayer and fasting. It is truly amazing and such a blessing to have faithful family surrounding you. I'm so happy it all turned out well for you!

willie and camie shill said...

i remember you becky of course! that is crazy, I hope she is well now and hope you and your family are doing great!