What a crazy experience this has been!! Gabriel had his first surgery on Friday, January 20th. The purpose of this surgery was to put tubes in his ears and implant the Latham Device which will pull together the gaps in the palate and put Frank back where he belongs. Let me tell you about how all of this went down.
My plans for Friday morning worked perfectly. I fed Gabriel 6 ounces of formula one last time at 10:30 pm Thursday night. He was back asleep by 10:50 pm and slept until 3:45 am. I was up by 3:00 am getting some final things packed, so 3:45 am was just right! We loaded him up into the car and left for Fort Wayne at 4:00 am. Gabriel slept most of the way – he woke up and cried a little twice, but neither time was for very long. We arrived at the hospital around 4:45 am, 15 minutes prior to our scheduled arrival time. I took Gabriel in, registered, waited, and then was called back to pre-op. He didn’t cry the entire time we were waiting for his surgery to begin!! I held the pacifier in his mouth most of the time, but even when I took it out, he just laid in the crib looking around. Quite different than what we were expecting!!!
The ENT doctor, the orthodontist (who constructed and implanted the device), and the anesthesiologist all came back to talk with us. I feel a little bad because I harassed the anesthesiologist by questioning how much experience he had working with infants. I suppose it wasn’t necessary, but since his job was what worried me the most, I felt like they were questions worth asking. At 6:30 am, they wheeled our baby off to surgery. Surprisingly, I didn’t cry at all – but, I did virtually run in the other direction when they wheeled him away so as to not have to watch him go or hear him cry.
The ENT doctor came out around 7:10 am to tell us that his part was over and that things were going well. Interestingly, he did say that Gabriel had fluid in both ears – so I guess tubes were a great idea!! Gabriel also had what everyone is assuming was a hemangioma (abnormal buildup of blood vessels in the skin or internal organs) on his septum going back into his mouth, so the ENT doc biopsied it and sent it off to be tested. We are assuming it was from bottle nipples rubbing against that spot and that the testing should not reveal anything otherwise. This was the time the long wait would begin.
Finally, around 9:00 am, Dr. W came out to talk with us – surgery was over. He said that everything went well and showed us pictures of both the Latham Device in Gabriel’s mouth and the location where the hemangioma was removed. Let me just say now – we were shocked at the size of the Latham Device!! Such a small mouth with now such a huge appliance in it. Dr. W did say that he is concerned about there not being any separation between Gabriel’s tiny upper lip and his nose, so he took another impression and will be constructing an additional part to add to the Latham Device which will hopefully stretch out the tissue to give the plastic surgeon a little more to work with. He will be adding this addition Wednesday night when I take Gabriel in for his first adjustment and cleaning. I am afraid that it will have to attach to the outside of Gabriel’s face, now giving him something external for people to stare at and for him to be drawn to with his curious little hands. So far we have not had to put arm restraints on him and I would really like to keep it that way!
We were also told that we would have to begin tightening the screw in the device starting Monday. We have to turn it ½ a rotation in the morning and ½ in the evening on Day 1. Day 2, we will turn it ¼ of a rotation in the morning and ¼ in the evening. We will then repeat Day 1 and Day 2 until the screw no longer tightens. The plan then will be to remove the device and Dr. S will schedule the second surgery to repair the gum line and do the preliminary lip repair. We are assuming he will possibly close up the lips going into the nostrils at that time, but this is our assumption and we have no evidence yet whether or not we are assuming correctly.
Anyway, back to surgery day. Gabriel was taken to the Pediatric Intensive Care Unit (PICU) – not because anything was wrong, but because they wanted him to have one-on-one attention. We were asked to rush to the PICU. Upon our arrival, Gabriel was hysterical and the nurses asked if we had special bottles because they were certain he was hungry. *Here is a little background information – I packed two bags for Gabriel. One bag (our usual diaper bag) had diapers and clothes in it. The other had our usual Dr. Brown bottles and our prior Pigeon Bottles – as we didn’t know which bottle would work best with the Latham Device. Chad ran quickly to the car to retrieve the bottles, but when he got back to the PICU, he had the wrong bag. Needless to say, when I told him he brought the wrong bag, he cursed at me and ran back out to get the other bag. I suppose, in hindsight, I probably should have told him how I packed; however, in my defense, I assumed that if he saw two diaper bags, he would bring both. Anyhow, for those who know Chad, he is still bitter about this – so at least you will understand when he starts complaining about me!!
The first several feedings were complete nightmares. Here was this poor child who just came out from under 2½ hours worth of anesthesia, had his mouth numbed, had a bizarre – enormous contraption in his mouth, IV’s and monitors stuck all over his body, and was in a strange place with strange faces poking and prodding him. All I wanted was to go back in time one day to when feeding was easier. We had worked so hard to get him eating well and now it seemed we were back at square one.
By 5:00 pm, I finally got him to drink 4 ounces of formula. The method I used was slightly unorthodox – I had to put the nipple of the Dr. Brown bottle between his gums on the left side of his mouth. He would basically chew the nipple and drink the formula. Unfortunately, this caused him to choke repeatedly. We were so lost about how to feed him. All along, everyone had been saying it would be so much easier feeding him with the device in place, but things were bad. I really thought I was told prior to him being born that I was to put the nipple under the bar in the back of the device – but no nipple could fit between the bar and his tongue – even the Dr. Brown nipple, which is extremely soft and flexible. Additionally, he could no longer suck on his pacifier – which still plagues us.
That night in the hospital proved to be far worse for Chad and I than it was for Gabriel. He slept most of the time – except for when the nurse would come in to give him his pain medicine. She was so afraid of him choking that she would squirt the medicine into his mouth one drop at a time. Needless to say, this really pissed him off. When I give him medicine, I aim at the side of his mouth and deliver the medicine in two big squirts. He doesn’t like the medicine any better that way, but at least the torture is over much faster.
In the PICU room, we had two very uncomfortable chairs to sleep in. We had no blankets, so we both used our coats as blankets to keep warm. One of the most inconvenient thing about the PICU was there were no restrooms in our room – so we had to share one restroom with everyone in the PICU. It was a lot like being back in college living in a dorm. Except that in a dorm, you have a restroom with multiple stalls – in the PICU unit, there was one restroom with one toilet – no stalls. Ugh! I don’t look forward to being in the PICU again after his next surgeries.
In the morning, the on-call doctor came in and checked Gabriel out. He then authorized the removal of the IV and our release. By noon, we were finally on our way home. It felt like we had been there days instead of just one night.
Our first night at home could not have possibly been worse. Gabriel was completely inconsolable from 5:30 pm until 10:30 pm. We tried feeding him. We changed his diaper. We gave him his Ibuprofen and Tylenol. There was nothing else we could identify as wrong. Before his surgery, he only cried when he was hungry, so this madness was so not like him. Chad wanted to take him to the hospital but, without a fever or any sign of infection, I deduced that it just came down to discomfort and exhaustion. He finally crashed at 10:30 pm and I put him in his crib. He woke at 12:45 am and actually ate really well without any drama! I thought the bad was finally over and we were headed in the right direction. I was wrong.
He woke every hour from there and would eat no more than an ounce at a time. By 5:50 am, I gave up and put him in his swing hoping that would help him sleep longer than an hour. This is where Day 2 of being home begins. He woke at 9:30 am and had such a drama filled feeding that I felt horribly defeated. I have been scouring the internet looking for tips on how to feed this poor child without making him scream. So far, nothing. Most people say it took their children anywhere from one week to three weeks to relearn how to eat. I guess we’ll just have to keep trying and hope we find the magic switch soon to make all this bad turn to good.
I have many more things I could write about, but given the length of this post, I will wait and update all of you after our visit with Dr. W on Wednesday. I have included some pictures of Gabriel in the hospital. Such a sweet boy – even with all the pain, he still managed a few smiles! Wish me luck turning the screw tomorrow!!
Sad Baby
Happy Baby
This is a very moving post, and it is terribly upsetting to read. I don't know how you had the energy to write it. You all are in my prayers, and I am sending big hugs to you and your family. xos
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