The first feed we gave him was at 5pm on that Monday. Within an hour he threw everything I fed him up :( But because there was a little mucus in the vomit the doctors felt like it was just his way of trying to get some fluid out of his lungs (something common in cardiac kids) So we didn't think much of it & moved on.
Jason came to switch me around 7ish so I could be with our girls & he could have his Ryker time. By about 11ish Jason called me & said that Ryker had been screaming ever since his 8 o'clock feed. I talked to the nurse & had her change a few things as well as having her do just pure breast milk only for his next feed at 2am. I was so nervous! My first instinct as a Mommy was to rush to the hospital & cuddle my poor baby, but Jason said he was fine & that he would call me if it got worse, so I didn't have have to leave the girls on "their time" (I have been ripped away from them on "their time" so many times now & so I am trying my hardest not to do that to them unless I absolutely have to)
At 5:30 am I woke up in a panic worrying that I had slept through Jason trying to call, but I was so relieved when I realized that he hadn't called at all. I thought- Ryker must be doing much better, I was so relieved! Braylee woke up when I did as well worrying the same thing, she said "Mommy do you have to leave" & I told her "nope sweetie, go back to sleep" At 6am (only a half hour later) my phone rang & Braylee instantly got emotional & clung to me as I answered the phone. It was Jason & I knew exactly why he was calling....my poor sweet baby was in so much pain, he hadn't stopped crying all night :(
I got up & started to get ready to go as my two sweet girls laid in my bed crying.....It is the hardest thing in the world knowing I need to be with Ryker & I have to leave my girls on "our day together" as Braylee says it. It is literally gut wrenching. I finally was able to say goodbye, knowing I couldn't give them an exact time of when I would be back even though they both begged for it. Thank goodness Joan is still with us so he was able to console my poor crying girls. So hard still for me to even just think about :(
When I got to the hospital Jason was standing up bouncing Ryker as Ryker was screaming. My poor baby's cheeks were flushed & so hot from crying for as long as he had. Jason said "I'm sorry I had to call but I waited as long as I could in hopes of being able to soothe him, but he is just in so much pain I can't keep him calm for very long!" It ripped my guts out to see both my boys so worn to their core from such a long horrible night! I wish so bad I could have been there all night for both of them! But one of the many things I have learned in all this is as much as I want to, I can't clone myself, therefore I can't be there for everything at all times. :(
After lots of deliberation, a new IV, a few blood tests & a lactate level of 9 we were back to the CICU...:( As soon as we got their they instantly started poking & prawding at my poor sweet baby & wanted to start shoving all sorts of medications (that we had just gotten Ryker off of) thru his IV. I suddenly became SO overwhelmed with anxiety & my protective Mother instinct stated to kick in. I couldn't decide if I wanted to start screaming at everyone (that was trying to help) or if I should just sit down on the floor & start crying!
After a few disagreements & pleading with the nurse to listen to me & not the Doctor on call- I had had it! I said to the Doctor (not mentioning any names because I love & respect all the Doctors at BCH but sometimes the Parent's instinct should be listened to a little more seriously in all hospitals) "I hate this place!!! All you want to do here in the CICU is run test after test & & if you keep searching for a problem your bound to find one eventually & then we really will be here forever!!" He stopped what he was doing & apologized to me, saying "I know this is overwhelming for you, but this isn't the first time that Ryker has been back here for tummy pain & we have to cross everything off the list to make absolutely certain there is no other problem." I knew he was right, but some of the tests they wanted to do had already been done & I didn't want to torture my baby even more to get the same result again! Especially when my instinct kept telling me it was just the additives & that we did too much at one time for his fragile little body & digestive tract to handle.
Just then the General Surgeon came in the room & started looking Ryker over. He & I talked for sometime & had come up with somewhat of a game plan for the night when the same Doctor on call came over to the General Surgeon & said "How many times are we going to run little tests on this baby before we just decide to skip the tests & cut him open? There is obviously something going on that we can't see with tests!".........I about killed him!!!!! I had to have looked at him like I was going to murder him right there on the spot because as soon as I looked at him he begun to back away. I said "Your kidding me RIGHT!?! Your just going to cut my baby open before knowing exactly what is going just because YOU want to know what is going on? Don't get me wrong, I want to know whats going on with my baby too, but don't you think that's a little invasive & completely unnecessary?!?" He didn't say anything to me & he turned to the General Surgeon in hopes of having the General Surgeon agree with him & instead the General Surgeon said to me "Mom, you don't need to worry about it, that would never happen in this hospital!" & then he left the room. The Doctor on call completely changed the subject & said "do you have any questions for me?" & I said "I would like to speak with Dr. Marx!!"
By this time I was literally shaking!! & in all this I want to make myself clear that I have the up most respect for all the Doctors & Nurses in this hospital, I have a love for them all that I could never explain, including the Doctor that I dealt with that day. But like I said before I just believe that there are things that we as parents understand that no test could ever prove & that comes with our parental instinct & one thing that I have learned loud & clear in this process is that I HAVE TO TRUST MY PARENTAL INSTINCT! I am the Mom & Jason is the Dad for a reason & there are so many decisions that only he & I will ever understand & that is what parenthood is all about, that is why our children have chosen us, because they need us to do what is right for them & not for anyone else!!
I wont even go into all the many things that happened or that could have happened form that point on...that was just one of the many ideas that were thrown out there that thankfully was thrown out just as quickly! I had never felt so shaken, angry & emotional, yet SO grateful all at the same time before in all my life! It was a horrifying feeling!!
From there the tests began....Thankfully I was able to illuminate a few of them that I felt were unnecessary & I got the AMAZING Dr. DelNido & Dr. Marx to second me on those decisions so that I was taken seriously by the CICU Doctors. It is such a wonderful feeling to have such incredible Doctors/Men having my back & especially Ryker's back to keep his best interest in mind! I am so eternally grateful for both of them!!
The next day they ran more tests....& poor Ryker took everyone of them like a champ! I however, did not! I so frequently laid my head by his & cried silently to myself trying so hard to be strong for him. It is so hard to see my sweet boy continuing to go thru so much & not being able to do a thing about it! At one point during one of his tests (the lower GI test) a test that the nurse advised me to take a break from it all & not go to, but of course I refused to leave his side. Ryker was on the table while the the Doctors were doing what they do & I was standing at the head of the table laying my forehead against my sweet baby's forehead whispering to him how strong & incredibly brave he is, when he suddenly stopped crying, tilted his head up towards me so he could see me & just stared his beautiful eyes into my eyes like- "Mommy, please take me away from all this! Please help me!" I lost it completely!! Tears rushed down my cheeks while there were 10+ professionals in the room trying to get the job done. A few of them tried to help me but there was no stopping my tears....I couldn't help my baby even though I could feel him begging me too! He was being so tough & I was so tired of seeing him HAVE to be so tough! My poor sweet boy had been thru enough....when is it going to stop!?! At that moment I prayed SO HARD that this would be the last test that he had to endure & that everything would come back normal so he could go back to being happy in recovery & Thanks be to God- IT WAS!
Every test that was thrown at my sweet boy came back negative for any intestinal malrotation (something that is extremely common in Heterotaxy babies) or blockages of the colon &/or intestines!!!!
Basically what we have found out was the cause of his pain was an overloaded digestive tract. Between the moving his feeds from every 3 hours to every 2 & then adding calories to my breast milk, his tummy just had it! Heterotaxy babies have extremely sensitive tummies mainly because their hearts (especially before the Glenn procedure- Ryker's next surgery) aren't strong enough to supply enough blood flow to their tummies to process large amounts food &/or too high of calorie intake, plus they have smaller than normal stomachs making them get full way faster than others. So from here on out (no matter how hard they try to push me to let them up his calories) he will not have anything but pure breast milk either in a continuous drip or every 3 hours. We have learned our lesson loud & clear!! :)
Another minor thing they did find in
their testing is that Ryker has a very tight rectal sphincter causing
him to seem constipated although his isn't. Therefore- when he was
having extreme tummy pain due to the additives in his milk he would
tense up even more that normal making it near impossible for him to
poop, therefore backing up his intestines so much that it actually made
them distended, causing EXTREME pain for my poor sweet boy! :( This is
something we are hoping he will just grow out of, but the GI team said
as long as he is on a regular bowel regimend such as suppositories
&/or miralax daily & breast milk ONLY he shouldn't have the
problems he has been having any longer. :) YAY RYKER!!!!
The next few days were way easier than the beginning of the process at the CICU but still extremely hard. Once they did decide to restart Ryker's feeds they felt like it was best to do it extremely slow to make sure he tolerated it well. So they started with a continuous drip of 2ml's per hour & then went up only 1ml every 6 hours....this was so torturous for my sweet boy because not only was he use to having the fulfilling feeling of a full tummy but he was use to eating by bottle & so according to him we were starving him to death! With that small of an amount dripping into his tummy so slowly he didn't even notice that it was happening, so poor baby was absolutely miserable! :( It took constant bouncing & consoling him to keep him comfortable enough to sleep for the two days it took to get his feeds to get where he felt somewhat comfortable.
There were more times than I would like to admit that I held him in our little CICU room & just cried, not only because of the many, many things he had been thru, but because no matter what I did for my sweet precious boy I couldn't console him, he would eventually wear himself out to were he would sleep for 10 minutes or so but other than that I felt completely useless to him for the first time ever. I felt so defeated in that I couldn't help my baby in so many aspects of his life at that specific point, no matter how badly I just wanted nothing more than to just take it all away for him! That was such a horrible feeling as a Mother knowing that I couldn't help him & only time could fill up his belly & make the pain from the numerous tests go away not me...:(
There were more times than I would like to admit that I held him in our little CICU room & just cried, not only because of the many, many things he had been thru, but because no matter what I did for my sweet precious boy I couldn't console him, he would eventually wear himself out to were he would sleep for 10 minutes or so but other than that I felt completely useless to him for the first time ever. I felt so defeated in that I couldn't help my baby in so many aspects of his life at that specific point, no matter how badly I just wanted nothing more than to just take it all away for him! That was such a horrible feeling as a Mother knowing that I couldn't help him & only time could fill up his belly & make the pain from the numerous tests go away not me...:(
Total we were in the CICU for 4 days & during that time & all the torture my sweet baby lost a
little under a pound in body weight :( obviously setting him back quite a
bit...So we are going to get
him back up & continuing to grow so he can get to his Glenn sooner than later with no more setbacks!!!
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| Me snuggling my sweet baby shortly after we were admitted to the CICU & he was able to relax after a dose of Morphine. The boot looking thing on his ffoot is a cast for his IV cause he kept kicking it with his other leg. |
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| Headed down the hall to one of his many tests & being SO BRAVE!!! |
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| Passed out (with the help of a little versaid) after the testing was finally done. |
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