Exhausted

 If you hadn't heard, our superman came home a week ago Tuesday! Since then we have been trying to get back into a routine, as well as, trying to catch up on some sleep! Luckily, I am thankful for the help from our moms, especially my mom, as she has been here almost everyday helping and was at the hospital everyday helping me before being discharged.

Alex planning his escape!

Upon being discharged we were sent home with 4 medications, a vitamin, and rice cereal ! Because Alexander showed one incident of silent aspiration during his swallow study, in addition to precursors of possible aspiration due to a wakened vocal cord, Alexander's breast milk is now thickened with rice cereal. The hospital states that I should pump for 10 min, feed bottle and then if he's still hungry I could nurse. Ha! I don't think so. Instead I pump first to help control the fast let down, and then nurse when he needs comforted or a snack. Otherwise he gets the bottle. Next month we will be going back to CHLA for another swallow study and see how his swallow looks.

So, in addition to pumping every 3-4 hours, feeding every 3-4 hours and then giving him his medicine every 6,10, or 12 hours- Wes and I don't get much sleep! To make things more interesting, I have come down with a cold as of Sunday night. Barely getting out of bed and having a fever doesn't mix well with a 6 month old, which means I shouldn't be around Alexander.  I'm once again fortunate to have my mom help me out this week during the day and Wes to take over at night. Even though Alexander is getting healthier now that the second surgery is done, staying away from sick people and using good hygiene will still be on going. So if you see us, don't be surprised if I pull out some hand sanitizer or ask if you've washed your hands before touching our superman.

The next few weeks are going to be busy for us. Not only do we need to get into a feeding medication routine, therapy services are resuming this week, doctors appointments are going on and Alexander gets his Doc Band next week!

Prayers are requested for this momma to kick this cold quickly, for our routine to get easier, and Alexander to stay strong and healthy!

Frustrated

The past three days have been a roller coaster ride of emotions. I have felt every emotion possible: worried, angry, irritated, sad, happy, etc. Thursday morning, I was so happy  to walk in and see my baby boy extubated and sleeping peacefully.

However, Wednesday was full of worrisome and anticipation. The day started off with waiting for the cath lab team to come and get Alexander. Once he went to the cath lab, he was away from us for 4 hours; 4 hours of me with a knot in my stomach. Luckily, Alexander behaved himself and didn't have any hiccups coming out of he anesthesia. The cath lab team found that the collateral vessel that was coiled at the first heart cath (pre Glenn), had opened up more, causing the collateral to become larger, which redirected some blood flow and bypassed his lungs (which was one reason for his low saturations). They also acknowledged that his right pulmonary artery is narrow and that an angioplasty would be needed however now is not the time to do it. The surgeons are hoping it won't need to be done until Alex has his third surgery, the Fontan (between the ages of 18 months-3 years old).

Now to back track a little bit. On Tuesday Alexander's feeding session by bottle was assessed and the occupational therapist (OT) felt that a swallow study was needed to make sure he wasn't aspirating. His soft cry, drooling milk out of mouth, and "wet" cough were signs of this possibility.The swallow study was scheduled for Wednesday but the Heart Cath took priority.

So Thursday, while still in CTICU, during rounds, I brought up the fact that Alex needed to have a swallow study. When it was time for Alexander to begin eating again (have to wait at least 6 hours post extubation before eating), the doctors wanted him to eat by bottle so that they could track how much he was eating. When I informed the doctors that Alex was getting 3 bottles and nursing, they still said they wanted to track the intake of feeding. Later that day we were transferred to CV Acute. When we got there, I inquired about the feeding situation and if I could nurse him. The nurse practiioner (NP) informed me that the orders from OT prior to the heart cath stated that no oral feeds should occur until his swallow study. Therefore an NG tube was needed for feeding that night. I was very upset at this point, for two reasons.  First, I disliked the NG tube because Alex doesn't need it - he can eat by mouth - and second, I couldn't nurse him. I informed the nurse that I was fine with an NG tube going back in but that a swallow study needed to happen on Friday because I was not going to want the tube over the weekend (just so you know, nothing happens on the weekends ).

Friday morning, I was informed that a Swallow study was going to be conducted. In addition, an ENT (ear, nose throat) consult would come assess him to make sure he didn't have any vocal paralysis. The results of the ENT consult and swallow study confirmed that Alexander has a weakened vocal cord, caused from intubation. Having this weakened cord could potentially cause Alexander to aspirate while drinking breast milk and that he had one episode of silent aspiration during the study. Therefore our feeding plan had to be changed.

Night before Heart Cath

Changing his feeding plan (even if it is temporary) is something I'm having a hard time accepting. the OT provided me with three options on ways to feed him. The first option was feeding him breast milk through an NG tube - this option was taken right off the table. The second option is to thicken the breast milk with rice cereal. However, this mixture must be consumed within 10 minutes because there is an enzyme in the milk that breaks down the mixture causing it to thin out. (Luckily, Alexander can consume a bottle in 10 minutes of less). The third option is to provide him with formula (blah!). OT also informed me that she doesn't want Alexander to be weaned from breast feeding completely because does console him. Therefore she suggested that I pump half way through before putting him to breast. Which I was pleased to hear.

I made the decision to use formula (if needed), to nurse after pumping, and to thicken the breast milk. I informed my decisions to my "favorite" nurse practitioner (the same one that told me I wouldn't be able to breast feed when Alex was born...). Well, when the night nurse came last night, she told me that the orders were to either feed Alex the thickend breast milk or use formula. In addition, that I was to only offer him the breast after I pumped completely and for a "non-nutritive" source- completely different from what the OT said!!!

This morning I attempted to get clarification about the feeding plan during rounds, of course my "favorite" NP wasn't working today. The current NP informed me that she would look into the situation and  make a decision but for now, only offer breast as "non-nutritive" source! After reviewing the orders, the NP told us that some of the information in the notes is unclear and that Monday would be good day to discuss with the NP and OT. For now, I am allowed to nurse Alexander after I've pumped half a bottle, three times a day. I'm so upset about this! I feel like I'm back to square one when he was a newborn and they told me I wasn't going to be able to breast feed. I'm missing the bond I have with him and there's nothing I can currently do about it! I understand their concern about him possibly aspirating, as I am too. BUT, I'm EXTREMELY frustrated that no one can get there notes/orders correct and instead I hear "let's wait and see" or "let me look into it" or "well this what the nurse practitioner's orders are, so let's wait for tomorrow". I'm really trying to just go with the flow so that we can get the hell out of here and then change things up when we get home, but when you keep hearing the same responses over the past 18 days-it becomes a little bit annoying and unsettling.

On a positive note though, Alexander is doing well from a cardiac stand point. He is currently not on ANY oxygen and hopefully it stays like that so that we don't have to go home on any! His voice is also starting to come back as well (from the second intubation). He's beginning to smile more and be the happy baby we know!

No Oxygen, no NG tube! :)

Prayers and positive thoughts are always needed for Alexander to stay strong, push on through and not need oxygen at home or another procedure for at least a year! :)

Also prayers are needed for his mommy to stay positive and not go off on the next doctor or nurse that says "let's wait and see," and for his daddy to be able to keep Alexander's mommy calm until questions are answered!