We are in full-blown hospital mode. Since our transfer up to 3 West things have hardly slowed down. After five days we are finally in a routine that goes a little something like this:
6AM: Brynn’s Food (fortify breast milk with formula, prime pump, attach pump). Try oral feeding to see how much she can take by mouth, put rest through tube (make sure to stop feeding before any air gets in her belly, flush tube with sterile water).
7AM: Nurses change shift. We burp and comfort fussy Brynn.
7:30AM: Nurse checks vitals; we change diapers and get Brynn dressed.
8AM: We administer morning meds through tube (aspirin, laxis, zantac). Brynn is examined by doctor before rounds.
8:30AM: Pump
9AM: See Brynn’s Food
9:30: Rounds.
10AM: Burp and comfort fussy Brynn while trying to pump and change diaper.
10:30AM: Hearting test (or another test)
11AM: Physical therapy
11:30AM: Occupational Therapy
12PM: See Brynn’s Food
12:30PM: Pump
1PM: Burp and comfort fussy Brynn.
2PM: Meet with a specialist (take your pick from Child Life Specialist, Lactation, Pediatric Nutritionist, Social Work, medical supply representative, etc.)
3Pm: See Brynn’s Food
3:30pm Pump
4Pm: Burp and comfort fussy Brynn.
5:00pm: Continue to burp and comfort fussy Brynn who did not tolerate her 3Pm feed. Change diaper, change clothes she just spit up on, possibly give her bath, change her diaper again, and put on more clean clothes.
6:00pm: See Brynn’s Food.
I will spare you the other 12 hours but can assure you they look startlingly similar to first twelve (minus the specialists). If you didn’t see anything about eating or sleeping it’s because we don’t really get much of a chance to do either.
Tony and I have been taking turns staying the night and relieving each other for a few hours during the day when we can (twice I’ve been here for 36 hours in a row and it wasn’t pretty). While we’re here we don’t get to go outside, see sunshine, taste fresh air (or fresh food) or enjoy many of the other comforts of life outside the hospital. We sometimes get cranky or frustrated with one another but try hard not to take out our exhaustion on the other person. As guilty as we feel leaving the other one behind at the hospital we remind each other how important it is to have a break.
On Thursday night we finally switched out of “The Quad”, one big room with 4 (yes, FOUR) babies and two nurses to a double room. After two hellish nights of non-stop babies crying and alarms sounding I put up quite the fight when they told us we might have to spend another night without sleep and sanity. Parents don’t usually spend the night in the quad, which I can understand given the indescribable amount of noise and commotion going on at all hours of the day. However, we were encouraged not to leave due to Brynn’s small size. I was not about to leave Brynn alone for the night without us but there was no feasible way I could tolerate another night in a 4x6 curtained-off personal hell. Luckily, the charge nurse was able to move some things around and we have been in a double since Thursday evening.
These days have been crazy, stressful, exhausting, and frustrating. They have also been invaluable in giving us the knowledge of how to care for Brynn when we get her home. Which is really the whole point of being up here. We have to learn to do everything the nurses do on our own. Both of us are feeling more comfortable every day with the typical baby stuff and are getting more at ease with the medical aspects. One giant hurdle remains: changing out the feeding tube. We are not allowed to leave the hospital until we learn how to put in her feeding tube. I am really struggling with this. When Brynn got her tube changed out in the pod she screamed her head off and was fussy and gaggy for the rest of the day. I can’t stand the thought of having to put her through that kind of pain again unnecessarily. I understand that she might pull out the tube and that we would have to go back to the ER to have it replaced (possibly at 3AM) but honestly I would rather take my chances. I’ve tried negotiating, pleading, and bargaining with the medical team but they are pretty dead set on making us pull out and put back in the tube.
I already have a love hate relationship with this stupid tube. I understand it is keeping my daughter alive. So far she is only able to take in 20-30mls by mouth 2-3x/day (a far cry from the 55 cc’s she needs 8x/day to gain weight). But I hate that she has to have it. I hate that we have to pump her full of calories 8x’s a day to the point where she can become incredibly uncomfortable and vomit from the amount of volume in her tiny tummy. I hate that I can’t just hold her to my breast and enjoy the comforts and bonding that feeding usually allows. I know that Brynn has to gain weight to survive her recovery and her next surgery. I know that the last thing we want is to end up in the hospital with a “failure to thrive” diagnosis due to an inability for her to gain weight. But I still hate the tube.
Please keep us in your prayers as we get closer to the huge and important task of learning to place the tube. We are hoping that it goes smoothly and causes Brynn minimal discomfort.
If Brynn has one more day of weight gain (we need 3 consecutive days to get out of here) we will be discharged on Monday. Ironically, this will be one day after my original due date. And, if she does gain weight again today and we are allowed to go home on Monday I guess I am going to have to thank the tube. J
Praying like crazy! When my third was born, I wasn't able to bring her home because she developped a serious MRSA infection at birth. She was in and out of the hospital all year, and we didn't kick the infection til the last few months of this year. I hated it, every minute, and I feel your pain from all the way over here. I am praying like crazy, I am so thankful you are who you are and that you are doing what you are doing, which is the right thing. Be at peace.... you are an amazing mother, and an inspiration!
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